Distinguishing Meltdowns from Tantrums
Show Notes for Embracing Autism Podcast — Ep. 208

Introduction:

Lia: In this episode, we will walk you through how to identify the differences between a meltdown
versus a tantrum, as well as tips on how to work through meltdowns and how to prevent them in the future.

Lia: Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice
and support while spreading awareness and acceptance of autism spectrum disorder.

Lia: I’m Lia.

Matt: And I’m Matt.

Lia: And each week we will discuss our journey with autism and talk about how to embrace your
child’s individuality while providing guidance, tips, resources, and sharing our personal stories. This is-

Both: Embracing Autism!

Matt: Hey everyone, welcome back. We’re going to call you the Embracers.

Lia: Yeah, we decided we’re coming up with a new, a new name for our little fans.

Matt: Let us know what you think on our Facebook page.

Lia: Is that degrading?

Matt: Or is it cringey?

Lia: Or is it cool? Actually, I’m a little cringey about it myself Embracers- or is it cool, I don’t know.

Matt: We’ll think about it.

Lia: Let us know the comments on this episode on our Facebook @AutismWish, be like yeah or no people please stop.

Matt: Gosh, we sound like the corny mom and dad.

Lia: We are the corny mom and dad.

Matt: Right, but like that’s-

Lia: That’s our life. That’s us.

Matt: Okay.

Lia: It is what it is.

Matt: So this episode we are talking about, what? All things meltdown, tantrum and shutdown, kind of all in one?

Lia: Yes, absolutely. For those of you who aren’t familiar with the term shutdown, because I know I hear a lot of people on the internet talk about meltdown and tantrum, but I rarely see shutdown. Shutdown is kind of like the adult version of a meltdown. Some autistic adults still do have meltdowns, but some experience shut down instead, which is more internalized rather than externalized.

Matt: I mean, I think quite literally like a computer just shutting down, blocking off the outside world basically.

Lia: Right. So what we’re going to talk about today is essentially three points to the process. So the first part is–

Matt: Identification I guess.

Lia: Yes, identifying the behavior. What is a meltdown? What is a shutdown? What is a tantrum? And then we’re going to kind of walk through how to navigate that when it is happening and then how to try to prevent it in the future. This is a topic that we are quite familiar with.

Matt: I was going to say I think we dealt with this at least once or twice just today this morning.

Lia: Yeah, it’s pretty frequent at least with the older one.

Matt: Right.

Lia: One of the questions that we’ve gotten very frequently in our live Q&A’s for those of you who aren’t familiar with it, we run a Q&A, what quarterly maybe, once a podcast?

Matt: Yeah usually as soon as we’re introducing the next season usually. I think we’re trying to do it more frequently just to kind of be in your face, live.

Lia: Hopefully not too much, but enough. So what we do is we do these like live Q&A sessions and in the last I believe like two of them that we’ve had this question continues to come up and the question is essentially how can I tell if my kids having a meltdown or if they’re having a tantrum
So it’s basically like do I punish them for like misbehaving or is this a place and time where I give them empathy and give them their space. How do I differentiate the two and what do I do?

Matt: And I actually struggle with that quite a bit too because I mean we have what we call what a three-nager.

Lia: Yeah, three-nager.

Matt: She definitely is sassy and has attitude and I mean your typical-

Lia: She could just be me.

Matt: In smaller form. But no I definitely struggle with kind of gauging like okay is this just your standard three-year-old tantrum or is this something bigger and so i mean it’s trying to gauge where does one leave off and the other one start. I think we had figured out that for what a tantrum it usually focuses on them getting whatever the end result is.

Lia: Yes, so that’s the main differentiator. When you’re looking at a meltdown versus a tantrum, the way that you can start to differentiate between the two is trying to identify the trigger. In some cases, what you’re trying to figure out is, is this like a sensory trigger? Is it a meltdown due to sensory ovedrload or is it a I want something trigger? With neurotypical children tantruming is very common when there’s something that they want that they essentially aren’t getting away with and that’s what will trigger that behavior. But with an autistic child typically it’s either a sensory component so something in their sensory environment triggered it either the lack of or too much of a certain sensory stimuli or it could be something like a routine disruption. When autistic individuals and children are very much so needing that structure and that routine with the day to day, if you disrupt that routine and they weren’t prepared enough for it, so perhaps they didn’t know that they were going to be going to grandma’s instead of to school that day, that in itself can trigger a meltdown. So that’s an indicator that it is actually a meltdown and not a tantrum. So just make sure when you do see that, the first thing that we advise is take a step back and think about what happened right before.

Matt: Right, and I mean we’ve seen our fair share of meltdowns in both of those categories. A disruption of routine before we realized that was one of the areas that became a struggle. We didn’t think that we had to create a schedule because we figured, oh, like they’re young kids, they’ll just kind of go along with whatever we’re doing for the day. But then we realized, no, it has to be pretty structured as far as the routine that we go through as far as breakfast, playtime, going out for activity, going to school, and whatnot.

Lia: What you can do is take a look at the behavior and look at what your child is doing in terms of what preceded the behavior and what happens as a result of that. Is your child behaving in a way that seems to be goal oriented? Does it seem like your child is behaving a certain way because they want a particular outcome? For example, they were having a snack and you told them that they could have goldfish and they said, no, I want pretzels. And then at that point in time you say,
well, we don’t have any pretzels so you’re going to have to have gold fish and then the meltdown happens at that point in time. Well then there you see the antecedent, you see what happened before and you see okay this child did not get what they wanted. Therefore, it is more likely that this is due to a tantrum and not a meltdown because it seems like it’s goal oriented. So a way that you can kind of test or check is give them the thing that they’re asking for and does the behavior stop at that point in time. If the behavior stops when you give them the pretzels, then that means that it was a tantrum. It was not a meltdown.

Matt: Now a meltdown would be you give them the thing and then they’re still melting down. They’re still on the floor or screaming crying, whatever. The item that they wanted didn’t resolve the issue. So it’s a larger situation at hand.

Lia: Or perhaps they didn’t even want an item and you’re just trying to encourage them with something that you think that they like, right? So if the kids melting down and you’re like ‘give them a piece of candy because he loves candy. Maybe that’ll cheer them up’. And they don’t want anything to do with that candy. That’s probably a big indicator that it’s a meltdown. It’s probably due to either sensory overload or routine disruption rather than a tantrum.

Matt: And we’ve seen that before like if our oldest is getting upset, and she’s in her carseat, if we’re trying to give her something, almost to like pacify her so we can actually buckle her up in the car seat, we’ll give her her like water bottle, which has like iced tea or something. Usually she likes iced tea. But if we give it to her, she’ll basically like throw it because it’s not doing the trick, that is not what her goal is. And that’s where we’re kind of like, okay, this is kind of a bigger task at hand. So we have to kind of use some other routine or other tips and tricks to kind of move forward.

Lia: Typically, when it comes to a meltdown, there isn’t really much you can do to stop it as it is happening and that’s a differentiating factor because with tantrums usually if you just give the child what they are basically asking for then the behavior will stop. But with a meltdown it will not. Tantrums need an audience. When a child is tantrumming they need somebody to know their tantrumming because otherwise they’re not servig a purpose, right? So the point of the tantrum is ‘I will behave this way because I can get what I want’. But if you’re tantrumming an isolation it’s not going to get you what you want.

Matt: Clearly not getting what you want.

Lia: Exactly. So that’s something that I’ve clearly noticed with our child as well is whenever she’s having a meltdown typically we put her in like an isolated space so that she can be safe and secure and make sure that she is not going to get hurt.

Matt: So the difference between the meltdown and the tantrum as well is with the meltdown they don’t really have much regard for any type of dangerous situation or potential injury that they could wind up in. As where like a tantrum if they are on the floor and they hit their arm for example they might shift over and start crying because they got hurt and because they have the audience of mommy and daddy, oh, they’ll cater to me because I’m hurt now. So just kind of shifts the tantrum a little bit, but when they’re in a meltdown mode, they don’t really care if they get hurt. They’re kind of fighting and kind of overwhelmed with whatever the situation is, and because they’re not really doing it for an audience, it’s the meltdown. So I think it is much more, it could be a much more dangerous situation, unless you put them in a safe environment.

Lia: So with tantrums, you essentially see that it’s coming out of a place of anger or frustration, and it’s basically just like this emotional outburst that they’re having. Whereas for an autistic meltdown, those tend to be a reaction to being overwhelmed. When an autistic person is melting down, during that meltdown, they don’t have any control over what’s going on. So it’s not going to really benefit them if you try to approach it like a typical tantrum. So if you try to just give them hugs or try to give them an incentive to behave or if you try to discipline it, none of those are going to be effective because at that time, at that moment, that person is essentially kind of checked out right now because they’re really overwhelmed with the stimuli or whatever it is that caused that meltdown. That is just something that they’re not going to be able to do during that moment in time.

Matt: And I mean, we have tried to– we might be in a store at when a meltdown happens. And typical to like a hug, you’re basically trying to carry them out of the store. So I mean, you’re holding them and they’re fighting, they’re dead-weighting, they’re doing whatever they can basically to get out of your arm. So it’s not like a simple hug and comforting will resolve it right then and there.

Lia: One of the first things that you should do during a meltdown is make sure that you are looking out for safety. So now that we’ve showed you how to identify between basically a tantrum and a meltdown, the next thing to do is if you do identify that it is in fact a meltdown, make sure that your child is safe and everyone around them is safe. Because I know that we have older children and people who listen here with older autistic children who may be what, 14, 15? And if it’s a 14, 15 year old autistic boy, it’s likely that that child is actually bigger than you if you’re a mother, for example. I’m 4’11. Any 14 or 15 year old boy would clearly be a potential threat to me if they were violent and aggressive. So one of the first things you want to do is just ensure that everybody is safe. And one of the ways to do that is by trying to create a safe space for your child where they can go to during this time that will give them this kind of zone, like a Zen zone, if that makes sense.

Matt: Right.

Lia: And if they are not able to control their behavior at that time, at least it provides a space where that person is safe. You can have sensory equipment there, you can have whatever their special interest or whatever it is that they have that provides them comfort and just have them kind of isolated from the person that they are potentially harming just to make sure that there’s no clashing going on.

Matt: Right, because our kids are I mean much younger– I mean we have three and two year old. So I mean one of the things that we’ve noticed is when our older one is having a meltdown, she loves music. So if we’re able to start playing music,it’ll start to slowly pull her back a little bit. I mean, she’s still having a meltdown, but sometimes it’ll kind of pull her back a little bit where we’re able to kind of get her into a better state of mind as well.

Lia: And some places they advocate for restraint. And I am not really a big fan of restraint with, I guess, one exception, which is unless your child is the type of child who likes that sensory input. So like our youngest child, she loves being held and squeezed and that provides her a lot of comfort.

Matt: She’ll go up inside your shirt.

Lia: Oh yeah!

Matt: So I mean, she’s looking for like little places to like nuzzle.

Lia: Yeah, she literally crawls into my shirt and pokes her head out of the hole of the head of the shirt.

Matt: She’s with mommy.

Lia: Yeah. But what I would say is steer clear of any sort of restraining system or anything like that. If you feel like you’re in physical danger and your child is just too big for you to handle, then in that case, I would say call in support to help you or just you isolate yourself until they are able to go and process their meltdown. But if it’s a younger child or even an older one, have them have an area that is their safe space. So at all times have some sort of sensory room or some safe nook that is always available to them so that they are able to go there. And when they’re having moments that they’re not in a meltdown practice going to that room and doing the instruction of when I feel this, I go here. It might help to have social stories to back that up. It might help with some sort of visual schedule or some sort of system to help them process that before the meltdown happens.

Matt: This is something that you’ve also been working during a meltdown as far as kind of regulating the breathing, kind of slower pace, kind of calming, pull her back a little bit. So I mean, it’s not like she is increasing her heart rate so she’s like in that fighting mentality. It kind of calms her down so then it kind of gets her into more zen, I guess, as you were saying, mindset. So I mean, that is, I guess, one way that we, I mean, it’s still an ongoing process, but I think that that is a very helpful way if you’re able to kind of start making those transitions as well.

Lia: Exactly. So that’s part of developing a calming routine. So whatever works for your child, you know your child best. And like I said, not every autistic individual is the same. Every autistic person is still a person and is very different just like we are very different from each other. So I would always encourage that you custom tailor whatever it is to your child’s specific interest and their specific sensory needs. If your child is like mine, and needs a lot physical sensory input, the youngest one. Then that one, I do give her the cuddles and hugs because that helps her. My oldest one is the complete opposite. My oldest one does not like sensory input of touch. So when she is having an autistic meltdown, the best thing for her is often times to put her in her safe space with her lights, because she really likes LED lights. She really likes a lot of stuffed animals and things just cuddling her that are not humans. She doesn’t like humans. And just provide her that space and give her her space because she is way more likely to be able to self-regulate if we’re not interfering than if we’re constantly trying to give her a hug or trying to like hold her hand or anything like that.

Matt: Right and that goes in line with I mean obviously you’re saying very different kids for different things. Being aware of their sensory needs so you’re not actually creating more of a problem and putting more sensory overload into the situation, try and pull it back. So obviously in our situation, eliminating the pressure of like a hug from like us or something that would just add kind of fuel to the fire essentially.

Lia: If your kid is dysregulated because of overload, the last thing you want to do is add more sensory input. You’re just like you said, adding fuel to the fire at that point. So again, this is very, very important that you custom tailor this to your child and don’t just take any of our tips and just think that it’s a blanket statement because it’s not every autistic person’s different, everyone needs different things. So make sure that you’re listening and observing your child. Watch for what happened. Watch for how they’re reacting. See if you can gauge any sort of pattern. See if you’re able to basically find what the triggers are so that you can eliminate those if it is in fact due to sensory. And the most important thing that you can do during the situation is make sure that you as the parent stay as calm as possible because if you are disregulated, if you are anxious and stressed and angry — which is very easy to do I can’t tell you how many times this stuff sets me off because they trigger my auditory stuff when they’re screaming and crying. It triggers me. So I 100% can understand that. But I teach my children when they’re having a meltdown to smell the flower, blow the flower. And that’s the way that I’ve taught them to do a deep breathing exercise to help self-regulate. And they’ve started to pick up on the smell the flower for inhale, blow the flower for exhale. So when we are teaching our children these tips and tricks and giving them these tools. It would be completely hypocritical of us if we didn’t follow them ourselves, right?

Matt: That’s fair. Smell the flower and blow the flower Lia.

Lia: Yeah, better do it. But in all seriousness, I do catch myself and I’m like, you know what, as frustrated as I am right now for the sake of my child, I need to just self-regulate, I need to take a moment and if that means you need to leave the room or whatever it is that you need to do to make sure that you are not going to be overreacting to your child and again, adding fuel to that fire — do that. Because it’s important that we stay calm and it’s important that we stay zen because how is our child’s going to get to a zen state if we are not.

Matt: And there’s been times where we’re out in a bookstore, a Walmart, wherever, and a meltdown will happen. And I mean, yeah, we could get extremely frustrated and grumpy as we’re taking them out of the store or we can basically just pick her up, be calm, quiet, walk straight out of the store and basically work through the tantrum outside of the store. I mean, just so there’s not screaming in the store and in kind of in a calming place. So I mean, I’ve kind of gotten in the attitude of like, okay, we’re just having a tantrum, like we will address it as soon as we get to a better place that is kind of a more peaceful area that we can actually like work through it.

Lia: And don’t, don’t care what people say.

Matt: And that’s my thing too. Like I’m not worried about the stranger in the aisle over who over here’s my little girl’s meltdown. Like I don’t have to interact with you. I don’t really care what you think or have to say. I’m just walking to get my daughter into a better peaceful area and we can work through it on our own time together.

Lia: I know sometimes it’s hard to deal with the judgment and the shame and everything that comes with parenting a meltdown at the time and people just don’t understand so just don’t let it get to you because most people don’t know what’s going on and you know to each their own we are living our life we’re doing what’s best for our child we’re making sure that she’s safe and she’s okay and she’s able to self-regulate and at the end of the day that’s what matters right you and your family so don’t care about what other people will say or if they’re whispering or staring at you and just focus your eyes on the prize which is making sure that your child is as comfortable as possible and that she is able or he is able to self-regulate when needed.

Matt: Well, I was gonna say and the other what 90+ % of people who don’t have any knowledge of what autism is. I mean, let them talk. I mean they don’t know what they don’t know so it doesn’t matter.

Lia: Exactly and that’s very similar to shutdowns which happen with the older kids sometimes. So the shutdown similar to the meltdown except it’s more internalized. So you’re not going to see something that looks like tantrumming. Instead, you’ll see somebody might isolate. They might not want to talk because they might have selective mutism or they might just want to get away from any social interaction whatsoever and just lock themselves in their room. It’s kind of like a, ‘I’m trying to prevent a meltdown therefore, I’m going to isolate and shut down instead’.

Matt: You’re taking the steps necessary beforehand to kind of limit the stimulation of the sensory world, I guess. I mean, I’m imagining that when you’re shutting down, you’re trying to find a safe space on your own and working through it that way.

Lia: It is kind of like working through the meltdown before the meltdown happens. It’s kind of like it is a self-regulation method. So instead of having like the child smell the flower, blow the flower, it’s kind of like a shutdowns an internalized way of regulating a meltdown from happening, but it is still basically in the family of a meltdown. That person is still struggling at a moment in time. So when it comes to those, if your kids older and you’re able to communicate with them, I would just recommend asking them if they know if they are able to communicate it, ask them, what do you need when this happens? Do you need me to be with you? Do you need me to stay away from you? Do you need me to provide you with X, Y, and Z? What is it that you need when this happens? And then just try to accommodate those needs.

Matt: And I was going to say kind of the same rules apply, trying to read the situation. I mean, if you’re able to have the conversation with them, if they are older and able to communicate with you, you can kind of ask and figure out exactly what they need to try and get them into a better state of mind. So you don’t want to add additional fuel to the fire, like down like we previously mentioned with the meltdown.

Lia: So just all in all, this is just basically us trying to explain the differences for you and we hope that this is helpful. The reason that we think this is really important is because I have personally seen and I know Matt you’ve seen that a lot of parents of autistic children tend to isolate themselves and their children due to meltdowns and I think that that’s something that makes sense to happen as a reaction. So you might be embarrassed or it might just be too stressful to bring your child out and a lot of times what happens as a result of that is parents just say you know what then we can’t go out anymore we’re gonna stay home we can’t go to the playground we can’t go to the store we can’t go to any of these places because my child will meltdown and so I basically highly encourage that you continue to attempt to do these things and go out with your child because you don’t want to deprive your child of a quote unquote ‘normal’ life as much as possible you don’t want to stop taking them to the playground to church to the store if at all possible. So instead I would recommend that you try to see what these triggers are and anticipate them in advance and try to provide them with the necessary accommodations before it happens so that you can try to prevent the meltdown from happening.

Matt: Yeah, I think it kind of, I mean goes kind of to a negative place when you start giving into the fear of the meltdown because you are limiting yourself from society. Oh, we can’t go to the playground because he might have a meltdown. Oh, we can’t go to the store. As soon as you give into the the psychology of we can’t do this because of the meltdown, it’s kind of a losing game because it’s going to keep building and building and building. If these kids aren’t exposed to society because you’re afraid of the meltdown happening, it’s just going to become a bigger and bigger and bigger spider, I guess, in your life. And then when it does happen, that would be just a reason of, ‘oh, that’s why we can’t go to the store’. So I mean, I would really push against the mentality of I can’t do something because they might get upset and have a meltdown.

Lia: And then on top of that, it will add resentment towards your child. Like you will start to feel resentment. Be like, I can’t go anywhere because my child is always melting down. And that sort of negativity and that sort of mentality can end up being extremely toxic. And it can end up breaking those bonds that we’re trying to build with our children. It can even impact your marriage or your relationships with others because it is going to basically influence your day to day life.

Matt: And I mean, they might also surprise you. Like, I mean, we were surprised morning. We took both our kids to the playground, basically as soon as it opens, so they can have full range of everything. And usually our oldest, whenever it’s time to transition from playground to going driving to another activity or whatever we’re doing on the weekend, she would get upset. She would have a total, start of a meltdown because she didn’t wanna leave. But today she was actually okay, just walking to the car and she was comfortable hopping into her carseat.

Lia: And for us, it’s a win, right? So if she has a meltdown n9 out of 10 times, that one time is still a win and that one time is still worth continuing to do it because every little win is progress. It doesn’t matter how slow that progress seems to me. It’s still progress.

Matt: Right. I would always focus on the small victories because they add up over time. So stay positive, stay focused on that versus living in fear for what may or may not happen.

Lia: Yes. And just a few tips to wrap this episode up with. When it comes to the meltdown, if you’re
seeing that it’s due to a transition, find ways to make transitions easier. That could be through a visual timer. That be through an audio timer like a song. You can play a song and get them used to the routine of when this song is over. That means our time is done. It can be with a countdown. We’re going to be done in three, two, one. Of course you give them a five minute warning, one minute warning before that, but you can start making transitions easier by giving them predictability and routine. And so if that’s the reason why you’re having them meltdown, that is a way to basically help prevent that. If it’s sensory overload, try to find a pattern. When is this happening? Is it always happening when we go to the grocery store? What’s at the grocery store? Oh, they have lots of fluorescent lights and they are being visually overstimulated. Now I know next time I go to the grocery store, I’m going to bring sunglasses and offer my child sunglasses. So just things like that. It’s really all about observation. It’s almost scientific in the sense that you’re producing a hypothesis and you’re testing it through observation, right? So hypothesize what is it that you think is causing it? Test it. Go to the store. Give them the sunglasses. Did that fix the problem? If it did, then that means you found a solution. If it didn’t, you start with a new hypothesis and round and round it goes.

Matt: So you think of yourself as a scientist. I think of myself as a detective trying to solve it.

Lia: There we go. The science is a detective.

Matt: Either way, either way, we basically get to the same result.

Lia: Exactly. So I hope that this was helpful information. I hope that you guys learned something and just remember at the end of the day, it’s all about having patience and empathy and understanding and basically being willing to make the accommmodations necessary to make sure that your child is feeling comfortable, happy, and themselves.

Matt: Alright, we’ll see you next time.

Lia: See ya!

OUTRO

Lia: To summarize, a tantrum is distinguishable from a meltdown in that it is goal oriented while a meltdown is typically due to sensory overload or routine disruption. During a meltdown, a safe space can bring comfort and protection to your child until it subsides. We also discussed how anticipating a meltdown and providing necessary accommodations beforehand can help prevent sensory overload. Join us next week as we talk about all things transitions. We answer questions such as, what can I do to make a transition easier for my child? How can I help my child enjoy holidays if they’re too overwhelmed? And how do I prepare my child for travel? This is Embracing Autism.

Understanding Aphantasia
Show Notes for Embracing Autism Podcast — Ep. 207

Introduction:

Lia: Join us today as we explore what it means to have aphantasia, how it relates to autism and how it may overlap with the other senses.

Lia: Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice and support while spreading awareness and acceptance of Autism Spectrum Disorder.

Lia: I’m Lia.

Matt: And I’m Matt.

Lia: And each week we will discuss our journey with autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources and sharing our personal stories. This is —

Lia & Matt: Embracing Autism!

Lia: Hello, hello. Welcome back, everyone.

Matt: Here we are, again. Take two.

Lia: Or three or four who knows how many takes it takes us at this point.

Matt: Alright.

Lia: So today we’re going to be talking about aphantasia —

Matt: Aaaay!

Lia: And I don’t think pretty much anyone knows what that is.

Matt: We do.

Lia: We didn’t even know what that was though.

Matt: But we do know we do now.

Lia: So we will guide you on this tour.

Matt: Aphantasia is the word of the day.

Lia: Spell it.

Matt: A…

Lia: No cheating!

Matt: Actually I have it written down, but it’s how I spell it — so it’s wrong.

Lia: Okay, I want to know how do you spell aphantasia?

Matt: Haha No, it’s too bad.

Lia: Okay, we’ll move on, we’ll move on.

Matt: I’m not a speller or a reader.

Lia: I’ll spare you. So the reason we decided to talk about aphantasia is because in an earlier episode we talked about synesthesia, and Matt was able to give his fun little story.

Matt: So you can take the baton now and give your fun stories.

Lia: That’s true. So Matt had a really fun, interesting story about his experience with synesthesia, and synesthesia was found to be associated with autism. And We later discovered that aphantasia which is kind of in the same realm or family is also found to be associated with autism. And what’s interesting is that I actually believe I — I may have aphantasia, pretty sure.

Matt: Strong possibility.

Lia: Pretty sure. I don’t know that I could deny it if I cannot —

Matt: Some of the visualization tests we’ve gone through.

Lia: So for those of you listening who have never heard of aphantasia, first of all, you’re not alone, we had no idea what this was and it only came up because I was trying to do some sort of like meditation exercises like those visualization exercises, and I could not do it.

Matt: How did that work out for you?

Lia: Well, so aphantasia, just to explain it for people, it basically is when visual imagery is either absent or significantly impaired and it doesn’t necessarily mean in all situations. So sometimes you can be somebody who experiences aphantasia and still be able to like vividly and lucidly dream. But just in like your conscious awake mode, you’re not able to kind of picture things mentally.

Matt: Well, just because it kind of would touch on different senses. It’s not just the visualization, it can also tie in a little bit to like sound as well as also like smell, I think, because I was thinking about that the other day as I was in a grocery store shopping, and I was going down like the pet aisle, and I saw kitty litter and then I was thinking like, oh gosh, like kitty litter —

Lia: Where’s this coming from? Kitty litter?

Matt: No, but like no. And I was thinking in my mind, I was like, Oh, the smell of like kitty litter after like the cats like do their business.

Lia: What?

Matt: No, but like it like like smell.

Lia: Let me get this straight. When you go to the grocery store, you start having lucid fantasies about the smell of kitty litter?

Matt: Well just because it’s it’s like repulsive. So it’s like, as I’m like pushing the cart, I see the kitty litter, I’m like, ah, that’s why we don’t have a cat. Just because of the smell of the kitty litter and when the cat does its business, it’s not a pleasant smell. But I remember from my childhood-

Lia: So you are imagining it in your head?

Matt: Well I was able to imagine the smell of it.

Lia: Ooooh, okay.

Matt: That’s my whole point of the last rambling I just went on, I was able to visualize — or is it visualize if it’s smell?

Lia: So I don’t, I don’t know, I don’t know what the word for that would be smell-arize?

Matt: But yes.

Lia: So because aphantasia, it’s primarily the absence of the visualization, but they also say that there’s like an association with smell as well. And I think they said hearing but it’s kind of like when you can remember sounds or you can remember smells and when somebody tells you imagine you’re at the beach and you hear the waves crashing on the shore, and you smell the salt of the sea, most people are able to do that. And those who have aphantasia are not able to.

Matt: Right, and that was one of the exercises that we had actually gone through and we were kind of comparing what you kind of experienced versus what I experienced, and they didn’t really line up or they weren’t the same as far as the visualization process.

Lia: Studies have been looking into both aphantasia and synesthesia, and of course, we discussed the synesthesia’s links has been found. But they also found that aphantasia is very strongly linked to imagery as well. So it’s kind of interesting because both of them actually are both synesthesia and aphantasia. It makes sense with synesthesia, because if you were able to visualize colors, it would make sense that that would go on with the visual imagining part.

Matt: Yeah, I think would kind of be like similar, but also kind of on opposite sides of the equation.

Lia: Yeah. So what the studies basically say is that those that are diagnosed with synesthesia, or aphantasia visual imagery is not actually necessary for these disorders, I guess you’d call it to occur. I’m not sure if it would be considered a disorder, probably.

Matt: Yeah, I guess I’m not sure. I mean, because I think it would tie in a little bit with your memory, because whenever, like when we’re going through the exercise, and he’s basically saying, oh, think of a beach that you’re walking on, you hear the waves crashing, you bend over, you pick up a seashell, what color’s the seashell that you’re holding — I’m able to kind of relate back to like, like a memory of whatever beach I had gone to last or the best image I have of a beach. But if you don’t have that component, I’m wondering if that also kind of ties in with your memories as well, because you’re not able to recall them, able to like visualize what you had previously seen.

Lia: In my experience with aphantasia, I can definitely say that it definitely definitely impairs my memory of things, because it’s very hard for me to remember things. So it must be associated.

Matt: I think of the perfect example was the other day when I was at work, and you were texting me because you couldn’t find your iPad. And then I text you back, I was like, oh, have you checked all these places? I was like, oh, try the top drawer on the nightstand because I remember I was able to visualize myself putting it in there closing it to kind of keep it out of the hands of our little ones running around and knocking it over.

Lia: And I actually did read a lot of studies, you just triggered a thought, because I do remember reading studies that basically say that those who have executive dysfunction, aphantasia or any other sort of mental imaging incapacity, those are people who tend to lose things more often because you can’t recreate the visual component of that. So if you can’t see the visual steps happening in your head, then it’s hard for you to recreate that in real life, and then follow those steps back to where you are.

Matt: And that’s exactly what I do. If I misplace something I try and sit down and then I try and run my memory back of like my visualization — what have I seen where was the last time and trying to like catch up? I mean, obviously —

Lia: That’s crazy to me that you can do that.

Matt: But do you have the moment like when you actually find it, and you didn’t think it was there where you have the “Ah, okay, I remember it”.

Lia: No.

Matt: Okay. So it’s like, there’s like a gap in you’re memory — or at least for me — there’s like a gap in my memory. So I think of like the last place it was and I go there and it’s not there, then if I find where it actually is, then suddenly, I have the “aha” moment in my mind where I’m like, oh, now I see myself basically putting it down in this place. But I had otherwise forgotten that that was the last place.

Lia: And this is why a lot of times kids who are autistic, they will also forget where things are and it can be very much related to this visual memory or perhaps they may have aphantasia, because if you can’t visually memorize or picture where the item is, it’s very difficult to recall it from memory. And I know for me, like you just asked me like, if I find it, is it like an aha moment? For me, no. When I find it I’m like, how did this get here? Like, I’m like, did somebody put this in here? Like, I mean, come on, let’s be honest. Every time I find something, do I not say, did the girls put this here?

Matt: That’s true.

Lia: But I guarantee you if there were security cameras, it was me. Like I probably did it. And I just can’t remember that.

Matt: But that’s interesting. And I’m actually I mean, we’re kind of learning about it right now of how it relates in real life kind of on the spot. It’s just kind of funny.

Lia: Yes.

Matt: I mean, in our personal life, I mean, obviously, like, it’s not like a laughing matter, just how it relates to us —

Lia: It kinda is.

Matt: But just how it relates to this, how it relates to like us losing things.

Lia: That’s what’s funny, like, I mean, it’s not funny when it’s happening. Obviously, I get very overwhelmed and stressed but after the fact, after we do the whole flip the house upside down to find my cell phone that I lose like, what, 10 times a day? Then it’s funny, because I’m like, oh my gosh, I can’t believe I lose my phone so frequently.

Matt: And then we play the “not it”” of who gets to clean up the mess.

Lia: Yeah, you’re always it.

Matt: I know.

Lia: But so aphantasia, the reason it like fascinates me so much is because it’s just very interesting to me personally. Not that you can’t see things, but that everyone else does see things in there mind’s eye.

Matt: Well, I mean, it is definitely interesting how it overlaps with the different senses. and it’s not just a visual component. It’s sound, smell — I’m not sure as far as touch. But yeah, I just find it interesting that it’s basically like a blanket over most of the senses.

Lia: What’s really interesting to me is that these studies are starting to see a correlation between those who have they call it aphantastic — I don’t know if I’m saying that right, but it’s spelled aphantastic — so you know, like how somebody is autistic. So someone who experiences aphantasia is aphantastic, so that’s kind of cool. It’s like I can just say, Hey, I’m aphantastic! But they find a strong correlation between aphantastics and Autistics, which makes sense because they’re basically saying that aphantasia can also relate to weaknesses in both imagination and social skills.

Matt: Which pops up I think overall with the social element that we’ve experienced with our kids where that link is, I’m not sure if it’s necessarily missing, but they don’t understand the social interactions with peers.

Lia: And then when they say that it’s associated with a weakness in imagination and social skills, I think what they mean by that is sometimes when it comes to socialization, you need to imagine a scenario to be able to know what to do next, if that makes sense.

Matt: Well, it makes sense with our daughter, because when we had gotten her the dollhouse, she was only able to play in the way that we had shown her that she was able to play so she’d have a little doll and she would take it up the stairs and go into the bathtub, I think that was the activity?

Lia: Right.

Matt: But then it was that doing that over and over up the stairs into the bathtub, then again, up the stairs over the bathtub, it was never Oh, I’m gonna go into the kitchen, I’m gonna go into the bedroom, it was always the same repetitive task. So I’m not sure if because she had seen that, that was the only way that she was actually able to play.

Lia: Aphantasia when they explain what that experience is like, they basically say that when you’re asked to form an image of a person you’re familiar with, for example, the standard typical person can basically see it within their mind. So you can see a visual and have a mental experience of that thing in a similar or near similar way that you would in real life.

Matt: That’s fair.

Lia: So if I told you to envision your child, what do you see?

Matt: So I see basically my perspective, as I’m at my desk at work, I have kind of like a bulletin board next to my computer. And I have a picture of my oldest daughter, where she’s kind of like leaning up against me with kind of her hair down and like wearing with a backwards baseball cap. So I’ve got that image of my oldest daughter, and then my youngest daughter is her sitting at her highchair with like a big smile, and like her little hand that she’s eating like a quesadilla and has like a bowl of peas. So I mean, I think that those are the images that come to mind, because I’m at my desk like 40 hours a week.

Lia: Are you though? I’m just kidding.

Matt: No, no, definitely not. But I think that is probably why because I’m seeing those images of them, probably — I mean, I have other images or pictures on my desk — But I think because I see those the most, I think that is the most referenced memory of them in my mind, if it makes sense.

Lia: See it for me, if you tell me to imagine my child, I have a really hard time A) pulling up a picture and B) keeping the picture. And even when I have the picture, it’s usually very blurred or doesn’t have many features. So when I think of my oldest child, I basically see what you would probably see as like a ghost in a way.

Matt: Always a good start.

Lia: Well because —

Matt: Creepy!

Lia: It is creepy, don’t tell me to picture my child. It’s basically just like a grayscale. So it’s like I see her wearing like a white gown, which is weird because she doesn’t wear them, it’s seriously like a horror movie.

Matt: No, I just I just had the image like, Okay, if our daughter goes missing, and you have to describe to the police what our daughter looks like.

Lia: We’re done, we’re not going to find her.

Matt: Okay, do we see any kids like in Ghost outfits on the street?

Lia: I’ll be like, the kid from that horror movie, that one, that’s ours. But I picture like her standing with her arms to her side, a gray gown, and then the face to have no facial features whatsoever, like nothing, it’s just her skin tone is like a gray wash. Like it’s not even like white or pink. Or it’s just like gray like it’s a gray, white wash.

Matt: So I so I will say when I see an image or when I see an image in my mind, it’s not a crisp, perfect image of whatever it is. It’s essentially if I’m wearing glasses that are slightly out of focus, I know what the image is, I know what it should look like. But when I see it in my memory, it’s slightly kind of blurry and I don’t have like the the sharp features that I would have. Or another way of thinking it is if I take a picture and I put it under water out of the water will kind of go over top of the picture. That’s kind of how it is my memory. It’s not a super sharp image. But it’s enough to recognize what the ultimate end image is. I guess if that makes sense.

Lia: See, for me, I think what I am doing is I’m finding a representation of it, but it’s not actually it. And it actually rings a bell now because I have read some stuff on Temple Grandin — she’s like a super famous, she’s an autistic adult who’s an advocate and all this and she’s very famous for autism advocacy work — and she had written a book that’s about thinking in pictures because that’s how she thinks and her theories that other autistics do as well. That’s debatable, but at least for her, that’s how her mind works. And the way that she thinks is like if you tell her to picture a steeple, she pictures a very specific steeple that she has seen in her life. So it’s not like a generic church steeple. What I think that’s interesting is with my experience of aphantasia, I experiencee kind of like the reverse of that. So like, instead of seeing a very specific steeple that I’ve seen in reality, I get a very vague generic thing that I have never seen.

Matt: So like something you would have Googled, like a steeple, and like another country that we’ve never traveled to?

Lia: No, like, how I just explained the visual of our first child.

Matt: Okay.

Lia: like I envision —

Matt: You create your own new steeple?

Lia: Right, like I created a picture of a child with no face features, grayscale, and all this stuff. And our child doesn’t actually look like that. But it’s a child.

Matt: Is that with all images that you do that? I’m just I’m just curious.

Lia: I’m actually now realizing that probably, yes.

Matt: Like if I’m saying, picture a mountain, like, are you creating the mountain or —

Lia: Yes, like, if you tell me to picture a mountain or a sunset, a beach every single time I picture that I picture the same template. So like, I can’t really alter it to look differently. And it’s very difficult for me to keep that picture in my mental focus. So if you tell me to picture a sunset, I struggle to bring up the sun and when I can finally bring a sun, it starts off all black and nothingness. And then when I finally bring up the sun, as soon as you tell me like, Okay, now picture a mountain view behind the sun, I cannot then pull up the mountain view and keep the sun I have to like choose between the two. because it’s such a mental effort to get any image whatsoever.

Matt: I think I’m getting what you’re saying it’s similar in a way. So if you tell me to picture, the sun, the sky, all that, but then if you say, Okay, think of the mountain now, my viewpoint, my perception, it’s focusing on the mountain, so the sun is still there, but it’s kind of faded into the background. And as you’re throwing more things, whatever was previously given is further kind of buried.

Lia: And I can’t do that.

Matt: Okay, so if you if you say, Okay, think of a sun in the sky, and then a mountain in front of it, and then a log cabin. So for me, the log cabin is the closest thing that I can see. But I still know and kind of see the mountain in the sunset still behind it. But obviously, the main focus is on the cabin, because that was the most —

Lia: — recent thing that was said.

Matt: — recent information that was provided.

Lia: Right, and that’s normal to be able to recall things more recently in more vivid detail. But for me, I’m lucky if I can picture the first step that you give me like if I am told to picture something, I’m lucky if I can just even picture that. If you want me to move on from that step. Like forget about it, I can’t.

Matt: It’s just interesting that you kind of recreate kind of you were seeing like a template for whatever it was, instead of trying to reference something that you had previously seen. I mean, cuz sometimes, like, yeah, you haven’t seen something so you’ve got to use your imagination. But it’s interesting that you would almost choose to I mean, not maybe it’s not, I mean, obviously, like a choice.

Lia: It’s not really a choice, it’s subconscious.

Matt: Right, well, I just have like the image of like, almost like in a Word document, you like creating a sunset. And then you have like a little —

Lia: It’s like very mechanical.

Matt: Right.

Lia: It’s not like it’s authentically happening and I’m experiencing it and this is an experience that is happening to me, it’s more like I am happening to it. I am trying to make it happen.

Matt: And then you have like a little paperclip guy come over and say it looks like you’re trying to create a sunset, do you need help?

Lia: And no, the problem is I don’t have that guy. And that’s the that’s why it never gets done. It’s more like I’m sitting there waiting for his message and I’m like, where‘d he go?

Matt: Windows 95 or 90. I don’t even remember what it was.

Lia: I don’t even remember because I’m a Mac girl.

Matt: There we go.

Lia: What’s cool is I ran into this study, and they basically had a bunch of participants that were shown three images of a living room, a kitchen and a bedroom. And they were each asked to draw each one from memory. And what they found is that their drawings were basically objectively reviewed, they had a ton of people looking at this. And then what they found was that those with aphantasia found it difficult to draw an image from memory because they can’t summon the pictures in their mind’s eye. What’s really funny to me about that is, I grew up in a ton of art classes, because my family is very artistic. So I’ve always been very much into art. And the one thing that I could never understand and now suddenly makes a ton of sense to me is I could never ever draw anything from memory or like from my mind, like I couldn’t create artistically from a vision that’s in my head and put it on paper. I could create fantastically from something in front of me. So if you give me picture I can do a pastel drawing of it, I can paint it and I can replicate it pretty well but I can’t draw something from my head and put it on paper when it comes to images.

Matt: That makes sense to me. But I’m trying to think like for me like obviously I’m not an artist but I will always was interested in like geography so like as far as like recreating maps, I cannot recreate a map for memory like if I’m trying to draw like the coast of like Canada or something. But if I’m looking at like a picture of Canada, I can like draw the geography so but I’m not sure if that’s the same ballpark or is that totally different?

Lia: I would say that’s totally different because that is you recalling very specific detailed information on geography like that’s, that’s really hard to do. I don’t think a lot of people could do that.

Matt: Okay.

Lia: Could you out of memory, just draw an outline of like the state that you live in? Or like something that you’re more familiar with.

Matt: Okay.

Lia: Because it’s all about things that you actually are very familiar with, or you know but you just can’t pull from your memory to put onto a visualization or anything like that.

Matt: Okay, that makes sense. I probably do that, I gotcha. Sidebar.

Lia: So what was interesting is the study is that the participants that did have aphantasia, whenever they could not recall the image, they showed that they actually recall that the image was supposed to be there, but they couldn’t remember, like what it looked like. So for example, if they were remembering that there was supposed to be a bed, then what they would do is they would just write down the word bed, or if they knew that, oh, this is supposed to be a chair, they would just write down the word chair, because they couldn’t recall the image. But they could recall that there was supposed to be that there.

Matt: They are aware enough in their memory, that they’re able to recall that it’s there, but might not know exactly what it looks like. I mean, I think that’s fair. I mean, that’s probably better than I could do what I mean I’m not an artistic person whatsoever, so I mean, I feel like that’s half the battle.

Lia: The study’s basically indicating that those with aphantasia can use strategies like verbal representation, instead of visual memory to be able to recall information, that means you can probably help accommodate that need. For instance, if you do discover your child may have aphantasia or struggle with aphantasia, that would be a great accommodation to put in like an IEP or something and say, Hey, instead of having them have to visualize something, why not have them have to recall the word for it or something like that, because it’s written verbal instead of image.

Matt: And I think, once you’re aware of what it is and how to kind of work around to get the same result. I think that is something that’s very doable.

Lia: Ultimately, what the studies indicate is that those who’d have aphantasia have a normal spatial imagery ability, because they were able to remember where things were located in the, in their mind from, like the painting that they’re trying to do basically, they just weren’t able to represent things very specifically in terms of imagery related memory tasks, which is why I can’t visualize where my keys are.

Matt: That’s where we get the little like thing that beeps where you can find it.

Lia: One of these days, we’ll have to get one. I just thought it’d be really interesting to talk about aphantasia because I feel like it’s one of those things that if you are like me, or your child is like me, you might grow up your whole life and have no idea that you even have it because who talks about how they visualize things. I didn’t realize that I had an inability to visualize things until I started trying to do some meditation and tried to do some like self care. I didn’t even know that was a thing because it doesn’t come up in conversation.

Matt: Well the same thing is too is, you still have images when you’re dreaming.

Lia: Yes. So lucid dream very vividly.

Matt: So someone who’s able to lucid dream, you wouldn’t necessarily know Oh, I can lucid dream, but I have a hard time visualizing when I’m awake.

Lia: Yeah.

Matt: You wouldn’t necessarily think that I mean that.

Lia: Well, and I grew up my entire life thinking that that’s how everyone else visualized.

Matt: Right because you have no reference point because you can’t —

Lia: Yeah

Matt: — visualize what someone else is visualizing. So I mean, it’s your own experience.

Lia: That’s like the “Inception” of visualization.

Matt: Right, so that’s basically like, you don’t know what you don’t know.

Lia: Right, exactly. So like growing up my entire life up until — what this year? I basically thought everyone else saw things the way I did. I thought that when people said that they were visualizing something I thought that they were just pretending in a way. I mean, I don’t know how to explain it. I just thought that people were going through the routine of yes, I’m picturing a beach. Yes, I hear the waves crashing. Yes. I just thought that people just did it. I don’t even know why.

Matt: I don’t mean to laugh, but I’m just thinking of us sitting you know, where they have like those like psychics that are trying to hypnotize you?

Lia: The couch where they’re…yeah.

Matt: Where they’re like, Oh, you’re becoming very sleepy. And then they like walk you through?
Lia: Yeah, like meditation? Yeah.

Matt: Right I just have that vision of like, you just like sitting there, like, twiddling your thumbs.

Lia: That’s exactly what I — that’s what I go through. I literally, I always feel like either I feel dumb because I must be doing something wrong because this isn’t working for me. Or I was like, maybe this person doesn’t know what they’re talking about and this is bunk. But then there’s so many studies supporting that type of therapy and stuff that I was like, something’s wrong.

Matt: Yeah, so if I was just thinking of you to sitting down there just like everyone else is like doing their visualization, your eyes open just kind of hanging out.

Lia: And that’s basically aphantasia.

Matt: But now you know though.

Lia: Yeah, now I know.

Matt: That’s basically half the battle.

Lia: Now I know but I do not see. That is basically aphantasia in a nutshell, we just thought it’d be a fun little thing to bring up since it’s new and different. I hope you guys enjoyed that bit of information.

Matt: And we’ll see you next time.

Lia: Have a good one guys.

Matt: Bye.

Outro:
In this episode, we explored what it’s like to experience aphantasia and how there’s a higher prevalence in autistic individuals than the general population. We discuss how it may be difficult for some to capture both visual images or accompanying sounds. We also know that although those who experience aphantasia may not be able to visualize images, it is still possible to dream vividly in many cases.

Tune in next time as we examine the differences between autistic meltdowns and tantrums. We answer questions such as, how can I know if my child is having a meltdown or simply having a tantrum? What can I do to help my child during a meltdown? And how can I try to prevent future meltdowns from happening? This is Embracing Autism.

—
References:
Link between Aphantasia and Imagery in Autism
Mental imagery and visual working memory
Aphantasia Living Room, Bedroom, Kitchen Drawing Study

Hearing Voices
Show Notes for Embracing Autism Podcast — Ep. 206

Introduction:
Lia: In this episode, we tackle our final sense the sense of hearing and how autistic children may react differently to sound than their neurotypical peers. We discussed the importance of completing a hearing evaluation, as well as some adjustments or accommodations you can make to help your child cope.

Lia: Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice and support while spreading awareness and acceptance of Autism Spectrum Disorder.

Lia: I’m Lia!

Matt: And I’m Matt!

Lia: And each week, we’ll discuss our journey with autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources and sharing our personal stories. This is —

Lia & Matt: Embracing Autism!

Discussion:
Lia: Hi, all so today we’re going to be talking about our final sense, the sense of hearing, this is the final, I guess, official sense, because I’m not sure the other ones count as senses.

Matt: Yeah, we’ll stop at five and not do the sixth sense.

Lia: Let’s not do that one, that might be a little creepy. But yeah, our kids don’t have the ability to see ghosts. I don’t think… maybe I guess we’ll find out.

Matt: They are too young to notify us one way or the other.

Lia: Yeah, researchers are out on whether or not there’s a correlation with seeing ghosts and autism. So well, we’ll keep you guys posted if new studies come out.

Matt: Oh lord.

Lia: But we’re talking about the sense of hearing, which is kind of interesting for us, because we have the two kids that are similar in some areas when it comes to the sense of hearing, and then they’re very different in other areas.

Matt: Yeah, I would say that there is quite an overlap in their sensitivities. But not all the way I kind of think of like a Venn diagram, essentially, that we have the two kids and then their kind of overlapping areas of sensitivity. And then the drastic change that might affect one but wouldn’t necessarily affect the other. So I mean, a perfect example for this is they both are not huge fans of like the vacuum, for example, our oldest is absolutely terrified where the thought of the vacuum she’s off running, as were the youngest one, she’s nervous around the vacuum but doesn’t go off hiding. So I think that’s one of the examples where they both don’t like the concept of the vacuum or the loud noise that it creates. But then at the same time, there are other noises that one would tolerate better.

Lia: There’s like a combination of the over sensitivities and the under sensitivities. And again, this is why autism is such a spectrum because both of our girls are diagnosed but what exactly sets them off is not necessarily the same and they do overlap in some areas. So like one example that we had with our kid is the oldest one was absolutely terrified of any sort of toy that made any sort of noises. So for the longest time, we could not have any sort of electronic toys whatsoever. Or if they were electronic, we had to make sure it didn’t have batteries or was turned off because it would completely set her off. That like sudden jarring electronic noise or sound — she would freak out and have a total meltdown. Whereas our other kid actually seemed to be attracted to that. So like, for example, when you think of those books that you like, push buttons in and they make sounds, I’m not sure what those are called.

Matt: Audio sound effect book?

Lia: A sound effect book? I don’t know, people are gonna be laughing at us. Basically, with those books, one of my kids, the youngest one, she would love it. She would almost stim on it, where she’d be pushing the same sound over and over and over and over and kind of like enjoying and laughing.

Matt: And the oldest would basically be crying and yelling, begging her sister to stop it.

Lia: Yeah the other one would be crying and like hiding and like trying to get it to stop. So it can be problematic if you have multiple children who are autistic, because they can kind of set each other off when one needs an input that the other person is averse to. And that’s like a unique challenge that we’ve run into.

Matt: And then on the flip side of that, the youngest one will be singing in the car, and her older sister does not want her singing under any circumstances. So she’ll be kind of telling her to stop singing. So it kind of goes both ways, essentially, of how it kind of interacts with sound.

Lia: I mean, and then it goes the other way, too. It’s like it’s almost like they tag team with each other on setting each other off. Because then the oldest one, the older one has gotten in the habit of wanting to like verbally stim a lot where she’s like screaming are shrieking really loudly, just like for fun. Like she laughs afterwards. She thinks it’s like a good sense…

Matt: A game.

Lia: Yeah, it’s like auditory input for her. Like she likes the sound of it. And the youngest one is very sound-sensitive to that sort of pitch. So she honestly has to have these noise reduction ear muffs on all the time, whenever we’re on car rides, because that’s when the oldest one likes to scream more often. It totally triggers the youngest ones like she’ll start crying. She starts just freaking out and kind of getting emotional. So it’s kind of interesting to see how they’re very opposite in certain areas, but yet they’re both scared of like, a dog barking loudly.

Matt: Yeah, so I would definitely recommend as far as like having some type of like ear muffs. I mean, I feel like that is absolutely crucial because sometimes we’ll be somewhere — in the car, for example — and our oldest is being loud. We’ll see like our youngest kind of covering her ears just trying to block out the sound. So yeah, we definitely found that we need multiple sets of ear muffs kind of scattered throughout the house, car, everywhere just if we need to kind of pull out a pair to kind of put on her just to help a little bit that makes all the difference in the world.

Lia: Yeah, we’ve kind of learned that you can never really have too many noise-cancelling headsets like, honestly, or noise reduction. Honestly, we have like three pairs and we feel like that’s not enough. And we’re like in the market to get more because we have some in the car, we need some of that house.

Matt: We have some in the bedroom.

Lia: Yeah, we obviously need some in the bedroom, because sometimes the older one will scream during their nap time and trigger the other one.

Matt: Right, so we have been trying to find ways to allow the oldest one still to get the sensation that she needs, but then not completely disturb or disrupt the younger one. So I think of the one helpful thing that we had tried, and it kind of works sometimes is the cup that she’s able to kind of scream into the cup.

Lia: Yeah.

Matt: So that kind of allows her to kind of get the sound that she wants, because she still has the vibration and the impact of the sound. But then it’s also not disturbing her little sister.

Lia: Yeah.

Matt: But then that’s kind of a hit or miss if she decides to do that.

Lia: Yeah, so that was kind of like a workaround that we did is like if you have a kid who’s a screamer, one of the things that we came up with is getting like one of those red solo cups, for example, the bigger ones and just hand it to her whenever she feels the need to scream, and then we tell her to put it over her mouth and scream into the cup, and she can scream pretty loudly in that and it muffles the sound. So she still has the ability to do that and she just won’t trigger her sister as much. It does also give a little bit of like a vibration feedback because the cup is up against your mouth in your face. So if you’re yelling into it, you also do get a little bit of that like vibration sensory on your face, too.

Matt: Right? So I didn’t think that she actually liked it when we showed her that it’s just if she’s in the mood is there like a cup that she has around her? Otherwise, you have to go to track one down or try and make sure the other one has headset on.

Lia: Yeah, absolutely. Interesting things about hearing in autism is that they can have difficulty with hearing and a lot of times they are over-sensitivities or under-sensitivities. So one of the challenging areas in that is that sometimes children have difficulty blocking out other sounds. So if they’re over sensitive to sound, it’s kind of like if there’s a dog barking, if there’s a bird going off, sometimes it can also affect their ability to concentrate or pay attention to what you’re saying, because they’re too hyper-focused on that sound like that sound becomes a very distracting sound to them. Whereas neurotypical people can just learn to tune that out.

Matt: I mean, maybe that’s one of the cases because I’m thinking of like, when we’re taking our girls to the car, and I’m talking to our oldest, and she is talking to me about all — I’m saying one thing to her — and she’s telling me that she’s like, listening to the birds, essentially, that are making noise. And I’m like, well, I’m much closer to you trying to have like a conversation about like, oh, what colors do you see like in the trees, and she’s telling me like she’s hearing the birds. So it’s like completely ignoring what I’m saying. But finding another sound to kind of catch on to.
Lia: Yeah, I’ve noticed that when we’re putting the kids into the car, a lot of times, she’ll have this like zoned-out look on her face. And when I pay attention, I kind of start looking around, I’m like, is she looking at something? It doesn’t seem like she’s looking at anything, she’s just kind of spacing out. And then I realize it’s because she is trying to listen to the birds and the trees outside.

Matt: Right.

Lia: So like, that’s actually kind of a good point there is that sometimes we might think that they’re not paying attention, but it’s that they’re just hyper-focused on something else right there and it can be auditory input.

Matt: Right, and I mean, she would mentioned leaves or trees or dancing or something when she’s paying attention to the wind. So just interesting that even though you’re trying to probably engage in a conversation with them, or say their name, and they’re not giving you anything back, it might not be that they’re choosing to ignore you, but something else has fixated their attention, and that they’re zoning in on that with their audio.

Lia: And there’s like a bunch of different components to hearing when it comes to like the auditory system and autism. A few things that come to mind when it comes to autism are things like auditory cluttering. It can be kind of like anxiety-inducing to some autistic individuals, because of that difficulty with filtering and processing sounds like we just mentioned. So that means that for some autistic individuals, that can actually be a painful experience. I don’t have any particular studies on that. But just based off of the studies, we’ve heard from the other senses, I would imagine that it would also probably show that pain experience in the brain like it did with the other senses. That would be my assumption.

Matt: I was going to say — I mean, since it’s so prevalent, and all the others it’d be weird if it was the outlier.

Lia: I would be willing to bet that there’s research out there that probably verifies that but don’t take my word for it. Do a Google, Google Scholar search, not Google. But then there’s also the over-sensitivity to sound so they can have really painful reactions to alarms, things like bursting balloons. Oh my gosh, our older one really had a hard time with that one.

Matt: But then the youngest one loves it and then tries —

Lia: Oh my gosh.

Matt: — and sits on the balloon. So again, here we go again, with sending the other one into a meltdown of sorts.

Lia: Exactly. Like our oldest one hates popping balloons, like she gets so scared of it, but the youngest one absolutely loves it and will intentionally try to pop balloons.

Matt: Because she’s small, so she’ll use it as like her own bouncy ball and then bounce and then of course it’ll pop.

Lia: Yeah, exactly. And then things like banging doors and dogs barking, those were the first things we noticed with our oldest one was she was as young as like, what, three, four months old?

Matt: Yeah, she was only four months old and there was a dog that was barking next door to wherever we were and I remember she was absolutely terrified of the dog. And I mean, that’s understandable. Because I mean, it was it was a large dog kind of barking kind of close to her. And I mean, think that was her first time that she’s ever had any type of exposure to a dog. But we still see that even today, like, we went to the park today and there were two small little dogs that were kind of walking around just going on a walk. And she wanted nothing to do with the dogs. But then the youngest one wanted to run over and pet the dogs. So I mean, even that, that’s three years later, and she still has that disconnect from any type of dog.

Lia: Yeah, exactly. And then there’s like the under-sensitivity side, our youngest one, she, for example, I think, for the most part tends to be under-sensitive to sound because she has always even to this day had a really slow response to her name and getting her attention. We’ve always considered whether or not she had hearing problems or anything like that, until we eventually got her tested. But it’s kind of different for each autistic person in the sense that there’s people like our older child who’s super hypersensitive, and will react really quickly. And then there’s others that need more auditory input to get a reaction. So these are the types of people who would probably prefer to listen to music really, really loud. So I know some people that like when they’re listening to music in their earbuds, you can hear the music really loudly from the outside, and you can make out the lyrics, everything and all of that. And it’s because they need a higher volume to get the same auditory input that a neurotypical person would probably be able to get at like a normal lower volume setting.

Matt: Right. I was gonna say, I mean, as far as getting the attention of our youngest one, I think that that can still be a struggle. I mean, at least it’s still struggle for us. I guess, what would you say is the best approach that you have with getting our youngest one attention? I think for, for me, I think us trying to turn it into kind of a bit of a game kind of gets a better reaction than just us repeatedly calling her name if she’s kind of zoning out or listening to something else. So I think for us, if we turn it into like a song where we kind of tell her to like turn around or something, so we’ll kind of incorporate her name into the song and then suddenly, it kind of pulls her back a little bit where she hears something that she likes, because it’s kind of a song that she loves music. So when she hears the song, she’s pulled back, and then she hears her name and then she realizes that we’re trying to call her.

Lia: Well, the thing that I’ve learned through occupational therapists that kind of go along with that is that you tend to need to use things that are like high-reward, and whatever that thing is, depends on your specific child. So like for our oldest child, initially, she also didn’t respond to her name. For her, the high reward was giving her a ton of praise. We would kind of get in her face a little bit when we call her name so that she would know that, oh, when we’re calling your name, we’re trying to get your attention. And then we would just praise her like, oh, yeah, good job, that sort of thing. And she was very responsive to that, she loves having praise.

Matt: And it was also like, tickling her so she would be like laughing. So she would get the idea that, oh, when I respond, when they call my name, I get tickles. And she’s happy with the end result of actually responding to her name.

Lia: Right. But that didn’t work very well, for the younger one. The younger one, the reward system for her is different because she is more of a gross motor kid and so for her, the reward system that we had to use was more motion-driven or activity-driven or things like that. So it’s been harder with her, it’s still kind of like a struggle to get her to respond to her name most of the time, but we’ve made some improvement in that area by switching it to that sort of motion, gross-motor type of incentivizing.

Matt: Right, kind of the red light green light of sorts to kind of get her to redirect her body’s motion. And then she likes essentially kind of responding back.

Lia: Exactly. And then when the sense of hearing, it’s not just limited specifically to hearing the sounds, it’s also understanding the sounds you’re processing. So with autism, sometimes there can be difficulties in processing and understanding sounds, I believe, that’s called auditory agnosia. That basically means that for example, if they hear a sound, they need to then be taught the association with that sound. So like, let’s say that they’re in school, and they hear the bell ring, they need to then be taught that when the bell rings, that means that’s the time that you get up and go to your next class. It’s not necessarily intuitive. So there’s kind of like an auditory process like disconnect there between hearing the sound and then processing the meaning behind the sound. I thought that was interesting.

Matt: I just thinking. I mean, the example that you gave me that makes perfect sense. I think about like our elementary schools, sometimes the bell would mean something for us and sometimes it was a bell for other kids to come inside, which had no bearing on anything that we were doing. So it was like certain times of the day, the same exact bell could mean totally different things depending on what time of day it is. So unless you’re actually taught to incorporate, which I mean, most kids that kind of follow the flow of everything, but unless you’re actually taught what that individual bell means, at specific times, you would be completely clueless as to what it’s actually meant to be.

Lia: Exactly. And that can be difficult just for any kid. So just imagine how difficult it must be for somebody who has a processing disorder on top of that when it comes to understanding that information. So usually, you just got to give people a little bit more time, give them more examples, give them maybe visual stories or something like that to help them process what that means. And I think usually repetition helps with that too, kind of like a fire drill where you just practice before you do the actual thing. So maybe doing some sort of like drills where you practice, when you hear this sound, it means this. You could always turn that into a game to I would think. Another thing that falls in line with the auditory system. And autism is called meaning deafness. It’s kind of related to the auditory agnosia. But this is like auditory verbal agnosia. So the other one is just being able to process and understand sounds, that’s the auditory agnosia. But auditory verbal agnosia is going beyond that, and understanding what the language itself means. So in autism, that can be difficult as well. So that’s kind of correlated with like the speech, the receptive, expressive speech stuff in the sense that you have to be able to use like, short, direct sentences, so that they can process the meaning behind it easier than if you gave them a complex sentence. So that’s, again, part of that sort of processing where your ear is bringing the information in but there’s some point where there’s kind of a disconnect with the hearing part of the brain. So you have to kind of give them a little more time, give them a little less information, more bite-sized pieces, so that they can kind of get that to process a little more smoothly.

Matt: So in a way that would be kind of related to what we talked about in the speech episode, where we had very short, brief sentences that we would practice with our daughters to say when they were trying to make a request. So we would teach them to say “I want chips”, for example, instead of having a more complex sentence of “oh, can I please have a bag of chips, I’m really hungry, blah, blah, blah”.

Lia: That’s a long sentence for a 2-year-old.

Matt: But yeah I mean she’s polite, because she says, please. So I would imagine it’s kind of similar with that but instead of being a speech component, it’s more the hearing components so kind of on the flip side, in a way?

Lia: Yeah, exactly. So it’s basically like, the reason you did that under the speech area was because of a receptive processing issue. But the reason you’re doing it in the hearing areas, more of an auditory processing issue. So it’s kind of like a similar means to a different end.

Matt: So it’s like the opposite side of the coin.

Lia: Kind of — Yeah, of a five-sided coin?

Matt: Sure, a die — let’s say a five-sided die.

Lia: That’d be a weird die. Yes. But anyway, back on track. So that was really interesting. And then the other thing that I learned about is something called tonal agnosia, which is like tonal deafness. And that basically means that some autistic individuals struggle with the ability to pick up tone. And this is also part of hearing somebody’s inflection in their voice or emphasis in certain words. There’s actually I think, in the autism tests, that’s some of the questions that they asked.

Matt: So essentially, it’d be them potentially struggling to pick up sarcasm, if they’re talking to a peer. So if a peer was to say like, “No, I’m not hungry”, clearly, meaning that they’re very hungry, I wasn’t sure if that means that they might struggle with the inflection that it means the opposite.

Lia: Exactly. Or like things like hyperbole when there’s like an exaggeration in what you’re saying, or it could also be like, when you add an emphasis to a word to give it another meeting. Like if you say, “Hey, look over there”, and you say it kind of like ‘there’ like, secretly, and then the person might be like, what look where you’re like, over there, like, they might not get that, you know. So it’s kind of like the version of like, when you point to something with your eyes, because you want to be discreet, and the other person picks up on it. This is kind of like the audio version of that, where it’s like you’re speaking something in a certain tone, or a certain emphasis or certain way and that is giving a second layer of meaning to what you’re saying. So if you’re not able to understand that second layer, meaning you’re more likely to take it very literally.

Matt: Okay, that makes sense.

Lia: So that’s called tonal deafness, because it’s like, specifically related to like the tone and inflection in the person’s voice and how they’re emphasizing things. And I think it goes both ways. So I think it’s both a matter of not being able to pick it up when other people are doing it, but also not necessarily being able to do it yourself. So it’s very common and autistic individuals part of the diagnosis process is they’ll ask and see if the person has a monotone voice, for example. And that tends to be common to where people say that — monotonal is kind of like robotic. So sometimes there is no inflection. You don’t speak with like a natural rhythm. It might just be more I think of like NPR.

Matt: Oh, yeah, pretty much.

Lia: Yeah, I kind of like that monotone type of news anchor voice.

Matt: Which I guess makes sense. If the understanding behind the hidden meaning in the language is kind of something that you’re not understanding, then you wouldn’t engage in that because it would be kind of irrelevant.

Lia: And none of this is to say that autistic individuals experience all of these things or even any of these things. These are just a bunch of different examples of different experiences that some autistic individuals have reported. But again, every person is different. So they might not necessarily have any of these or they could have many of these or a mix. So because of these hearing impairments that are possible or these sensitivities, oftentimes it’s recommended for autistic individuals to go to an audiologist for hearing tests. For our children’s autism evaluations, they actually asked us if they had their hearing tested prior to the assessments. So we did actually get them both assessed. Cool tip there, if your kid has not gotten assessed yet, the local public school system, at least in the United States, does free audiology tests. So we were able to get both of our children tested for free through the public school system.

Matt: We did them — must have been before they were two I would imagine, right?

Lia: Yes. And they do have like a kid version of an audiology test. So if you’re just curious, I can describe it really quickly. I had my child and we went into like this soundproof booth, and I had her on my lap. And then what they have on the two corners of the walls is they have a toy, and a light and the toy, I think it was like, maybe like a clown with cymbals or something like that. It’s kind of creepy, but I let them know in advance that my children were likely autistic, and very sensitive to sudden noises and sudden movement. So they were very understanding of that and they turned that component off, because usually the toy is used as a reward, so that if your child looks in the correct direction of where the sound came from, the toy is there and the toy will like make noises to reward them. But for autistic kids that can have the opposite effect.

Matt: I mean, if it was a clown, even like you think like normal kids, it’s almost like a punishment.

Lia: Yeah, it honestly reminded me a little bit of like a Jack in the Box, like it kind of was — because it would pop up, it kind of is like a Jack in the Box. Yeah, so it was, I think it was creepy, but that’s what they’re using. So what they do is they put the kid in there, it’s kind of a really weird experience because it is completely soundproof. So when you go in there for a hot second, you kind of feel like you’re deaf, because you don’t hear anything at all. It’s very unnerving. But you hold your kid in your lap, and then they’ll do different pitches of sound. So they’ll do different types of sounds, they’ll do different volumes of sounds. And they’re basically just gauging to see whether your kid turns their gaze towards where their sound is coming from. And that’s how they know with toddlers and infants whether or not they’re able to hear the sound.

Matt: And I remember, I wasn’t actually in the booth with you but I was like helping them get her to respond one way or the other. So I remember, they were asking as far as like, is there anything that she’s interested in, so I was like giving them certain nursery rhymes to say certain lines to see if they would kind of get her to turn her head one way or the other to show that she’s actually able to hear the song because I mean, at that age, I mean, she was so young, her language ability was almost nonexistent.

Lia: Since many kids on the spectrum have that whole receptive, expressive issue, that was one of the things that kind of fell in place with audiology exam too is that they will use phrases or questions that the child needs to respond to. But if you have a child who like ours at the time was very non-responsive, we had to get creative and we talked to the audiologist and kind of fed her things that we knew our child would react to, because it was a special interest of hers. So if you have a good audiologist, you can talk to them and let them know like, hey, they don’t understand questions, but they will fill in the blanks to like this story, if you read a line from it, or they’ll fill in the blanks to this song. That way, you know that they heard the sound, because they’re responding to it by filling in the blank. So if there’s anything like that, that works for your child, just make sure you inform the audiologist. And more often than not, they’re willing to tweak the test to get it processed for your kid.

Matt: Yeah, I thought that that was really helpful, because I mean, we were able to get the results that we needed to gauge where her hearing was at, because she was able to respond from the songs that she liked to hear.

Lia: And they also do a physical examination of your child’s ear. So they looked inside both ears, they did like a pressure test and they also just checked for any physical obstructions like too much earwax, this or that. They tried to basically just rule out any other reason why your child might not be responding to their name, etc. So when we did that test, we got basically the clear that both of the girls had fine hearing, their hearing didn’t have any difficulty. So we knew when we took that to the autism evaluation, that the results from that would probably be more likely due to autism and not due to any sort of hearing impairment. So if you haven’t had that evaluation done for your child, I would just recommend that you do it just to get the clear and make sure because there is also a high correlation.

Matt: Yeah, I was gonna say the exact same thing. If you’re able to knock that out before you go out for a diagnosis, that’s helpful, because that’s one thing that you can eliminate, as opposed to having kind of something else up in the air like, well, are they autistic? Or is it a audio thing that they might not be able to hear? So it’s better just to kind of cross that out as a possibility right from the start.

Lia: What’s interesting now that we’re on this topic is I found a study that was done by Harvard. This was fairly recently I think this was like December of 2020. And it’s really cool because they found that they might be able to enhance early detection of autism through a newborn hearing test. The newborn hearing test for those of you out there listening, they do this for every newborn. So every time a baby is born, they just by default will do a hearing test just to make sure that the child is hearing properly and then flag if there’s any concerns so there can be proper follow-up. And what they found in the study is basically that when they were checking for newborn hearing tests, specifically of the children who were followed through this study, they found that 321 of the 140,000 that were tested were subsequently diagnosed with autism and that those 321 when they checked their evaluation, retrospectively, they basically found that they had had a lower than average hearing outcome in that newborn screening. So basically, they either didn’t pass or they’re lower on the scoring than the neurotypical baby.

Matt: And I think as soon as we read that story, study, we start to think back to our oldest, and I remember the nurses saying that they had to run the test a few times with her because — not that it wasn’t inconclusive, but it wasn’t registering where they needed to be, or something along those lines.

Lia: The analysis showed that kids who are diagnosed with autism had abnormal newborn hearing tests, but they found that their brains detected sounds with a delay.

Matt: Okay.

Lia: Yeah.

Matt: So that would kind of coincide with our oldest daughter because they ran the test multiple times, I believe.

Lia: Yes.

Matt: That’s what they told us when we were in the hospital.

Lia: So when we saw this study, it was kind of interesting, because we didn’t even think about that when our child was in the hospital. She was our first kid, we didn’t really know what was going on. And they were running multiple hearing tests on her and I believe it was because they said that she was kind of like borderline or just barely failing sometimes. And then they basically wanted to just continue to test just to make sure before they said that she didn’t have normal hearing. Right?

Matt: Right. Yeah, I can’t remember exactly what the words that they were using were. But I remember they had told us that they had done it multiple times, because it was kind of almost like, on the bubble, or that there was something that they wanted to double-check. And of course, that’s being new parents were like, yeah, sure. Go for it.

Lia: Yeah, at the time, we didn’t think anything of it, because autism was clearly not on the radar at the time. But retrospectively, like now that we think about it, it’s like, yeah, you know, that probably was related the fact that she was borderline about to fail these tests, and they just kept having to run them. At the end of the day though she did pass them and then when they did their audiology tests they did pass them but there did seem to be some sort of like bump in the road there initially.

Matt: So if you have any hearing concerns, we recommend to talk to an audiologist just to kind of get some questions answered to kind of move from there. But also, that doesn’t mean that that is your only course of action. We also recommend trying to make any and all accommodations that you possibly can think of just to help the kids along the way.

Lia: And depending on the age of your child, there’s a few different options for any sort of hearing accommodations. One very common one is noise-cancelling headsets (paid link). Noise cancelling headsets have an option so that you can reduce the amount of sound that’s coming in. So you can turn that on and that’s like an electronic component. That’s really good for I think like teens and older kids who can use electronics. For very young kids, or just ones that don’t want to use noise-cancelling headsets, you can just use ear muffs (paid link). I think those are also called like ear defenders. But those are basically just like a headset that’s not electronic.

Matt: Just blocking out the noise?

Lia: Yeah, they’re just like headsets that muffle sound, so you can use that and our kids use those a lot. A third option that is lesser known, there’s these ear bud type of things that are from the company called flare, I believe they’re called like, Flare Calmer earbuds (paid link). I have a couple of these myself. And these are basically they’re like earbuds that go inside of your ear. However, they’re open and hollowed out. And what they do is they reduce the reverberation of sound in your ear. So you can still hear sounds but they tend to kind of mute the higher pitch harsher sounds like the nails on the chalkboard sounds. So you can still hear, they’re not noise canceling, they’re not noise muffling, but they kind of eliminate some of those like higher pitch squeaking, I would say like the more painful sounds.

Matt: And I imagine for those that’s probably older group as well.

Lia: So typically, it’s the older group, but they just came out with their kids line. So now they do have some available for kids too. So those are just a couple of options. Just keep in mind what your kids’ sensory needs are if they’re the type of kid that can’t handle something in their ear, or if they can’t handle something over their ear. I have also seen these animal headbands, headsets (paid link) that go over the head on Amazon. We tried it with our kid it was a sensory nightmare, but I’ve seen with other kids that it’s actually a sensory savior. So this one is kind of like a workout headband that you put like a sweatband over your head. But the earpieces go over your ear, and it’s just like a fur headband. So it’s very soft and there’s nothing that goes in in the air. So just depending on your kid, I will put some links in the show notes to all of these so that you guys can access them from there.

Matt: Otherwise, I think that pretty much wraps up the sense of hearing.

Lia: Yep, I’ll see you all later. We will be talking about fun new interesting topics so stick around.

Outro:
Lia: To review, we discussed how use of noise reduction earmuffs can help those hypersensitive to sound, how effectively using praise in your child’s preferred activities can encourage them to respond to their name, and why seeing an audiologist may benefit your child if you suspect hearing challenges. Tune into our next episode where we discuss aphantasia or the inability to form mental images and its link to autism. We answer questions such as, what is aphantasia? How is it related to autism? And what senses may be impacted? This is Embracing Autism.

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Resources:
Hearing Autism — Early Detection Newborn Screening
Noise-cancelling headphones (paid link)
Noise-reduction earmuffs (paid link)
Flare Calmer Earbuds (paid link)
CozyPhones over the ear headband headphones (paid link)

Disclaimer: As an amazon affiliate, AutismWish will receive a fee for any items purchased through our links.

Making Scents
Show Notes for Embracing Autism Podcast — Ep. 205

Introduction:
Lia: Today we will chat about the sense of smell and its newfound relationship with autism. We will discuss interesting findings from recent studies linking the sense of smell to social ability in autism, as well as some activities you can do at home to help your child adjust to overwhelming smells.

Lia: Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice and support while spreading awareness and acceptance of Autism Spectrum Disorder.

Lia: I’m Lia —

Matt: And I’m Matt!

Lia: And each week, we’ll discuss our journey with autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources and sharing our personal stories.

Lia: This is —

Lia & Matt: Embracing Autism!

Discussion:
Lia: Hi everyone, today we’re going to be talking about the sense of smell, which honestly, we don’t have as much experience with but we’re gonna try to let you know as much as we can.

Matt: Yeah, after the last episode, Lia and I actually sat down and we were kind of thinking, Okay, what have our girls really come across with smell. And we’re actually coming up a little bit short, our stories might be a little bit limited.

Lia: Yeah, so I think that to make up for the last episode, which was almost an hour long, this one will be a little bit shorter.

Matt: It’ll all even out.

Lia: So with the sense of smell, our kids didn’t really show much when it came to that in terms of any sort of hypersensitivities to smell. The thing is they may have some under-sensitivities to smell and we just don’t notice because an under-sensitivity would present in that they’re not being reactive to a smell.

Matt: Right, it was I think relatively neutral. Like there wasn’t any discomfort or any struggle when it came to smell directly. We had the different concerns when it came to taste, but smell was kind of one that was kind of elusive.

Lia: It may honestly be because we haven’t looked into it too much with our kids. But it may honestly be that they aren’t smelling things as strongly as we are because they don’t necessarily bring up smells. So like if I’m cooking something like if I’m baking brownies in the oven or something like that. They never make any sort of remarks about it. They’re not like, ooh, smells good or anything like that.

Matt: They do sometimes, but I’m not sure if that’s because they learned how to say like, it smells good. Like when we have them smell like a flower, for example.

Lia: Right, but that is specifically when we’re teaching them because they do that with fake flowers, too.

Matt: Okay, but that also wasn’t sure because sometimes I think like if you’re making like brownies or something, you’ll ask like, Oh, does it smell good? Or does it smell bad.

Lia: And that’s the problem is that we’ve kind of like pre-conditioned them into what their reaction should be when it comes to the sense of smell like they know, if you’re baking something, you’re supposed to react by saying it smells good. So we don’t know if their reactions are genuine and authentic at this point. Or if it was that we essentially taught them those reactions.

Matt: To trust the two and three-year-old on their smell ability or not?

Lia: Right? I mean, if you think about it, though, for example, our kids like whenever they have — they’re still in diapers — so whenever they have like a dirty diaper it doesn’t ever seem to faze them. And I don’t think it’s just the touch sensory component. Kids will usually say like one of the first things they say is, oh, it’s stinky. You know, like when they’re one, two. And our kids have never said that.

Matt: But I think they have because we’ve basically we’ve said it to them, like oh, like you have a stinky diaper. And then now they’ve learned that if they poop, they are supposed to say, Oh, I have a stinky diaper. Or they’ll say that their sister has a stinky diaper or whatever.

Lia: Right? So we basically have had to train them.

Matt: But as far as like what they actually smell, we’re not 100% if that’s a genuine response, or if it’s basically they know how to respond to it.

Lia: It’s kind of funny, because prior to recording this episode, or prior to us actually thinking and talking about this episode, smell wasn’t really on our radar for our kids. And I didn’t really even think about it, I just assumed oh, you know, they must smell like we do because they don’t react in any sort of different way like they do with their other senses. But now in retrospect, it may just be that they are under-sensitive. And because they’re under-sensitive, we’re not realizing it. Because when somebody is under-sensitive, they simply don’t react, right? So if they’re not reacting, we’re not going to notice.

Matt: I think another thing was because we were so focused on the other senses because we could definitely tell oversensitive under sensitive. We were aware of them. And then at the same time, they would throw in what we had kind of taught them oh, it smells nice, oh, it smells stinky. And I just thought in my mind, like, okay, perfect, they’re neutral. They understand smells good, smells bad. But then when we’re thinking about it, maybe it’s not that straightforward.

Lia: Might be interesting as they get older, if they’re able to maybe communicate with us more effectively. Maybe someday we’ll be able to get a better idea of how their senses are and what they actually experience in the world. Because right now, this is just us with guesswork. We’re not actually really sure. So I’m hoping that as they get older, we’ll get a better idea.

Matt: And then did you notice as far as any of our girls like smelling things that weren’t traditionally that a neurotypical kid would smell?

Lia: So that’s one of the things that I’ve read a lot about. I’ve talked to other moms and parents of autistic kids and a lot of parents report that their kids will start sniffing things that a neurotypical kid wouldn’t. So I know like for our kid, initially, the oldest one when she was probably about one and a half or so she was pre-verbal at that time, she would actually go up to my arm and she would sniff my arm all the time. And then she would kind of rub her nose on my arm, and then she would sniff it. And I always thought that was kind of like weird, but that was before we knew that she was autistic. So in retrospect, that must have been like a sensory thing when it came to like the sense of smell.

Matt: So I guess the true question is, was that before or after a shower, so would you tell her that you smell good? Or you smelled bad?

Lia: I don’t know.

Matt: So I wasn’t sure if like, yeah, like, I don’t know if she was seeking or if she was smel l— I don’t know.

Lia: Yeah, I was I was like, giving off a strong scent. And she was like, Oh, that’s nice.

Matt: Or if it was something pleasant like a like body wash or like shampoo or something.

Lia: Yeah, it’s possible, or I could have washed my hands because it was kind of like my lower arm near my wrist.

Matt: I was thinking like armpit.

Lia: No, no, no, she wasn’t snipping my armpit. It was literally my arm, like my forearm. So sniffing my forearm, like near my wrist. And then she was, rubbing her hand, and that’s the area that usually you do wash very often when you’re washing your hands with like soap and water. So it’s possible that it was soap, some type of scent. Yeah, because I don’t remember if I had washed my hands right before or after, but I do remember that it was something that I felt was a little bit bizarre because she would run to me, and then she would just start sniffing my arm.

Matt: And I was trying to remember if our youngest — I have the vision of her either being on the carpet a lot, or the sofa, kind of like face down. So I’m not sure if she’s just trying to like lie face down, or if she’s actually trying to smell like the carpet or the sofa. And I wasn’t sure if that was another interesting object that she was trying to smell or trying to get a scent off of as well.

Lia: Yes, sometimes she would go up to the couch and kind of lean her face over it and kind of rub her nose on it. It’s hard to tell sometimes if that’s like an olfactory thing, like, is she trying to sniff it? Is it the scent? Is it the texture? Is it that she likes rubbing her nose on it? You know, like is it the sense of touch and not smell? We can’t really tell because she was so close to it that we don’t really know what’s going on.

Matt: And we honestly might not know until she’s older and she’s actually able to describe what she’s trying to do. I mean, because she’s still so little.

Lia: But with a sense of smell usually what happens is there’s that whole hypo and hypersensitivity thing again. So you get the two different types. So you get those that are hypo or under-sensitive and hyper, which is over-sensitive. This means for some autistic individuals going to a place — like let’s say like a chocolate factory type of thing where you go to like a bakery or goodie shop or something like that — if they are hypersensitive that could be torturous to them. They might be way overwhelmed by all the senses of smell and they might get stressed and want to leave because it’s just too it’s too much stimuli.

Matt: And I can understand that. I mean, just thinking of your typical person walking through Macy’s or whatever, scent section, whatever, the perfume section home and they’re spraying the different types of perfumes and just kind of the overwhelming like back and forth of the different scents. I mean for me, that’s kind of overwhelming. I try and walk quickly through that. But I mean, if you’re really hyper-sensitive, then that’d be just flat out overwhelming.

Lia: Exactly. That’s actually a really good metaphor, because it’s true. It’s kind of like an onslaught to your senses. It’s a good example to be going through like a perfume store. And then there’s like those individuals who are hypo-sensitive, and the ones that are hypo-sensitive, are going to want to seek out that sort of extreme scent and smell, because their sense of smell is kind of stifled so they need a lot more of it to be able to smell it then your neurotypical person would. So when it comes to those sorts of behaviors, lots of times you will notice just by how they react, so if they if they seem to be avoiding places that have lots of scents so things can be like fairgrounds where they have like kettle corn popping, and they have what are those? What’s the thing, sugar flour thing?

Matt: Sugar flour thing?

Lia: The pancake, swirly thing.

Matt: Oh, the funnel cake. I was thinking of like this smoker with like the meats and things.

Lia: Yeah the meats, you have like this combination of like meats and sweets and the smoke from the grill. And then if there are animals around the of the smell of the animals and all this stuff, so it’s really like a huge onslaught of a ton of smells. And we kind of just tune it out but when it comes to autism, sometimes it’s really difficult to tune in at like, you just can’t tune it out.

Matt: Right, So I think it would definitely be something just to try and pay attention to because at the same time, if you have a young child who is very sensitive to that, I’m not really sure how they would display that if they would know enough to plug their nose to try and like limit the smells coming in. Or if they would kind of have more of like a meltdown reaction. I’m not really sure how that would actually appear in some of these settings.

Lia: Right. And that’s why it’s always important if your kid is appearing to have some sort of meltdown or tantrum. It’s always important to try to recognize what’s going on in the environment and try to pay attention to what may have triggered it. So we always say like, was there something that changed? And if so was it visual? Was it auditory? The smell what is something that I think would be trickier to pick up because you don’t necessarily know when a smell has changed if you can’t sense it the way they can.

Matt: And I agree, because I mean, if you’re — like we know like our kids, they’re sensitive to sound, for example. So when we go to a fair, for example, and it’s noisy, the rides, kids screaming, yelling, have a great time, we know that they’ll cover their ears, but we know enough to bring headphones. So we just put their headphones on, and then they’re perfectly fine going for a walk or like sitting on their wagon.

Lia: Yeah, but if you aren’t able to prepare in advance, and you don’t know to anticipate those needs.

Matt: Right, you could be caught completely off guard.

Lia: Exactly. So we always advocate for like a lot of like observation and just trying to pay attention and see if you can catch what’s leading up to it. See if you can see a pattern because once you identify a pattern, then you can put things into place to try to accommodate that, like earmuffs, or whatever. In the sense of smell, it might just be like, you just need to avoid those areas that had those smells. Or if your child is older, if they’re like a teenager or something like that, you can maybe give them some sort of like mask or something to kind of put over their nose so they don’t have to smell it.

Matt: Right now, like a mask might be kind of your best option or to just kind of avoid those places altogether.

Lia: Yeah, I know that. People also use nose plugs for like swimming.

Matt: Yeah, I guess you could but I was like-

Lia: It might be like another sensory issue with like touch and stuff.

Matt: Plus, it goes up in your nose. So that might be kind of-

Lia: Well, there’s some that just pinch on the outside.

Matt: Oh, do they?

Lia: Yeah, they just go around the outside of your nose and they just pinch.

Matt: Oh, I thought it was the ones you had to like push up in your nose. Okay.

Lia: No, something like that might work. But again, it just depends on the sensory needs of your child. And it depends on what they can tolerate more versus less.

Matt: True.

Lia: But I thought it was really interesting, because we started looking into some of the recent studies when it came to the sense of smell and there was a really interesting study that Matt actually found.

Matt: Of all people. I’m not usually the one for research.

Lia: That little bit of neuroscience came out.

Matt: I was gonna say, and Google, I suppose. Yeah, this study that we found it was actually analyzing both neurotypical kids as well as autistic kids that have been diagnosed to see how their I guess you would say smell receptors.

Lia: Yeah, which is like the olfactory system. The olfactory system is referring to everything that’s wired in the brain and in the nose to give you the sense of smell.

Matt: Right, so they had two studies, it was 18 children who were diagnosed with autism, and then 18 neurotypical children, and they ran the study 10 times and what they were trying to look for was different breathing patterns and smelling patterns when they were exposed to pleasant smelling scents versus gross things, basically.

Lia: Pleasant and unpleasant scents.

Matt: Right, so the pleasant sense that they had was a flavored shampoo, I think it was like a rose scent shampoo. And then the unpleasant smell was rotting milk and rotten fish.

Lia: That sounds so disgusting.

Matt: So kind of the two extremes. So I mean, I think most people would agree that you’d be able to smell one pleasant one unpleasant there. So they had each of the children watching cartoons while they ran the study. And they ran the study 10 times, and they said they were able to identify, I think with an 80% accuracy rate, just with the smelling — the change and breathing or sniff — if the child was autistic or not. So they found that the neurotypical children within .3 of a second being exposed to the rotten milk and rotten fish, they changed their breathing and sniffing patterns to kind of reflect that they were encountered with something that was very unpleasant and very pungent odor that they didn’t want to smell. But then they didn’t have the same reaction with the autistic children.

Lia: And when we say they changed their patterns, what they were doing is that they started all off with breathing out of their nose, kind of like how you typically do where you inhale from your nose, exhale from your mouth. And when they were exposed to the bad-smelling odors, the neurotypical kids started mouth-breathing, so they adjusted their smell so that they wouldn’t be inhaling through their nose. And they were taking shorter, more shallow breaths, whereas the children that were diagnosed with autism continued to breathe the way they normally do. So they didn’t change their breath pattern at all.

Matt: Right, they were able to identify 17 out of 18 of the neurotypical children for the study, which is around 94%. And then for the autistic children, they were able to identify 12 out of 18 as being autistic, which I think is somewhere like the 60%. But then when you combine that it’s about 80%, they’re able to recognize if they’re autistic or not. So the interesting thing that they were finding with this was, I think the youngest participant was four years old, but they were saying, if they were able to run this and find the same results with younger subjects, they might be able to easily have a strong pull one way or the other if your child might be autistic from a young age. And this isn’t an invasive procedure or anything. It’s basically just exposing them to unpleasant smells and pleasant smells, and then they’re only looking at the breathing patterns and how the child is reacting.

Lia: So the cool thing about that is the way that you breathe, it’s kind of like a neurological response. You don’t think about breathing it’s kind of like your heartbeat. You don’t think about having your heart skip a beat or anything like that it just happens as a reaction to your environment. So it’s kind of like the same thing with your breathing pattern. So what’s really interesting about that is that not only does this allow you to try to diagnose kids at a younger age, because the breathing pattern changes, regardless of your age, because you’re not doing it consciously. So you can theoretically expose toddlers or even babies to different smells, and just see how their breathing pattern changes. But the other cool thing about this is that they actually found that the breathing pattern was also associated with the social ability of the autistic children.

Matt: Right. And I still am still kind of scratching my head. I mean, actually, I’m literally scratching my head right now. Because I still, I still am kind of trying to figure out that connection between the social element in the sensory element regarding smell.

Lia: We mentioned a little bit in the last episode, we went over a little bit of how the brain works with tying the social aspect to different senses. But basically, what they found is that when it came to autism, those who had been diagnosed with more severe social impairments, specifically, they found that those that had more severe social impairments ended up having more severe olfactory impairments, or sense of smell. So it seems to be like there is a strong correlation between autistic individuals who have a more difficult time sensing smell, to also having a more difficult time in social situations. And what’s interesting about that is that the social part of the brain, there’s that whole like social complex of the brain. So it does seem to be tied to things like the sense of taste and other senses that we talked about earlier in the season. So now they’re finding that it is also associated with the sense of smell. So it just seems like as a general whole, each of the senses seemed to be strongly correlated with the social aspect.

Matt: Okay so, just kind of depending on where you’re falling on the spectrum, how that kind of pulls from your social interaction with the individual senses, how they each relate to the social element is that kind of?

Lia: Well, and that’s exactly why they say that Autism is a spectrum. So autistic individuals can have social deficits in different areas and different levels, just like they can have different sensory issues in different areas and different levels. You have people who are hypo-sensitive, yet people who are hyper-sensitive. And I think that the research tends to lean towards the reason behind this being the fact that it is all like complex cross-wiring. So if one string connects one sense to one behavior, it’s not going to necessarily connect that same sense to that same behavior in the next autistic person, because we know as a default, that autistic brains are wired differently than neurotypical brains. But that’s not necessarily to say that every autistic brain is wired the same to each other.

Matt: The exact same, okay.

Lia: Right. So it’s like they all have families of similarities. So they’re all in the same family of having sensory disorders, or they all are in the same family of having sensory deficits and social deficits. But where exactly those wires are crossing to impact what exact social deficit or what exact sense is not the same from autistic person to autistic person.

Matt: Okay, that makes sense. I mean, as far as you can have an infinite number of how someone’s falling within the hyper-sensitive or hyper and —

Lia: Hypo.

Matt: Hypo-sensitive. I mean, I would assume that there’s a spectrum within just one sensory, let alone all the sensories. So it would be I mean, almost like an infinite number of possibilities there.

Lia: Exactly. And that’s why they say like, when you’ve met one autistic person, you’ve met one autistic person, because it’s really difficult to find two autistic individuals who share the exact same profile, same experience, and all of that. So that’s what’s really cool about the sensory system and the fact that we are able to actually see some of these differences in things like EEGs and other sort of brain activity scans. It’s actually pretty cool.

Matt: But then I guess the other thing that I’m interested in, I usually think of smell closely related to like food, so I wasn’t sure how that would kind of relate to kind of your picky eater who wants bland foods versus like both of our daughters love like lemons, for example. And I wasn’t sure if any of that ties together or how that kind of all correspondence.

Lia: I actually have learned a little bit about this in my background. So I don’t know any specific studies, I might pull some up for the show notes after I find them. But I just know from my background, that the sense of smell definitely impacts your ability to sense taste. So there’s like a strong correlation between the two. They’ve done studies where they’ve like plugged people’s noses, for example, and then they’ve had them rank flavors and tastes and see like how much they can taste and they basically have found that once your nose is plugged, you have to add way more flavor to get the same level of taste as you would. And if you think about it, when people are trying to eat something that they don’t like, what do people instinctively do — they tend to plug their nose, exactly.

Matt: Or if you are the fancy people where they do like the wine tastings.

Lia: Yeah, you sniff it.

Matt: Where they kind of swirl it and smell it before they actually try and like, taste it.

Lia: Right.

Matt: So I mean, let’s us see like the strong correlation or —

Lia: Relationship.

Matt: Relationship.

Lia: Yeah. So there’s a very strong relationship between the sense of smell and the sense of taste. So it makes sense that if your child is struggling with a sense of smell, it might then affect their ability to taste. And because of that, what you might be seeing on the other end is your child refusing to try new foods. Or if they are the type of kid who just likes bland food, it might be because they can’t tolerate the smell, it might not even be a texture thing or a taste thing, it might be a smell thing.

Matt: So if your kid is seeking out bland foods, it could be not necessarily because of the taste, but because of the smell. So if you’re making dinner with a lot of seasonings, that can be extremely overwhelming. So it might not just be what it tastes like at the end. But it could just be the smell is way too overwhelming for them to even try. So, therefore, they might tolerate more bland foods that have less seasoning just by nature.

Lia: Yeah, like if you just think about a lemon, rosemary, chicken.

Matt: Right.

Lia: Usually, to us, that’s kind of like a mild flavor. So it’s not so much about the flavor. But rosemary and lemon both have a really strong scent.

Matt: Right, if you’re hyper-sensitive, and you can just pick up on that I can imagine trying to eat some, especially if you don’t like the smell of it. So if you don’t like the smell of something, and then you’re trying to eat it, that would just be a nightmare.

Lia: Right. And you know, something that kind of reminds me about it. So it helps me understand it a little bit is like when I was pregnant with both of the kids. Part of the side effect that a lot of women experience when they’re pregnant is a heightened sense of smell. And I remember for me, I could not tolerate a ton of smells, especially the smells of meat. And grilled chicken, that one was terrible. I could not stand the smell of grilled chicken. And because of that it affects your ability to eat those things. Because if you can’t tolerate the smell, there’s no way you’re going to tolerate putting that in your mouth and eating it.

Matt: Right or you’d have to I mean, you would actually have to leave the room or I mean, we flat out stopped making chicken for —

Lia: Yeah.

Matt: — for the duration of your pregnancy. Yeah, it was that that bad, like I, I had to sacrifice my chicken tearing your pregnancy because it couldn’t be in the same house.

Lia: I remember when we were visiting my mom’s, I would literally go on the third-floor level and go all the way into like a bathroom within a room and close the door. So I was like three doors behind just to avoid the smell of the food that was being cooked. I can kind of feel like that might be a little bit of what these individuals are experiencing.

Matt: But then at the same time, it’s even worse because you’re an adult. So you have the option to remove yourself from that environment. If you’re a young child who’s basically instructed like, oh, here’s dinner, like eat your dinner, you know, I mean, you suddenly don’t might not have the option to leave and not partake.

Lia: right. And the difficult part of that is that if you have a nonverbal child, or you just have a young child or a child with an intellectual delay, they might not necessarily have a way to communicate that with you. Or they might not even understand that that is the thing that is triggering them. They just know something about this is making me feel nauseous or gross. And I don’t, I don’t know what it is.

Matt: Right, I don’t feel right, I can’t regulate myself to feel better. I’m just kind of stuck in this environment. I mean, that might be one of the reasons why you get a picky eater, for example.

Lia: Right. And that kind of ties into our last episode about the taste where we talked about how to try to expand foods with your child. So sometimes it’s not a taste thing. And when you go through that process of trying to expand their food, and if you don’t force them to eat it, you might find out that it’s actually not a taste or flavor thing. Maybe it’s a smell thing, if you observe your child and see how they’re reacting while you do that.

Matt: Now there was an activity that I believe that you — or a technique that you had learned at some point through this, this journey regarding different scents and how to kind of like practice with the different scents. I wasn’t sure if you wanted to kind of —

Lia: Yeah, so the great thing about all of this is that you can always — I always say go to your OT. I am such a big fan of occupational therapists. I feel like we have been able to solve so many of our like problem areas with an occupational therapist.

Matt: Well, especially if you have a great relation — well first off if you have a good occupational therapist, but then if you build a great relationship with that one then I mean, they’re your go-to.

Lia: Yeah, definitely. And so one of the activities that I learned about for the sense of smell is actually kind of like an exposure therapy type of thing. So what you do is get a bunch of jars and then in those jars, put a bunch of different scents and each scent can be like from your herb drawer. What do you call it?

Matt: A spice rack.

Lia: A spice rack, yeah! An herb drawer, where’d that come from? And so what you do is you get some of these stronger scented ones and some that are milder scented, but you’re going to want probably more of the stronger scented ones if your kid is hypo sensitive, and then probably the other way around if they’re hypersensitive. But what you’ll do is you’ll take them so you take things like cumin, rosemary, lemon pepper, these type of scents that have both a strong scent and then just kind of like a hint of a scent, and you put them in different containers. And then you can put like a cheesecloth on them or something that’s a little bit porous so that the scent isn’t super overpowering, but you can still kind of get some out of it. Or if they’re hypo-sensitive and they’re under-sensitive, you can probably just put it more open face so that they get more of it because they need more input. But basically, it’s exposure therapy and you kind of like play a guessing game like, oh, guess this scent, what do you think this is. Or play matching games where you offer them two different scents, and then you offer them a third scent, and then you say, okay, see if you can match one of these two with this third scent, and see if they’re able to determine which scent is the correct one. And that would be kind of an exercise that you could do repeatedly every other day or something like that, to see if you can kind of train them into being able to decipher scents a little better over time.

Matt: Plus, it’s also good on the other level is if you’re able to identify a sense or smell that they flat out hate or dislike, then you I mean, you know. I’m not much of a like Chef or anything so I might not know what a specific spice is. But if I smell it, and it’s absolutely repulsive, I would be able to say, oh, I hate that scent, please don’t use in any food. So you might be able to get lucky in that sense and find out oh, my kid doesn’t like lemon pepper. For example. Maybe I’ll cut back or not use lemon pepper whenever I’m making them dinner and then maybe you can avoid a struggle down the road.

Lia: Yeah, exactly. You might accidentally identify something that was causing your kid to not eat in the process. So that’s super helpful and beneficial.

Matt: So a win-win!

Lia: If you’re not into like the food version of it, there’s also like milder versions you can do like if your child is having an issue tolerating bathtime it’s the same thing. Maybe one of the reasons they’re not tolerating them is not because of the water. It might be the smell of the soaps for example. So you could try doing it with like different scented bath soaps, different scented bubbles, if you wanted you could even go to like a candle store and do different scented candles or different scented candle wax or things like that and kind of make it a fun little game.

Matt: Yeah, I remember you mentioned like the bath time, but even like our daughter brushing our teeth, she didn’t like the smell of one of the kids toothpaste and we wouldn’t even be able to get it in her mouth because she would smell that it wasn’t one of the berry ones that she had before. And she refused to even brush her teeth with it. We had to go get the other one because that’s how strong the association was.

Lia: Yeah, exactly. Sometimes that sense of smell, you will notice it once they start pushing back on certain things. So I just think that when it comes to the sense of smell, although we haven’t actually run into too much of it just a little bit here and there.

Matt: Yeah, it peaks up I would say the other senses, the different senses are more prominent than smell in our case.

Lia: Yeah. So we basically notice at least that they have more differences, and hypo and hypersensitivities with the other senses. And the sense of smell tends to be kind of more neutral with our kids. But again, that could just be because they’re not letting us know. And we can’t really tell when there’s an absence of a sense or a presence of a sense. So it’s kind of a harder one to pin down.

Matt: Yeah, exactly.

Lia: But that’s that’s all the information we really have for you guys on the sense of smell. I hope that you guys learned a little bit here.

Matt: We sure did.

Lia: We definitely did. Because again, this was not one we were super familiar with. If you guys have any cool like sense of smell stories or anything like that, let us know on Facebook, like leave us some comments under the podcast episode because I’d be really interested to see or hear or learn more about the sense of smell when it comes to autism and what your kiddos are experiencing.

Matt: And don’t forget to leave us any questions that you might have at podcast@autismwish.org

Lia: Awesome. Thanks, guys. We’ll see you again next week.

Matt: Bye.

Outro:
Lia: To summarize, we discuss how scientists can identify autism and children 80% of the time based solely on their sniff responses, how your child’s reaction to food may be due to smell rather than taste, and how you can work with an OT or at home to help your child to just overwhelming smells for fun games such as guessing and matching spices.

Lia: Tune in next time as we go over the sense of hearing and answer questions such as why does my child panic or cover their ears when they hear loud noises? Why doesn’t my child respond to their name and how can I get them to respond? This is Embracing Autism.

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Resources:
Olfactory sense in Autism
Relationship between smell (olfactory) and taste (gustatory)

Thriving Under Pressure
Show Notes for Embracing Autism Podcast —  Ep. 204

Introduction:
Lia: Today we will talk about the sense of touch and how differences in this area can impact certain behaviors such as toe-walking, pressure-seeking and head-banging. We will also touch on research surrounding the relationship between the vagal nerve, synesthesia, and therapies that may help. 

Lia: Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice and support while spreading awareness and acceptance of autism spectrum disorder. 

Lia: I’m Lia! 

Matt: And I’m Matt! 

Lia: And each week, we’ll discuss our journey with autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources and sharing our personal stories. This is — 

Lia & Matt: Embracing Autism!

Discussion:
Lia: Hey, everyone, welcome to our latest episode, and in this one, we will be going over the sense of touch. I think this is one of Matt’s favorite senses. 

Matt: Yeah, it’ll be a good one can give some feedback to what is it called synesthesia, later? 

Lia: Yeah. So we made a reference in an earlier episode about synesthesia. This is the episode where we’ll finally talk about that, because Matt has some personal interesting stories to share there. 

Matt: Sure. So we’ll get to that a little later. 

Lia: And don’t worry, we’ll explain what it is. For those of you who don’t know, what we’re going to do today is we’re going to go over a few key areas that were related to touch that we realize impacted our kids. And a couple of things that didn’t directly impact them, but is kind of common in the autism world. First of all, we’re gonna go over his bath time. We talked about it a little bit before in I believe the OT or occupational therapy episode.

Matt: Right, I think we talked about our youngest daughter and her exposure to bath time and how she wasn’t a fan at all and was absolutely terrified with water altogether. So the different steps that we went through for that I think we mentioned that in OT.

Lia: The reason we mentioned that briefly is because that is something that’s associated with the touch sensitivities area of autism. One of our kids is obsessed with bath time and water and the other one is very avoidant with water or was until we got her through occupational therapy. And that basically boils down to that whole hyposensitivity versus hypersensitivity. So hypo being under-sensitive and hypersensitive being over-sensitive.

Matt: Right, and I mean, completely different for each kid, that was kind of a fun experience to go through where one loves it, one hates it, and just kind of not knowing what to expect with all the other senses together.

Lia: So basically, with bathtime, what we had to do, we had to like transition them slowly, particularly the younger one, so we had to just get her wet first or just use wet wipes and then slowly transition to increasing water into the bathtub until she was okay with it. And then eventually she became okay with showers. So that was a really long process that we do with our OT. But the reason that bathtime may be difficult for some autistic kids is because it actually relates to how your brain is receiving signals from your touch —  the nerves in your body, basically, that send that touch signal to your brain when it comes to autism. It seems like some kids have that nervous system hyper-sensitive, where they really feel everything really easily and quickly. Whereas other kids are hypo-sensitive, and they really need a lot more of that signal to reach their brains. And that kind of relates to other behaviors in that realm like the toe-walking. With the bath she was extremely hypersensitive to the touch and feel of the water.

Matt: And it could also be like we think about temperature for the water as well could have been a factor like our oldest daughter, she’ll run outside in freezing rain, it doesn’t matter how cold the rain is, she’s perfectly fine with that. Or she’ll take bath time where the water is much warmer than just the outside rain. And it makes little difference to her cold, hot, she loves the water either way, but for our youngest daughter, she doesn’t like going outside in the cold rain, she’ll just kind of freeze like a deer in the headlights. And then even during bath time, if the water is slightly too warm, she’ll hate that as well. So we had to find like that happy medium with just the temperature alone.

Lia: And we realized with our older daughter and we think that it might also be the case with our younger one that when it comes to touch, there’s also kind of like this combination with deep pressure as well. And so for the older one, she really loved the bath and she really loved the water and we noticed that we would let them go outside and play in the rain as well. And we noticed that when it was like raining kind of lightly she enjoyed it but she wasn’t like freaking out you know, she wasn’t like super excited. But on those days that it was kind of like torrentially raining where there isn’t lightning or thunder or anything like that. But you get that like really hard downpour where if you put your hand outside and you hold your hand up into the rain, you can feel that sometimes honestly for me it even hurts because it’s beating down so hard on your skin and I noticed that she actually loved that. So I remember at our old place when it would rain really hard she would go outside and she was sitting there having a blast just running around and she would put her head up in the rain and her hands out and just run around and I remember me going out there for like five seconds and I was like oh my gosh, this is like super painful, I don’t know how she’s tolerating it.

Matt: It’s like the shock of cold rain, as well as like, almost like little needles because — 

Lia: It literally felt like needles or like ice just like smacking you. But she loved it.

Matt: Right? It’s very interesting just to see how that doesn’t even like, faze her.

Lia: And I remember talking to the OT about that, because I was a little bit concerned. And she was like, oh, it may be that she just needs this as kind of like an alerting type of stimulation. So because she’s under sensitive, she needs more of that environmental pressure, or that deep pressure or just that stimulating effect, like the really cold temperature, things like that. So that she can feel what we would feel with less, that kind of correlates with that whole deep pressure thing and how sometimes it’s associated with not really being able to feel pain too.

Matt: And we’ve kind of seen that outside of just bathtime going out in the rain, we also see in other areas that they are seeking additional pressure. So I think we mentioned real quick on the toe walking, whenever they’d walk around on the ground, they’d always be on their tiptoes just kind of walking. And I remember it was kind of a struggle for us on a couple different levels to get her to actually put both her feet fully on the ground, mostly because I think they were so young, us saying like walk on your feet don’t toe walk, I feel like they didn’t know what that actually meant. Because that I mean, they were just learning basic words. So I mean, it wasn’t like we were able to explain to them walk on your feet, because we knew that that was way over their head. So we had to find creative ways to try and get them to actually walk on their feet using their heel as well.

Lia: And that was more of like the avoidant behavior. So when they were going out, or when at least the older one would go out in the rain, that was that behavior that was like seeking the pressure seeking the touch input, whereas the toe walking, they were both avoiding touch in that area. So they basically did not like having their feet touched, tickled, caressed, anything like that. And with the older one, she was very sensitive with her hands too, where she didn’t like having her hands touched or anything like that. And so the toe walking was a way to kind of like avoid making contact with the floor, which for us most of our house was carpeted. So we feel like in our particular case, it may have been the texture for some other kids, it might be temperature, like if you have a tile floor, it might be really cold and they’re avoiding the tile. 

Matt: Yeah, I think for us, I didn’t really notice a difference between if they were in the tile, or like a tile kitchen versus like the carpet, if they only did it for one versus the other. Or if it was pretty much all the time.

Lia: It’s kind of hard for us because our place is like 90% carpet, so it’s kind of hard to tell, because that’s all we have. So it’s kind of hard to judge. But I know with other people, it depended upon the texture of the floor. One of the things that we found that really helped us out with toe walking, because toe walking can be a problem —  because if your kid chronically toe walks, and a lot of autistic kiddos do, it can actually lead to the shortening of the ligament that’s in your heel, kind of like high heel syndrome. And because of that some kids end up not being able to stretch it out regularly, so they’re not able to put their feet flat anymore and that can require surgical intervention.

Matt: So yeah, I never knew that. As soon as we kind of learned that I was kind of like, oh, no, like, Okay, we need to figure out how to address this pronto. Like, let’s get this resolved. So we don’t have any additional problems down the road.

Lia: Some people end up having to go to like an orthopedic and get those orthopedic shoes. We did see one but they said that they didn’t feel like she needed one. So instead, they recommended getting shoes that had kind of like the high ankle support. So more like boots, I guess you would call them or booties. And so one pair of shoes that worked really well for us was the Ikiki brand shoes (paid link), we’ll put a link in the show notes because I can’t spell it. But they’re these shoes that have that ankle support. And they also are wide enough so that if your kid does need any sort of like foot brace or anything like that, it does fit in the shoe. And these go from like toddlers to like younger kids. I think they go to like size nine or so for like 12.

Matt: 12 or so, yeah.

Lia: Yeah, so I think they go pretty large size. And so the benefit of this is they squeak in the heel. So we were able to teach our kids that if they put their feet flat on the ground, it’ll engage that squeak. And it started as kind of like a little reinforcement, little reward so that it would encourage them to keep their feet on the floor.

Matt: And when they had just gotten them they both love the idea of it squeaking. I remember, our youngest would kind of like stomp with kind of her heel just so she could hear the squeaking noise that she was creating. And now as they’re getting a little bit older, they’re requesting that we turn off the squeak sound. I mean, they’re walking on their heels just fine. Now thankfully, the shoes do allow you to turn off the squeak. So it’s not a constant just ringing in your ears.

Lia: Yes. And like there’s a double benefit to that. So one is the squeak is that reward that you can use to kind of encourage your kid but the other benefit to that is if you have an eloping kid, if you turn on the squeaky shoes as you’re going to say like the mall or something like that, and your kid just happened to get away from you, you can still hear them. I’ve had cases where my kid’s outside, I’ve lost the line of sight of them, but I can still hear them from the shoes. And so I’m able to easily and quickly find them. So that’s another benefit. 

Matt: And it doesn’t seem like the squeak is too loud. But you could definitely pick it out from a little bit of a distance. Yeah. So thankfully, you’re not going deaf. It’s just the constant squeak squeak squeak with every step that they take.

Lia: It can be cute at first and annoying later. So I’m glad it has the switch.

Matt: Yes. 

Lia: So that’s a recommendation I’ll put in the notes for you guys to find that. To go along with that sort of sensory feedback component, there’s also kiddos that need a lot of like deep pressure. And there’s different ways that you can assist with that. So there’s a compression that’s and the weighted vest. Right?

Matt: Right. So for the longest time, we had just had the compression best. And I thought that was more so for — 

Lia: -the older one.

Matt: Right.

Lia: That was because she was often seeking deep pressure by squeezing behind furniture. 

Matt: That’s right, okay.

Lia: Or she would always like if I was sitting on the floor and leaning up against a wall or something, she would always come up behind me and try to squeeze between me and the wall. She was like constantly looking for a way to be smushed. So our OT basically recommended that we try a compression vest for her.

Matt: Now the weighted vest was for the youngest one because she was seeking kind of the climbing everywhere hyperactivity is that what the main point of that was? 

Lia: Yes

Matt: Because that was also in a way is like kind of also heavy work as well.

Lia: Yes. So like there’s a difference between a compression vest and a weighted vest. The compression vest is more of a stretchy material that you can kind of tighten up around you. So it feels more like a squeeze.

Matt: Like compression socks, but like for your body like your torso.

Lia: Right, and you can adjust the tightness, there are different sizes, so you can make it so that it’s the amount of squeeze that your kid is seeking, basically. And the weighted vest is basically a vest that has weights in it depending on the age of your child, it’ll tell you what weight is appropriate. So they’re giving you both feedback like physical touch feedback, but they’re slightly different because one is more of a squeeze pressure and the other one’s more like weight pressure that’s kind of like pushing down on you.

Matt: And then obviously talk to your occupational therapists because I think they have durations of time that you would wear the vest like 20 minutes, half an hour or something, it’s such a short duration of time that you would actually wear the vest like a camera, what that time is.

Lia: I would definitely recommend that you do not use a weighted or compression vest until you’ve spoken with an occupational therapist because there’s a specific protocol that you’re supposed to follow when you’re using these vests. So there’s a certain time limit, there’s a certain way to do it and they tell you when’s the best time to do it, whether it’s like before meal time, xy and z. So definitely talk to your OT before you do it. But if you’re interested, bring it up with them and se. We found that for both of our kids, that was actually really helpful. And then with the squeezing into tight places, not only was the compression vest helpful, but we also found that our youngest one in particular, who was very motion-seeking, she did really well with the inflatable canoe (paid link). 

Matt: That’s true, because she was able to kind of squeeze in there, she had the pressure kind of around either side. And I mean, it’s mostly filled with air. So it’s not like she’s not gonna get hurt or anything. And then she can kind of rock back and forth. So she’s like on the water like a little like canoe floating. But now she would kind of drag that out of the corner and go into the middle of the room so she could kind of climb into it. And it was something that she could completely control. So if she wanted to spend five minutes in her little canoe while reading stories she could or if she wanted to climb out of it. It’s not like she was restrained into the canoe. She can come and go she pleased. So I thought that that was good. I liked that she was able to self regulate what her body needed whenever she needed.

Lia: And when we’re talking about an inflatable canoe, we’re not talking about like what you get to go on a lake somewhere. 

Matt: Oh, no, no. I don’t think it would float very well down a river.

Lia: No, it’s basically like a cloth-covered canoe. You can find them at like special needs stores or things like that you can find on Amazon too. They’re a little bit pricey, but basically they do inflate but they inflate fully all around so that it kind of feels like you’re being swallowed up by little envelope, because it envelopes around your body.

Matt: And the shape resembles a canoe.

Lia: They are also called pea pods somewhere some places because they also they kind of look like a pea pod as well. So basically, sometimes your kid may need assistance getting into it because since it does squeeze it’s kind of hard to get it you got to wiggle them in a little bit. But my kid really loved that deep pressure. Whenever she was going crazy with like the spinning and all that stuff, we would take her and put her in that deep pressure canoe and it would totally calm her down. And then the little bonus was just gently rocking back and forth and then you got both deep pressure and motion in one and it totally chilled her out.

Matt: I mean when she was little we didn’t put her in because she wouldn’t build it figure it out. But now that she’s —  granted she’s only two —  but she’s she’s able to figure out crawling in and she’s even able to move the canoe herself so she’s able to take charge on that one and kind of control what she needs. 

Lia: And the other good thing about those canoes is they are for all ages, so they have small ones and that’s the one that we used for our kids, but they have larger ones that even fit two people or I’ve seen adult autistic adults use the larger ones and really love it. So the canoes are appropriate for all ages. So if you have like an autistic teenager or something like those would work great for that as well.

Matt: And then I also wanted because this just reminds me as far as like, sometimes, like our girls would be restless, kind of not wanting to stay in bed. And we found that they have like weighted blankets for young children, And it serves a purpose of giving them comfort that they have, like, I don’t know how you’d explain it — 

Lia: Like a hug kind of. I know like for me in particular, I also use weighted blankets myself, because I have found that it actually is like really nice to have that deep pressure and it helps me go to sleep. So I know that it’s worked really well for our older kid as well. But our youngest kid has not been super receptive to the weighted blanket.

Matt: It’s kind of a hit or miss because sometimes like when we’re tucking her in, she wants us to lie on her like when we’re hugging her, she should like pull us down so we’re like closer, she can feel pressure of us leaning over her. So I mean, sometimes I try and tuck her in with the weighted blanket, she still feels like some type of like pressure while she’s dozing off falling asleep. But yeah, usually she’ll kick it off and do her own thing.

Lia: Yeah, so you’ll have to gauge the interest of your child and see if that’s something that they actually would want and benefit from. The other thing to keep in mind with weighted vest, compression vests, all these things, and weighted blankets is make sure you run it by your pediatrician or your OT first. Because if your kid has any other underlying medical conditions, it can impact that like breathing issues or anything like that. The other thing to keep in mind is make sure they’re not putting it over their head, because that can be a risk. And then the third thing is, when you’re getting a weighted blanket, you want to make sure that it’s no more than 10% of your child’s body weight.

Matt: We definitely make sure that we’ve made the calculations for that and that we got them situated. But yeah, talk to a professional before you even consider it. 

Lia: But it is an option definitely worked for one of our kids at least so and I love it. So I’m a big fan. The other thing that we learned about with our occupational therapist when it came to this deep pressure, sensory feedback with touch was something called joint compressions. So our youngest one again, she’s the one who really needed constant feedback, because if she doesn’t constantly get some sort of like touch feedback, whether that’s us holding her rocking her back and forth in a rocking chair, or swinging her or something like that, she really needs touch and vestibular feedback. So if she doesn’t get that she ends up spinning a lot, she ends up running a lot, she ends up getting hurt, because she doesn’t really know that whole body in space sort of thing. So the OT recommended that we tried joint compressions, when she’s really out of control with like her movement.

Matt: That was basically kind of I think of like a mini massage going down the body. So she like feels like where her body is in space. Is that what you’re referencing?

Lia: It’s kind of like that, yeah, that desensitizing sort of thing where you’re adding some sort of pressure. Now, this is another thing that again, I would not recommend that you do without the consent and the assistance of an occupational therapist, because they will need to show you exactly how to do it because if you do it and appropriately, then it can end up causing harm. But basically, what they taught us was you kind of go around each of the joints, the major joints, so like your knees, your ankles, your elbows everywhere, where the joints meet, and you put your hands on each side of the joint, you kind of push them together, and then pull them a little bit like gently but enough to kind of exert a little bit of like a squeeze and a tug. And then that kind of helped out. And then the very last one is pushing down on her head as well. Again, you can tell from what I’m describing that this could go wrong easily so make sure you run it by a doctor or OT first, like do not just do it from listening to this podcast. That, again, is joint compressions and you can bring that up with a therapist. The other thing that kind of goes along those lines is the head-banging behavior. So with the head banging behavior, we noticed that that turned out to also be a touch issue, it was that she was seeking sensory feedback via touch.

Matt: She was seeking kind of the motion. Instead of her running around the room falling down she was kind of just banging her head on her crib to try and get the same type of sensory feedback. For that one, we kind of looked into a safe alternative of okay, how can we get her to get the same feedback but not injure herself in the process because we didn’t want her to bang her head on the wood crib. So we had spoken with our occupational therapists and they recommended motion toys or motion activities that she would be able to have in her room, which would allow her to — 

Lia: -self regulate. 

Matt: Right and thankfully, she was at the age that we were able to transition her into a toddler bed out of the crib so we were able to kind of get rid of the crib altogether. And then we’re able to have like a small little child rocking chair, a little bouncy horse and-

Lia: The slide.

Matt: Right. We actually put like a little two or three step slide in their room, lucky kids.

Lia: And the slide also squeaks!

Matt: They’re able to kind of go up the slide, slide down and kind of rock on the horse. I mean, just anything if they need to get like a little motion out when they’re taking a nap or when we put them down to go to sleep.

Lia: So basically what we learned from that was essentially that her specific head-banging behavior was due to more of a motion-seeking behavior and a pressure-seeking behavior that we are able to redirect. But not all head-banging behavior may be originating from a need for deep pressure or touch, it may be coming from like frustration with inability to communicate, or can be from a sensory overload. So it’s important that you kind of monitor what is happening when your child has head-banging, like what do you think triggered it? What was going on in that situation? And do a lot of observation and maybe even note taking to see if you can find a pattern? And then that will help you address? What is the trigger? 

Matt: Yeah, I think we kind of thought of it very, like analytical like, okay, like, what are the variables for her having this behavior? And then trying to figure out okay, is there any way we’re able to change something and get a different result from the head banging? And I mean, that’s what we kind of discovered that that was the situation for us.

Lia: Yeah, it ends up being kind of like observational science, where you’re just kind of like watching behavior, trying to see if you can see the root cause .

Matt: Take out one item and see if it makes a difference.

Lia: You put in your variable, yeah, you’ve got your constant. That’s basically what did it.

Matt: I mean, it was the same thing when we had to do bathtime. With her, remove something, see if it makes a difference, and then try and manipulate-yeah.

Lia: Yeah exactly. So just keep trying. And again, always just bring it up with your therapist and see if they can help you out with your specific case. That’s just something that worked for us. So basically, just all in all, when it comes to the sense of touch, it’s really a combination of hyper-sensitivity, which is kind of being like over-sensitive, and hypo-sensitivity, which is kind of under-sensitive, and that’s usually more with avoidance behavior. Some kids who are hypersensitive, like ours, they may be more prone to injury because they don’t feel it like that one time our kid ran through the thorn bushes.

Matt: That’s true. The oldest one kind of got away from grandma. 

Lia: Oh, yeah.

Matt: Going down the hill, and then kind of into the thorn bushes. Thankfully, we were able to get her out. But it didn’t seem like the thorn bushes or the prickles on the leaves seemed to faze her at all.

Lia: Yeah, she was basically running through the thorn bushes and as they were like cutting her —  because she had all these cuts across her body —  she didn’t seem to notice that at all. And she just kept pushing further and deeper into the thorn bush like she didn’t think ‘Oh, ouch, this hurts. I want to get out.’ She just kept pushing through as if nothing was happening.

Matt: But even the same thing. I mean, I’ve noticed that when they’re running and they fall down and they skin their knee. I don’t think they —  

Lia: They never really notice.

Matt: I was gonna say they never really like cry like you think like a neurotypical kid who falls, they’ll cry. I don’t think I’ve seen our girls cry when they skin their knee. I think they’re just kind of like, ‘okay, on to the next thing.’ 

Lia: Yeah, so depending on your kid, that may be the case, or they may be hypersensitive, and maybe they’re super sensitive to pain, for example.

Matt: That’s true.

Lia: Another way that we knew ours was hypo-sensitive is because she liked to hold and carry around ice cubes. And I was trying to hold the ice cube in my hand as long as she was and I could not do it because it hurt from how cold it was. But she was just sitting there like nothing.

Matt: Right but for us, I mean, that’s another fear. Like, if they’re not registering pain, you would still cause damage to your skin, muscles, or anything but if it’s not registering, they can cause great damage to themselves without necessarily knowing it. So I mean, that’s something that we’ll have to keep an eye on just kind of as a grown get a little bit older.

Lia: Yeah, like teaching them about frostbite and things like that. 

Matt: Right.

Lia: Exactly. Now we get to talk about your fun little story, if you want to go ahead and-

Matt: Oh my gosh.

Lia: Should we first discuss what synesthesia is?

Matt: Yeah, I’ll let you dive in. 

Lia: You want me to do it? 

Matt: Yeah, you can do the setup for.

Lia: So Matt’s got a fun little story, because he’s actually experienced synesthesia. Synesthesia is basically when there is a stimulation of one sensory component, but the perception is in a different sensory component, if that makes sense. So basically, like one sensory system is triggered. And the normal expectation is that that means you would get an output from that sensory system. But what actually ends up happening is a different sensory system sends the output. So for example, you can have music triggering colors. So like when you hear music, you see a color. So for neurotypical people, that doesn’t happen, but for those who experienced synesthesia, they might see music or they might taste words, they can evoke an actual sensation of a taste in their mouth when they read a specific word. 

Matt: I guess the easiest way for me to kind of break it down in my mind, it seems like it’s almost like the blending of the senses. So you have like two senses that shouldn’t necessarily be intertwined, but in a weird way, they are kind of mixed together if that.

Lia: Yeah, in a way, they’re kind of like cross wired a little bit. So it’s kind of like you get a cross-wiring where you’re not supposed to in the brain.

Matt: It’s kind of like experiencing the world and kind of a different way.

Lia: And the reason that we bring this up is because research has shown that autistic people have have a greater chance than the average neurotypical peer of having synesthesia. 4% of the general population has synesthesia. 19% of autistic people experience synesthesia. So that’s compared to the 4% of neurotypical people. So that is like, I can’t do math here. That’s more than triple at least. 

Matt: Right.

Lia: Yeah, so that’s actually almost I would say, Yeah, almost five times more, right? Because five times four is 20. 

Matt: Math lesson for the day.

Lia: Math is not my strongest suit people. So yeah, that was really interesting to see that there’s a strong correlation with synesthesia in the autistic community when compared to neurotypical peers.
 
Matt: Right.

Lia: So with that, I get to lead you and to Matt’s fun story with experiencing synesthesia, although his was not autism related. 

Matt: Yeah —  no, I’m happy that we actually have a word for it. Because for years, I just thought I was like crazy, though. 

Lia: That too. 

Matt: But no, I mean, because I didn’t know that there was actually a thing for it. And then, I mean, we discovered it, I was like, Oh my gosh, yes. So no, I was in my early 20s and I had undergone a minor surgery, and I had been given painkillers to deal with the pain. And so I mean, I was staying within the dose limits, I didn’t do anything of abuse or anything. But I remember I was watching The Big Bang Theory and then we have the colorful intro with like the atom and the different colors spinning around it. And that’s when I was able to feel colors. So I wasn’t like reaching out to like, try and feel like the TV or anything. I was sitting watching the TV show, but I was able to hold my hands and I was able to feel resistance as if someone had thrown like a ball or like a large block or something. So I could feel the dimensions of like the different colors as they were like going through the TV screen. So for like the color green or something, it was kind of like a smooth cube-like shape that I was able to kind of feel my hands around. And then blue or something was more like sphere-like, but it’s basically like it almost felt like someone threw a cube to me and I was feeling the cube as I was watching the TV show like a baseball or softball size item. And I remember just like watching it just kind of like moving my hands around and not really sure what was happening thinking I was going a little crazy at the time. But that is my my small little anecdote there.

Lia: Man, I wish I was like your mom walking in on that, that would have been so funny to see you like putting your hands in the air in awe. 

Matt: I was doing it very subtle. I was just sitting on the sofa just watching and just kind of like moving my hands around like I would if I was holding like a softball or something. I was trying to figure out like what is —  like you actually feel like there’s something there you can actually feel like the resistance against your hands like if you’re pushing against like a softball. Like you can’t push through it and touch the other hand, there’s resistance there because you can actually feel the item. It was just, definitely a strange sensation. And I’m not really sure how I felt about it. But it was I almost thought of it as like a kind of an annoying thing, because I couldn’t understand what was happening. And I didn’t know what to do with that. And then years later that I find out that oh, there is actually something called synesthesia but it was definitely a weird sensation that I was not a fan of because I wasn’t used to it or knowing what was happening. And but that’s my that’s my two cents on that.

Lia: That is basically synesthesia in a nutshell. But again, his was medically induced. 

Matt: Yes, unfortunately. 

Lia: But those who experienced this in the autistic world, like this is what they experience all the time. Like, there’s no way to get out of that. It’s just eye-opening. Because like for you, it was unnerving and you only had to deal with it for a short period of time. So just imagine those people who experience this 24/7 their entire lives. So that was really interesting. We’ll just wrap up this episode again, with a couple of interesting studies that I found related to touch. I thought that it was really interesting to see that basically, they found that patients that were experiencing hyper or hypo sensitivity to touch — they were either feeling things really intensely or not as intensely like we mentioned — they basically showed that for some autistic individuals that can kind of manifest in not being able to wear certain textured clothing, right, so they might have really specific preferences because they might not be able to withstand certain textures. For me, I’ve never been able to wear jeans for example, like I just cannot because they’re scratchy and itchy and hard and I’ve never been able to wear them I can totally empathize with that. But they found that this isn’t just limited to like clothing and things that you wear on your skin. It’s also things like being able to go outside. Like there’s some autistic individuals that going outside is stressful because they’re overly stimulated by things that you don’t think necessarily are related to touch. And that’s like we mentioned before the rain, but also the wind. And remember older one was like she actually loved when it was windy like she would kind of like freak out. You remember that?

Matt: Yeah, I remember holding her and her being super excited for a slightly breezy day.

Lia: Oh yeah, like arm flapping like grin ear to ear like super excited because the wind was blowing on our face. 

Matt: Yeah, that’s true. 

Lia: For some kiddos that’s like really great and like they love it. But for some other people that exact same stimuli can actually be physically painful. So that’s something to keep in mind. But when I was taking a look at some of these studies, I also found that it was really interesting because they found that there are actually several links between autism and deficits in what’s called discriminative and affective touch; they found that 96% of autistic individuals reported having some sort of sensitivity to sensory stimuli. So that’s in general, autistic people have sensory changes or differences from neurotypical peers. But of those, 96% —  a majority of those cases were specifically tactile sensitivities. So things involving touch. 

Matt: Interesting just to think about because your perception of the world around you might be completely different from how they’re perceiving different textures and things. So I mean, that’s kind of interesting.

Lia: Yeah, cuz it’s like 96% of what we see, basically, that’s basically all of it.

Matt: Or just a different feedback. So I mean, like, something might be not as extreme as like something as smooth to you rough to them, but like just a different feel, or a different way of discovering the world. 

Lia: So that’s kind of like what they were looking into these studies, is they were looking at specifically non-painful touch, and in non-painful touch, there’s like two types. So they have like one kind called discriminative, and one called affective, affective is kind of like, you know, affect like your state of emotion. That one’s more like emotional-related touch. So things like when that cute guy comes and kind of brushes your hand and you —  

Matt: I get a happy. 

Lia: You get butterflies in your stomach, that’s affective touch. Discriminative touch is discriminative, meaning you can discriminate amongst things like if you were blindfolded and you put your hand in your purse, would you be able to determine what’s a pen versus what’s your wallet. That’s discriminative touch because you can kind of feel the differences in things. So basically, they found that discriminative touch is something that helps you find things. So that’s associated with like pressure and feeling the shape and feeling textures, if something vibrates, things like that. Your neurons are firing in a specific way to be able to do that. Whereas the affective touch, they’re kind of firing in a different way so that you can get things like the sense of temperature, whether somebody is like rubbing your hands slowly or fast. Those are two different ways that your neurons are kind of like wired to basically translate those senses to your brain. So what happens is, they actually go to two different parts of your brain. So they’re sending kind of like two different messages. But the process of that is actually very similar in terms of how those neurons send that signal to your brain. So basically, the neurons in your skin, they basically respond to specific stimuli. So let’s say they respond to like vibration. So then all those neurons in that area, they can detect that — Oh, something is vibrating on here. And then from that, they’ll give you like a brain experience. When something’s vibrating, that sensation, that you get of vibration and the motions and everything associated to that is the experience that then happens in your brain as a result of that. For example, if you just grab something off of the table, some of the neurons might basically say, oh okay, there’s this thing and it’s pushing into my skin, I can feel that there’s curves here, there’s edges there, I can feel that it’s sliding across by hand when you accidentally had it slip a little bit. So that’s what helps you with your fine motor skills and helps you make sure that you are grabbing it, so you don’t drop it or lose it. But again, there’s like the emotional component too. If you were picking something up, that elicits an emotional component, that’s a slightly different area of the brain. Your overall tactile experience is built by activating a combination of both of these types of touch sensitivities. And what they’re finding is that this perception is kind of changed in the autistic brain. So basically, they found that there’s links between autism and deficits in this discriminative and affective touch. 96% of autistic patients report some sort of altered sensitivity, which we mentioned before, and that’s hyper or hypo sensitivity in tactile stimuli. But what they found was basically that the patients that had basically little to no autism traits showed a really strong activation in the social areas of the brain as well, whereas those who showed more autism traits showed less activation in the brain in the social areas. And that was directly related to touch, which I thought was really interesting because it shows that touch is also correlated to the social aspect, which is why they theorize that the sense of touch is kind of associated to that autism rewiring because they’re noticing that it’s overlapping with the social aspect of the brain as well.

Matt: Interesting, I wouldn’t have made the assumption that touch would also be related to the kind of a social element as well, it’s just interesting to see, I would have never guessed that in a 1000 years.

Lia: really interesting, the more that I look into the different parts of the brain that are associated with the senses, it’s really interesting to see how just how much they are related to the social parts of the brain as well. So if you think about it, then it totally makes sense why people on the autism spectrum also have like both a combination of sensory and social deficits.

Matt: Right, if they’re interlinked, then one change to one would affect the other.

Lia: Exactly. And they’ve also found that studies have shown that actually very interesting enough massage or touch therapy can actually relieve some of the common physical and mental stressors in autism. So things that would include things like physical symptoms, like muscle spasms that some autistic people complain about, or things more socially related, like social anxiety. So that’s kind of interesting because you wouldn’t think that a physical massage would actually influence social anxiety in the brain. But they’re saying that the two are actually linked, the deep pressure, the touch sensitivity, the sense of touch, and how you react to social situations. Isn’t that interesting?

Matt: I’m just thinking, I was like, okay, I guess like, we can get the girls massages and see how they socialize after that.

Lia: Touch therapy specifically, they said it can have beneficial effects on linguistic and social abilities as well. So it also helps with like language, and they also found that it has a biochemical effect. So it actually is showing physiological changes in the brain. And one of the two areas that they mentioned that this affects is both the vagal nerve system, and also GABA receptors in the brain. So this is getting a little more nitty gritty.

Matt: Yeah kind of out of my wheel house, but those terms sound fancy.

Lia: Well, okay, so basically vagal nerve activity is basically what is triggered by the massage itself, that is the vagus nerve, which is basically part of the brain that sends signals out to other parts of the body, including your heart. And so basically, you’re able to stimulate the vagal nerve by massaging around the neck in a specific way, there’s a specific way they have to do it. And basically, they found that this has a lot of beneficial effects for autistic patients. So they found that it’s correlated with decreasing and heart rate, which helps with like anxiety, because if you’re anxious, your heart rate goes up. They have found that massaging the vagal nerve essentially has been able to decrease seizures, as well as help them focus more and sleep more. And it also helps kind of decrease that anxiety. So it was really interesting that this vagal nerve stimulation or VNS, it was actually beneficial. There’s two ways though, there’s like the massage version and then there’s like a stimulator kind of like a pacemaker. I don’t really know which one does which because the study mentioned both. But regardless, it was really interesting to see that you could stimulate that nerve and then get therapeutic effects from it.

Matt: Well, we’ll have to take that moving forward. 

Lia: Maybe not the stimuli, like pacemaker, but if it’s just a message, yeah.

Matt: Well, no no, but like a massage.

Lia: I’m all for like some sort of massage.

Matt: Yeah, like a relaxing — 

Lia: Yeah. But they did specify that this is specifically in reference to massages, not like the deep tissue massage. I think that’s what like a Swedish massage or something like that?

Matt: Probably.

Lia: I think so. So it doesn’t work with that type. It has to be just like the gentle normal massage that it works with. So that was really interesting that I’ve read. And then they basically said, by doing the stimulation in these massages that you’re essentially increasing your GABA neurotransmitter, which is basically the little chemical that fires in your brain. And this specifically is something that helps assist with decreasing some autism effects of the social aspect that’s related to like the vagus nerve. So basically, I know that was like a lot of information. Let me just water it down and like five words, okay, well, maybe not five. Let’s see. Massages —  

Matt: good!

Lia: Help relax autistic people and help relax the sensory systems specifically, which can then in turn help with social anxiety because they have found that the sensory system in relation to tactile touch is directly related to the social part of the brain and social anxiety. Therefore, something like a light normal massage can help trigger that sort of biological or biochemistry in the brain that helps relieve the social anxiety aspect, but can also help with things that are more difficult to treat like seizures and things like that. That was extremely complex, so I apologize, but I will have the studies up on the show notes so you guys can take a look at it and reread it that might be easier to understand that way because this one’s kind of dense. But that was really interesting. And basically, your takeaway is, hey, let’s give our kiddos massage therapies because they’ll love it and it’ll help. 

Matt: Everyone loves massages.

Lia: Unless they’re the type who hates touch, in which case that might not work out.

Matt: Then they might not like the massage.

Lia: But that’s basically all we have for you guys today in this episode, we will be covering the sense of smell next, apologize for the long episode here. There’s so much to cover in the sense of touch. So I appreciate you guys for sticking around.

Matt: And we’ll smell you later.

Lia: Oh my God. Guys, let’s not end on that note. I don’t even know what to say that — 

Matt: We’ll see you next time! 

Lia: There we go — see you next time.

Outro: 
Lia: In summary, we discussed how compression or weighted best may help your pressure-seeking. How as many as 19% of autistic individuals may experience synesthesia, as well as the differences between discriminative and affective touch and the relationship between the sense of touch and social abilities in autism spectrum disorder. Tune in next time as we chat about the sense of smell and answer questions such as, why does my child sniff everything? Why won’t my child tolerate certain foods? What can I do to help my child get comfortable with a variety of scents? This is Embracing Autism!

References: 
Ikiki Shoes (paid link)
Inflatable Sensory Canoe (paid link)
Synesthesia in Autism
Pain sensitivity in Autism
Sensory Processing In Autism
Massage Therapy for Autism
Vagal Nerve Massage

Disclaimer: This article references amazon affiliate links. If you purchase items through these provided links, we will receive a portion of the funds.

Savoring Diverse Palates
Show Notes for Embracing Autism Podcast — Ep. 203

Intro
Lia: In today’s episode, we will touch on the sense of taste and how autistic individuals may experience this sense differently than their neurotypical peers. We discussed feeding therapy, as well as pica, oral stimming and transitioning to self-feeding. 

Lia: Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice and support while spreading awareness and acceptance of Autism Spectrum Disorder. 

Lia: I’m Lia! 

Matt: And I’m Matt! 

Lia: And each week, we’ll discuss our journey with autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources and sharing our personal stories. 

Lia: This is — 

Lia & Matt: Embracing Autism!

Discussion:
Lia: Hey Everyone, in today’s episode, we will be doing all things taste-related. And that is our sense for the day. But we’re not limiting it to specifically taste. We’re also limiting it to oral-related things like oral stimming, or oral-related muscle issues, things like that. So it’s not just taste. It’s like all things mouth related if that makes sense.

Matt: Right, And touching on kind of some therapy action as well in there.

Lia: Yeah, so we don’t really know what to call that. But we felt that all these things kind of relate together under the tastes category for both the taste purposes, but also the oral and muscular mouth part of it. 

Matt: Well said.

Lia: Can you tell I’m not a speech-language pathologist? So one of the things that we wanted to just dive right in here at the beginning is really focus on feeding therapy for this episode, because when it came to the sense of taste for us, and our kids feeding therapy was a big issue. Both of our children actually had to go through feeding therapy, which is usually done through an occupational therapist. 

Matt: So for our youngest daughter, the reason that we actually went through feeding therapy was more of a nutrition route. I think she was probably about a year and a half pushing two years and she still hadn’t really transitioned out of the baby food/ puree world and actually eating solid foods. And we were actually worried that she would kind of drop-down in her weight because she was very, very small when she was first born. And I remember that she was in, I think, under the 10th percentile for the longest time. And even at her- Dare I say biggest peak… her peak, I think she was still under the 30th percentile. So we were worried that she wasn’t getting enough calories because she was just eating basically pureed fruits and hadn’t touched on any type of foods, we actually were referred to the feeding therapist to try and tackle some of those issues.

Lia: So for her it was again like he said more nutritionally focused, her feeding therapy was really like a goal of can we get her to eat beyond baby foods, because she was a toddler now and she was approaching, I think, two, two and a half, although probably pretty close to at least two. 

Matt: Yeah. 

Lia: And so it started to become a problem that she was only doing baby foods and she was not progressing beyond that. That’s why we really intervened with the feeding therapy there. But for our oldest kid, it was actually not like that at all. The issue for her was more that she was having difficulties with the actual physical process of eating food, she did have certain texture issues, temperature issues, things like that with food. So she still had the sensory component. But it’s like we couldn’t even get to the point of dealing with the sensory component, because she couldn’t even just do the physical mechanics of feeding herself because she’s the one who has hypotonia, which is again, that low muscle tone. So she had a hard time just chewing food, keeping food in her mouth, she would keep her mouth open and food would just like fall out of her mouth, she had issues with coordinating food like her hand going to her mouth, and she couldn’t hold a utensil, there were so many issues whenever she would eat or when we got her to eat, she was doing that thing where you just take your hand and you scoop the food out of the bowl with your hand and then you just kind of like smear it all over your mouth and hope some of it gets in.

Matt: I remember her eating kind of like just a bowl of I think just rice. And she would just grab a handful of rice, and maybe half of it would go in her mouth and the rest would just fall down on her bib. And it wasn’t a very efficient way to eat at all. So she definitely had the two elements going there with her just being able to start feeding herself.

Lia: For her it was really focusing on self-feeding before we could even get to the sensory part. So once we were able to address self-feeding, then that feeding therapy did ultimately turn into also the sensory component. Those were the two reasons we went into feeding therapy, which again, was through occupational therapy. So if you need help you go through them. And some autism centers also have feeding clinics. So you can look through that as well. Just to touch on a little bit of what they did —  what they showed us at feeding therapy, just in case you guys are interested in are still on that waitlist. There are a lot of things that you can do at home while you’re working on this. So if your child has issues with self-feeding, or has issues with tolerating certain foods or textures or things like that, we worked really closely with our occupational therapist, and the skills that she taught us really helped us. So one of the things that she taught us essentially was how to slowly transition from basically not touching the food at all to ultimately eating and swallowing the food. This is a very similar technique that we’ll actually talk about in future episodes as well with the other senses. It’s a technique where when you’re dealing with foods specifically, you can start off with just getting your child comfortable with tolerating that food being introduced on their plate. If they’re not tolerating any food, except chicken nuggets, for example, then you might just want to put one piece of broccoli on their plate with the chicken nuggets, and don’t force them to eat it. Don’t force them to touch it, don’t force them to do anything with it. But just get them to the point where they’re comfortable with that piece of broccoli just being on their plate.

Matt: And sometimes even that is a struggle in itself because I’m not sure if when we do it to our daughter, we have a piece of food on her tray or table, I think she has the expectation that we are basically requiring that she eats it. And when we’re starting with step number one, we don’t have that in mind. It’s basically like, let’s just put it right here. Don’t touch it, don’t look at it, just leave it there and then eat something else that you would want to eat. So it’s just getting them used to the idea of here it is, but nothing beyond that basically.

Lia: Yeah, you’re basically desensitizing them at this point to just the exposure of seeing that food. Because sometimes just the visual aspect of it can be a deterrent. One of the things that I did with my kid is I had a plate that I would put on the I guess tray that she’s sitting in, and I have a bowl on the side of it sometimes. And I call this the ‘no thank you bowl’. 

Matt: I thought it was the ‘yucky bowl’. 

Lia: Well, it was but then I didn’t want her to go around telling people yucky. So I changed it to something more polite to the ‘no thank you bowl’. So I basically put this bowl and then whenever I had the broccoli or whatever on the plate that she didn’t want, she would freak out and be like, no, because she didn’t want it. So what I would do is I would just take that broccoli and I move it to the bowl that is still on her tray. And I would just say oh, it’s okay. We’re putting it in the no-thank-you bowl, you don’t have to eat it. Just leave it in the no-thank you bowl. And when I started teaching her that the things that are in the no-thank-you bowl are things you don’t have to eat, she started to make the association of like, okay, I’m safe. I don’t need to eat things in that bowl. So then she started tolerating having it on her tray.

Matt: And I think it was even good because before that she was just throwing it on the floor. So at least we were able to transition from okay, you’re not throwing it on the floor. You’re putting it in the no thank you bowl and just leaving it there. And there’s no other expectation for you at this time.

Lia: And don’t think that this just takes one day. This is not a one-day thing.

Matt: Yeah, it’s an ongoing struggle.

Lia: It did not take us like one hot second to be like, Oh, look, our kid now does the nice little no-thank-you bowl. Like no, that took work. It took several days to get her to do that, if not more than a week or so.

Matt: And sometimes she’ll forget and it’ll kind of resort back to something is on the floor because she forgot that she can put it in the bowl.

Lia: Yeah, so if you feel like this is like not possible for your child, you can do it. It’s just it’s gonna take time and just have patience. I know it can be stressful. But basically what you do is after you get them to tolerate it on the plate, then you move up a level. So once they’re okay with it being on the plate, then the next level is trying to get them okay with physically touching the piece of broccoli. So you do not require them to taste it. You do not require them to do absolutely anything else other than simply touch it when they do the desirable behavior like touching it or keeping it tolerating it on the table. Make sure to reward them with a lot of praise and enthusiasm. Like oh yeah, you did it. You touched it, you licked it, you did such a good job letting it stay on the plate, that sort of thing.

Matt: Right? I found that we usually try and do something playful. So like for broccoli, for instance. I mean, she likes broccoli, but when she didn’t, we would call it like a baby tree or something. So we would make it fun as far as like, Oh, can you touch the baby tree. So she kind of feels like it’s like a game or something. So I feel like when we kind of are able to get her a little bit excited about touching that food that she wouldn’t eat. At least there’s that element where she’s kind of interested and she’s not completely disgusted and repelled away from whatever it is.

Lia: Yeah, absolutely, always use your child’s special interest if you can. So we definitely did that we tried just incorporating it to any TV show or anything that she had seen like on Cocomelon or anything like that. So if you can do that, go for it back to the little routine you go from tolerating it from being on a plate to touching it. Now the next step taught to us by the OT is once you go from touching it, then you try to get your child to kiss it. So you just take the broccoli and bring it up to your lips and be like oh look, I’m giving it a kiss Wow, and see if they’re okay with just giving it a kiss. But again, no requirement for them to taste it. No requirement beyond that. That’s the important part is you don’t want to rush all these steps at once because then you’re going to lose that trust and you’re gonna have to start all over. So just make sure on this day when you do this, it’s just a kiss. And then after that you progress to getting them to just try to lick it. Just oh here give it a little lick. Can you just lick the broccoli? You don’t have to eat it just take a little lick and then you can put it back in the no thank you Bowl. After you do that. Then you want to move on to can they tolerate just having it sit in their mouth so they just put the broccoli in their mouth? Oh, can you put it in you don’t have to chew You don’t have to eat it, it’s okay just put it in for a second 1..2..3.. Good job. And then you can offer them the no-thank-you bowl, okay, you can spit it out good job, you did great. And then you praise them and praise them. And then once you get to that point, you are now able to get to the step where they can chew. So you have to go through all these phases before you even get to the chewing point. But once you get to that chewing point, you’re not done this time. This time, when they get to the chewing point, you get them to chew. But then again, you do not force them to swallow. If they’re not comfortable, yet, you offer them the no thank you bowl so that if they feel like they need to spit it, you let them spit it out. But then you praise them for the chewing, good job chewing, I’m so proud of you. And then after you get them comfortable with that, you get to the point where you reward the swallowing, the chewing and the swallowing. All of this is not at all to be done in a day, probably not even a week, probably not even a couple of weeks, it probably would take I’d say like a month or so to do this entire routine properly, when you get from tolerating the broccoli on a plate to actually chewing and swallow.

Matt: And I would say the last three, which again would be them holding it in their mouth. And I mean, of course they can spit it out. Same thing with chewing being able to spit as well. And then finally swallowing I would say those are probably the hardest ones, mostly, I mean, because they’re the biggest steps. But also they’re kind of the ones that require a little bit more praise and effort and kind of any other outside source that you can bring in if you have to sing a song to try and get that last push.

Lia: Definitely- like what we’ve learned from our experience is positive encouragement and reinforcement just through praise and making a big deal on a big show and just being like, oh my gosh, she did such a great job. I’m so proud of you. Sometimes I would go in and tickle her. And I would just look like a total fool. But like, you know, kids love that. So it works for them. But we did that. And we did this under again, the support of an OT who walked us through all of this. And honestly, it worked very well for us. We were able to get her to start tolerating foods, particularly the youngest one.

Matt: Right, she had quite a change. I mean, she still likes the little puree, still the baby food pouches, right. But I mean, they’re more of a kind of almost like a like, reward. Yeah, something along those lines. Like I mean, she’ll eat dinner and most of the time, she’ll eat what we give her or she’ll at least try it. And then as like after dinner, she’ll be like walking by the cabinets and will have like a pouch. So we’ll give it to her because- 

Lia: Oh my gosh, she’ll sneak them.

Matt: But, But I mean, it’s kind of I mean, a completely different transition from where she was, I mean, a year ago.

Lia: Yeah, it’s actually it’s very interesting that because of feeding therapy, and through this process that I just explained to you, we were able to get our child who was only on purees-and even with the puree, she was specifically doing specific ones, she avoided any sort of squash, pumpkin, potatoes, any sort of things like that- she went from that to literally gnawing on a chicken leg like Flintstones style.

Matt: That was lunch today. But he even for like breakfast. I mean, she’ll ask for like a piece of like bacon and like eggs and things. At first, it was a slow transition as far as her trying new foods. And it was kind of like the standard foods little kids eat kind of the snacks and nothing too adventurous. But then as we kind of kept with the process, she was kind of starting to kind of open up her world a little bit to try new foods, and kind of the rest is history, I guess.

Lia: And the other thing to add there with the feeding therapy aspect of it, things that you can do at home is also modeling that behavior. So one of the things we were able to do too, is because they were not willing to tolerate any sort of dips or sauces, they wouldn’t do ketchup nothing like that. We started just modeling in front of them. So we had these breadsticks. And we were dipping them in marinara and we’re like, Ooh, this is so good. Oh my gosh, but we intentionally didn’t offer them any so that they would just have to like, watch us eating it. And so obviously, little kids get curious and like, Hey, how come I don’t get any of those. So then they started asking us like dip dip dip, and I was like, Oh, you want some? Okay, so then I was like, I guess I’ll be nice to share. And because we kind of created this like, it’s special because you’re not supposed to have it but I’m gonna let you have it. I feel like they kind of fell for it.

Matt: I like that you were going in with this as like a game and I was just like, I’m just gonna eat my breadsticks and dip them in the sauce. And it’s also funny that you’re like, Oh, I’ll share with you and it’s like, I don’t think I’ve really shared my like food like-

Lia: oh, you know I end up eating like a third of my food because they now eat everything.

Matt: No, I mean I would if my kid was really wanting it but I’m kind of like no, this is my plate, I’ll give you some and put on your plate kind of thing. 

Lia: But I think that works. I think that works though, like creating this- what’s it called when there’s not enough where you’re like creating scarcity- Yeah, like when you create like a false scarcity to a child they get more curious. They want it more so if you pretend like oh, this is this rare thing. And then they are more excited for it. At least that worked out for us. And of course you give it to them, like we’re not holding out on them or anything. It’s all just like a game of pretend to get them excited about what you’re doing. But you’re not really just trying to be mean, you’re just trying to give them a fun little game and a way to kind of encourage that behavior. 

Matt: Oh, is that what you’re doing? 

Lia: Yes, that’s what I’m doing. I don’t know what you’re doing.

Matt: I’m just eating my food.

Lia: And not sharing. I mean, I’m the nice one.

Matt: Me and my breadstick.

Lia: and they’re just gonna sit there with puppy dog eyes. Anyway, back on topic, basically, that’s the sensory component part of the feeding therapy. But there’s also a muscular, more physical component of feeding therapy as well, where they work on more of the fine motor parts, hand-eye coordination. And they might even work on the muscle and your jawline, if you have hypotonia like our kid did.

Matt: Right. So there’s a kind of a bunch to unpack there, the fine motor skills as far as just being able to hold on to a spoon, fork, utensil, whatever you’re using, and be able to scoop whatever type of food it is and be able to direct it into your mouth. So that’s kind of step one that we kind of were touching on with our oldest with feeding therapy.

Lia: That in itself took a long time. 

Matt: That was quite a challenge because we had to show her that it was even worthwhile to use a spoon versus just her bare hands. And I remember that was a struggle, because obviously, when you’re first trying to teach anyone to use a spoon, and they’re only able to get two beans, or like a few pieces of rice versus their entire hand, I’m sure she wasn’t even seeing the benefit to it when she’s like, I’m not getting as much food. This is a waste of time. But we just had to be very consistent with it that each time she was eating, we had her with a spoon, and we kind of worked with her. So I think this kind of works similar to what you’re talking about kind of the stages with the way that you tolerate the food. The first was being able to have her scoop rice with the spoon. 

Lia: Actually remember before that there was a step. Remember, when she didn’t want to tolerate touching tools, she had a very sensitive hand. So our first step was actually just being able to get her to even hold the spoon because she would keep her palms wide open and refuse to hold anything in her palm. So we had to work on desensitizing her hands with an OT, which we did through a lot of like sensory play. They basically recommended that before you start, have her do like clapping games or touching games or things that she could play with Play-Doh, rice, things like that to desensitize them and then you go into holding the spoon.

Matt: Right, she didn’t want to use her fingers, it was always her finger or her palm was pressed out. And she didn’t want to use her fingers to grasp anything. So you’re right, we first had to have her be able to grasp the spoon before she was able to use it. And then from there, we held the spoon with her and were able to direct it to her mouth to feed her. And then as she would slowly get kind of muscle repetition, then we were able to hold I think her hand.

Lia: Yeah, so that’s part of that fading, that we mentioned, on the occupational therapy episode where you kind of slowly fade away further and further from the hand. So you’re like, directly on the hand, then you move to the wrist, then you move to the elbow, then the shoulder then you just kind of pull away.

Matt: Right. So that was one of the main reasons why we’re in feeding therapy in the first place. And then the other area, I think because she was also low muscle tone was we wanted to make sure that she was actually able to chew her food and that her low muscle tone didn’t have an impact on the physical components with the muscles being able to chew. So they were actually looking to see okay, is she able to put her food where her back molars would be in, and actually grind up her food? Or is she just chewing with her front teeth? So remember, that was another big area that they were trying to check and make sure that everything was good there.

Lia: And they also were checking, that’s when they realized that she was having difficulty chewing harder things. So she could only tolerate chewing softer things. And that’s why she would only do like the only meat she would do is like white meat chicken nuggets, because they’re kind of pretty shredded, But she couldn’t do any of like the tougher meats and she still can’t do any of the tougher ones.

Matt: And I was gonna say even now I mean we’ve had her try some fish and chicken very soft, but as far as anything like a little bit more resistance, she hasn’t really ventured too much there. But that was also I think, where we noticed that she was actually pocketing food as well. So she would keep putting food in her mouth, and then it would just kind of sit in her cheek and she wouldn’t swallow she would just hold it in there. And we were actually worried that she would start to choke on some of the things because I mean it’s solid food I mean I understand like Yeah, it kind of will get broken down with like the saliva but some of the things weren’t fully chewed, you just stick it in her cheek and just kind of keep going about.

Lia: For me the time that that freaked me out was when I found out that one night that she had gone to sleep with food pocketed in her cheek and we had no idea until the next morning, right or like we would just see her randomly throughout the day, we would find out that she had food pocketed that we thought she ate that she didn’t. So that started becoming a choking hazard and that was another thing that we worked on in OT and feeding therapy. So basically what we wanted to do is when we were in feeding therapy, we wanted to work on that just those sensory components, but we wanted to work on again, that muscular fine motor components. So she was able to ultimately learn how to use the spoon, scoop the food, and now she is able to put it in her mouth. But one of the reasons we were able to do that was because I found these really cool sets of spoons on Amazon. And there are these bendable spoons (paid link), I’ll put a link to them in the show notes. But what we did with these spoons is they allowed us to gradually bend the angle of the spoon so that she wouldn’t have to do the fine motor coordination movement of moving her wrist all the way that she needed to because she just didn’t have that motor planning skill.

Matt: And I was gonna say they’re still able to be used as normal utensils …honestly, we still give to the kids now to use whenever they’re eating food, but we just keep them straight as like a regular utensil. I mean, they’re like plastic, but they have some resistance where they’re not flopping around. So you can use them like a regular utensils at the same time if you wanted to.

Lia: They’re perfect, like training spoons. And then after that, you can pretty much still use them as a toddler spoon, they work great. I’m not sure if they have anything like that for older kids, because I honestly didn’t look for them. But I know they have weighted utensils for older kids. I’m not sure if that would help with a muscle tone issue. But for us those bending spoons worked really well, when it came to being in therapy that was mostly the biggest benefit for us. And then the other things that we did that we learned through feeding therapy is not just transitioning into eating things and tolerating things. But we started transitioning into changing temperatures or textures of foods or shapes or flavors or colors.

Matt: And I think this was more of a struggle, or we were more aware of it with our oldest one than our youngest one. So we noticed that she was very picky with various foods, and we had to change how they were presented to her. And then that made all the difference in the world. So for example, a lot of fruits, she wouldn’t want them just as we would give them kind of at room temperature. So we would actually put them in the freezer, and then they would basically turn into like a popsicle at that point. 

Lia: Yea, it’s very important to note here that I’m just going to interrupt for a second because when you freeze fruits, you have to make sure that you cut them into small enough pieces that they’re not a choking hazard. So if you do take this idea, I just want to inject in here real quick, be cautious of the size, because when they’re frozen, they’re hard and you don’t want them to choke. You can continue.

Matt: So I can’t remember what her favorite I thing she likes…she likes pineapple, I think.

Lia: Pineapple and grapes. Well, that one was one of the ones that we really had to cut carefully.

Matt: Yeah, we would cut a grape-like eight times or something. Yeah, something ridiculous. But I mean, they’re small, small little pieces of like a grape, but she would love when they’re frozen. But then at room temperature, she basically wanted nothing to do with them. So I mean, we were able to find that she would do certain foods, were able to do it just a little bit different of how it’s presented. So even her eating like a peanut butter and jelly sandwich. For example, if we use a star cutout, she’s more likely to want something to do with the star versus like the standard piece of bread.

Lia: And when we introduce peanut butter, that’s actually a good example. So she had a very restricted diet where we basically couldn’t give her anything except like maybe a quesadilla was all she would do, just a plain cheese quesadilla. She would do mostly carbs, just bread, crackers, things like that. She wouldn’t really do anything other than like cheese and crackers, honestly. So what I did to try to introduce peanut butter jelly sandwiches, I initially just gave her a spoon with just peanut butter. And then once she got comfortable with peanut butter —  again, I use the same technique I learned from the OT, I then started giving her a spoon with a little bit of peanut butter and a little bit of jelly together on the spoon that I waited till she could tolerate that. Then after I did that, I started putting a little bit of peanut butter on a piece of bread and then a little bit of jelly on a piece of bread. Then I combine it then I gave it to her so that eventually I got her to the peanut butter and jelly sandwich. But it was all super gradual and it takes a lot of time and patience to get to do it step by step.

Matt: And now we’re at what peanut butter and jelly quesadilla? 

Lia: Oh, yeah now she invented peanut butter and jelly quesadilla all by herself.

Matt: No cheese.

Lia: No cheese, but she requested it.

Lia: We did not come up with that idea. She did it all by herself. So who knows? I mean, I always say let the kid lead you. So if she wants a peanut butter jelly quesadilla I will give it to her. Why not? 

Matt: But I also think that the texture is also key. I remember we’d gotten her… a plain granola bar that basically just just had chocolate chips in the granola. And she was fine eating the granola bar. And so she got to the first chocolate chip and there’s like 1000 chocolate chips in a granola bar. So she basically took one bite and then realized oh, there’s a different consistency. I don’t like that. Right then so we found out that it was quite a struggle if there was any type of food that she was eating that wasn’t consistent the entire way through it. If there’s any type of change, she would kind of spit it out and then she wouldn’t want anything to do with the entire thing she like didn’t trust it anymore. So I think I’m not really sure how we — 

Lia: We had to start adding things kind of more shredded. So like when I started trying to add for example, chicken to the quesadilla, I like pulverized it in the machine in the little food processor and put just tiny bits of it in there at first, so she couldn’t notice. And then I would add more cheese and she was okay with it. And then she suddenly wasn’t. So food is something that we are still struggling with our older kids. She goes through like these regression cycles, which can be very typical for autistic kids.

Matt: I also found that I mean, and this might be true of all kids, if she sees something on a TV show, so if she’s watching Cocomelon, and she really wants to try whatever the little kid is eating if we make it for her, there’s a likelihood that she will at least attempt to do it because she saw it on her TV show. So that’s why I think that like if it’s presented in a similar way that she’s excited about it, she might try it. Another example is honestly today with the candy corn pumpkin. 

Lia: Oh, yeah. 

Matt: Yeah. So she, I mean, she had never tried it before. And we gave her a little pumpkin candy corn, and she took a bite of it, and then thought that okay, it’s okay.

Lia: Because we associated it with like Halloween and this little book that she has as a pumpkin in it and things like that.

Matt: Right, and the piece of candy is actually shaped like a pumpkin right? Granted, she didn’t like the candy corn, but she’s like, well, she liked the pumpkin though. Yeah, So my thing was, if it’s presented in a nice way that she likes she’s more willing to try it. So we had just given her an orange ball of goo that had the same flavor I don’t think she’d be as excited to try it. So it’s almost like because she saw the ‘baby pumkin’ the ‘baby’ special interest food, right? She wanted to at least taste or she felt comfortable with trying just to see what it was. 

Lia: So basically it’s just all about getting creative. Sometimes it takes a little more effort than others, but it’s just a matter of trying sometimes there will be regressions, but just keep trying do things try changing the temperature, changing the shape, turning it to a star one day, if your kid is older, if they’re able to communicate, just get ideas from them to see what they would like. And if it’s weird, I mean, it’s still eaten, it’s fine. Like, okay, they want to put chips on pizza. I mean, if that’s what they want to do, as long as they eat it.

Matt: Or if you want to dye milk green or something. I mean, yeah, make it fun. 

Lia: But yeah, we’re still trying to make sure they’re getting their nutrients. The other thing that we want to talk about is oral stimming and chewelry and how to prevent your kid from chewing things and what happens when they might eat things that are inedible. So when it comes to the chewing aspect of that part of this like taste issue is they tend to chew on a lot of things. And most of those things tend to be inedible things.

Matt: I always think it’s interesting because they’re willing to chew on like a piece of plastic or like a piece of wood, but they won’t try like the food that has to smell better than like the piece of plastic or whatever it is. Yeah.

Lia: Yeah, I mean, our kid did chew on wood. Right? Her crib, right? Yeah, she chewed on gravel from our driveway. She almost chewed on cat poop that one time remember,I had to catch her before? Yeah, she almost put it in her mouth.

Matt: But for one of them, I think she was like associated as like a peanut butter and jelly sandwich. Like she was at the park picking up bark and putting in her mouth saying like, Oh, peanut butter and jelly sandwich.

Lia: We had a lot of issues with her chewing things that were inedible and mean downright dangerous sometimes.

Matt: Right. 

Lia: But basically, what we did is always try to replicate what that thing is that they’re seeking with something that is similar. So if your kid is, for example, eating gravel, like our kid was eating, it would not make sense to try to replicate them eating gravel by giving them a chewy, that is just like a silicone rubber chewy because it doesn’t give the same sensation. So what I did for that is, for example, is I replicated the texture and taste of gravel by giving her crushed ice. And she really liked cold temperatures as well. So that alarming taste of the cold temperature mixed with the same crunchy gravelly texture as the gravel worked really well as a replacement. 

Matt: Right, but so that that was a good long-term solution, because I mean, she still likes crushed ice and a little cup to go around chewing on it. But I also thought that in the short term, we also tried to redirect a lot and give her like something else to focus on. So like our driveway was gravel. So if we were able to have her focused on something that she was carrying, so she’s obsessed with ducks. So if we were like, oh, carry your bucket of ducks, so she’s focused on carrying her bucket of ducks, she would be less likely to like reach down and grab the gravel because she’s focused on something else. I think if we’re able to redirect, oh, look at the flowers or something. So she’s not focused on staring at the gravel as she’s walking.

Lia: The other thing that we did is we also gave her pretzel rods to anticipate. So that was something that they taught us in OT as well is when you know when you can anticipate that they’re going to probably be putting something in their mouth so we could anticipate when she was going to try to put gravel in her mouth because it was every time we were going out to the car. So what we did is we anticipated this and so we gave her two large pretzel rods to hold one in each hand for the walk out to the car so that A- she’d already had stuff in our hands so she couldn’t reach for gravel and B-if she wanted to chew on something, we could redirect it to the pretzel rods that were in her hands that are more appropriate

Matt: Right. So I think with those kind of two techniques, that’s kind of the short-term immediate. And then as far as like the crushed ice in our case for the long term, I mean, we saw good results with that as far as being able to shift away from gravel eating.

Lia: So if you feel like your kid might have pica, or any issues with chewing things that aren’t edible, just consult with an OT, an Occupational Therapist, and they can help you come up with techniques. Pica can lead to things like high lead levels. So if you do feel like your child is, you know, experiencing pica, just make sure to talk to your pediatrician and maybe consider getting a lead test because our child did have a little bit of a higher lead count in her bloodstream because of the pica and that can always lead to issues. So it’s just something to take into consideration and monitor closely with your doctor.

Matt: Yeah, I would say definitely get on top of that, because you’re not sure exactly as far as any type of like toxins of what they’re eating or putting their mouth that might have some type of pesticide or something on it that I mean can definitely harm them.

Lia: And to get on the little bit nerdy side of this, I can touch on a tiny bit of science for the end of this episode, and one that comes to mind specifically was about pica. I actually found some research that showed that children on the autism spectrum and those with other developmental disabilities are actually disproportionately affected by both pica and GI symptoms, gastrointestinal symptoms, which makes sense that would be coordinated because if you are putting things into your system that shouldn’t be there, you probably will have gi problems.

Matt: I was wondering like, is it just like the GI problems? Or is it in connection with them?

Lia: In connection, there was a correlation? Yeah. And what they also said is that among preschool-aged children, the prevalence of pica was actually around 28%. In children who had both autism and intellectual delay. It was 14% in children who had autism without intellectual delay, and it’s about 10% and children who just had intellectual delay without autism. But this is in comparison to less than 4% of the neurotypical children population. So basically, what this means, in summary, is that 42% approximately of pica cases involved autism.

Matt: That’s kind of alarming when you figure I mean that that’s something just shy of half, there’s a strong possibility if your kid is diagnosed with autism that you are going to encounter pica, potentially at some point, we had two autistic girls, and both of them are putting inedible objects in their mouth. 

Lia: So on more of the taste end of things, what was really interesting is there’s another study that was done that was looking into taste, reactivity and autism. And they basically found that taste is actually affected in the autistic brain. So how they experience taste has been found to be different than how neurotypical people experience taste. So specifically, this was in reference to things that tasted sweet, as well as things that were sour and bitter. What they found basically was that there was irregular function and functional connectivity of the brain and the parts that were related to taste. The interesting part about that is those parts of the brain were also associated with like social functions. So what it seems to be is that in the autistic brain, the parts of the brain that are associated with taste, because the social part of the brain is kind of lacking because Autistic individuals struggle with that social aspect, that part of the brain is kind of lacking. So it seems like the taste part of the brain took over a little bit of the social part of the brain.

Matt: So kind of the neuroplasticity. 

Lia: Yeah, neuroplasticity thing. So it kind of in layman’s terms, it’s kind of like it took over a little bit and that because of that the taste buds and the taste sensations are a little bit like out of whack in comparison to the neurotypicals so I thought that was like pretty interesting, too.

Matt: Yeah, because I mean, that would explain why they might not want to eat some foods that we’re we’re putting in front of them and why they have to use the yucky bowl- no thank you bowl.

Lia: The no thank you bowl. But what’s kind of cool that the research also shows is that it seems like these things can potentially their theorizing may be able to be treatable with neurofeedback and neurostimulation. So brain stimulation, and usually called TMS therapy. These are things that I actually did as an EEG technician. So if you guys are interested, let me know via message or email us at podcast@autismwish.org. And let me know if you want me to talk about that, because I can talk about what that entails. Just basically briefly, they’re saying that because these things seem to be correlated to over-activity and under-activity in areas of the brain, they’re saying that theoretically, you might actually be able to treat some of these symptoms by doing some sort of neurological Neurofeedback type of therapy.

Matt: That would be interesting to find out results in the near future maybe.

Lia: Yeah, so I know that when I when I did work as an EEG technician, I did see a lot of results for other things like ADHD and things like that. So I would not be surprised that this was also something that can be treatable. I’m happy with my kids the way they are and if it’s something that they’re really struggling and it’s something they really need help with, I have no problem having them go through some sort of treatment to help them out if necessary, but if If it’s not harming them directly, and they’re not upset about it, I don’t have a problem not doing it either. It’s kind of like to each their own. 

Lia: That’s basically all we have for you guys now for the taste episode, we basically will just keep rolling through all the senses. We’ve got a couple more to go and then we’ll switch over to behavioral stuff. But that’s it for taste. And I hope you guys learned a little bit.

Matt: Alright we’ll see you next time.

Lia: See you next time. 

Outro:
Lia: In this episode, we discussed how addressing pica with a doctor is important to avoid possible medical complications. How substitutions have similarly textured edibles can replace harmful eating behaviors, and how the autistic brain may be wired to experience taste differently. Tune in next time as we focus on the sense of touch and answer questions such as, how can I dress head banging? Why is my kid toe-walking? Why does my kid always squeeze into tight spaces? 

Lia: This is Embracing Autism!

–
Resources:
Bendable spoons from Amazon (paid link)
PICA Prevalence in Autism
Association between pica and Autism in preschoolers with and without autism

Disclaimer: These notes include Paid Affiliate links. AutismWish would receive a small percentage of the purchase value if the above links are used.

Senses & Sensibilities
Show Notes for Embracing Autism Podcast — Ep. 201

Introduction:
Lia: This season on the Embracing Autism podcast we explore our ‘Senses and Sensibilities’ and their relationship to autism spectrum disorder. We will discuss how senses and behaviors are affected in autism and the scientific theories on potential reasons why.

Lia: Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice and support while spreading awareness and acceptance of autism spectrum disorder.

Lia: I’m Lia!

Matt: And I’m Matt!

Lia: And Each week, we’ll discuss our journey with autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources and sharing our personal stories.

Lia: This is —

Lia & Matt: Embracing Autism!

Discussion:
Lia: Hello everyone and welcome to Season Two of Embracing Autism the podcast.

Matt: We’re back with vengeance!

Lia: Or love.

Matt: Oh, boy.

Lia: So we realized after doing an entire season of this that we never really mentioned in our podcasts that this podcast is brought to you by Autismwish? Yeah, So I don’t think we did that.

Matt: So for anyone who’s wondering, this podcast is brought to you by AutismWish.

Lia: If any of you have never heard of AutismWish this is our little charity, I think we mentioned it briefly at the end of the last season.

Matt: I think I reference it at least once or twice.

Lia: We never really made it clear. And our podcast cover says it and everything. I don’t know why we didn’t think of that. I’m so sorry, guys, we are dropping the ball here. But anyway, totally off-topic this season.

Matt: Season two —

Lia: This season, we are talking about ‘Senses and Sensibilities’. That is the theme. So season one was ‘From Weathering the Storm to Embracing Autism’. And we feel like we brought you guys from the beginning of the journey when you just suspect that there are red flags through the diagnosis process, how to process the diagnosis, and then going towards.

Matt: All the different therapies and financial institutions and such.

Lia: So we’re hoping that we got you through, you know, the roughest part there at the beginning, where you don’t really know what’s going on. And we kind of gave you a little bit of a lifesaver for hopefully a little bit there. So now the theme for this season, we decided to focus on ‘Senses and Sensibilities’. And the reason that we call it that is because we’re going to be focusing on the five different senses due to the fact that a lot of autistic kids struggle with sensory input, and then sensibilities, we are using that as a way to describe pretty much everything else.

Matt: I’m actually excited for this season because the first season was very — it was kind of rough stuff as far as like day one trying to figure out okay, where do I go from here, I might have a diagnosis on my hands, some red flags. But at least with this season, I think that this is kind of changing the perspective a little bit. So now you’re looking at the world through the lens of your son or daughter and how they’re experiencing the world through the different senses, being under sensitive or over sensitive, just how that world is impacting them. So I’m actually really excited just to kind of get into some of the discussions and flesh out some of these ideas.

Lia: And the other thing that we want to kind of touch onto is a little bit of some life experience examples for each of these senses. So we are going to go into each sense, I think we’re going to try to aim for basically an episode per sense just to get you guys really well rounded with that. And we’re going to give you examples on how that area can be impacted or affected in children and adults with autism spectrum disorder. So we’ll give you some examples from our experience with our kids. I can even give you a few examples personally, because I do have some sensitivities that I can also share with you guys, and just some insight so that we can get a little bit better of a perspective on how our kiddos are feeling and also give some tips on ways to kind of mitigate some over sensitivities or under sensitivities.

Matt: I think you’re also going to go into a little bit about the psychology, neuroscience, whatever, yeah, there is science behind it. And that’s for each of the senses that you’re going to kind of dive into a little bit right?

Lia: My background is more in neuroscience and psychology areas. So I’m going to lightly touch on a little bit of the neuroscience on each of these senses during these episodes, but I’m not going to get too deep, because I know that it can get really complicated and it can get very confusing. So I’m just gonna, you know, lightly season it with a little bit of science to the point where it’s kind of interesting, and you know, like a fun fact. But I’m not going to overwhelm you guys, because we don’t need our own overloads.

Matt: Right. And I’m probably going to chime in a bit when we cover taste because that’s kind of my expertise. I’m kind of a food person. So, I love food. So your expertise and mine.

Lia: Let me guess, sensory overload?

Matt: I just love food so much.

Lia: Yeah, that’s not quite what that means. But, yeah, don’t worry. He’s our food expert. I don’t know how that’s relevant. But it If anyone needs a food expert, we have one.

Matt: You’ll thank me after that episode.

Lia: So we will go over all of those. And then we’re going to touch on a few other topics in the sensibilities category that are not quite, they’re not quite all sensibilities, but it’s kind of things that are more behavioral related. So we’ll touch on things like tantrums and meltdowns, and how to try to determine whether one is a tantrum versus a meltdown. We’ll talk a little bit about synesthesia, which is actually kind of, actually you could explain this, you’ve actually experienced synesthesia.

Matt: So yeah, I’m not sure this is the technical way to describe synesthesia, but it’s kind of the blending of the senses. And it’s kind of a weird situation. But we can definitely dive a little bit deeper into that when we cover that episode.

Lia: Yeah, you definitely have a funny story there. So you guys will hear about that in that episode. And we will also be touching a few other topics as well. So again, the theme is ‘Senses and Sensibilities’. And I’m sure some of you are wondering, where did that come from? That doesn’t sound like a familiar name at all, you probably will get a good hint of what type of books I like to read when I was young, or still like to read. And then for those of you who are like Matt, just staring at me blankly, you’re either a male, or you have no idea. No idea what these types of books are, I guarantee you half our audience knows what I’m talking about.

Matt: And we’ll just leave it at that. But I think another key area that we’ll also touch on is kind of the idea of transitions. So Lia mentioned before that we’re going to talk about meltdowns versus tantrums, which I think there is a big importance to actually reference the two and try and tell when you’re having one versus the other because it can make a world of difference. But then also the transitions as well, which I think is key. We use transitions, what a dozen times a day?

Lia: Yeah. And I mean, the two are closely linked, if the transitions aren’t done, well, it leads to meltdown, right?

Matt: Right, I just think of when I tried to do a transition and it doesn’t work. And you’re like, No, you didn’t do the transition right. There’s multiple versions of the transition.

Lia: There’s just one version. But then there’s the versions of the steps we missed. But there’s only one correct version.

Matt: Right, so there, there is a right way, I guess, in our family to do the transition. And then there’s also the wrong way to do the transition.

Lia: Which, again, everything that we tell you guys in this podcast, please just take that as our personal advice from our personal experience. Always, always, always consult your doctors, your therapists, especially occupational therapist, and your developmental pediatrician, because everything that we’re telling you guys are things that have worked for us and our kids. But we have these things specifically tailored to them through the occupational therapist, and all the other therapists. So if you feel like these things, either aren’t working for your kid, or you have some concerns, run it by your therapist or your doctor first, like don’t just take our word for it, just run it by them first, right?

Matt: Right, and if you do try them, and they don’t work, don’t shoot the messenger.

Lia: It wasn’t us, we put the disclaimer in.

Matt: We’re not professionals, we’re just trying to figure this out together.

Lia: So yeah, but I will say this stuff has worked really well for us, which is why we’re such huge advocates for them especially with occupational therapy. And a lot of the tips and resources that we’ve gotten has been through that. So again, we highly encourage that you guys work really closely to your children’s therapists and make sure that you are having conversations with them about any concerns you have or anything like that. Because these tips, you can get custom tailored by going to your child’s therapist.

Matt: Right. And I mean, definitely get their input and their recommendations and try it at home. And then I mean, I think you’ll be in a much better situation. And —

Lia: And hey, refer them to our podcast and be like, ‘Hey, I heard this on this podcast. What do you think? Are they legit? Are they just making this up?’

Matt: And that’s when they’re gonna be like, ‘these people are totally off their rocker.’

Lia: But I guarantee you that we have had all these things at least run by our occupational therapists and speech therapists. So we at least have it cleared on our end.

Matt: Right. And then I think another area that we wanted to also focus on was eloping a little bit. Yeah.

Lia: Yeah, so we will be talking about eloping, some people don’t know what eloping is — eloping is the word that is used for children who are autistic who run away without regard to danger or spatial awareness and can kind of get into harmful situations. Both of our children are elopers. So we thought this would be a really important topic, we will have lots of cool tips on eloping and some ways to get around it and some awesome resources. We’ll be doing that for all of these.

Matt: And I don’t know about you, I find that is one of the most terrifying realities just in general. Our daughter’s therapy was right along like a major highway so just the idea that at any one moment, she could choose to kind of run towards traffic. It’s kind of just a terrifying.

Lia: Yeah, honestly, Matt and I have this conversation all the time. We love our child’s Therapy/school but who in their right mind builds an Autism Center on a major highway, like literally within, what three yards of the highway?

Matt: They have had the sidewalk to walk into the building, and then they have the other sidewalk right next to the highway.

Lia: It boggles my mind knowing the fact that autistic kids have such a high rate of elopement that I cannot believe that they build this building right on the highway. Well, that’s, you know, that’s something else, elopement is a big deal. So for us in particular, because again, both of our kids are elopers. So it’s definitely something we want to be talking about this season with you guys.

Matt: But I think it helps that if you have that in your mind, then you’re aware of it constantly. So you are constantly thinking of fear, danger that could happen in all of a split second. So I think it does help being terrified in a sense. I don’t know that’s the right way to phrase it. But I mean, you know what you know, and that kind of helps I think.

Lia: There’s also a delicate balance between being — yeah, you don’t want to go into like the paranoia territory.

Matt: I guess that’s true.

Lia: So see, in case you guys can’t tell from us talking to each other, we kind of balance each other out. So when I get a little bit too much, he kind of reins me in. And when he gets a little bit too much, I kind of rein him in. And that works out for our kids benefit because we neutralize each other.

Matt: As long as we’re both on opposite sides of the spectrum, where you’re doing one thing, and I’m doing the other thing. If we ever get on the same page, and we’re working in the same direction

Lia: We’ll just be really aggressive at that thing! And that is how you ended up having an AutismWish charity and AutismWish podcast because we’re on the same thing and we go we go full speed ahead.

Matt: And then I think the last thing that we wanted to touch on this season is just kind of body awareness. And I think we touched a little bit on this when we’re talking about the therapies I think in last season. Yeah, I think it was physical therapy a little bit.

Lia: Yeah, we touched it lightly. But we want to get into a little more detail about body awareness and spatial awareness and all of that, and kind of a little bit of the science behind how it’s possible that that may happen and things to do to avoid it. Because we talked about it briefly, we basically just mentioned that it is a thing that happens with our kids and a lot of autistic kiddos, but we didn’t really go into details of how to work with it.

Matt: Right, I think it was mostly our experience that we it was just kind of like a cautionary tale about ‘Okay, be careful if you’re on the playground, for example, because they might not see the edge and fall right off’. So I mean, it was more of just a personal story that we had encountered. But I think it would be nice to kind of dive a little deeper into that and just kind of analyze, ‘okay, if this is an issue, is there anything else?’ And how would you start to be aware of the world around you a little bit. I mean, that’s kind of an ongoing endeavor that we’ve been kind of working on as well.

Lia: Yeah, and that’s kind of the general trend a little bit with some of these topics that we’ve chosen. There are topics that we may have already kind of touched lightly on in season one but we feel like we didn’t really get to do a deep dive because season one was all about giving you guys kind of like a sampling of everything. Because our focus was really just getting you through as much as possible in a short amount of time through that initial processing of ‘oh my gosh, my kid is autistic, what do I do’. And now we feel like by this point in time, you’ve had a little more time to digest. So a couple of weeks have gone by, you’re probably more curious and more capable of taking a deeper look into things. So now we want to go a little bit deeper into each of these. And we will be a little more explicit with our examples and get more detailed scenarios and things like that, so that we can cover things at a little bit deeper level than before.

Matt: I think we’re set up for our next episode of focus on sight, I believe, right?

Lia: Yeah. So our very first sense that we’re going to tackle is sight. So we’re going to go over all the senses first. And then after the senses, we’ll go into all those other topics that we put under that sensibilities category.

Matt: And I think from there, we should be all set.

Lia: Yea, so I just wanted to let you guys know, though, just some housekeeping because we seem to have forgotten to do this all season one. But if you guys could just take five seconds if you’re enjoying this podcast, we are so excited to have so many listeners so quickly. This podcast has just totally exploded. We only have season one — not even. At the time of this recording Season One has not been completely launched in about two months. Yeah, we’ve only been about two months in at the time of this recording. Now, by the time you’re listening to this, that’ll be a different story. But we’ve already broken into the top 100 podcasts in the United States for our category in parenting and we’ve done it a couple times. I think our highest ranking at this point was like 76 place or something like that. So this podcast is doing great, which means I know that you guys are getting good, good information here that’s helpful to you. And I just want to make sure that we continue to bring you helpful information and I want this podcast to be for you guys. I want it to be something thing that continues to be helpful. And I want it to be something that you guys feel comfortable accessing us with. We do a couple of events like we do some live Q&A is on our website. So if you guys aren’t familiar with that, you can follow us on facebook.com/autismwish. And we also have our website, autismwish.org. I host a couple of Live Q&A’s and during those Q&A’s we are happy to answer any of your questions.

Matt: I also want to mention that I was hoping that this podcast will kind of grow organically. So if there’s any particular area that any of you want us to touch on, give a little feedback on message us on Facebook, which Lia what is the URL again?

Lia: Facebook, it’s just Facebook @AutismWish. So you know how you can tag with that app, you just @AutismWish and it’ll come up. Or you can do it the old-fashioned way and go to facebook.com/autismwish.

Matt: And don’t forget to hit the ravishing like button

Lia: The Follow button.

Matt: Oh, I’m sorry

Lia: You can do like or follow — either one. And also, I just want to let you guys know, if you aren’t familiar with AutismWish and our mission, we mentioned it a little bit before, but we really focus on gifting autistic kids with sensory therapeutic items, we get a lot of our sponsorships through reviews and Facebook page likes. So if you guys could take five seconds to just give us a Facebook follow or page like and just leave us a review on Apple podcasts or Spotify, that goes a long way for us and getting sponsors so that we can continue to gift a lot of autistic little kids and older kids because we gift them up to age 17. So, as I was mentioning briefly before, so we do a lot of like Q&A’ s and other live events on our Facebook page. So if you follow us there, you’ll see those events when they’re coming. And we also do have a parenting group, which was linked in our show notes. That’s another thing that I’d like just to mention to you guys really quickly as the season begins, each of our episodes has show notes linked to the episodes. And in those show notes, we have a transcript of everything we talked about in these episodes. And we also have linkable content to the things that we’ve mentioned. So if you ever feel like you’re missing content, or you know, you can’t remember what we mentioned in this in the show, and you really want to remember some of those resources we mentioned, you can always go to our website. And again, autismwish.org. You click on podcast under there you go to the season that you’re interested in, and then the episode that you want. There’s a Show Notes button, and that’ll bring you to all that information right there.

Matt: Definitely a shorter route if you needed to get any useful information versus hitting the rewind 15 or rewind 10 seconds — 15 times.

Lia: And then take out your pencil, start writing it down.

Matt: Definitely, definitely go to the show notes so you don’t drive yourself crazy having to listen to the same phrase from us over and over again.

Lia: Yeah, although, again, if you want to loop this podcast, we’re totally okay with that. I don’t mind. I don’t mind the extra listens.

Matt: But this is for the people, for the people for us.

Lia: Alright. And so that’s pretty much all the housekeeping I have for you guys. I just want to let you guys know that again. We do do those live Q&As. So if you guys are interested, get up on our Facebook, join the live Q&A, always ask us any questions that you like, shoot us a message anytime let us know what topics you would like for us to discuss in future episodes. We’ll be happy to try to accommodate those into our future seasons. We are always planning future seasons out. So it’s never too late to give us some feedback. And I know, we didn’t give you too much autism specific information in this episode. This was really just an episode to kind of prep up the season so you guys know what to expect. I promise you the future episodes will be jam packed full of information just like season one was.

Matt: So stay tuned for ‘Senses and Sensibilities’. Yes, I got it.

Lia: Do you get the reference now?

Matt: Yes.

Lia: Do you?

Matt: Yes.

Lia: Awesome! look, there’s a win.

Lia: Alright, everybody, thank you so much, and I hope you guys tune into our next episode of Embracing Autism.

Outro:
Lia: To review, in this episode we discussed the theme of season two as Senses and Sensibilities. We give an introduction to topics that we will cover the season to include the five senses, behaviors and possible connections to autism within neuroscience. Tune in next time as we answer questions such as How is vision affected in autism? What are some common vision comorbidities? And what is visual stimming? This has been Embracing Autism.

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Embracing Autism
Show Notes for Embracing Autism Podcast — Ep. 112

Introduction
Lia: In this episode, we conclude season one with final thoughts on how to go from weathering the storm to embracing autism and how to transform negative perceptions of autism to one of positivity and acceptance.

Lia: Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice and support while spreading awareness and acceptance of Autism Spectrum Disorder. I’m Lia —

Matt: And I’m Matt!

Lia: and each week, we’ll discuss our journey with autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources and sharing our personal stories.

Lia: This is —

Lia & Matt: Embracing Autism!

Discussion
Lia: Hi everyone! Thanks for tuning in. This is our last episode of the season, I can’t believe we’ve already made it through what 13 episodes or so including the pilot? So if you guys have stuck around this long, thank you, and congratulations.

Matt: And if you’re tuning in for the first time on this episode, congratulations on skipping ahead!

Lia: Ahead of the curve, that’s ambition. So this season, we really took a deep dive into a lot of different topics. I mean, we went all the way from the very beginning of suspicions of autism all the way to what to do afterward with all the therapies. And I know there’s a lot of information there. So go ahead and take the time if you need to kind of digest all of that. But overall, what we want to kind of focus on here towards the end is just making sure that we were able to successfully give you guys the tools and understanding to get to the point where you feel comfortable with embracing autism and not so intimidated by the idea that your child may be autistic.

Matt: I agree it’s always a one-day-at-a-time and not to become overwhelmed with trying to incorporate everything into ‘I have to do it right now on this day’. So we kind of tried to lay it out as best we could as far as steps to take but obviously they’re steps and not a jump. So make sure you take each step as needed.

Lia: Yeah, I really think self-care is important. I know personally when I got our first child’s diagnosis, I got really kind of obsessed with knowing everything there is to know about autism. And because of that I felt kind of the pressure to just learn as many things, get in as many parent support groups as possible, read as many books as possible, find every resource I can for my child, put her in all the therapies, it was really going full speed ahead. And because I did that it made it harder for me to kind of step back and process everything that was going on, effectively process what the best path forward would be. I didn’t really take the time to sit down and think through what we wanted to do, what our goals were and whether or not our child was actually benefiting from our decisions, or if it may have been too overwhelming. So one of the things that I would highly encourage and I kind of wish that people would have told me in advance is just to make sure that once you are in the world of autism because your child has this diagnosis just make sure that you understand that you don’t have to learn everything there is to know about autism all at once. All the information is still going to be out there so just take the time that you need to process the information to truly learn the information and make sure that you give yourself a break for self-care. On a Facebook group that was for some parents support resources, I actually was curious one day and I put up a poll — this was a self care poll — and so I asked all the parents there — there were several thousand members in this group — I asked them once your child received the diagnosis did any of you experience any sort of weight changes for example? And I put the options of like yes I gained weight yes I lost weight no I stayed the same. I mean overwhelmingly I’d say at least 90% of people total fell into the yes I either gained a substantial amount of weight or yes I lost a substantial amount of weight since diagnosis. And everyone who commented said that it was directly related to the stress of that process. So I found that to be kind of an eye-opening moment because I personally fell into that category as well. The last like year and a half since both of our kids got diagnosed back to back I ended up gaining some weight and I realized that the reason was that I was so focused on getting all the help and support for my child that I could that I ended up putting myself dead last on the list and I just didn’t even bother taking care of myself anymore. So this is something that I see is a very common problem and I’m sure that it must apply to guys How do you feel about that Matt?

Matt: I would agree I mean, in some way I’d like to think it’s — I like to think it’s all muscle but I’m a shape let’s just say a shape, not the right shape. No I agree. I definitely had picked up 10-15 extra pounds, about the weight of our child. Actually, I mean not far off. No, I completely agree because when you are so distracted with something else that seems imperative, that is your main focus. It’s easy to think, ‘okay, dinner, I’ll just grab something quick’. And of course, the thing that you’re always grabbing that is quick is not always the most healthy. It’s great that fast food is quick. But fast food typically doesn’t stand out as being a healthy alternative to kind of just a home-cooked meal or something that you actually put time and effort into actually making. Since we are becoming aware of that, we kind of tried to refocus our efforts to try and put more of a focus on ‘Okay, we need to reflect and kind of improve upon ourselves and make sure that we don’t let this go out of hand’, which means that we’re starting to look at eating more at home and tried to take into consideration our own health instead of just the well being of our kids.

Lia: Yeah, so for the approximate 90% of you that filled out this survey and said this, I can completely relate and I totally understand. It’s like with all the amount of work and effort and the day seeming to just go by in a blur because your time is always tied to something whether it’s a telehealth appointment, an in-person therapy session, a commute one hour here or there back and forth to these appointments that aren’t necessarily close to your home over time that adds up. And then you just find out that by the end of the day, you simply don’t have time to cook and put together a healthy meal at home, you have five seconds to grab something out of the freezer and pop it in your mouth and it’s that’s it.

Matt: And I think on top of that, as you mentioned kind of the day-to-day struggle. It’s hard to project into ‘Okay, well this is our routine, this is our plan moving forward’. So for us, I remember we’d have talks about like, ‘Okay, how can we make this work? How can we get all these therapies to work? How can we get everything we need done?’ And so I mean, while we typically kind of take it day by day, it’s also hard to project a set pattern of ‘Okay, this is our set schedule, we’re good to go’. It seems to kind of always change as things come up — job, life, therapies, everything seems to be something that you’re constantly trying to juggle.

Lia: And I feel something that kind of goes along with that as well is the lack of motivation. And I feel like what it is, for me personally is when you have all of this stuff going on and it just seems like unending that you constantly have more appointments or you have like more bad news. For example, if you find out that your kid ends up having some sort of muscular issue, and now you’re like ‘oh no, they’re going to have to get special shoes’. It’s just every time one of those things add to that pile, you kind of start losing the motivation to even want to bother with self-care, you’re not really motivated to exercise, you’re not really motivated to try to cook a home-cooked meal, and things like that. So I can absolutely relate to that. We’re trying to make some lifestyle changes and be more purposeful with what we do. Since there is very little free time available to us, it’s more about making the time that we do have intentional so that we are doing something productive with it even if we don’t necessarily feel like it. I know for me personally, that has been the hardest part of time management.

Matt: I mean, we always talk about having a budget for your money this kind of works on that side as well. Make sure you have a budget for your time so you’re not doing unnecessary things right — I’m not staying on, I don’t know watching TV for six hours or something that doesn’t benefit me in any way. We have a set schedule and things that we have to accomplish and then just trying to manage the time that we have to get everything we need done.

Lia: Yeah, that’s actually one of the reasons I personally got into listening to podcasts because through a podcast you can get productive information while you’re doing something else so you can multitask you can listen to this while you’re cooking you can listen to this while you’re in bed getting ready, it’s a lot easier way to consume information so I personally have gotten in the habit that when I go to bed at night, that’s when I pop in my podcasts or my audio books or whatever it is that I want and that is my self-care moment. So I kind of wind down for the day and I’m like ‘okay, I know it takes me an hour or two to really get comfortable and go to sleep so this is where I pop in my headsets’ and then I just relax. So even if you find a way to do it whether that’s this podcast or a good book or something just make sure you take the time to recuperate.

Matt: And of course, we’re not saying that taking care of our kids is a chore by any means. I mean we love them both, but we’re saying that it is important to also take care of yourself because you’re important too. Lia had given the analogy that sometimes the captain of the ship needs some rest as well otherwise you’re going to crash into an iceberg… pretty sure that’s how the Titanic Captain crashed right? So just make sure that you take some time for yourself and just recover mentally and physically as well. And then you’re better off to be a parent and you’re better off to tackle all the upcoming challenges that you might face from the day-to-day.

Lia: And make sure you are well-rested. That’s also been personally really hard for me because I have insomnia and that’s an ongoing issue. But being well-rested gives you more patience. So self-care is really important in that area. If you’re the type of person that if your child is having a meltdown and you just can’t handle it and you’d go off on your kid or if you get really upset, that’s something that you may not even know the reason why. Step back and think about whether or not you’re getting enough rest, if you’re getting enough sleep throughout the day, because that could easily alter your sensitivity to that sort of thing.

Matt: Yeah, have a nap!

Lia: If you can. And also, don’t forget, we do make this podcast an informational thing about autism, right? So we’re letting you know all this information, which makes me think that you are the type of parent who is looking to learn more about it and you’re really getting involved in this aspect of your child and you’re trying to do the best you can to support and accept your child. But don’t make it all about autism either. That’s the trap that I almost fell into towards that beginning where I was just getting really into learning everything I can. But it’s important to note that your child is not autism, you know, like your child is more than autism; they’re more than an autism diagnosis. They are not just autistic, they’re still a four-year-old kid who likes to play with cars, or maybe they’re a 16-year-old kid who’s having his first crush at school like they’re still going to go through these normal phases for the most part. If you have an intellectually delayed child, they still have a lot of things that make them uniquely them despite the autism, and we shouldn’t focus all our energies on that and lose sight of the child, our child who’s really there.

Matt: And I would think also taking an interest in something that they particularly enjoy. So for one of our daughters, she’s obsessed with rubber ducks, and must have, I think she has 21 or something. But even so she’ll love lining them up on the edge of a window, and she says that they’re on a branch. And so my wife and I, we make silly songs, we’re basically identifying the different ducks in that order and she absolutely loves it. And she will request that we sing basically her duck song for the order that she’s created them and we’ll sing with silly voices and things and she absolutely loves it. So I mean, it doesn’t take a lot of effort to enjoy the small things that they find interesting. I think that that makes all the difference in the world because at the end of the day, when they get a little bit older, and they think of ‘Oh, mom or dad was super stressed out because I was autistic’. I mean, we don’t want that to be the case we want them to remember ‘Oh, I remember when mom and dad made that stupid song about my ducks being in a certain order’. And they’ll think of it, I think, fondly where they’ll be like, ‘wow, okay, I was really loved that my parents came up with a silly song because I love ducks.’

Lia: And if you have a child, for example, who’s obsessed with trains, I know where we’re at, there’s a local railway museum that has trains there. If your kid is obsessed with something like that, or that’s their special interest, I should say, then take them on a date like you would with any typical child. Like you know how a lot of parents have the mommy and me dates or the daddy and me dates and vice versa. Just take your child out like you would even if they didn’t have autism spectrum disorder and go do their special interest item thing. If they are fascinated by I don’t know, maybe flowers, bring them to like a local garden. Just incorporate their special interest into that date night that you’re doing with them. And don’t forget that they need that relationship and that bond with you too. They’re not just a ‘disabled child’ that can’t be talked to and just needs therapies and I just need to fix them — that’s not the case. They are a child who needs love and support and a relationship and a bond with their parent just like any other neurotypical child would.

Matt: And the other thing is, kids are basically mirrors of ourselves. Mostly, we’ve noticed this when our daughter is going to her little — we call it pre- preschool. It’s like an early achievements class to help her with social interactions. Yes, I’m not sure if that’s the best way to describe it.

Lia: Yeah, that’s preschool to prepare you for preschool. Right? Right.

Matt: So we’ve noticed that when she’s in her school, she’s happy as can be. And we notice that she’s actually saying things that we say to her. In one instance, one of the little boys was crying and our daughter actually comforted him saying, ‘It’s okay, I got you.’ And that’s the exact same thing that I do when our daughter’s upset; I kind of pick her up and I kind of say it’s okay, I gotcha, you’re okay, you’re okay. So something as simple as how I comfort her is something that she’s picking up to comfort other children in her class. And I think that if you are able to find the enjoyment that your child is seeking through whatever their special interest is, or whatever they enjoy, they’re going to reflect a more positive attitude in all walks of life that they do. So you might see a little glimmer of when they’re interacting with someone else, a sibling, a relative that they say something that you have said to them in comfort, or it’s reassuring because it shows that they are incorporating the best elements that we have to pass forward. So I would strongly encourage that you pass on positive elements as opposed to upset ones where they’re repeating something that you might have said out of frustration.

Lia: Yes, if your child is anything like ours, they have echolalia and they practically record what you say. So make sure what you say around them, you’re comfortable with hearing it on repeat. Okay, just a little tip there. I know I’ve had a few close calls. The other thing that comes along with it is if you are placing all this time and attention and effort on your child, one, like we said, make sure it’s not all autism-related; make sure you’re doing some just typical child things with them. And number two, if you are a parent of multiple children, I really also stress that you make sure that you spend enough time and connect with your other children as well, whether they’re neurotypical or not, but particularly neurotypical kids who tend to get left out when all the attention is put on the autistic child. I think that’s something that we initially struggled with prior to getting our second child’s diagnosis.

Matt: Right, as soon as she was diagnosed with autism we were like, ‘okay, we got two kids in the same camp’. So it’s not as big of a fear of ours. But I absolutely agree. I think that if you do have another child that is not autistic, make sure that you also dedicate the time and effort to doing the same effort and enjoy the same activities with them that they enjoy. Otherwise, when they get a little bit older yeah, they’ll absolutely think back to ‘mom and dad never had any time for me, because they were so busy with everything autism related’. So I think just having a nice balance in your family structure will be beneficial down the road as well.

Lia: Yeah, I can’t tell you how many times I’ve heard people who have had some sort of sibling with a disability and they’ve said things like, ‘well, my parent was so involved with my sibling with a disability that they actually didn’t even remember that it was my birthday’, or ‘they didn’t think it was important for them to come up to my father-daughter dance at school’ and things like that, that leave a long-lasting impact and can also build resentment between the siblings. So that’s another thing to just remember and keep in the back of your mind, if you do have multiple children, just to make sure that you spend that quality time with each of them. And try to remember that although your one child has a lot of your time and focus, you need to remember the other child as well. And I know that it’s a difficult balance, because not only do you want to make sure that all your children are receiving essentially equal time and attention and affection, but you also need to balance that the time that you’re giving to your autistic child is not just medically focused time, you want to make sure that that time is also productive bonding time. So it’s complex, it does get difficult, but it’s something that I think needs to be absolutely on the top of your priority list.

Matt: I think so, at least have it in the back of your mind or have it on your radar. So keeping track of when you might be spending too much time with one child and not — I don’t want to say neglecting, but for lack of a better word, slightly neglecting one at the expense of the other. As long as I think you have it in the back of your mind, and you are aware of it and it’s not something that you just put on the backburner. I think that you are in better shape. And hopefully, we’ll be able to kind of allocate your time a little bit better between multiple kids.

Lia: This has been hopefully a great season for you guys. I’m hoping you got a lot of stuff out of this. And we’re hoping to continue bringing you more information, more resources, more guidance and tips in future seasons. One of the little pieces of advice or resources that I want to leave for you here in this episode before we close out the season is if you have a female child who is autistic. Both of our children are autistic and through a lot of research and googling, I found that autism actually presents quite differently in women and females than it does in males. Women actually get very underdiagnosed in autism and the autism testing that’s currently used. The current testing model is actually formulated to test men and boys rather than women or girls and that is why the ratio of how many diagnosed people are boys versus girls tends to be very exaggerated. So it seems that there are a lot more boys with autism than girls who are autistic when they’re not actually sure that is actually the case. And so if you do have a daughter with autism, or if you happen to be an autistic female, there are two specific people I would recommend that you look into to learn more about that. Both of these resources can be found on YouTube, just go on YouTube and type in the search bar lookup specifically somebody called Sarah Hendrickx and that’s Sarah with an H and then HendrickX is H-E-N-D-R-I-C-K-X . It’s kind of a strange last name, but look her up. She is somebody who is in the autistic research field and she does a lot of presentations. She’s published some books and she works a lot with that. And interestingly enough, she actually ended up getting an autism diagnosis herself in late adulthood and she didn’t realize she was autistic until later on because of the testing discrepancies for men and women. So that’s an interesting resource. And then there’s a second one that’s also very good and this one is Professor Tony Attwood. It’s Tony with a -Y. Go ahead and look them up on YouTube. And he’s got a lot of talks, speeches. And he also has books as well that describe in detail the differences between autism within a boy and a girl. And he focuses specifically on how autism presents itself in girls and women versus men, and it’s very implicit, it’s very difficult sometimes to notice the differences. So because of that a lot of women don’t get diagnosed. So that was really interesting. And if you are interested in that information, I highly recommend that you watch their videos.

Matt: I’m not sure if it was Attwood, but I think he was saying that they would — the females — later in life when they ultimately become diagnosed with autism; it’s usually that they would be diagnosed with lots of other things. And then at the end of the day, they realize, ‘Oh, this all falls into the same category as autism’, that it was just they thought it was an isolated diagnosis for other things. But it turns out that it was autism all along.

Lia: Yes and the reason that I recommend looking into this as well is because studies have shown that autism has a strong genetic portion to it. So they don’t exactly know what the cause for autism is yet, there really is not enough research out there. Anybody who tells you they know what causes autism is not telling you the truth, because the truth is, there’s not enough evidence out there and all we really know is that it’s mostly genetically linked. Although there are some environmental factors, it is mostly genetic. And so he takes a look at some of that background and what I’ve noticed is that a lot of people who listened to his talks and that of Sara Hendrickx’s as well end up kind of self-reflecting and finding out that, ‘hey, maybe I’m autistic as well’, and didn’t even realize it because the symptoms and signs are so different for men versus females. So if you’re curious, and you think that maybe you’ve had some autistic traits, or something like that, and you were never really sure where to go with it from there, those are also some resources to look at and see if you feel like you connect with any of what they’re saying.

Matt: So to pivot a little bit, one of the ways that we have ultimately embraced Autism is we’ve tried to set up a small charity that’s called Autismwish. Its goal is to pair autistic children with sponsors and trying to purchase therapy-related or sensory-related items of an Amazon wishlist. We’re still in the infancy so there’s lots of opportunities to kind of grow and branch out from there. And then that ultimately spurred us on wanting to contribute and provide resources to the general public because we remember when we first got the diagnosis, we really didn’t know what to do, where to go. And that’s what kind of had us start this podcast. So we could try and reach out and help each individual who was in the same position that we were just kind of struggling, not really sure, ‘Okay, where do I go from here’. And that has kind of been in a way therapeutic self-care for us as well.

Lia: I think some people have different outlets and different ways of providing self-care. And I think for us that way has really been also through this podcast and through AutismWish. Because we are the type of people that feel better if we help other people and are knowing that we’re helping other people feel better. So it’s kind of like it’s partially selfish in the sense that this is our self-care. But at the same time, we want to make a real impact and we know what it’s like to be in your shoes. And we had hoped and wished that there was a resource for us at the beginning and there really was not so we wanted to make sure that we could provide that resource to everyone else. And for us, that was kind of like a way of self-care, but also of care for the community.

Matt: And you know, I just realized that now I was like, well, we take our kids to all these therapies that I was like in this podcast, and I guess AutismWish as well, is kind of therapy of sorts for us and I was like okay, that’s kind of an interesting roundabout way to view the therapy world.

Lia: Yeah look, we are our own therapists. There we go. Man, I better pay myself well. That’s scary. Oh goodness. So yeah, we’re just going to wrap up here now with a little bit of housekeeping. Unfortunately, this is the end of season one, but fortunately, we will have a season two around the corner. Season two we are planning on doing more sensory-focused podcast episodes and will go into a little more detail so stay tuned for that. In the meantime, please be sure to like us on Facebook and Instagram. We have the links and information in the podcast description or podcast notes, we will have our information as well for our website and everything else there. So please take a look and give us a like or a follow. And if you’re able to please, please, please leave us a five-star review. If you enjoyed our podcasts on the apple podcasts that would help us a lot with being able to support more autistic children through our charity project.

Matt: And if you have any recommendations on anything that you would like us to speak on in the future as well please feel free to leave us a comment or through Facebook, you’d be able to leave a comment or get in touch with me as well.

Lia: And I will keep updating the notes to make sure that there’s contact information there as well so that you guys have everything up to date. And you can reach out to us. Let us know what you want to hear on future episodes and how we can best help you guys out.

Lia: That’s it for Season One.

Matt: The finale!

Lia: Thanks for listening.

Matt: Thanks guys.

Outro
Lia: Thanks for listening to embracing autism. If you liked what you heard, please leave us a review on Apple podcasts and help us spread the word. You can also like our page on facebook.com slash autism wish. We hope you join us in season two where we will further explore the sensory system and its connection to autism. This has been Embracing Autism!

–
References

Social Media Contacts
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Anticipating Controversy
Show Notes for Embracing Autism Podcast — Ep. 111

Introduction
Lia: In this episode, we will tackle contentious topics in the autistic community and talk about why topics such as the puzzle piece symbol, person-first language, among others are controversial and hotly debated.

Lia: Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice and support while spreading awareness and acceptance of Autism Spectrum Disorder.

Lia: I’m Lia!

Matt: And I’m Matt!

Lia: And each week we will discuss our journey with autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources and sharing our personal stories.

Lia: This is —

Lia & Matt: Embracing Autism!

Discussion
Lia: So disclaimer, I want to start off this episode by letting you guys know that a lot of the topics we’re going to discuss here are hotly debated, they are things that tend to raise the temperature and people really don’t like talking about these, this is kind of a back and forth between the autistic community and the neurotypical parenting community. So there may be topics that we touch in this episode that might push your buttons the wrong way. And I just want to let you know, it’s not our intention to offend anyone or try to make anyone feel lesser or anything like that. We really are just trying to let you guys know what it is that the autistic community has to say about particular topics and just educate the public so that everyone is aware, we are just trying to do this as conscientiously as possible without really meaning to offend anyone. So if we do, my deepest apologies, that is definitely not our intent.

Matt: So in other words, we’re about to send you out into the autism battlefield. And we want to arm you or be aware of where these boundaries and lines are already drawn.

Lia: We don’t want you to step on a landmine. So what we’re doing is giving you the map, and — what’s that saying about don’t shoot the messenger?

Matt: So Best of luck in navigating the minefield.

Lia: So without further ado, I give you all the most contentious, hotly debated, and controversial topics within the autistic community. So I’m just gonna rip the band-aid off right off the bat here and get you guys to all hate me all at once. Because the first topic here is the puzzle piece symbol. I know a lot of autism parents, quote-unquote, are pretty into the puzzle piece symbol, it’s a way to symbolize our affection for our children. A lot of parents out there I’ve seen have autism puzzle piece symbol tattoos and things that I know are well-intentioned. These are symbols that are typically to show your connection to your child and how you’d do anything for your child. And the intent behind them is usually really truly beautiful. There is however very negative connotation to the puzzle piece symbol, which most parents are actually not aware of. So the puzzle piece symbol in the autistic community is actually looked down upon, it’s a contentious topic because autistics tend to not like it because of the Autism Speaks Association. Autism Speaks if you have or have not heard of them, they’re also a big organization dedicated to autism, they do a lot of good stuff too, like offer supports and systems and stuff like that. For parents and autistic individuals, however, there is a lot of controversy as to how they were founded and their original videos, and the way that they used to describe autism. So one of the issues with the puzzle piece symbol itself is the origins of the puzzle piece symbol. So when the puzzle piece symbol was initially chosen by Autism Speaks, which again, that organization’s actually considered a hate group by autistic adults believe it or not, but when the puzzle piece symbol was chosen, the original puzzle piece symbol actually had a crying child on the front of the piece. And the whole point of it was really this dark negative connotation of how autistic children are kind of like missing a piece and that the goal with autism research was to quote “solve the puzzle”. And in that sense, what they were going for was trying to find a way to make autistic individuals “normal”. I’m not using normal in my definition of the word I’m using it in the way that they would have used that so in their words they were trying to create, “normal children through research”. And so as you can imagine, this is extremely offensive to many autistic adults out there who definitely don’t feel like being othered or seen as less than simply because of an autism diagnosis. And of course, the negative connotation with the crying child symbolizing the pain and agony that the child is in because they’re autistic. There’s just a lot of negativity that ended up giving autism a stigma in the earlier days of autism that has carried on with it to this day, and a lot of that has to do with the Autism Speaks organization and the puzzle piece symbol itself.

Matt: Now there is another side on the autistic adults, that there are some that actually embrace the puzzle piece because they see it as being unique that they are a unique puzzle piece as a whole. But most of the autistic adults tend to disagree with this and see it as a negative.

Lia: I will also add, there are some autistic adults who view the puzzle piece, like he said, in a more positive light. But the reason that they do it is also because they are all about taking back the puzzle piece and taking back that symbolism to kind of redefine it and give it a new vision. That’s kind of in the works right now; the autism community goes back and forth with this. But I would say overall, the general consensus is in fact that the puzzle piece is offensive. If you go and talk to any autistic adults out there in the community, which again, I urge you to do, and just have a conversation with them, whether online or in-person, you’ll probably get a better understanding of how they feel about this and why but it definitely is one of these triggers that will really hurt someone pretty quickly. So I would be conscious of that. And also, if you are using the puzzle piece to represent your child, I would just be aware of how it might be interpreted by other autistic adults before you make some sort of potential permanent decision.

Matt: And there are also other symbols that are used for the autism community. I believe one of the main ones that we’ve seen is the infinity sign up if I’m remembering that correctly.

Lia: The infinity symbol, generally speaking, represents the entire neurodiversity community, autistics will accept both the general neurodiversity symbol, which is an infinity rainbow-colored symbol, or they have also more recently come up with their own version of the infinity symbol that represents autism specifically, and that is the golden infinity symbol. And the reason they picked the golden infinity symbol is because the abbreviation for gold in the periodic table of elements is AU. And of course, au is the beginning of the word autistic. So that is what is considered to be the more acceptable symbol for autism. That is the one that I personally choose to use. Now, the rest is really up to you. But I just let you know that you may or may not run into some conflict or controversy, if you do choose to use the puzzle piece symbol, just be aware of that.

Matt: And it’s always better to know what’s out there. So you’re not caught off guard that if someone does come to you, and they are upset with the puzzle piece not to be completely caught off guard that there is another side to the puzzle piece itself. So just be aware of other meanings that it might have, it might not only be the meaning that you are wanting it to have.

Lia: Sometimes it’s hard for us to take into consideration another person’s perception of the symbol that means so much to us and it’s hard to see something that we view so positively means something negative to someone else. But it’s important to kind of step back from our own emotions sometimes and just try to open up to what the other person is trying to say in this case, the autistic community that is hurt by the symbol and just try to understand the reason why behind that before jumping to any conclusions. So that’s really all I’m saying is just be open to the idea of discussing that and understanding that before going ahead with it.

Lia: So as I mentioned before, the puzzle piece symbol was associated with Autism Speaks and I briefly mentioned that the autistic community sees Autism Speaks as a hate group. There’s a lot of reasons why I again, would urge you guys to do some research on this because I simply can’t fit it all on this podcast episode. But to put very briefly some of the things that Autism Speaks has done in addition to the puzzle piece symbol with a crying child is they’ve run some commercials and some ads and some documentaries that are really demeaning and degrading to autistic individuals. One of the commercials that we saw — I showed it to you Matt.

Matt: Right, it was a little dark, it kind of almost described autism as being essentially like a demon that you’re not able to see from the normal eye. But it basically infiltrates your family and will basically deteriorate the fabric of your family. And it just left a very like negative almost demonic image of autism. It was very weird indeed to watch the video.

Lia: It completely felt evil, like it was like a sinister take on autism and it was like — autism, it sneaks up on your child and it ruins your marriages and it makes you depressed and it puts you into financial ruin, autism.

Matt: And it was basically saying that there’s nothing research can do. There’s nothing anyone can do to can help. It’s basically like setting up for a like horror movie of doom —

Lia: It was crazy like that those ads if you just go on YouTube and type in Autism Speaks controversial ads, and you will see how crazy some of these are. I mean, they really make it seem like a child who’s autistic is literally a demon-possessed kid who’s going to come and destroy your life.

Matt: I will add in at the end of the video they do try to, in my opinion, salvage where they try and spin it back to trying to make it a little less… yeah; But I feel like with the negative image that they started —

Lia: It was a train wreck.

Lia: So that was one of them. Another very controversial well-known ad was one of the executives that’s part of the Autism Speaks. I don’t know if it was a board, but they are part of the committee in Autism Speaks. They were in a mini-documentary as well. And in this documentary, they were talking about their child who was autistic. And this child was in the room with this parent while she was talking about her child and her experience with autism. And the thing that really shocked everyone was that in this interview, she talks about how when she was raising her child, that she went through such stress and turmoil that she actually contemplated taking her child putting her in her car and driving off of a bridge killing herself and her child simply because her child was autistic. And the thing that I thought was most shocking of that video was that when she said that the only thing that stopped her from doing it was when she thought about her other neurotypical child and, and what would happen to her, I was personally really offended by that video because she essentially was saying, it’s totally cool for me to kill my autistic child, but the only thing keeping me alive was my neurotypical child.

Matt: Right, and I think that just speaks a little bit to the video as well that I mean, if you have a video basically saying how horrible Autism is. And then basically, you have an executive member of the community basically saying that she contemplated suicide by killing her daughter as well and the only reason she didn’t do it was because she had a neurotypical daughter at home that she would be abandoning. It really doesn’t shed a positive light on that image, to say the least.

Lia: Needless to say Autism Speaks is not looked highly upon in the autistic community because of these things among other things. They have other programs that they do like they do the light it up blue and the teal pumpkin program, which is supposed to be about spreading awareness of autism. Generally speaking, there’s nothing wrong with those things themselves. There’s nothing wrong or controversial about having the teal, pumpkin or lighting it up blue. But the reason the autistic community is against it is because those programs were made by Autism Speaks, which they consider a hate group. So just by default, they don’t like that, because it’s kind of like a subsidiary of Autism Speaks.

Matt: Right. And I don’t think that they serve the purpose that they’re intended for as well. Because if I saw a child trick or treating with a teal pumpkin, I wouldn’t necessarily think oh, that child is autistic. I mean, unless you actually do the research and know that that’s a situation you would have no idea you just think that it’s a off-colored pumpkin that someone’s trick or treating with.
Lia: Right, you’re better off either talking directly with a parent or giving them some sort of note or something like that, to let them know, hey, my kids nonverbal, they may not actually be able to request candy or say Trick or Treat. So having that conversation is probably more effective than the teal pumpkin anyway, because most people don’t even know what the teal pumpkin represents.
Lia: So moving on to the next controversial topic, this is another one, you guys will probably hate me.
Matt: They are going to hate both of us.

Lia: I know we’re gonna be so hated after this episode. So this is the whole idea of autism mom and autism dad. And I will say I have been guilty of this one before I’ve done it multiple times, referring to yourself as an autism mom, or an autism dad and going around and kind of using autism as an accessory or a trophy or something like that, to not really like show off, but kind of what’s the word I’m looking for —

Matt: I would say it kind of lets you tell others that you have a struggle that might be greater than theirs for example.

Lia: It’s kind of in the realm of attention-seeking, although it’s not necessarily done consciously. It’s kind of like a subconscious thing that we might do accidentally, but particularly what the autistic community doesn’t like is the language of the phrasing of autism mom and autism dad. And the reason they don’t like that is because, using the phrase autism mom kind of implies that the mom has autism or is autistic whereas saying I’m a mom of an autistic child then puts that attention on the child rather than the mom. Once we use the language of autism mom or autism dad, we’re taking the focus of autism away from our child and putting it onto ourselves. So it kind of shifts the balance of power, the balance of attention more to the parent than the child and that tends to rub the autistic community the wrong way because it’s kind of like taking the focus away from what’s really important and making it more about us.

Matt: Right I can see two different ideas of thought on this one, the one being that almost trying to seek out as far as a group of other parents who have autistic children as well to kind of say like, okay, like we understand your struggles like we know what a meltdown actually is. We know what you go through on a typical day-to-day, so there’s that one vision of kind of the autism mom or dad, but then there’s also the element of others using it as a almost, I don’t wanna say riding the coattails of your child a little bit to kind of get brownie points a little bit, too.

Lia: I’m hoping that none of my listeners fall under that category. I’m sure you all are the best of the best and you guys would never do that. So I am totally totally, totally psyched for my listeners.

Matt: But I mean, it has the two different views. And I guess it depends on how you yourself are trying to use that terminology.

Lia: Right. And I mean, we know that this happens with regular parenting, it doesn’t have to be autism parenting, like, you know, there’s always that one mom that is kind of showing off about her kid being the great wrestling champion. And you know that that mom doesn’t have the best relationship with that kid, but she likes to go around talking about how great of a champion he is at wrestling, it’s kind of the same principle. So it doesn’t obviously apply to all moms. Most moms are great. But for the few that the autistic community is able to see on Facebook, where they are kind of doing that riding on the coattails of autism thing, they find it really offensive. And I can understand why I would not want people riding on the coattails of my disability to prop themselves up either.

Matt: That’s true. My parents never took advantage of me.

Lia: Yeah, did we mention we’re both neurodiverse? Yeah. So we know a little bit about that. I know, I personally would be pretty offended if my parents went around doing that about my stuff.

Matt: I agree.

Lia: Yeah. So I get that one. And I know it’s not the best thing to hear. But you know, I figured I’d put it out there.

Matt: I think the big thing is mostly just to be aware of it, though. Yes. Like you mentioned, I’m probably guilty of it too. If I’m talking to my friends or something, I might let something slip. But I think just being aware of it, I think makes a big difference. Because then you can kind of catch yourself be like Oh, what is the real purpose of me actually disclosing this.

Lia: And along those lines now that we’re talking about autism mom, autism dad and the contentious part of that being the riding on the coattails and such something that’s kind of similar to that and is also hotly debated is the idea of what’s called inspiration porn, and no, it’s not actually related to porn. So settle down —

Matt: Rated R or X or whatever.

Lia: So what inspiration porn is, is it’s basically what the autistic community uses to refer to when magazines or newspapers or articles put up headlines, this amazing feat that was done by this autistic person. And the reason that they find that offensive is because the feat is not highlighted as amazing in itself. It’s the fact that an autistic person did it that’s considered amazing, which they find kind of degrading because the focus is put on the person’s disability rather than the person’s accomplishment. And one of the examples that was given to me early on was there was this kid who was put on the front cover of a magazine because he was autistic and he was able to make like a life size replica of it wasn’t a titanic, but it was like a steamboat made out of Legos.

Matt: There was one that was the Titanic, not life-size.

Lia: Not a life-size, like a miniature but you know, it was pretty big as it’s the size of the shed or something like that. And this was really, really not well received at all within the autistic community. Because what happened is the newspaper or magazine printed it as look at what this autistic kid achieved, can you believe somebody with autism was able to do something as amazing as this? And at first, that seems really innocent. But if you think about it, and just re-listen to what I just said, it is pretty offensive to say, Can you believe what this autistic person was able to achieve? Like, why is the autism important when the achievement would have been amazing even if a neurotypical person did it?

Matt: Well I was going to say because you have Lego World, right? So even if you had a team of professional Lego makers, making a Titanic of this magnitude, it would still be impressive. I mean, even regardless of age, how many people work on it, it would still be an impressive sight to see. So therefore a kid doing it is phenomenal. But I think you’re right with labeling it as autistic kid I feel like—

Lia: it’s unnecessary

Matt: Right? Absolutely.

Lia: And so that is what they call inspiration porn, because the reason they call it that is because it appears to be that the reason that phrasing is put in there — the reason the term Autism is put in there — is because you’re essentially telling the neurotypical audience, if an autistic kid can do it, you definitely should be able to do something like this. So it inspires the neurotypical audience to want to accomplish similar goals. So it’s kind of using autistic people as a prop to get that and at the same time, it’s essentially belittling them.

Matt: It’s basically setting the bar. It basically says like oh, an autistic child was able to create this crazy, massive boat from Legos. This is the bare minimum because if you’re neurotypical, you should easily be able to do it. Right. So, I mean, it just sounds terrible to think that Oh, just because I’m autistic, I’m basically the bar that is being set. So everyone should be aiming above that bar — it just seems like crazy.

Lia: It’s pretty offensive.

Matt: Exactly.

Lia: So just keep that in mind. And that’s one of the things that again, is pretty controversial and pretty frustrating with the autistic adults, it doesn’t end there. We’ve there’s gonna be a long episode just hold tight, because we really think it’s important that you know these things just again, so you can avoid these landmines and avoid making any of these mistakes.

Lia: So the next one on our list is another controversial one, because a lot of parents like to do this. And this is putting up signs or stickers that call your child out as autistic. This might be for example, putting a sign or requesting a sign to be placed up in your neighborhood that says something like Slow down, slow down autistic child, or something like that, or the stickers that are put on the back of your cars that say something like autistic child on board or something like that. Now, obviously, these things are done with well intent. Obviously, these things are done to protect our children, they’re things like, Okay, I need to put the sign here because people need to slow down because my child does not regard traffic and he’ll run into traffic and cars need to slow down. That totally makes sense. Same with the stickers on the cars, it makes sense that you want to put a warning in case an emergency happens, and they need to break into your car and your kid’s nonverbal, that totally makes sense.

Matt: Right, and I think the big thing is, I’m coming at this from more of a safety concern. If you’re putting a sticker on the back of your car saying autistic child on board, you’re letting every person every creep, every everyone out there, letting them know that you have a child on board that if they are kidnapped, or anything along the lines, they won’t respond like a neurotypical kid. So they might not scream, you might just take their hand and they might just walk off with you. Or they might just as soon as the doors open in the car, they might just run off as is. So I think I’m seeing it more as a protective parent where I would be terrified of someone tracking me based on something that I put on the back of my car that they know oh, there’s an autistic child in there.

Lia: Right. So you kind of have to weigh the pros and cons. We already mentioned the pros of you know, helping with awareness and getting your child the help that they need should an emergency come up or safety. But the negative sides to that is, like Matt mentioned, the safety issues of potentially inadvertently putting a target on your child’s back. One of those things with a bumper sticker is a lot of the ones that I have seen are extremely detailed. And I’ve seen parents put these up and they put pictures of them on Facebook. And I just cringe because they say things specifically like not just autistic child on board, they’ll say autistic child on board and then on top of that, they’ll say child will not be able to respond child will not be able to communicate my child might run and like it basically lays out in fine detail all the things your kids —

Matt: A checklist for a kidnapper of perfect I don’t have to worry about any of these things. Now, I will say that I did see through some of the ads that there is for emergency personnel, there is a way to say that your child is autistic. So I think of the seat belt straps, I’m not really sure —

Lia: They have this thing that you could put on your seat belt that’s like a Velcro cushion that you kind of wrap around the strap. I think it’s supposed to be like a neck protector or like a chest protector.

Matt: And on there. It basically says I am autistic, I may resist if you’re trying to help me essentially. So if you are in a car accident, and you’re unconscious, and you have emergency personnel trying to get everyone out of the vehicle, they will be able to see the strap and right where the situation.

Lia: So it serves the same purpose, but it’s more private because it’s inside of your vehicle. And if you really feel like you need the sticker, like I know some kids won’t stay in the car, see, or they’re strapped and they might pull it off, or they might take it off and that might not work for you. So you could use the same sticker that you would use on a bumper sticker and simply put that inside your vehicle somewhere maybe on the inside of the window or on their door or something like that.

Matt: Back of the seat or something along those lines.

Lia: Right. So that’s one of those things that people tend to not want to let it go because people really like putting stuff on their cars like it’s part of our identity. Sometimes a car can be an extension of us. That’s why bumper stickers are so popular. But I really urge people to reconsider that just because of the safety issues you don’t really want to attract.

Matt: Well it’s also funny that you mentioned that that’s a part of my identity because we also see as far as social media kind of similarly linked with people displaying information about their autistic children as well. So I mean that is also partly linked to their identity as well where people have no problem basically sharing their child’s diagnosis to hundreds of people.

Lia: Yeah. So that’s actually another one of these topics. And that is publicly disclosing the diagnosis. Actually, this is something that I have spoken to autistic adults about. And it goes along with posting videos of negative behavior from your child. So things like meltdowns and stuff like that the autistic community is really upset with the fact that a lot of parents will publicly post not just the diagnosis, but evidence of your child when they are having a meltdown or sensory overload or something else that is considered, “undesirable”, and sharing it with the world. And there’s a couple of reasons why. One of them is publicly disclosing the diagnosis takes away the child’s ability to consent to that. And I know that for me personally, as a neurodiverse individual myself, I would have been mortified if my parents went around telling everybody about my diagnosis.

Matt: Thank goodness, Facebook wasn’t around when we were younger?

Lia: Yes, thank goodness. Because I know for me, I would have been really embarrassed. And I definitely would not have liked that. Sometimes parents don’t take that into consideration because the children are really young, or they’re nonverbal. Or sometimes we think that they don’t understand as much as they really do. And then we find out later that actually know more than we think.

Matt: And I think the other thing as far as posting a video of a meltdown, if you think about how would you like it if your parent were to post the most embarrassing thing of your childhood.

Lia: For the whole world.

Matt: Right? If Okay, if you’re a two or three year old, and you have a bathroom issue at the mall, and you happen to pee your pants or something, and you’re getting embarrassed about peeing your pants or something in public, I mean, it’s not flattering for anyone.

Lia: And it’s forever, right? It’s up forever.

Matt: Right and it doesn’t serve a purpose to anyone. It’s just showing the struggles that the child is going through without any disregard for how the child is actually feeling at that time, it’s completely pushing it aside.

Lia: And again, these are things that people don’t consider because our children are younger unless you’re posted these have older children, which is possible too. But if those videos do get tracked down, it makes her kid a prime target for bullying in the future. Bullies have started to mine Facebook for embarrassing videos from people that they will then use to either blackmail those students or they’ll use it to bully them further and spread it and make viral video on Facebook. It’s very easy for somebody to be able to do something like that and although they might not be in school for a couple years down the road. There have been several cases of people holding on to videos for a couple of years before they decide to use them on people so I wouldn’t put it past them and that’s just something that I personally have decided against doing is uploading any of those videos.

Matt: Right, so just ask you all just to think twice before you actually take a video or post a video online just what is the real purpose that you’re going for with this video? What is the intended purpose who is it intended for and just ask yourself if it is really absolutely necessary to take the video in the first place?

Lia: Alright guys, we’re almost done whacking you guys with a baseball bat, we only got one more of these to go. Hold on till the very last one that we got here for you guys is the idea of person-first language probably have heard this from any parenting, I guess they’re called parent training sessions that you’ve done through any sort of Autism Center or through in infants and toddlers program or your public school system. So to cut to the chase, the issue here is person-first language. Just when you are referring to a person before the autism so instead of saying autistic, it’s a person with autism. So instead of saying “My child is autistic”, a lot of professionals in the field — doctors, physicians, clinics, parent support groups — will say that the appropriate and polite thing to do is to refer to that autistic child as with autism. So you would say, “Oh, yeah, my child has autism”. You wouldn’t say “my child is autistic”. However, you may be surprised to know that the autistic community actually finds that offensive and prefers autistic. So they actually go against what most of the professionals will say they do not like person-first language, which is saying again, a person with autism they actually prefer to be referred to as autistic. And the reason why is because the implication of person-first language is that autism is more like an accessory like a purse that you can set down because it’s a person with the purse. It’s a person with autism, and many autistic adults view themselves as having autism be part of their identity and who they are that something that is inseparable from their very being. And because it’s inseparable, they define themselves as autistic. I am autistic. I cannot put my autism down and put it aside like I would an accessory. I’m not walking around with autism. I am autistic.

Matt: And I suppose I’m an offender of this type of language because I’m not even sure how to actually describe my daughter’s autism. It sounds terrible, but I’m not sure if I’m going to be crucified by the medical professionals or by the autistic adults. So I’m not even sure how to describe it, to tell you the truth. And I mean, I think for me, because I mean, I have disabilities, I don’t think that the disability defines who I am as a person. So I guess I’m not even sure which would be right. I’m not sure where I would actually fall into this argument myself, which might be the problem, because then it looks like I’m gonna be shot by both sides anyways. So I don’t know how you win here.

Lia: Yeah, so I honestly, I don’t play the game, I don’t really care about winning. To me, it’s more about just respecting the person that you’re talking to specifically. So the best kind of call to action here is if you are around an autistic adult, simply ask them what their preferences? Do they prefer to be called autistic? Or do they prefer the with autism person-first language.

Matt: Or their name?

Lia: Or their name? Yeah, I know, right. But when it comes to your own children, I think that that for us is going to be a decision that we’re ultimately going to leave up to them once they’re old enough to make that decision. And until then, we’re kind of just going back and forth between the two. I personally, I think you guys probably have noticed by now through this podcast, I personally use autistic a lot more, because I do know that is what the autistic community prefers and it just makes sense to me. It’s also shorter.

Matt: I mean, as far as when you’re just having a conversation with someone. It’s easier, right? I mean, I hate to admit that, because it’s easier we use it.

Lia: easier to say autistic than person with autism. And that just sounds weird to me, I’m sorry. But it does, I do kind of refer and self-reflect a little bit to my own neurodiversity. Because I have a couple of different things. I told you guys, I have ADHD, I have a few other things as well. And at no point in time have I really sat and cared much about how people refer to me, I don’t really care if they say I am ADD or ADHD versus I have ADD or ADHD. For me, they are kind of like, I can use either of them. And it doesn’t really bother me. And I know that there’s autistic adults out there as well, who will go between the two. So I think the best rule of thumb here is just ask the person and then when it comes to your own child, maybe go between the two or defer to autistic until they’re old enough to kind of let you know what they prefer. But I just wanted to give you guys you know, word to the wise out on the streets, it is considered offensive to say person-first language, you are better off saying autistic.

Matt: So hopefully this helped you navigate the waters a little bit better. And hopefully, you hadn’t made too many enemies in the process. And hopefully, we’re not a couple of those enemies as well.

Lia: Yeah, I think we set off enough mines in this episode to leave you guys with a few resources to help you out. We’re going to end this podcast. But before we do, I’m just going to let you guys know there’s a couple of autistic adults that you should probably follow. To get a better idea of what we’ve been talking about in this episode, you can follow a series on YouTube that’s called Yo Sammdy Sam, that’s yo s a m d y Sam. This is an autistic adult who goes through a lot of this stuff. So you’ll get her perspective. There’s another series that’s called Ask an Autistic that is also on YouTube. So you can go ahead subscribe to that channel if you’d like but that that person will give you some insight on their experience as well. And then to give you the flip side of it — because those tend to be a little more on one side of the argument — this is the flip side of the argument; another autistic adult you can listen to or read up on her blog is The Autism Cafe that is a Facebook group as well as a website and blog and that person is the one who’s more on the pro ABA pro puzzle piece side. The other two are more against but that way you kind of see both sides of the issue. And that’s all we have for you guys today.

Outro
Lia: Thanks for listening to embracing autism. Join us next time as we wrap up season one with our final thoughts, give our best tips on how to go from here and words of encouragement to help you continue on this journey. This is Embracing Autism.

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Resources
The Autism Cafe
Yo Samdy Sam – Autism, neurodiversity and exploring the autistic experience
The Autism Puzzle Piece: A Debated Topic
Boy with Autism Builds World’s Largest LEGO Titanic Replica

Applied Behavioral Analysis (ABA)
Show Notes for Embracing Autism Podcast — Ep. 110

Introduction
Lia: This episode we review what’s considered the golden standard therapy for autism — Applied Behavior Analysis, also known as ABA, and discuss common goals for this form of therapy, how it is used to improve a child’s quality of life and what makes it so controversial.

Lia: Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice and support while spreading awareness and acceptance of Autism Spectrum Disorder.

Lia: I’m Lia!

Matt: And I’m Matt!

Lia: And each week we will discuss our journey with autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources and sharing our personal stories. This is —

Lia & Matt: Embracing Autism!

Discussion
Matt: If your child received an autism diagnosis, chances are your doctor more than likely referred you to ABA therapy because it is considered the gold standard for therapy. Now because ABA is kind of the go-to therapy when it comes to autism, it is typically covered by most insurance companies. However, I would highly recommend that you check with your insurance company if you are considering ABA just to ensure that it is in fact covered. Now, I also want to make you aware that ABA is a little different than some of the other therapies that we’ve talked about and this is most likely because there is such a significant time commitment for the therapy. Most other therapies such as OT and PT, you’re looking at a therapy lasting 45 minutes to an hour, likely once a week. But with ABA, you’re looking at something between 10 to 40 hours a week depending on the needs of your child. So this is a much more rigorous therapy in comparison. The other thing to consider is not all the 10 to 40-hour duration will take place in a facility. This might also take place in your home or at the child’s school if they are of school age. This is important to remember because you need to make sure if you are considering ABA that you have the time commitment, and you’re okay with any type of lack of privacy because you will have a therapist in your house performing the therapy. The main thing to keep in mind is ABA therapy does require much more dedication in the hours that are spent with the therapy, as well as the therapy being much more invasive and coming into your own personal space at your home. So just take that into consideration.

Lia: So this episode is going to be a little heavier in terms of the information that we’re providing because ABA therapy is a pretty dense topic. There’s a lot to go over and there’s really a lot of information to unpack here so I’m going to try to go through the key components, but I would really encourage you to continue to research it after this podcast episode because there’s just not enough time to go over everything. But I’m going to try to go through the things that I find personally most important, and the reasons why we decided to consider alternate therapies. First thing I’m going to do is go through the background of ABA therapy a little bit the origins of ABA therapy and what exactly it is. As Matt mentioned earlier, it is considered the golden standard of therapies for autistic children. That just means it’s typically the go-to therapy and this is because it has been around for quite a while now. It was actually created by Dr. Lovaas in the 1960s and this is where a lot of that controversy comes from. The origins of ABA therapy are pretty sketchy, to say the least, there’s plenty of YouTube videos that go into this if you guys are interested. But in layman’s terms, the origins of ABA therapy were pretty abusive to children. They essentially were using a reward and punishment system back in the day. And so the punishment system was the thing that really drew a lot of attention to the negative side of ABA therapy because children were actually suffering consequences for not performing the desired behavior. This is something that has changed for the most part in today’s ABA therapies, unless there is a particularly bad ABA therapist who’s not doing proper ABA. According to today’s standards, there should not be anybody punishing children nowadays, that would be considered unethical and against ABA current standards. But it is important to know why this is considered a controversial topic because of those origins. The other thing to know is that the earliest form of ABA was considered something called Discrete Trial Training or DTT. This is something that is actually still used in today’s ABA therapy. Our child actually has a little bit of this in her speech therapy classes that she goes to, but it is something that is pretty specific to ABA both early on and today. Now, what Discrete Trial Training is, is essentially a very structured format to allow the doctor who’s working with the patient at that time to break down specific skills or behaviors that are considered desirable for the child to learn at the time. And they break it down into what’s called discrete components — so that’s why it’s called that — and so the child is going to be led through an activity that’s designed to teach this specific component to them and then they’re told to repeat that activity. Exactly the same way, many, many times over and over and over. And if they complete that task correctly, then they will get a reward for that successful completion. And at the time, if they did not complete that test successfully, they would end up getting punishment for unwanted behavior. And this training was done as many as 40 hours a week back then. Today in the altered version, as I mentioned before, there’s no longer that punishment component, but there is still that Discrete Trial Training with the positive reinforcement component. And in today’s ABA, it does still typically go anywhere between 10 to 40 hours depending on your state.

Lia: The newer approaches of ABA have tried to tackle this issue because as you can imagine, there’s a lot of unethical concerns there with the punishment aspects. So most of that has been eradicated. Like I mentioned before, if you see your ABA therapists doing anything that remotely looks like punishment, that goes against the guidelines, they need to be reported, because that’s not allowed anymore. What they try to do now is something that’s called incidental teaching. And incidental teaching is a way to be able to have your child still learn these skills, but now it’s going to be in the context of play, or other activities that would be a typical part of their day. So instead of having them sitting in this room, where they’re just doing trial after trial after trial after trial of the same task over and over, like ABA used to be, it is now that the ABA therapist might come into your child’s environment, whether that’s school if they’re in the public school system, or if it’s at home, or some ABA locations do actually offer a clinic. So the therapist will come to these locations, but it’s most ideal for that clinician to be in an area that your child goes to day to day rather than in the clinic. So they might even come with your child to like the playground. If they’re used to going to their aunt’s house, they might go over to the aunt’s house with them, they will just follow your child around their normal day, and try to incorporate opportunities for therapy throughout that day. The other thing that they do is try to take advantage of what your child is already typically doing or wanting to do. So if the ABA therapist comes to your house, for example, and your child’s really fascinated by their toy cars, your therapist comes in, they see that your child’s playing with toy cars. And they will see that as an opportunity for therapy, they will, they’ll see the toy cars as something that they can use to have your child engage in this Discrete Trial Training with them. So they will try to incorporate that into their therapy sessions for that day. And if your child switches what they want to play with, they’ll switch that as well. So they won’t keep your child stuck on that same task. If your child is leading them towards something else, whether it’s puzzles or anything like that they might have your child take the lead and follow.

Lia: Another thing that they will help with is these are things that you can get in other therapies as well. So things like how to dress yourself, or how to brush your teeth properly — life skills like that, you can learn these in OT as well. The difference here though is that the ABA therapists will follow you around in your own environment and also give you that consistent reinforcement so that your child is essentially exposed to do this repeatedly and will kind of learn it through osmosis by that repetition, as opposed to going into a clinic for one 45 minute session a week. Another form of the discrete trial training that they might do is for example, if your child is sitting at the dinner table, and you’re trying to teach your child how to properly pick out the fork or spoon that they’re supposed to use to eat with their meal, if they don’t typically use tools and they’re eating with their hands, they might then say, okay, which one’s the fork? Or they might hold it up and be like, Can you pick the fork and they might hold up a fork and a spoon and see if your child can pick out the correct utensil and then reward them that they do. Sometimes they might use like a treat like an M&M, or they might use things that your child likes like a tickle, or a sticker or something like that. Whatever really motivates your child to complete that task that’s very child-specific. So that is ABA in a nutshell. Now there’s a lot of reasons why people may want their kids to go into ABA. Like I said, there’s a bunch of other alternative therapies but ABA specifically tends to be chosen when there are specific behaviors that your child is performing that you would like for them to stop performing. It went from something that is from a reward and punishment system to a system that is attempting to diminish behaviors that are considered harmful to your child. This might be something like self-injurious behavior, and that can be something like the headbanging, or there are some older kids that have more severe self-injurious behavior. There are people who actually might pull their hair out or they might actually injure themselves more severely, to the point where it’s really really a potential danger, and sometimes it may seem that standard therapies don’t work for that. So a parent will go to ABA therapy as a way to resolve that issue. With all that said, there are a lot of potential benefits to ABA and there’s a lot of potential pitfalls to ABA, it is really specific to who the ABA therapist is whether or not they’re following the current guidelines, and even despite all that, I really encourage if you are considering ABA to make sure you observe every single session because you really need to get a feel for how your child is feeling in that session, and see if they’re getting overly stressed or not. There are a lot of ways you can see whether or not that program has any major red flags. Some of the things to consider are whether or not the program that you’re looking at has been using proven studies that are effective to base their strategies off of. So make sure that the strategies that they’re using are not something that’s off the cuff, that they’re just kind of making up and thinking that that’s what’s going to work, you want to make sure that they’re using evidence-based therapy. It’s also considered pretty sketchy if they’re not collecting any sort of data throughout the sessions. So I know for our child follow, she is not in ABA therapy, she does use the discrete trial method in some of her speech therapy and we constantly see the teachers taking notes during her sessions. These notes are observations of how she’s doing and this is to be able to do a compare and contrast later to see if the therapy is actually helping her achieve certain goals or not. So if the ABA therapists that you’re going to are not taking any sort of notes, if they’re not communicating with you where your child is at how they’re developing, and if it’s not working, that’s another major red flag. A really strong red flag for me is that there’s no supervision of any of the younger or more inexperienced practitioners. This is something that I’ve seen as one of the biggest problems in ABA therapy from what I’ve seen other parents talking about. It seems like there is a high turnover rate in the ABA community and because of that, they tend to hire a lot of young practitioners that are pretty inexperienced and don’t really know what they’re doing fresh out of the — I don’t know if it’s a college or whatever they go through to get that education — but these less-experienced trainers and supervisors tend to not do the best ABA therapy and not necessarily follow through with the principles and guidelines, which then could ultimately end up to be harmful ABA. That’s a big problem because ABA can go bad, pretty quick and easy. So definitely consider whether or not the people who are practicing the ABA therapy and the clinics are very well experienced and know what they’re doing. Also, make sure that the curriculum that’s being used is very specific and independent to your child. Another major red flag would be if you’re going to an ABA therapy clinic that just does a blanket encompassing ABA therapy for everybody. So for example, if your child is eight years old, and he’s going to ABA, and they have like a little clinic of eight-year-olds, and they’re all receiving the same standard curriculum, they’re all doing the same tasks every day. That’s not good, because it’s supposed to be tailored specifically to your child’s needs. And it’s supposed to accommodate your child’s specific interests so that’s going to be completely ineffective. So make sure to avoid that as well, you might want to also keep an eye out for any sort of positive and negative reinforcement. Again, you want one that would have positive reinforcements. If you see anything that has negative reinforcements, definitely run away as fast as you can — that is extremely damaging to children, I would absolutely not do that. Especially when you see things like a punishment, which is a completely unacceptable form of ABA. No child should be punished in any of their therapy sessions. If you see that, not only should you pull your child out, but you should definitely report it to whoever’s there and potentially to somebody higher up depending on the extent of that punishment.

Lia: The last thing that I want to mention with red flags here — this is a little more contentious of a topic — is the fact that ABA therapy clinics, a lot of them still do focus on getting rid of behaviors that are considered problematic. And the biggest controversy within the autistic adult community is really this component of behaviors being eliminated because they’re not considered neurotypical or they’re considered harmful when they in fact are not harmful. And this is something that might be like focusing on eliminating arm-flapping behavior because arm-flapping behavior is a harmless behavior. When your kid is stimming or doing that self-stimulatory behavior, it’s also referred to as stimming. Hand-flapping is one of those things and it’s just a way that your child is self-regulating their emotions and just helping themselves cope with whatever situation they’re in right now. So if there’s any ABA therapy that is focused on things like reducing the arm-flapping behavior or trying to force eye contact, things like that, those are definitely red flags as well. And it’s definitely something that I would urge you guys to reconsider.

Matt: At the end of the day, I don’t think that stimming should be the target of the therapy, mostly because I think it causes more harm than is beneficial at the end of the day. This basically wouldn’t be any different than if I took away my wife’s playlist when she wants to listen to Britney Spears when she’s really stressed out. And because I don’t find that Britney Spears to be socially acceptable. But of course, in society, that’s exactly what this is basically doing. It’s basically targeting arm-flapping or other stimming behaviors, because it’s viewed as unacceptable.

Lia: And for the record, I don’t listen to Britney Spears. But yeah, to keep going with that train of thought there, it depends on the therapist, and this is part of the controversy — the autistic community that has gone through this ABA therapy and grown up and they’re now adult and speaking back about ABA therapy and how it affected them. There is a lot of controversy with this because a lot of these autistic adults have talked about how ABA therapy was actually quite abusive to them in the sense that they felt that when they were going through ABA therapy, they were essentially being forced to become people that they were not in order to be considered acceptable to the rest of typical society. This is something that has caused a lot of autistic adults to become suicidal, depressed, they have a lot of insecurities. Many of them have become autism activists because of this. And there’s a lot of people that you could actually lookup on the internet and just do a quick Google search as to why they feel this way about ABA. I would urge you to just take that into consideration. Because although there is a component to ABA therapy that can be beneficial, particularly for things like self-injurious behavior, I would like to say that a lot of those therapies can be done through occupational therapy, for example. Some people say ‘well I put my child through ABA therapy because they were really struggling with the self-injurious behavior, headbanging and all that’. My child did headbanging and we got that completely resolved through occupational therapy. So if you find good alternative therapies, that’s something that can help you out tremendously. There are also other therapies available such as floor-time therapy, there’s the Hanen method, which is also considered under very high esteem among the autistic adult community. And there are just other alternatives that you can consider if it’s coming to those more difficult behaviors.

Matt: And I agree, you are able to get many of the benefits through other means. I know that for the time that we’ve spent there, we put in significant time and energy into working with our children and doing a reward system for any achievements that they’ve reached. And we’ve never, of course, done anything as far as any type of punishment. So if one of my daughters will take a piece of trash or cup and throw it in the garbage can, for example, we praise her just like we would any child that we have. So I think as far as focusing on the reward system can definitely help to kind of motivate your child and will help you moving forward.

Lia: And there are many reasons why ABA is considered controversial. And it’s not simply because of the punishment system because of course, that system is not really even being implemented anymore. So that’s an issue with earlier forms of ABA. But current ABA still has a lot of its controversial issues, one of them being the time commitment. Many, many many, many, many, many autistics and non-autistics alike are very hesitant and very against the concept of putting your child into a 10 to 40 hour plus therapy. I’ve heard in some states, they even go up to 60 hours a week, which is absolutely insane to me. The reason we personally did not put our children into ABA therapy was in fact, because of this time commitment in our state, we were recommended 40 hours each and I just personally think that’s absolutely too tough on a child — that’s a full-time job. And kids really should just be kids. I can’t imagine putting them into 40 hours a week of therapy.

Matt: Not to mention both our kids are a toddler. So a toddler basically doing a full-time job, every week with no break. I mean, I think that’s a great deal to basically ask them to complete I mean, 40-hour workweek for most of us is something we complain about, let alone if you are a toddler, and you have no say in that type of therapy. So that’s why I think that overall, we thought that the floor therapy because the kids are basically working with mom and dad in play, they don’t really notice that some of the activities that we are doing are beneficial to a therapy setting. But it doesn’t include a stranger who is coming into the house to try and recreate some of the experiences that we are handling with our children.

Lia: Another aspect of ABA therapy that’s considered controversial is the fact that it is considered to be too focused on eliminating behaviors rather than developing positive behaviors. So for example, typically it may be a target area to reduce or eliminate specific problem behavior. So we mentionned the headbanging, it can be also things that are considered a little milder. So things like tantruming, or if they were running away those sorts of behaviors. However, the reason that autistic adults are particularly against this form of therapy to treat that is that the goal of ABA therapy is to make autistic children look, “indistinguishable from their peers”, that’s from the original text of the creator of ABA. And the issue with that, as you can see why it’s extremely controversial, is because by creating a therapy whose goal and purpose is to make your child appear to be, “normal”, you’re thereby by default, saying that your child is not normal, and something’s wrong with them, something’s broken with them, that needs to be fixed in order for them to be able to be considered a part of the rest of society. So it’s inadvertently othering autistic children, it’s putting them outside of the box of normal society and saying ‘unless we’re able to normalize you, we’re not going to put you back into the box of society’. So that’s another area of controversy.

Matt: Not to mention that basically, at the end of the day, all you’re doing is just masking what is seen from the outside appearance, that’s basically not really addressing any internal struggles or any internal thoughts that these children are having. So they might really be wanting to stim or display some type of behavior but they know that they’ve been instructed not to and through these 40-hour therapy sessions, they have basically been trained, ‘it is unacceptable for you to stim’. So they still have those thoughts, it’s just that they — now they aren’t able to, they aren’t able to act on them, which doesn’t really solve any problem. It’s just creating, I think, more problems overall.

Lia: On top of that, one of the things that I’ve heard a lot from autistic adults is exactly what you’re saying. But the fact that it causes them to internalize these issues, too. So like you said, you grow up being told that this is the way you’re supposed to be, this is what you need to say and do to get x, y, & z. For example, if I want a cookie, I have to do this — but you don’t know what’s going on. In your child’s mind during that scenario, you don’t know if they’re distressed or not, or why they’re doing the behavior that they’re doing. And because we’re not addressing the why behind the behavior, we’re just addressing the outcome of the behavior, then that why question never gets resolved. So another way of thinking about this is if your child is constantly crying, because you don’t know why, right, your child’s just constantly crying. And then you find out that if you give them a bottle, they stop crying, right? So then you learn from that, ‘oh, my child is crying because they need a bottle, that must mean that they’re hungry’. But if you have an autistic child who’s an adult, and they have some other way of communicating through tantruming, for example, sometimes that tantrum is like the baby crying, the baby crying is crying because they need milk, the adult autistic who doesn’t know how to verbally communicate, maybe tantruming, because they don’t know how to communicate what they need. So an ABA therapy, what sometimes happens is they tried to train the tantruming out, so they’ll be like, ‘okay, that’s not an acceptable behavior. So this is what we’re going to target. And we’ll try to do a reward system to make it so that every time that autistic child or autistic adult does tantrum, they will have a consequence, which might be of the lack of reward’. So they might not get the sticker that they want, they might not get the treat that they want. This, in a sense, encourages that individual to stop tantruming. But it’s not addressing the issue of why they were tantruming. So that kid or adult ends up stopping the behavior and on the outside, it looks like ‘oh, cool, we achieved success, our kid’s no longer tantruming, this is great’. But then we find out years later through the autistics who are able to communicate verbally or non verbally, that, in fact, when they went through that they didn’t actually feel like that issue was resolved. They feel like that issue was made worse because what they learned was not that, ‘oh, if I stopped tantruming, I get this. And then my issue is resolved’. What they learned was, ‘if I tantrum, I’m not going to be able to get the things that I need. So I’m going to stop expressing my need for whatever it is whether it’s food or whatever was causing the tantrum, because I know that I’m essentially getting punished with the lack of reward, or I’m getting punished by the fact that I’m not getting the acknowledgement that I want’. And then it puts the adult and child into this learned helplessness mode. And learned helplessness is essentially in psychology, it’s when you feel like no matter what you do, you can’t get the help that you need and you’re kind of like panicking internally. So they learn that ‘you know what, there’s no point in tantruming because I’m not going to get what I want and I’m just gonna have to suffer through this and move on’. And then that’s how you end up getting autistic adults who have more emotional, low self-esteem and stuff when they’re older because they felt like their parents weren’t taking their needs into consideration and they just had to suck it up and move on, because their needs weren’t important unless they felt like those needs were considered typical for their age.

Matt: I agree — I mean, it’s basically psychological games. I mean, that’s basically what you kind of described a little bit. And I think that you’re exactly right, you’re basically trying to, in this scenario, clean out the cobwebs of your life without ever trying to find the spider more or less, because yeah, the spider is going to continuously fester and create more cobwebs.

Lia: Yes, actually, that’s a good metaphor, because you’re using the spider who’s created cobwebs and spiders are considered a pest, right? Most people are afraid of spiders. And in that case, that is kind of like the autism mentality, the taboo behind it that a neurotypical parent might consider their child’s autism to be a spider that is creating webs, which is like this unwanted thing. But you got to stop and take a step back and look at it from the perspective of the autistic person and say, what’s a spider to you might be something amazing to that autistic person, because who knows that spider could be Charlotte from Charlotte’s Web, and he’s trying to weave out messages to you, and you’re never going to get the messages because you keep pulling down the cobwebs. So I know it’s kind of a silly metaphor, but it really, really drives that point home that ABA therapy, I feel like has a lot of good intent, I feel like it can potentially be implemented correctly under a lot of strict supervision and just a lot of rigorous making sure that it’s done properly and there isn’t any of this correcting behavior. But honestly, to me because it requires so much work, I don’t personally find it to be worth it, it’s so much easier and safer alternative to just get those things accomplished through OT, PT, ST, or even things like play therapy, and floortime therapy. And because there is so much controversy around it, I really would encourage you all to just do your research. And what I mean by that is to make sure you’re looking into both sides of the argument. Make sure you talk to autistic adults who’ve gone through it, make sure that you look at the history of ABA, there’s a lot of helpful YouTube channels that talk about it, just make sure you do your due diligence, because like we’ve mentioned many times, it is a huge commitment. And do you really want to put your child through 40 hours of something, if you feel like it may potentially be harmful?

Matt: I agree, I would definitely focus on also being involved as well. So if you decide to put your child into ABA, pay attention to what is being taught what the activities are. And then at the end of the day week, however long you have been observing it take into consideration, ‘okay, is this something that I can see, is my child benefiting? Is my child’s health still good? Have they had any issues or anything to that nature’, and then just wait from there. I mean, we both started the physical therapy program and then at the end of the day, we were able to see progress. And then we were able to kind of take on that task doing kind of our floor therapy at home without actually going to the facility. So I mean, if you start it and decide later on that you don’t need it anymore, or don’t want to proceed with it, that’s fine. But definitely, be involved and make an informed decision based on what is best for your child.

Lia: And I just want to mention really quickly for everybody listening out there. This episode is possibly the hardest episode for us to record because ABA is such a controversial topic, it’s really difficult to talk about it without upsetting somebody. There’s a lot of people who are strong advocates for ABA, and there’s a lot of people who are strong opponents of ABA, it’s one of those topics where you either have no opinion on it, or you have a really, really strong opinion on it. It’s really hard to find that middle ground. So we’ve hoped that we’ve been able to find a little bit of that middle ground for the sake of this podcast. So you guys get a little bit of both sides. Our goal here is not to tell you what to do. We’re simply telling you, what does each person think? Why is it potentially beneficial? Why is it potentially harmful? And why we personally are not considering ABA therapy for our children. At the end of the day it’s your child, it’s your decision to make, we just want to make sure that everyone’s making an informed and educated decision.

Outro
Lia: To review in this episode, we discussed how ABA therapies reward repetition through discrete trials training to target problem areas such as self-injurious behavior. We also touched on the controversy surrounding ABA, particularly how the autism community considers it a form of abuse. And we encourage listeners to consider both sides of ABA before committing to the hotly debated golden standard. Thanks for listening to Embracing Autism. Tune in next time when we tackle the most contentious and controversial topics in the autistic community and answer questions such as what is considered the appropriate language when referring to individuals diagnosed with Autism Spectrum Disorder? Why do some autistic adults hate the puzzle piece symbol? And what’s wrong with calling myself an autism mom or dad? This has been Embracing Autism.

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Resources

Incidental Teaching – Association for Science in Autism TreatmentDescription
Communication Development in Children with Autism
Learned Helplessness: Seligman’s Theory of Depression
Home of DIRFloortime® (Floortime) – What is Floortime?
More Than Words – Hanen Program for Parents of Children with Autism

Speech Therapy
Show Notes for Embracing Autism Podcast — Ep. 109

Introduction
Lia: In this episode, we take a deeper look into what you can expect at your child’s speech therapy sessions, what target areas speech therapy can help with, and some tools that may be provided to your child.

Lia: Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice and support, while spreading awareness and acceptance of Autism Spectrum Disorder.

Lia: I’m Lia!

Matt: And I’m Matt!

Lia: And each week, we’ll discuss our journey with autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources and sharing our personal stories. This is-

Lia & Matt: Embracing Autism!

Discussion
Matt: So Lia and I wanted to touch on speech therapy because both of our daughters go to speech therapy. And we thought that it was one of the critical therapies that would come up after an autism diagnosis. So in this episode, we’re going to refer to speech therapy as ST. Just so there’s no confusion moving forward. So I think the first part is the main focus of speech therapy is finding communication and language skills to better aid your child moving forward. When we talk about communication, there are multiple types of different communication that they would focus on; this would be verbal, nonverbal, and also just kind of a social communication altogether. And the main focus, of course, is basically getting your child to be able to communicate in a useful and functional way in society. So I think that it’s important to note the difference between communication and speech. When we think of speech, we pretty much think of the physical ability to create sound and putting those different sounds together in what we know as language. For the concept of communication, that’s kind of a broader category in itself, where it can either be nonverbal cues, it can be a writing system, picture system, or it could also be intermittent verbal communication as well.

Lia: When you are bringing your child to speech therapy sessions due to the fact that your child has some sort of speech delay, or a speech impediment, or some sort of difficulty in that communication aspect, it may also be for social reasons. So perhaps your child has typically developing speech, but they may have difficulty in using that speech appropriately in social situations. So speech therapy will actually help in both of these categories. There’s a lot of different factors that speech therapy will dive into; different things that they will focus on. Part of what we focused on with our child was joint attention. Joint attention is the ability of your child to be able to engage with you or whoever else is with them at the time while they are completing a task. This can be something like reading a story or playing with some blocks, or if your kid’s older, maybe you guys are playing checkers together, or some sort of game that you’re participating in with them. And the joint attention aspect of that would be attempting to engage with you at some point in time. And that’s typically through eye gaze or smile, or some sort of acknowledgment. I think one of the very standard things is for a toddler, for our kid, we would be reading her books. And the expectation would be that as we’re reading the book to her and pointing out animals in the book if she got excited, she would look at us and smile, and then look back at the book and then look at us again and engage in that back and forth attention behavior. That is called joint attention. Now, neither of our children had that, however, so that became one of our speech therapy goals.

Matt: When we first started speech therapy, we didn’t have that connection with our daughter as being able to — she would come to us with interaction in mind — she would be in her own world doing her own thing. And even if we tried to engage with her, it would be we were basically doing a separate activity next to her, and she would be doing her own activity. But I think it was through books because she absolutely loves books to create a bridge into her world where she would be able to kind of connect with us with the different stories that we were reading her.

Lia: And a good speech therapist will be able to work with you to find what it is that your specific child is interested in, and try to use that as a way to get them to engage in conversation or meaningful communication. So if your child is into books like ours, then they might do reading therapy. That was one of the things that we focused on in speech therapy. Reading therapy is kind of like a subcategory within speech therapy, where we specifically used books to try to target language and communication skills. For example, we went and looked for very specific types of books. We were told to look for books that were very simplistic, only had one or two pictures on the page, so they wouldn’t be overly distracting and had really basic text on them. A lot of kids’ books nowadays have a very story-like paragraph-style text and those aren’t really particularly good for reading therapy. It’s better to have books that have basic one-line things on them. I know for our kid, one of her favorite ones was You are my sweetheart (paid link), You are my cupcake (paid link) book series by Joyce Wan and the reason that book series was particularly good in particularly helpful for us is that it has one picture per page. And it has a very short, maybe three, four-word sentence per page that describes that image. For example, one of the lines is, in fact, “you are my cupcake”, and then it’s repetitive. So each page has a “You are my…”, and then it just switches what that next word is. So the combination of short, brief sentences with simplistic pictures and repetition really helps your kid understand the concept of the book just by continuous exposure to that book.

Matt: And I also think that helps on the other element of developing the language to be able to repeat the common phrase. In the book that we used, You Are My Cupcake, she would start to learn ‘You are my’ and then just change out each word on the different pages. So she is able to slowly start to basically repeat the phrase moving forward.

Lia: So she basically started to learn the book and memorize the book. And initially, when she picked up those phrases, it was just a matter of completing the phrases in the book. But after time, she started to be able to apply those phrases to real-life situations where it was actually appropriate. So reading therapy helped us get her to a place where she was able to gain language that initially didn’t seem to do much for her because it was, like you said too, scripting or parroting. For those of you who don’t know, scripting is repeating phrases verbatim and parroting is repeating stuff that you’ve heard. The scripting can be from a book; for example, if they memorize the line, they might repeat the line verbatim back to you. That was part of what she started doing. However, it was actually helpful because it expanded her vocabulary. So she went from nonverbal to scripting. Some parents get worried about that, but it’s actually a good sign because it’s showing that your child is progressing, they are picking up language. And even though that language might not be what we might consider natural language, yet, it’s completely better than nonverbal, because they’re at least getting through that transition period of nonverbal to verbal through the scripting.

Matt: It also allowed for the development of her language as well in the You Are My Cupcake, since everything is so repetitive, if we read the phrase, “you are my…” she would be able to fill in the blank saying “cupcake”, and then it was kind of almost in a way that we were asking her a question she was filling in giving us a response as well.

Lia: And what also helped with that is if you get a simplistic book and the simplistic book is really all dependent upon your child’s specific situation, and age appropriate level; So the You Are My Cupcake book — that may be appropriate for your 11-year-old child, as well as a two-year-old child depending upon the level that your child is at with that language development skill. So just look for books that you believe are age-appropriate for where your child specifically is at language and communication-wise, and consider doing that sort of reading therapy structure that we’ve done with our speech-language pathologist who ran the speech therapy sessions. We started with books because it was a special interest of hers, but also because it really is an easy way to practice things like joint attention, as well as distal and proximal pointing. Distal and proximal pointing was another thing that our children both kind of failed at during the autism screening. Distal and proximal pointing is your child’s ability to point at something that’s far away or follow a point of something that’s far away, and to also be able to point at something that’s close up; basically the skills that are needed to communicate non verbally. So that’s like if you wanted to communicate with somebody and explain to them like, “Oh, look, yeah, the movie theaters over there”, and you’re showing them a point, it’s an important life skill for that child to be able to understand. And when the person’s pointing, they need to follow that point and understand what it means. So that’s another nonverbal thing that depending upon the age of your child might be tackled differently. But books were a great way to start out the proximal pointing, which is the pointing really up close because you can point to images in the book.

Matt: So I think there’s a difference between the two different points because in our case, our daughter was able to grasp one of the points faster than the other. I’m thinking of late at night, when we were taking our daughter home, if there was a big harvest- Full Moon, it was a clear night, I’d be walking in with her and I’d be able to point at the moon and say “moon”. And she was able to relate that to one of her books that we were reading, Where’s the moon-

Lia: -Or I See The Moon, I think.

Matt: But she was able to make the connection of ‘Oh, I see the moon and my dad is pointing to the moon’. So she was able to draw the connection there. It was interesting because when we were inside and I was pointing at something much closer than the moon, she wasn’t able to follow what I was pointing out. So it’s just interesting to see that she was able to see something very far away, but not necessarily something much more subtle. That was much closer.

Lia: And that actually was another thing that was brought up during speech therapy was how to be able to transition those skills between proximal and distal pointing. So if your child does struggle with point they will help a lot with that or if they’re not particularly good at either they come up with nice tricks, depending on your kid’s specific special interest that might get them more into attempting that point.

Matt: And I think like anything else, the more you work at it, and they get the idea of when you are pointing it is for a purpose. So in some cases, if my daughter wasn’t able to understand what I was pointing at, I would do my finger extended, like I was pointing, and basically walk up to the item that I was pointing at, and basically touch it. So she could see that from a distance, I had my finger pointed out pointing at something. And then as I get closer and closer and closer, she could see exactly what I was talking about. And I think doing this over time, she was able to kind of grasp that concept.

Lia: Another thing that speech therapists will really focus on is nonverbal communication. So the pointing is part of that. But this can also include not just gestural communication — which is the pointing or facial gestures and expressions — but it can also include things like training with the PECS system, which is the Picture Exchange Communication System, or electronic talking devices and other nonverbal communication tools. This will depend heavily on the needs of your child. With our first child, we didn’t really have to dive too deep into this because she picked up language pretty well with the speech therapy. But with our second child, it has been a little bit more of a struggle to get her to verbally communicate. So we have had to attempt to use a Picture Exchange Communication System. This is a system where you are essentially using pictures that have a representation of what it is you’re trying to say on them along with the word. So for example, if you’re trying to say that you’re hungry, and might have a picture of food, and then it says “eat” on it or something like that. So then you would essentially teach your child that when they’re hungry, they will give you the picture that says “eat” on it. And in exchange, you will give them something to eat. So that’s why it’s called the picture exchange communication system because you’re trading the picture for the item that’s on the picture.

Lia: Now the other items on here, the electronic talking devices, that can be something like an iPad with a software program that’s installed on it, that is very similar to the PECS System, and that it will have images and words as well. But the child or teenager, this is usually for the older kids will be able to just push buttons on that iPad app, or it might be a device itself that has the pictures on it. And every time they push that button, the device will sound out loud, whatever that says. So for example, they might learn to push a button that represents “I”, a button that represents “want” and a button that represents “snack”. And then when they push those buttons, the device might then say out loud, “I want snack” and some sort of like robotic voice. And that would give them another way of doing it. Some do a combination of that. So our child right now is in a speech therapy school program. And one of the things that they’re doing there is the PECS system on a board, where they’re teaching her to point to pictures to communicate what specific snack she wants. And it’s also about expanding language. So we had with our child is that she started off just saying one word phrases. And so if she wanted chips, for example, she would just say, “chips”. And you would assume that chips means I want chips, but she just said chips. So as she’s been going through this program, they’re teaching her to use the full phrase, I want chips. And this is something that I’ve seen her actually do really well with, with just — what, two months of school so far?

Matt: Right. And there are other areas that she’s expanded into short phrases as well. I think one of the ones that she used to say was if she needed help, she would say “help you”, which most people wouldn’t necessarily know if this little toddler came up to you and, missing, saying ‘help you’ you’d be like, ‘No, I don’t need help. I’m perfectly fine’. But when she was saying help you she meant that she actually needed help. And actually just recently she’s been able to switch it and say “I need help”. I think that was actually today. Today this afternoon, which is a huge transition because pretty much everyone will be able to know ‘Oh, you need help instead’ of help you because help you doesn’t necessarily mean anything. So just these small little phrases are making a huge difference. And I also think for the PECS system, it’s also something that you definitely have to work at because I know it wasn’t terribly intuitive for our youngest daughter. It definitely took some give and take trying to get her to see what the picture actually was and trying to relate it to what she was actually feeling. So if she wanted a snack, it was very repetitive, repetitive of us working with the picture to try and show her- ‘Oh, in this picture is a snack and you are feeling hungry, so you want a snack’ and being able to draw that connection to her.

Lia: So PECS is definitely one of the biggest tools that is used right now. It’s kind of like a go-to if your child’s nonverbal to help them get that boost. And speech therapy in general will go through a bunch of other things, too. It’s not just PECS systems or communication devices. They work on a bunch of different types of language, as we mentioned before. So for kids who are I would say, a little bit older, so they understand what body language is, those children who are able to understand that might then go to speech therapy to work on body language. So some of the things they might address for again, the older child is how can you tell if the person you’re having a conversation with is joking or serious, it might be something like teaching them how to judge when is the appropriate time to join into a conversation? Or when is that conversation a private conversation that you should not be trying to get into? The speech therapists will help them learn how to recognize those physical signals and body language so that they learn how to communicate appropriately that way as well. They also work on some skills like asking and answering questions which we touched on a little bit. Children who are autistic, typically, when they develop, they don’t really understand that the ability to ask and answer questions is something that is innate. But autistic children tend to have a little bit of a delay in that. So the therapist can help teach your child how to recognize a question, and how to provide an appropriate answer. So sometimes, if you’re asking them a question, they don’t necessarily understand it’s a question, they might read it as a statement instead. So they don’t understand that you are expecting a response. So that’s something a speech therapist can help with as well. And again, that tends to be I would say, with a little bit older kids, not so much the toddlers, because that’s more of a complex scenario. Now there’s a bunch of other things they help with as well. There’s something called speech pragmatics, and speech. pragmatics is basically just the day-to-day conversation styles of people. So for example, it’s useful to be able to say to somebody, “Hey, good morning”. But it’s also important to know when it’s appropriate to say “good morning”, and who it’s appropriate to say good morning to, it might be really weird, if you just went up to somebody you don’t know on the street, tap them on the shoulder and said, Good morning. So that’s another thing that they help with is speech pragmatics training, which is helping your child understand the appropriateness of those situations, and also the use of idioms, which is again, understanding how those phrases are used. And when they’re taken literally versus maybe — not sarcastically but when — yes, another thing that they work on is something called prosody. Prosody is the melodic sound that your voice makes when it goes up, and it goes down. And there are inflections and at the end of a question, I might say, have my notes go up, or I might just make my notes go down. And that up and down of your voice is something that autistic people tend to not necessarily catch on to in terms of what it might mean in the person’s sentence. So typically developing children and adults, this is a skill that you gain to understand what is meant by certain inflections of your voice. This is a lot more challenging for autistic children and adults. So this is something a speech therapist would help a child be able to identify and to be able to develop in their own vocal skills as well. You might also not think about this, but grammar is something that speech therapists can help with too. Grammar is something that can be confusing as well, because some autistic children — I know our child would refer themselves in third person. So our child did this a lot. Anytime we referred to her by her name, she learned essentially, ‘oh, if other people are referring to me by my name, that must mean that I must call myself by my name as well’. She had difficulty understanding that when you talk about yourself, you say I or me, and this is something that is pretty standard with a lot of autistic children, as well as something that they work on, is teaching the child when to use your name versus when you should be referring to yourself as I or me and first-person rather than third person.

Matt: And I think this was actually probably harder for us than for her. Because since she was repeating what we were saying we had to basically speak as if we were her. So we’re using I language, which for her, and it was just kind of getting it was kind of a jumbled mess of is she going to be able to get the connection, or is it going to make things even worse, but thankfully, I was absolutely amazed. She was actually able to figure out that she was able to use ‘I’ and be able to transition without any serious delay there as I would have assumed otherwise.

Lia: Yeah, and the switch on that was really when our speech therapist told us that we needed to change our language. So it will feel really awkward and uncomfortable at first, because in order for you to help your child learn — I and mean language — you have to start talking to your child in that language, even though you know you’re not referring to yourself. So for example, if you have a child, Johnny, Johnny wants apples, and Johnny is always saying Johnny wants apples when they’re hungry, you would then turn to Johnny and say, I want apples. So you’re telling him I want apples so that he learns to repeat I want apples. So it definitely feels a little weird when you’re doing it. It’s really awkward at first, but it works.

Matt: Right, it took us a little while to get the hang of it. But then after a while, we saw that it was making a difference for her. And then honestly, we didn’t have to keep I mean, once she had it picked up, we didn’t have to keep repeating the same phrase to her, she kind of took the ball and ran with it.

Lia: And then the two final areas that speech therapists will work on. The first one is concept skills. This is a person’s ability to be able to stay abstract concepts and understand that that doesn’t necessarily mean a literal thing. So autistic adults and children alike tend to struggle sometimes with abstract concepts, specifically abstract verbal communication or written communication. So something like ‘I’m so hungry I could eat a horse’, they may take literally, and they might think like, ‘wait, what you want to eat a horse? Why would you want to eat a horse?’ So sometimes that break in consistency is something that a speech language pathologist might help with, and might try to teach them that. Now when somebody says they’re so hungry, they can eat a horse, it’s an expression that means they’re really, really hungry. So that’s something else that they will work on. And the final bigger thing that they will work on, particularly with the older kids is the social skill development aspect. So when you’re starting off with the younger kids, you’re really focusing on those basic fundamental building blocks of language and communication skills, you’re far more concerned on just trying to make sure that you can communicate with them, before you move on to more complex things like social skills. This is something that would work on things like recreational therapy, drama therapy, art therapy, things like this, that helped build social communication skills, and include things like the ability to ask and answer questions have like a back and forth conversation with someone that keeps flowing, to be able to judge the appropriate distance that you should be standing next to someone when you’re talking to them. So teaching them when is it an invasion of space, private space versus when is it too far, and just giving them that level of awareness in a conversation, as well as being able to judge the mood of the room. So this might be very important for somebody, for example, who may have a sense of humor, and doesn’t realize that maybe you shouldn’t crack a joke at a funeral. So that’s, that’s things that surprisingly, enough speech therapists actually do help with as well.

Matt: You actually jogged my memory when you mentioned the physical distance that two people might stand when they’re having a conversation. And this kind of brings me back to language, it might not be something neurological, that is the struggle, it might be a physical disability that is preventing language to happen in the first place. I know there is the idea of —what do they call… I think Tongue-Tied ?

Lia: tongue ties, yes.

Matt: Right. So as far as your actual tongue and not being able to lift up in your mouth to actually make the sound to produce whatever the word is that requires that sound. And I mean, there would be other struggles if there are disabilities that would prevent language from actually taking place in the first place.

Lia: And one of the things that we mentioned in our previous episode about occupational therapy is how occupational therapists look at motor planning delays. That’s something that a lot of autistic kids struggle with. What I learned, surprisingly, through our speech therapists was that you can also have motor delays in language. This was something that they were keeping an eye on for our second child who has had a particularly difficult time with language development, she is even more behind than our first child was. And so they were keeping an eye on that because it is possible to have that same motor processing delay that our child had with being able to understand, okay, I need to first think about moving my foot in order to move my foot. That kind of disconnect can also happen in the mouth and with your vocal cords and with your tongue and all of that. So it’s possible that your child may be like my child and have a motor planning issue specifically with speech, in which case that aspect is more of a neurological condition. And they would be able to target areas there to try to help with that as well.

Matt: Right, because we see the difference between our oldest and our youngest for oldest, she had a delay, but then her language eventually kind of started to get caught up in the process, as where I think our youngest still falls in the category of nonverbal.

Lia: Yeah, she’s, she’s almost two, and she still pretty much doesn’t have a whole lot of words or communication.

Matt: I was gonna say we rely relatively heavily on other communication to kind of bridge the gap into figuring out what she needs, she’ll rely a little bit more on sign language than speaking, for example, to get her message across to us.

Lia: Overall speech language pathologists will help you during speech therapy sessions to really focus on your child’s ability to communicate verbally or non verbally, as well as socially, it’s really important to note that your expectations and speech therapy should be focused on being able to get your child to communicate, it doesn’t matter how your child communicates, it may be that your child will go from nonverbal to verbal, and I know that a lot of parents really hope for that. I know for us, you know, it was fantastic to finally hear our daughter, say, Mama for the first time. But realistically speaking, not all autistic children get to the verbal communication aspects. So I just like to put that out there so that everyone knows that it’s really case by case, your child may or may not verbally communicate, no matter how much speech therapy you put them in. But that’s not really the goal. The goal is to be able to get them to communicate at all. And that is something that they can do through the PECS system with pictures, they can use an electronic assisting device, they can use sign language, there’s so many ways that they can communicate. And that’s really what I would focus on. Because once you unlock communication, there’s been so many breakthroughs for us with our children. I know our second child who’s pretty much nonverbal still at this point, we have been able to recently get her to try about two sign language gestures.

Matt: Yeah, she would never really tell us when she was hungry. And we really struggled with the PECS system, try and have her bring us card for a snack to let us know, oh, I’m hungry. It didn’t catch on terribly great, I would say. But then she was able to figure out the sign language for eat. So she’s been doing a really great job of signing when she’s hungry and wants to eat. And we know when she actually gives us a sign she’s not kidding around, we put her in her chair. And pretty much whatever we give her she scarfs down so that is kind of her telling us like ‘Hey, Mom and Dad, I’m starving, like give me something to eat’. But that’s been really helpful for us because it gives us an idea of what she’s feeling. It’s the same thing with a diaper change, she’ll kind of let us know when she needs to be changed. If if we’re walking around, she has her pants on and we can’t see the blue line on the diaper she’ll let us know that she needs to be changed as well. But I really think that the sign language has been very helpful for kind of us moving forward with her.

Lia: Yeah, so I just I’m gonna wrap things up here. But I just want to let you guys know and reiterate, communication is all you’re really looking for here, it doesn’t really matter which form of communication, just find the way that works best for your child and work with them as best as you can to get that communication because it really opens a lot of doors. And I will tell you from personal experience with our kids, sometimes they start off nonverbal, but then that communication system that you put in for them to start unlocking doors to verbal communication as well. Our first child, we started her off with sign language, it was very difficult because of some sensory issues she had with her hands. But that triggered something in her mind to start connecting language, the use of signs to assign meaning to a physical object like food, it’s somehow triggered something in her mind that she then was able to start associating the words to that item. And she basically didn’t need to use sign language anymore. So we ended up just skipping it for her because it was enough of a transition to help her get that extra push that she needed for language.

Matt: Yeah, I think there definitely is kind of — at least we kind of see like a breakthrough moment or a silver lining where there’s just a window into when there’s that connection that’s being made where there’s no communication whatsoever. And then they get some type of communication where they understand that, ‘Oh, I’m able to send a message to someone letting them know something that I’m feeling’. And it is very helpful. I mean, even if it is through sign language and not actual verbal communication.

Lia: And I think the most important thing I’ll leave you guys with this is, a lot of times people assume that because a child is nonverbal, that they don’t understand what’s going on. We have learned through this journey that that’s not the case, most of the time, it seems like most of the time, they are actually quite aware of what’s going on. And they are learning and they are absorbing things like little sponges, and they just aren’t able to express it. So because they’re not able to express it through communication, we just assume that they don’t know. I will challenge you guys to take into consideration and just try to assume that your child actually does know what you’re saying when you’re talking to them, rather than assuming they don’t understand. Because you may find out later down the road if you go through speech therapy, and you’re able to unlock communication for them, whether through verbal or nonverbal, they might come back at you and say, ‘Hey, by the way, Mom, I understood you the whole time’. So be careful what you say. And definitely, definitely don’t take for granted that communication piece because you never really know.

Matt: that’s true. I think that’s a great helpful hint.

Outro
Lia: So that’s all we got for today, guys. Thanks for listening. To review. In this episode, we talked about what your child may work on in speech therapy, how your child does not necessarily need speech to have communication and tools that may be used, such as the picture exchange communication system, sign language and electronic communication devices.

Lia: Thanks for listening to embracing autism. Join us next time when we take a look at applied behavioral analysis or ABA and answer questions such as Why are autistic children often referred to ABA? What can ABA help my child with and why is ABA so controversial? This has been Embracing Autism.

Resources
What is the Picture Exchange Communication System or PECS?

Navigating Financial & Educational Resources
Show notes for Embracing Autism Podcast — Ep 105

Introduction:
Lia: In this episode, we will review a variety of financial resources to help support your child that are available in the United States. It’s important to note that each state has different programs, so please check out our podcast notes to learn more about your specific state.

Lia: Welcome to Embracing Autism, the podcast for parents of autistic children seeking advice and support while spreading awareness and acceptance of Autism Spectrum Disorder. I’m Lia!

Matt: And I’m Matt!

Lia: And each week we’ll discuss our journey with autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources and sharing our personal stories. This is-

Lia & Matt: Embracing Autism!

Discussion:
Lia: So in this episode, we want to touch on financial support systems and financial resources. Mostly because finances seem to be one of the biggest struggles of parents with autistic children. A lot of studies indicate that money is really an issue when it comes to all the therapies and all the supports that are needed to provide to autistic children. So we wanted to just give you guys additional resources to help you out. Matt is a little bit more of an expert on this area, I’m going to leave most of the talking up to him. And I’ll touch base and the key areas that I know a little more about.

Matt: There are actually three roads when you’re looking for financial support for your child. And when we say financial support, we don’t only mean a monetary value, that you’re getting a grant or a scholarship or something in that regard. It’s also services that are free and that are given to you by the government. So the first one we will look at is the school programs. So for public school districts, a federal government is required to provide services to your child to meet their individual needs. Now, this could be in the form of an IEP or an IFSP. So the first thing is making sure that you’re advocating for your child to be put on one of those programs depending on which one is better for your family. Now Lia is a better expert on the IEP/ IFSP because she filled it out for our daughter. So I’m going to let her kind of elaborate a little bit on that.

Lia: Okay, so I’m going to touch base a little bit on some of the opportunities available in the public education sector. So essentially, your child — if they are a special needs child — has the right to free and appropriate education (FAPE). And what that means is there have been some Acts that have been passed that protect your child’s right to do that. So one of those is the IDEA Act. And the IDEA Act is the Individuals with Disabilities Act, that one is the one that specifies that regardless of your child’s disabilities — and that includes autism — your child is entitled to early intervention services and special education. This also means that you as a parent are entitled to be treated essentially as an equal partner with the school district in deciding what that education plan is going to be for your child and how to meet his or her specific needs. So this is the part where you really need to kind of push to advocate because some schools will push back and not necessarily see you as an equal partner in this process. But you really are legally entitled to be an equal partner. And you really do have an equal say on how your child’s education will move forward, according to the law.

Lia: Now under IDEA, there is something called ‘Free and Appropriate Public Education’. And that’s frequently referred to as just FAPE. And that, again, applies to all children with disabilities. This essentially means that your child is entitled to be specifically accommodated. So they’re entitled to have their education specifically tailored to his or her specific special needs. And that is going to be what allows you to help your child make the progress that they need in an educational setting. So one of the challenges here is working directly with the school district to try to determine what’s going to be appropriate for your child and thereby determining what accommodations or resources they’re going to be provided. If you’re not able to advocate strongly, sometimes the schools push back and give you less than what you expected or what you thought your child would need. So again, this would be the area where you really try to fight back and use the law to your advantage to try to get your child the services that they are entitled to. Early Intervention services is another free program that’s available through the public school system. We mentioned this a little bit in earlier episodes. And that means that any child that’s younger than age three who has a developmental delay, like autism, or a condition like autism is entitled to early intervention services through these programs for absolutely free. So there’s no cost associated with this. And this is a great free resource for you. This usually will include things like physical therapy, speech therapy, things like that. And that’s where the IEP and IFSP programs kind of come into play. So once you’re in this program, what happens is you get an IFSP. That’s an Individual Family Service Plan, and that is based on a comprehensive evaluation of your child. And it essentially gets an idea of where your child’s current functioning levels are and sets you up with some goals and specific services that are going to be provided to your child and your family. This is a family-oriented service because the parents get some family coaching and parenting courses that you can take to help you. But it also assists the child in things like speech, language, occupational, physical, and all sorts of evaluations that are necessary, including free hearing tests.

Lia: Now, once your child ages out of that program, where they essentially turn four, they move on to special education services through the school district as well. These are also free services. And they’re a little bit different from early intervention. So early intervention will address your child’s overall development. But special education focuses more on providing your child with education with accommodations for their disability. This is where you would go ahead and get that IEP or Individualized Education Program. Like the IFSP, the IEP will also describe your child’s strengths and weaknesses and help set goals and objectives. But it’s a little bit different in the sense that it’s going to be related entirely to your child’s needs and how those needs will be met within the context of school specifically, and within the school walls. So the IFSP, as I mentioned, is more of a family plan. And it’s more about how we can help your child in a family setting or in an at-home setting. The IEP switches that over to a school setting and only provides those supports for the school and doesn’t really provide any more of that parent support system. It’s really more child-focused. So your child may be entitled to these resources, they should be entitled to these resources, but it really varies state by state and school district by school district because not every school gets funded the same way. So schools with more funding tend to have more resources available. And schools with less funding that might be in more rural or suburban areas tend to not have as many resources available. So this might be something that you want to consider when you’re looking into a school district. If you’re moving anywhere, you might want to consider what the funding situation is like for that school.

Matt: Now, Lia talked about the funding on a district level through the school districts, but there’s also funding on a state and federal level as well and this is through Medicaid. So Medicaid provides long-term services and support based on a wide array of services that they offer. Basically, it’s government health insurance for children and adults and it helps with various disability services. Linked with Medicaid is also the home and community-based services which is also referred to as the waiver or the Autism Waiver. Now, this is much more flexible than Medicaid. This alternative service also works for the family of the individuals as well because it allows the care to actually come into the home and doesn’t force the child or individual into a facility when services can be provided at the home or adjustments can be made to the residents as well. People are able to use a service if they don’t qualify for Medicaid. Acting within Medicaid is also the Department of Developmental Disabilities. Now, this is the facilitating branch of Medicaid in many states, so it differs state by state. So you’ll want to look into making sure what qualifies for your state. And as previously mentioned, it’s closely linked to Medicaid. It provides resources that are ultimately approved by Medicaid through this department. It also supports employment services for disabled individuals.

Matt: In addition to Medicaid, you also have the Social Security Administration. Now SSA can be broken down into two groups and the first group would be the Supplemental Security Income. Now, this is a monthly payment for people with disabilities, which is also income-based. Now for this program, this is if your child is under the age of 18 and is currently not working. So what they do is they calculate the income and resources for all members living within the family of that child who has been diagnosed. Now the classified income is any money that is made. This could be through work. It’s also other resources such as social security, or any type of gifts that are received. If you receive any free supports, any type of food or shelter it is ultimately taken into consideration and they also look at the resources that the family receives as a whole, all living members in the family. Now, these resources would be bank accounts or stocks, cash, vehicles, or any type of monetary item that could be sold off as a liquid asset and they also look at any type of liquid cash over $2,000. In addition to SSI, there is also the Social Security Disability Insurance or SSDI. Now SSDI is if your child is over the age of 18. The SSDI provides income supplements for dependent autistic adults, this would be for disabled adult children. Now the important thing for the SSDI is that the adult child has to be diagnosed prior to adulthood. Since this is federal it is operational across all 50 states and the child would be eligible if the parents had paid into Social Security.

Lia: Now there are other programs that you might be able to find in your local area, things like the Head Start program. This is something that is run by the United States Department of Health and Human Services and it provides a comprehensive early childhood education. It’s usually available to those who do have developmental disorders and things like that. That’s why it’s called Head Start, it’s kind of to help situate your child and get them the headstart that they need to get them ready for school. So it’s essentially a school readiness program for those that are going to probably go in special education or need some sort of assistance. And it also helps with parent involvement services for low-income families. There are also some other perks to consider, things like having priority in public transit systems. A lot of times they have a disability department where you can go ahead and get that sort of priority seating or sometimes they have discounted tickets. And so that’s another service that you should look into if you are more in a metropolitan area. If you are also on the low-income side, there are also housing assistance programs if you have a child with disabilities. So I would definitely look into your housing assistance program and take a look at what services they may be able to offer you and your child due to the fact that they are disabled. Now again, depending on a state by state, county by county, there may be other programs available to you, I know where we are currently at, there’s something called Low-Intensity Support Services or LISS funds. This is essentially like a grant that’s provided to disabled children, it’s usually within $1,000 to $2,000. And it helps eligible children, they have things purchased for them that they may need, for example, an iPad for a communication device, or if you need something like a sensory swing, or one of those compression vests, really important items that you may not be able to afford otherwise; the LISS program will provide you funds in order for you to be able to afford those things. So I would recommend you look into your specific state and see if they have anything like that. Usually, it’s something you would find under the health department for your state. So for our state, it’s usually just like health .“your state”.gov. So if you live in DC, it’s probably health.dc.gov or something like that. So I would just take a look and worst-case scenario, just type it in Google and see what comes up.

Lia: Also, if you’re just looking for general resources in your state, all of that falls under the Developmental Disabilities Administration. So that website, for example, would be a subcategory of it. So that’s just DDA.health.‘yourstate’.gov. So I know they’re long URLs, but again, just Google it and they will let you know what’s available in your state in general. Now, just as a word of caution, I do want to let you guys know, because most of these programs are government-funded, they typically take quite a while. So for example, the LISS funds in our state, we apply basically mid-year, and it takes about a full six months — if you’re selected — to receive the items that they have ordered for you. It may take longer or shorter depending if there’s any sort of like hitch in the system, which does happen because again, it is government-run, which usually means it runs pretty slow. So if you are going to be applying for any of these services, whether it’s Medicaid or SSI, or LISS or anything like that, just be prepared that it’s typically a very long process. I know for some of the services like Medicaid, those things take at least a year, if not longer to get that approved. And also, please take into consideration that most people get rejected the first time around. I’ve heard a lot of people who have gone to apply for these services, and they have had to apply 2, 3, 4, 5 times before they finally get approved. So you may need to be persistent in your application process. And just don’t let yourself get down if you don’t get selected. Just keep applying, make sure all your paperwork is good, make sure all your ducks are in a row, and just keep doing it — be persistent. And hopefully, ultimately you will get those support services.

Lia: In addition to that, I also thought it would be important to know we discussed a little bit about the Autism Waiver. So the specifics of the Autism Waiver do vary state by state. But again, because it is a government-funded product, this means that the waitlist for those services is also incredibly long. So whereas some of these services may only take one or two years, that may seem long, but I’m telling you the Autism Waivers tend to be much longer than that. The averages that I’ve seen from state to state are anywhere between 8 to 12 years long. So I would essentially just put your kid on that list as soon as they are diagnosed and hope for the best. But there really is no guarantee. So I wouldn’t really plan on the Autism Waiver, I would just do it just in case, for the hope they might get that. But just be realistic about it. It’s quite a long waitlist.

Matt: Another thing to consider is your health insurance coverage. I would call them up on the phone and get an idea of what is being offered through your current plan. So generally health insurance will cover speech therapy, occupational therapy and physical therapy. However, they do have a set limit or a cap for the number of sessions that they’re allowed to authorize. So what you would want to do is call up your health insurance company and see if they offer what is called habilitative therapy, which would provide your child with uncapped therapy sessions.

Lia: So habilitative services are something to definitely take into consideration, I know that it personally affected us and our ability to give our child the different therapies that she needed. So our kids both needed occupational and speech, and one of them also needed physical therapy. And initially, we had our child going into physical therapy weekly for a couple of months. But we quickly burned through a 12, I believe it was a 12 appointment limit from our health insurance. And for some reason, that one did not qualify, because I guess the physical disability portion of autism somehow doesn’t count, I don’t know, at least for our insurance, it didn’t count. So we were not able to get her qualified for habilitative for that. However, with occupational and speech therapy, we were able to get qualified as habilitative. And so she has an unlimited number for those services. So we have had no problem with those. So again, I would stress, take a look specifically at your health insurance policies, if you do have health insurance, the easiest thing is just to call someone up and talk to them and they will typically walk you through everything you qualify for. The other thing that we ended up doing that really helped us out was honestly figuring out a budget and lifestyle adjustments in order to be able to go ahead and make some of these co-pays. I know that oftentimes that’s pretty difficult for people to do but I think in many cases, it’s actually possible to do.

Matt: Right, I think your number one goal should basically be to make a budget and try your best to stay out of debt and not go into that route. For us, we had to calculate with our insurance, how much we’re paying for co-pays, and how expensive each week would be for the various therapies that we’d have to go through.

Lia: Yeah, and I know, it’s totally realistic that sometimes you just simply won’t be able to afford some of these therapies, sometimes you just got to make the difficult decision to cut things out, rather than put yourself in a lot of debt by taking out a loan. So what we ended up having to do is put together a list of what all of our children’s difficulties were and prioritize them. So we spoke with our therapists. It’s something that you want to do closely with those therapists because they have a lot of insight on where your child is at that point in time and where their strengths and weaknesses are. So we essentially put together a list of all the therapies our kids were going through, and we prioritize them, which of these therapies absolutely is necessary, and they absolutely need to go because they would suffer the consequences if they didn’t versus which of these therapies are nicer to have, but not essential because she’s doing pretty okay in that general area. So for us, that area was physical therapy; we had seen a lot of progress in our child and although she would have still benefited from continuing physical therapy, we worked really closely with our great physical therapist, and she was able to give us some recommendations on things we could do at home that would essentially do the same thing without having to bring her to physical therapy. So for example, we purchased a bounce house to help her work on her jumping skills because she was delayed in that area. So there are different things like that, that you can do to accommodate that and make up for the lack of that therapy, and still be very cautious about your spending on the therapies. But again, I would advise against taking out any sort of loans because those things tend to get really difficult to pay back, and it just kind of snowballs into a financial mishap. So we just budget what we need to do as best as possible. And if there are no grants or anything else that can help us fund it, we ultimately just try to trim the fat wherever we can, and just get our kids prioritizations on their absolute essential needs.

Matt: Another option is for the families out there, if you do have a two-income household, both you and your spouse could potentially both pick up insurance plans, and then you would have double coverage which would ultimately help with the therapies and extend your current cap of how long you’re able to go for your therapies. For our physical therapy, I believe it was 12 sessions per insurance. And I think using both of them, we were able to extend it a little bit further. But it definitely helps. I mean, anything you can do to try and push it a little bit further trying to get a little bit more therapy, a little bit more service, you might be paying a little bit more obviously for two insurances rather than trying to have one cover the entire family, but it is another option if that is possible for your family.

Lia: Yeah, that’s definitely something I would consider. Because I know for us, we initially only had one insurance through my employment. But then we took a look at the bills that were coming in and we decided that it actually would be worth it to pay a little more a month for dual insurance in order to be able to cover more of these therapy sessions. So if you are a dual-income home, that would be a great recommendation for you. Now for those of you who are maybe in a single income household, or maybe you’re a single parent, and you only have one income because of that, or if you have government assistance, those are the things you may want to start looking into in terms of government financial assistance programs and things that we’ve mentioned earlier like the waivers, SSI, all those options that we mentioned in this episode that would probably help you out the most. And another thing you might want to consider is just to do a little bit of Googling, there’s a lot of random little programs out there that aren’t really advertised well. There are things like Autism Escapes, that’s a program that helps arrange air travel for families in need of medical care for their children. There are things like Danny’s Wish iPads for autism, which is a program where there’s a lottery to win an iPad for your child for things like the adaptive communication system. There are other programs like that all over the internet that you can look for, a lot of iPad for kids programs, and other services that provide you specific items that your child may or may not need. This may require a little bit of Googling, I would look into autism charities, autism grants, maybe something like autism Family Grant, Google those key phrases and see what comes up in your area. Because there’s a lot of things that are available, including scholarships for education, scholarships for going to summer camps, tutoring, those sorts of resources. There’s a lot of things available, but they do require a little bit of digging.

Matt: We actually run a small charity initiative as well. This podcast is sponsored by Autism Wish, which ultimately grants autistic children with sensory and therapeutic items.

Lia: We are a service that connects sponsors with children and the sponsors, we refer to them as heroes, essentially grant items off of the child’s Amazon wishlist. So these items need to be therapeutic, sensory, or special interest based, and it’s kind of an ongoing thing that we’ve been working on. If you want more information on that, just go to www.autismwish.org. Or you can follow us on Facebook at facebook.com/AutismWish [sic] and instagram.com/autismwish, youtube.com/@autismwish].

Matt: Now, we’ve gone through a lot of different programs here today. And I really encourage you to look into each of these and see which would be the best fit for you and for your child. I also want to stress the importance of getting your finances in order before you take action — most importantly, because it also results in your family’s mental health.

Lia: To elaborate on that, mental health is really important here. And as we mentioned earlier, in this podcast episode, finances are tied heavily into the mental health impact on families with autistic children and adults. So we just want you to get ahead of that curve and just think about that when you’re dealing with the financial situation. And just make sure that you try to take all these resources that we provide, and really look into them. Go to these websites, take a look at what your specific state provides. Take a look at what your local community provides and really read closely and get up to date with everything that’s available and offered to you because this is just very generic, overarching, but there are probably more specific available resources for you. And if you feel like you’re stuck, just reach out to a local social worker, they tend to have a lot of information on these sorts of financial support systems. They will be your go-to person if you have any questions or you want to continue to look and see if there’s any specific stuff in your community that we haven’t mentioned here, the social worker would be the best person for that. So I would encourage you to reach out and speak with them. Usually, you can get connected to one through your public school system or perhaps even through the person that diagnosed your child.

Matt: Well, that’s all for today, we hope that we were able to provide some financial resources for you to get your point in the right direction.

Outro:
Lia: To recap, in this episode, we discussed both state and federal funding to include things such as Medicaid, SSI, SSI, SSDI, and other opportunities for financial support. Thanks for listening to Embracing Autism. Join us next time as we discuss how to navigate the world of autism therapies and answer questions such as ‘What are common therapies for autism spectrum disorder?’ ‘What do I do if my child hates therapy?’ And ‘how do I fit therapy into my busy schedule?’ Tune in next time to Embracing Autism.

References:
IEP: Guide to the Individualized Education Program
What is an IEP?
Writing the IFSP for Your Child
Individualized Family Service Plan (IFSP) – PACER Center
What is an IFSP?
Individuals with Disabilities Education Act (IDEA)
IDEA – NCLD
Free Appropriate Public Education (FAPE)
Medicaid.gov: the official U.S. government site for Medicare | Medicaid
Adult Autism Waiver (AAW)
Department of Developmental Disabilities
Social Security Administration | USAGov
Supplemental Security Income
Welcome to Benefits.gov | Benefits.gov
Office of Head Start (OHS)
Welcome to Benefits.gov | Benefits.gov
Vouchers for People with Disabilities – HUD | HUD.gov
Low Intensity Support Services (LISS)
State Health Departments | USAGov
Regional Offices​ – The DDA
State Agencies I/DD
Autism Escapes (Travel)
Danny’s Wish (iPads for Autism)
AutismWish – Granting Wishes to Children on the Spectrum & Providing Parent Resources
What is “Early Intervention” and is my child eligible?

Weathering the Storm
Show Notes for Embracing Autism Podcast — Ep. 104

Intro:
Lia: In this episode, we focus on why it’s okay and even natural to go through a season of grief after an autism diagnosis and how to overcome it with a simple change in perspective.

Lia: Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice and support while spreading awareness and acceptance of Autism Spectrum Disorder.

Lia: I’m Lia!

Matt: And I’m Matt!

Lia: And each week we will discuss our journey with autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources and sharing our personal stories. This is —

Lia & Matt: Embracing Autism!

Discussion
Lia: In our last episode, we discuss the details of diagnosis day. So I assume if you’re listening to this episode, your child probably received a diagnosis of Autism Spectrum Disorder. If you just received this diagnosis, you undoubtedly are probably struggling with an entire barrage of emotions. I know that I personally felt really overwhelmed and confused. Initially, after that diagnosis, a lot of times parents will be hit with questions and start thinking, ‘Did I do something wrong?’ or ‘How could this have happened?’ ‘Is my child going to be okay?’ Or even those who think a little long term and are thinking ‘what’s gonna happen to my kid after I’m gone?’ ‘Is somebody going to be able to take care of them?’ ‘Will they be able to take care of themselves?’ These are questions that are absolutely natural to ask. I personally remember having to ask these questions to myself initially and a lot of other questions like this suddenly rushed my mind. I couldn’t stop thinking and trying to figure out how did this happen? And what does it actually mean? I know that my daughter got her diagnosis at 20 months old. So there’s a lot of future that I was still not sure about at that time. And it’s definitely something that kind of took me off guard. I also had very little knowledge of autism, I really didn’t know anything about it. So my mind instantly naturally tended to drift towards absolute worst-case scenarios. I started panicking and just feeling a little bit helpless. For my kid, I didn’t really know what I could do or if there was something I needed to do. I simply didn’t know what it meant. Now, I just want you guys to know that if these feelings and emotions and lines of thought seem all too familiar to you, I want you to know that these feelings are absolutely normal, it’s okay to feel confused, frustrated, upset, it’s even okay to feel a little distraught. It’s absolutely natural. And essentially, every parent goes through this. I know when I first learned of my daughter’s diagnosis, I really did go through a grieving process of the future that I had imagined for her. And I felt like that future had suddenly vanished.

Matt: I completely agree Lia, for me, I guess my grieving process was more on the confusion side — ignorance is bliss. I didn’t really know anything about autism; so, therefore, I couldn’t really be worried about autism initially. But then looking back now, I think that I had two thoughts. In my mind, I was worried about fantasy or the future that I had projected onto my daughter and the experiences that I would share with her as her father. And then I wasn’t sure if that was suddenly brought into question where we might not have that future. And then the other thought that I had was any opportunities that I had projected for her success, whether it be her going to college or any academics and such, I wasn’t sure if that was suddenly brought into question as well.

Lia: I know that actually really stood out to me, the education part of it because we are a highly education-focused family. We’re kind of overachievers in that area, it’s kind of the area where we really thrive. And so we had already had plans for our kids to go to these private schools. And we had that all planned out, we were already looking at schools for them. I mean, we even went and physically toured locations. We were like, ‘oh, as soon as they hit kindergarten, we’ve got the school lined up.’ And we were really excited about it, we had already grown emotionally attached to these schools. So once we found out that our child was autistic, and later on that our second child was also autistic, that kind of dashed those dreams. And so we kind of felt a little bit of a loss there. Looking back, it is a little bit silly. But it’s really easy to get attached to ideas, and the family fantasy that you get, especially as new parents, because this was our first child. So we didn’t really know what to expect. And we still had that new parent rush. So we always were kind of like nesting but projected out into the future, where we’re trying to get everything situated and in place for them way in advance. And because we did that, we didn’t take into consideration any sort of wrench that could have been thrown in there. So this was essentially a wrench that was thrown in. But I don’t mean that in a negative light. I just mean it in the sense that it was unexpected. And we had to basically find a way to just redirect ourselves and come up with a new plan.

Matt: Yeah. As I mentioned, I had a delayed reaction as far as the diagnosis because I didn’t know anything about autism, I didn’t know what that meant. But with her developmental delays, if she was lagging behind in certain areas, or how that would equate to her moving forward in the future, I think it hit me later than I think it initially hit you, mostly because I was looking at her and how she was progressing. And I think it was the combination of the therapies mixed with her really struggling with getting speech, or her language developed, I think it was one of the speech therapy appointments, where they mentioned that she should know 200 words at that point, and she may be new 20. So it was just a drastic change of where her development should be and where she was actually at. I also think another thing that kind of hit home was just kind of her rigid behavior. She didn’t really acknowledge, I guess me as, like her actual Father. I guess I want to almost blame Facebook or social media a little bit on this one because I would have friends who are also at the same stage of life having children who are roughly the same age, and I would see them interacting with their child and the child at about the same age recognizing, ‘Oh, that’s my dad, my daddy’, and they would come running to them. And my oldest daughter didn’t have that reaction, when she saw me walk through the door, her first reaction wasn’t to come and run to me, it was — she didn’t even notice that the door was opening. And then I was walking in, there was no reaction of excitement, or just noticing that I was even there.

Lia: I can absolutely relate to that. Because one of the things that I also did, and I agree social media is the bane of my existence, is see other people who had children around the same age. So I had had that child, our first child, at the same time that about three or so of my friends had a baby the same exact time, all girls just like mine. And you can’t help but compare, because they’re all posting pictures and videos. And then I started realizing how delayed our child was at that point, I remember one of the moments that I had was seeing the picture of one of my friends’ kids, helping them bring groceries to the car. So she was probably close to two or so. And she had those plastic bags in each hand. I’m sure it was something really light in them. But she was just holding them and helping bring them to the car. And I thought that was super cute. And then I paused for a second. And then it was kind of cathartic thinking, you know, I don’t know that my child will be able to do that. I know that at that time, she definitely couldn’t. Right now, she still probably can’t. But at that time, it was kind of a realization of the reality is starting to hit home and started to sink in a little deeper. And that really made it a little more difficult to process. I think, had we not had Facebook, had we not had comparisons out there, I don’t think I would have noticed as much or even really had it, I guess influence me as much because it really hurt most when I saw potential. So I saw the potential of what she could have done or where she should have then. And though when I saw that she wasn’t meeting those milestones, that was kind of like a reality check hitting home. So I know that for me that the social media aspect was definitely not fun. I started looking at it from a slightly different perspective, because like I said, I come from a neurodiverse background. And I never viewed myself as having any sort of tragic end or anything like that I didn’t really see myself as incapable or less than. So I started kind of reflecting on my situation and how far I’ve been able to accommodate and essentially overcoming my life. And although I went through struggles, I overcame them. And I still made something out of myself. And obviously, I have a family and awesome kids. So that clearly never stopped that from happening. And so that gave me the energy to essentially start rethinking everything. And really, I like to just switch into thinking about the positive and what my child can do and what they’re capable of, instead of focusing on the things that she lacks or can’t do, or is not up to speed with her peers. I know that specifically for me, the one thing I did to really make that switch happen is I started judging her outcomes and achievements based off of herself. So instead of saying, Oh no, my kid is behind in whatever a typical person her age would be doing. I would go into her therapies and appointments saying, ‘Oh, look at this thing that she just did that she was delayed in two weeks ago and now she’s doing’. So for example, if she wasn’t able to say papa or mama or something like that, I didn’t see it as she’s behind her peers in this. I saw it more as the following week when she did — ‘oh my gosh, huge breakthrough, look at this. She’s constantly progressing. She’s constantly achieving.’ So I realized that it was more of a mental journey, kind of like a psychological-emotional journey that you need to go through to get over to the other side of that emotional slump. Pessimism really is what it is, it’s a pessimistic viewpoint to think that because my child has this diagnosis, it’s the end of their world or its worst-case scenario. I do understand that they are definitely degrees of disability. And the future outcome for each child can vary greatly from child to child. So there are some kids who have supposedly a brighter outlook than others. Really, I still think that’s all a matter of perspective. I know, for example, one of the things that I was thinking about with our child initially was, you know, this just means that we’ll get to spend more time with her if she needs our assistance. I’m all about having a mama’s girl. So I kind of see that as a positive that she’ll be around asking for mom’s help more often, I didn’t really see that as a negative, so I just kind of tried to give it a positive spin.

Matt: Well, let’s be honest here, our oldest is totally a daddy’s girl. So I’m not sure what you’re talking about there. So no, I think you raise a great point. And I kind of think of it almost as the therapist mindset and kind of having her compared to herself, and basically focus on her own achievements. So rather than saying, oh, Little Timmy is able to do all these fantastic things at his age, I don’t really care about Little Timmy, he’s not my kid. So I can just focus on my daughter. So in therapy, she was actually falling every time she would walk onto a mat or anytime she would have a transition from an unbalanced surface. And then as we kept working with her, she got a little bit better and a little bit better. She still, I mean falls down, but, but she’s definitely improving a great deal. And same thing with small things just as giving us a little bit more eye contact from time to time, or when we call her name, she acknowledges that we’re talking to her. And we’re not just saying random words. So I think that kind of ties into you ultimately have to celebrate the small victories in life. Focus on the small achievements that they’re overcoming, regardless of how small, celebrate them make a big deal. And your child will be excited too if you give them hugs and kisses or tickle them or make a big deal when they give eye contact, they’re hopefully more likely to do it in the future. I think another good approach to moving forward is not necessarily to think about the future opportunities as lost that we project for our children. But just think of them as slightly changed, she still has a bright future, no one’s taking her future away from her, it just might not be the one that we had initially planned for her. It’s just her own path or journey that she’ll walk.

Lia: The other thing that I started thinking about is, you know, realistically, our child was going to be autistic whether or not she got a diagnosis. It doesn’t make a difference that she has a label, she’s still going to be who she is. And she’s still going to like what she likes, and she’s still going to dislike what she dislikes. So having that diagnosis didn’t really change that. And it took a second to come to that conclusion in that realization that, you know, yes, she was diagnosed, but it doesn’t really change what her outcome would have truly been. Her outcome in life would have been probably about the same if not better now. Because with the diagnosis, we can now implement better support systems for her, we can have a better understanding of this. And that means that we can be emotionally supportive of her throughout her life as well. So I had that change of heart. And that change of perspective, when I realized, you know, she’s going to blaze a trail forward, and it’s just going to be a different trail than we thought, but it’s still going to be a trail. And a trail doesn’t have to be a billion yards long. It could be a couple of inches here or there. It’s still a trail and it’s her trail darnit. Just enjoy it and appreciate the fact that she has this thing that is unique and is her and enjoy every moment and just really embrace the fact that she is who she is and don’t try to change her. So I really had that change of perspective. And then when we had our second child diagnosed, it was completely different. I didn’t feel like I had to go through that entire grieving process that I went through the first time — my perspective had already changed. So the second one, it was kind of like, ‘yeah, okay, we got this’. And we already have made adjustments to our life. We’ve made adjustments to future plans, where we’re going to live, what school we’re going to go to, we’ve already readjusted all of that. And at first, it was hard letting it go. But the realization was that the hard part was just letting it go, it wasn’t actually doing it. So them going to another school or them being homeschooled, that’s not the hard part, the hard part was just coming to the conclusion that what I wanted wasn’t gonna happen. So it’s really all just honestly, all in our heads. It’s just a matter of really embracing that difference and embracing a new way of doing things, even though it might initially be uncomfortable. Or it might initially be just kind of something we want to begrudgingly do, I would just urge you to do it for the sake of your kid. With that said, I completely understand that a grieving process is part of this. It’s really absolutely natural like I said before, and it’s honestly necessary for some people. If you’re not the type of person who feels like they need to grieve, that’s great. But I know for me, I did need to go through a grieving process. And I don’t think there’s absolutely anything wrong with that. It’s just how we learn. I know that when I first learned about my daughter’s diagnosis, that process of having that future taken away from me, it really felt difficult to process. It was something that I thought I had experienced the loss, but it turned out, it wasn’t a loss, it was just again, like I mentioned a change of perspective. I ran into a lot of people that were actually mocking grieving, I know that there’s people out there saying, ‘you know, if you’re grieving, that means that you’re so focused on yourself, and you don’t care about your child, it’s really all about you.’ But I don’t think that’s the case at all, I think the grieving happens because you care for your child. So I think that if you go through a grieving process, it’s really a cathartic, really natural and even necessary process to go through in order to be the best parent that you can be for your child. I had run into a really interesting article from the University of Washington Counseling Center. And it had said that grieving loss is important because it allows you to free up energy that’s bound to the lost person, object or experience. And then they further said that we might reinvest the energy elsewhere if we’re able to go through that grieving process. But if that we don’t grieve effectively, we’re not going to be able to reinvest that energy. They basically say that that energy gets tied to the past. So if you don’t grieve effectively, you’re essentially holding on to that idea; you’re holding on to the emotions and the processing that’s going on in your mind, or you’re not giving yourself the proper outlet to really get that out of your system and just process it all in a healthy effective way. So go ahead and grieve, and just have that moment and give yourself some time, give yourself a break to process a however long or short, as long as it is grieving, and you know, not turning into a depression. If that’s the case, that’s an unhealthy process. And I would urge you to seek some counseling if you do feel that you fall into depression. But if it’s just grieving, that means that it’s a season of time that happens fresh after learning this. And then you learn from that you move on, you pull up your sleeves, and then you start doing the hard, but really rewarding work that it is to parent a child that’s on the autism spectrum.

Matt: I know for me that I found during this experience that the best way to kind of move forward was actually finding a social support group of some kind. I think, for me, it was taking a spiritual approach. And Lia actually brought this home to me and focusing on religion. Lia had mentioned early on during this journey that the soul of our daughter could have been put into any other child in any other family and they might have not had the same resources that we have, but by our daughter’s soul being put into her and having us as parents, it has given her the best opportunity to get the treatment that therapies, the love, and support that she needs to move forward. There are other social support groups that are available. Lia hosts a Parenting Autism Virtual Club that meets virtually once a month. And the link will be added to the notes of the podcast. There are other resources that are available through your local public school system.

Lia: Yeah, I actually do host a monthly online virtual parenting club. It’s on Facebook. And we will put the link to that in the podcast notes. We meet once a month on Google Hangouts or some other web conferencing format. And it’s just a bunch of parents video chatting with other parents and we talk about our struggles. We talk about our accomplishments, and we give each other advice and support and just hang out. There’s also other resources that you can seek out in your local community. I know that in my local community, I was able to dig up some parent groups that were available through the local public school system and I was also able to find other parents who would meet locally and I took advantage to have as many of those as possible. This completely varies from county to county, state to state. So it’s really town-specific. So just take a look at your local community, get involved in the school, ask maybe that social service worker, she may know of any or he may know of any resources that you have that are local to you. And if your county has something like a Parks and Recreation magazine, or something like that, I know that I found a ton of awesome resources in there for activities that are specifically for the special needs community. So I would definitely take a look at all of that and just try to get yourself involved in a social network so you can feel connected to other parents and not feel so isolated and alone in the process. Because I know that parenting a special needs child can be very isolating. And it’s important to make sure that you don’t fall into that.

Matt: My final tip is to educate yourself as best you can on autism. Anxiety is fueled by fear of the unknown. So if you can learn more about autism, there’s less unknown and therefore you’re better off for the future because knowledge is power. The best way to do this I would recommend is to try and seek out any autistic adults. This can be through Facebook or other social media and just talk to them just trying to get their perspective on how they see the world. And this will help you in the long run because then you’ll have a better idea of helping your child in the future.

Lia: Another great and easy way to get educated is to start picking up some books on autism, specifically books that are written from the autistic perspective, those are the most helpful, one of the most popular ones out there is The Reason I Jump (affiliate link)*. I believe the author is Naoki, I’m not exactly sure how to pronounce the last name, but that’s on Amazon and in any major book-selling store. And that book is told from the perspective of a 13-year-old boy who is autistic. So it’s a really good insight. Another book that I was looking into is the More than Words book (affiliate link)*. We’ll do a little bit more on that in future episodes. But that book is by Fern Sussman, and that book is talking about how to help your autistic child communicate, even if it’s just non-verbally. So if you have a child who struggles with communication, that’s a great book. I would just look into as many books as possible. The best ones are really again, the ones that are written from an autistic perspective, or from researchers who have worked with autistic individuals who have kind of given them the green light as well, there are some of those there as well.

Outro:
Lia: To recap, in this episode, we talked about the importance of allowing yourself to grieve in order to refocus your energy in a healthy way. We also discussed how social support systems such as our parenting autism virtual club can be a great resource. Most importantly, we noted how changing your perspective on autism is critical to your family’s mental health. Thanks for listening to Embracing Autism. Tune in to our next episode where we will offer insights into how to find financial resources and support for your child. We will answer questions such as — ‘Is there government assistance available for autism?’ And ‘Are there resources which offer free support?’ — This is Embracing Autism.

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Resources:
Healthy grieving
Virtual Autism Parent Support Group
More Than Words: A Parents Guide to Building Interaction and Lanuage Skills for Children with Autism Spectrum Disorder (paid link)*
The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism by Naoki (paid link)*

*As an Amazon Associate AutismWish will earn from qualifying purchases.

Conquering D-Day
Show notes for Embracing Autism Podcast — Ep 103

Introduction:
Lia: In this episode, we discuss what to expect at your child’s autism evaluation and compare the benefits and disadvantages of an in-person evaluation versus a tele-health or virtual assessment.

Lia: Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice and support while spreading awareness and acceptance of Autism Spectrum Disorder.

Lia: I’m Lia.

Matt: And I’m Matt!

Lia: And each week we will discuss our journey with autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources and sharing our personal stories.

Lia: This is-

Lia & Matt: Embracing autism!

Discussion:
Matt: If you’re like most parents of autistic children, you probably waited months, if not years, for this very moment, the day that your child finally gets their autism evaluation. And if you haven’t gone through the process before, you’re probably not really sure what to expect. You might feel a little anxious, and just uncertain about the day overall, especially if you’ve had to do evaluations remotely due to COVID-19. So I’m actually gonna have to bow to this conversation a little bit, because unfortunately, I was babysitting our youngest child, and Lia was the only one who actually took part in diagnosis day. So she will be able to give her first-hand accounts of the day. And Lia, you can take it away from there.

Lia: So I first want to talk about the in-clinic in-person evaluation. And this is an evaluation that’s done for toddlers or children; an adult evaluation will look different to this. But for this episode, I’m just going to talk about essentially what you will see for a child or a toddler, in the in-person clinic evaluation, depending upon your location and who you go to, this could be a one-day or two-day evaluation. So typically, it’s a one-day evaluation if you’re just seeing one physician, like a Neuropsychologist or a Developmental Pediatrician, but if you see a team like we did, then you will be seeing approximately anywhere between two to four clinicians or physicians and that makes it longer so it’ll take a two-day time span in order to complete that evaluation. So during this evaluation, you can be expected to be asked a lot of questions. These questions will be basically things about your family’s medical history, as well as your child’s medical history. You might be asked questions about your child’s birth. So you might be asked things like Were there any complications during labor? What was your child’s Apgar score? Did your child have an extended stay at the hospital, things like that, and it’ll be kind of an interview-style questioning line. Once that interview-style questioning is done, though, the physician will then switch to observing your child.

Lia: I will say though, the questioning does take quite a bit of time, a lot of times prior to the meeting, they will have had you fill out a form online or they might give you a paper form that actually took quite a bit of time, it took me probably somewhere between 20 to 30 minutes to complete because it was around 80 to 100 questions when we did that. So essentially, you’ll fill that in. And then those are questions that the physician will go over with you during the appointment. But they will likely also add additional questions to that. Or they may ask for clarification on those questions.

Lia: So once the interview-style questions are completed, then that’s where the fun starts for your kid, then it’ll switch to child observation through play. The physician will put some specific toys in front of your child, or it may be an Occupational Therapist that does this. It might be a Physical Therapist, it just depends on who you’re going to see. But they will put down very specific toys in front of your child and ask them to complete certain tasks. One of those tasks for my child was ‘can you stack the blocks’? So they would put out a couple of blocks in front of her and they would just enthusiastically be like, “Well, can you stack the blocks? Can you stack the blocks?” And then pause and kind of observe her reaction. So they want to see if your child is responding to the question — Are they acknowledging them? Or they’re giving them eye contact, things like that. And so if my child did give them eye contact, they would take a note, if she didn’t, they might take a note on that as well. If they don’t do what they would expect them to do, then they start doing a little bit of prompting. So some of the prompting might be that they tap on the blocks. For example, they might tap on the blocks to see if that gets your child’s attention, they might start stacking the blocks themselves and just see if your child will then join in and try to keep stacking blocks with them. So it’ll just differ between each physician what they may or may not try with your child. But essentially they’re just trying to see if that child is able to understand the instructions, if they’re able to complete the directions, if they’re engaging with them or not.

Lia: There’s a lot of other fun activities that they’ll do. So for example, they will blow bubbles and try to see if your child will ask for more bubbles. So one of the activities that they did is they dip the wand in the bubbles, they’ll blow as your kid is popping the bubbles, playing with the bubbles and then they’ll close the jar and put it down and see if your child will then pick up the bubbles, bring it to them, ask for more bubbles or if they will just turn around and start looking for something else to do or if they get frustrated because they want more bubbles but they’re not able to communicate that they want bubbles. They’re really just trying to see how your child socially perceives getting more bubbles how they communicate it and try to see if they will then respond if they try again. So they’ll then see, “okay, let me try dipping the bubbles again and blow again”, and then see if that child continues to do the same behavior or if they do something different.

Lia: Another activity that they did is to look at pointing. So for example, they might have a star or a picture or something cute on the wall. And they want to see if your child can follow a point. So they might say, “look at the star” and they’ll point to the star. They’ll see if your child is able to follow that point. And if they also look at the star, if it doesn’t work the first time around, then they might try it again. But this time, they’ll move their head and eyes as well, so that their entire body is essentially pointed to the star. So it’ll be like “Susie, look at the star.” And they’ll move their entire body, their eye gaze, their head and their hand to point to the star. They’ll see if your child then reacts with the additional prompt or if the child still doesn’t follow the star. Sometimes children will struggle to find the star, but still find it, sometimes children just don’t engage at all. So they’re going to be observing for that and try to kind of copy down whatever the range of their engagement is to help them with the diagnosis.

Lia: They may also just generally observe your child. So I know for my child, each of my children has different stims that they do, self-stimulatory behavior. And so for example, one of my children really, really likes to spin or she’ll kind of wiggle her fingers. So they’re just generally observing your child for those sorts of behaviors. My other child didn’t do those. But she did do the thing where you kind of look out of the corner of your eyes instead of looking directly at things. So they are going to observe your child to see if they check off any of those types of behaviors from the list. If your child does, they’ll make a note of that. And that’s part of the diagnosis procedure as well.

Lia: They will also be paying attention to your child’s language. So I know with my child during the evaluation, at that time, she was pretty much nonverbal, the only thing she really said at the time was colors to describe items. So if they had a rubber duck, she would just say, “yellow, yellow”, and she would essentially say yellow, but she would just be announcing it out to the room. So she wouldn’t be joining in attention with any of the adults in the room. That’s another thing that they’re going to look at during the evaluation, they’re going to see, does your child actually communicate what he or she is playing with? For example, if they have a toy truck, do they then hold the truck up to the evaluator or to the parent who may or may not be in the room and just ask them, “truck, truck, truck?” Something like that. Or do they just have the truck on them and just play with it or fiddle with it and essentially not even bother to engage with other people in the room, that’s something that they’re going to be observing as well.

Lia: Sometimes they also look into what they consider appropriate play. What a physician will consider appropriate play is, for example — is the child pushing the truck back and forth, or is the child holding the truck upside down and spinning the wheels? If there are other toys in the room, is the child playing with those toys in a way a typical child would or is the child taking those toys and lining them up?Things like that. If there’s anything that essentially is atypical of the child’s behavior compared to the general public, those are things that the physician will essentially observe for and make notes of.

Lia: So this process is pretty self-explanatory, it’s pretty easy. Again, it’s just an interview and observation of your child. Some physicians, if you’re just seeing a single Developmental Pediatrician or Developmental Psychologist, you may be able to get preliminary results at the end of that appointment. This is typical if you’re doing a one-day evaluation. So if you’re just seeing that one physician, then you’ll probably get a preliminary result right then in there. However, the full report is usually not available until two to three weeks later. Now, like I mentioned before, that is just the one-day evaluation with just a physician or Pediatrician/ Neuro Psychologist, if you do the full panel evaluation, as was the case for our children, that will actually include a Developmental Pediatrician or Psychologist, an Occupational Therapist, Speech Therapist and potentially a social worker or some other social support person. Because that evaluation has a little bit more people involved, it will be a little more complex. So for example, in this case, the Occupational Therapist will be the one who is going to be engaging with your child in the play activities. They will be essentially assessing fine motor, gross motor, social and other skills, while your kid is actually just sitting there playing with toys and having fun. Now, as I mentioned before, this type of play will usually include imaginative play assessment. So things like asking your child to have a pretend Tea Party, but they’ll also do things for fine motor skill assessments. So that might include tasks such as coloring or putting coins in a piggy bank things that would essentially require those detailed fine motor skills. They’ll also take a look at certain milestone evaluation tasks. So they’re gonna want to see if your child is reaching age-appropriate milestones. So are your child’s reactions age-appropriate for the task at hand?

Lia: And now as a side note, you’re typically going to be allowed to observe or sit in for these evaluations. In some cases, as well as for me, I was actually able to participate in some of it. So if you see that your child is getting fussy with a therapist and isn’t willing to engage, if you have a nice therapist like I did, they’ll actually just ask you like, “Hey, you can try blowing bubbles with her and see if she’ll do it for you?” So sometimes it’ll be more hands-on but typically, the in-person evaluation is a more hands-off approach for the parent, and it’s more hands on for the therapists and physicians. After this, the results will then be discussed with the rest of the team, which also includes a Speech-Language Pathologist. Now the Speech-Language Pathologist is going to evaluate your child’s ability to communicate both verbally and non verbally as well as their ability to engage socially. So this is the person who’s going to be doing that eye contact task that I mentioned before, they’re the ones that are responsible for asking if a child can follow a point, they might do that pointing to the star on the wall, they might also try to rule out any sort of physical problems that might be a cause for potential language delay. So they might take a quick look and see if your child has any tongue ties or anything physically abnormal with their mouth to see if maybe that’s the reason your child is not talking rather than autism.

Lia: Now, they also play games with their child. So my child with the Speech Pathologist was actually doing a bubble popping game. So the Speech-Language Pathologist would say “Pop, pop!” every time she would pop a bubble, and then would evaluate to see whether or not my child would say the word or she needed prompting to follow the cue or if she just wanted to say it at all. My child was actually pretty nonverbal at the time, so she did not say pop.

Lia: Now, once the team finishes their evaluations, again, they’ll get together to finalize the recommendations, which are going to be sent to you a few days to weeks later, just depending on the facility and team. The best part of teams is that they also include social workers who can actually help you navigate resources for your child. Once you’ve gone and seen the physician and both of the therapists, then you’re typically directed to a social worker or some sort of social contact who will help you with this. Our social worker actually directed us to many community resources. And this included things like support groups, the local infants and toddlers program, free informational meetings and a lot more. The social worker essentially helped kind of tie up any loose ends to any questions that we had left. After all the evaluations were done. All of these things were pretty identical to the virtual evaluation, but with a few little key changes.

Lia: So the telehealth evaluation was pretty similar to the in-person evaluation, I will say they followed essentially the same principles as the in-clinic evaluation. But one of the main differences is that in the telehealth version, you are going to be the one performing all the tasks with your child, while the physician and medical team will essentially observe through the camera. So it can feel a little bit odd at first, but to me personally, the telehealth evaluation was way more comfortable. In telehealth, I was able to complete it in the comfort of my own house. So it was a lot easier for both me and my child. Because my child was already comfortable at home, she had absolutely no idea she was even being assessed because she didn’t have to go to a medical assessment facility. If your child is like mine and has a lot of medical phobias, or who gets really riled up as soon as they just walk into a medical facility or into a standard checkup, then this might be the route for you because again, as I mentioned, my kid had no clue she was being observed.

Lia: And similar to the in-clinic assessment, there can be one single evaluation or a multi-panel assessment with a team. If it’s with the team essentially each appointment will be scheduled separately, but typically close to each other or back to back. And again, that could be a one or two-day assessment. When we did our initial virtual assessment, it was two appointments per day spread out over two days. The second time we did our virtual assessment, though it was just to follow up with the decision and that was just one appointment on one day. So during these assessments, the primary difference is that again, I was directly involved in the tasks. So for example, the physician or the team would ask me to perform a task with my child, and they would just observe to see her reaction. An example I have is I was asked to place a baby doll for my kid and asked her to give the doll a bath. So she was presented with a washcloth, a toy bathtub and the doll. And I also even had a little rubber ducky there for her just for fun. And so while I was giving my child this toy, the team observed my child through the webcam on the computer to see what her reaction is to my request.

Lia: There’s also a lot of small play tasks involved like this throughout the whole session, they will typically give you an email in advance with a list of items that you should have in preparation for the appointment. So they’ll tell you- “Oh have a cause and effect toy”. So that can be like something that pops up or requires your child to do an action before it actually works. They might ask you to have something that involves imaginative play like a tea party set or the baby doll. They will help guide you every step of the way. But ultimately, it’s left up to you to actually play with your child for the evaluation.

Lia: Now also with the in-clinic assessment and the telehealth session, what they had in common was the fact that there is a heavy interview component. So you will still be asked about family medical history, complications during birth, etc. Even if you’re doing the virtual version, I would personally say if you’re the type of person who feels comfortable leading play with your child, the telehealth version is absolutely the way to go. I found it to be much more convenient than having to make the one to two-hour commute to the clinic. And also the best part is that you don’t have to wait in the waiting room with an anxious stressed-out child who gets absolutely riled up whenever they’re in a medical facility. I really enjoyed that. And I also really enjoyed how comfortable she was during the appointment, the less amount of stress I can put on my child the better. So for me personally, virtual is the way to go because she didn’t even have a clue she was being assessed. So personally, I found that I preferred the telehealth version way over the in-clinic version. But it’s all really personal preference. If you’re not comfortable doing hands-on stuff with your kid and you’re really more of an observer type, then the in-person might be better for you because the physicians and therapists will be in charge of that and you can kind of be a fly on the wall.

Lia: So again, to kind of summarize, the evaluations can be brief one to two-hour sessions with a pediatrician or psychologist or could end up being a multi-day event with a team but either way, just expect a very similar pattern of interview-style questions and observation of your child during play activities. Again, if you prefer a hands-off approach, I would recommend that you stick to the in-clinic evaluation. But if you feel comfortable leading play sessions with your child and feel confident to be more hands-on then telehealth is absolutely the way to go.

Lia: Ultimately, I think both of the methods are really equally effective and it’s really more of a personal preference. So just go with your gut and go with whatever makes you and your child most comfortable. There really is no wrong answer here.

Outro:
Lia: To recap, in this episode, we discussed how in-clinic and virtual evaluations are fairly similar with a mix of interview-style questions and observation of your child and both methods are equally valuable. The primary difference being that virtual evaluations require more hands-on approach. Thanks for listening to embracing autism. Tune in to our next episode where we discuss reacting to a diagnosis of autism. Why it’s okay to grieve and how a simple change in perspective can make a world of difference for you and your child.

Lia: See you next time on Embracing Autism.

–
References
Definition of APGAR SCORE

Prepping for D-Day
Show notes for the Embracing Autism Podcast — Ep 102

Introduction
Lia: In this episode, we discuss how to prepare for your child’s autism diagnosis, from where to get your child evaluated, to how to get ahead of the waitlist. We make sure you have everything you need to know before diagnosis day.

Lia: Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice and support, while spreading awareness and acceptance of Autism Spectrum Disorder. I’m Lia!

Matt: And I’m Matt!

Lia: And each week we will discuss our journey with autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources, and sharing our personal stories. This is —

Lia & Matt: Embracing Autism!

Discussion
Lia: So in our last episode, we talked about how to identify potential red flags for autism. Now what we’re going to do is take a look at what to do after you’ve identified those red flags and moving forward from there. One of the first things that we did when we found some red flags in our kids is we started getting involved in the local public school system’s Infants and Toddlers program. That is a program that’s specifically catered to infants and toddlers. So I believe they age out around three for that, but then there are additional programs that the public school system does offer for kids that are older. So we looked into it that route, depending upon the age of your child, you might want to look into those programs that are age-dependent. The other option is just to look into the public school, special education department in general and see what resources they have for you.
Those resources are completely free to our U.S. listeners through the public school system funded by the average taxpayer. So when we went and got our child evaluated by the Infants and Toddlers Program, we went online, did a simple Google search, and were able to find that phone number or email address and contacted them. And then they basically let us know that they would be able to evaluate our child within about two weeks at the time. And once they got evaluated by them, they were able to give us kind of an initial, ‘we think she may have some red flags for autism’. Some of the things that they will evaluate are developmental milestones. So they took a look at her fine motor skills and some of her gross motor skills. They took a look at her speech development, language development, that sort of thing. And then based off of some magical algorithm that they have, that I don’t really understand. They were able to basically make a recommendation and say, okay, yeah, your child is distributing enough flags that we think it’s worth it for you to go forward and try to schedule some sort of appointment with a Developmental Pediatrician.

Matt: Now, the route that you take is actually heavily dependent on your insurance, to tell you the truth. So you’ll need to call up your insurance to see if they will require a referral or if they don’t need a referral. In the case that you need a referral, you would have to make an appointment with your Primary Care pediatrician and they bring you in. And I think this is around the 18-month mark, that they generally check for this type of diagnosis. They would have you fill out a M-CHAT. It’s a kind of a series of questions to see some of the characteristics that are common and indicative of autism. In which case they would refer you to a Developmental Pediatrician. Now, the other route and kind of the shorter route is if your insurance does not require a referral you would just go directly to the Developmental Pediatrician. And that can be completed by just a phone call to a children’s hospital or an autism center, or in some cases, the children’s hospital that has an autism center in it. And that’s kind of first getting started and basically getting you on the waitlist.

Lia: Now, the other thing to consider is that this is specifically if we’re talking about a younger child. So that was the case with our child because our children were both under two. If you have an older child, again, as we mentioned in the last episode, you may want to go the Neuropsychologist route rather than the Developmental Pediatrician route. A Neuropsychologist can basically go from childhood through adulthood. So there are a couple of different professionals that you can take a look at to get that diagnosis. Now, after you have gotten the referral, if you needed one, or if you didn’t need a referral and you’ve decided to move forward with getting an appointment scheduled, there’s a couple of recommendations that we make. My biggest recommendation here is in the process. When you go to apply for an appointment, make sure that you are applying to multiple appointments, particularly if you’re going for the Developmental Pediatrician. And what I mean by this is right now, the standard waitlist in the US for an autism evaluation with a Developmental Pediatrician is about one to two years long. I believe the shortest is usually six months, but the standard is that it is one to two years wait. Now, this is something that a lot of parents don’t expect. So it’s one of the most shocking things that people run into when it comes to an autism evaluation, but there’s a few things that you can do to mitigate that. And one of the things that we did that I highly highly recommend is, again, as I mentioned before, apply to multiple locations. We applied for our child’s evaluation to two different children’s hospitals. If there were more in our area, I would have done more, but that gives you kind of some leverage to be able to get in a little sooner.

Matt: And I would just kind of jump in real quick to this thought is the reason that you would apply to more is just, obviously, if they’re able to clear you in one avenue faster than the other, you would just go with that one and then you could easily cancel the other appointment that’s lagging behind, which is what we did in our case. They were able to get us into one of the autism centers much faster, and we’re easily able to cancel the other appointment that wouldn’t have come up for another six to eight months.

Lia: Right. And to go with that as well, when we first signed her up for an appointment, we weren’t sure if maybe the outcome of that evaluation would be like a borderline result where they weren’t sure if they had autism or not. So we were kind of holding onto it as well. We could get a second opinion just in case we needed a second opinion and you’d already be on that waitlist. So you wouldn’t have to start the waiting process all over again and wait another year. So I would highly recommend that when you’re setting up appointments for your child, you definitely apply to more than one waitlist at more than one location. The other recommendation that we make, and this is kind of like our, our secret weapon of how we got evaluated so quickly. So in our first episode, we essentially were talking about how our child was able to get evaluated within what was it, a month or so?

Matt: It was about two or three.

Lia: Yeah. So we got our child evaluated within two or three months of being put on the waitlist. And at that time we were told that the waitlist was about a year long. Now, the way that we are able to do this is — biggest trick, biggest tip — call them. So what I did is I started calling them weekly, once a week. It may seem like a lot, but it works. Once a week I would call them very politely, not harassing them, just asking them, ‘Hey, did you happen to have any appointment cancellations coming up?’ And the good thing is a lot of people actually do cancel their appointments. When people cancel their appointments, you can basically say, ‘You know what? I can drop everything I’m doing right now and I can be there tomorrow’. I know with our institution, they had a specific policy where there’s a shortlist waiting list. And on that shortlist, they basically would say, ‘are you comfortable with dropping everything you have and going to an appointment the very next day?’ If you are then get on that waitlist and then you would be seen much quicker.

Matt: And I’d like to add in, this kind of goes in line with paying it forward a little bit. If you are able to beat the list and get in much sooner than expected, please call ahead and cancel whatever appointment you had so another individual who is going through the same process, but a couple of months behind you, may be able to get in earlier for theirs as well. Because we had two slots locked for both our institutions and because we were able to get in so fast, we were able to cancel the other appointments in which case another family was able to hopefully get their child diagnosed sooner as well.

Lia: Right, Although I only recommend that for people who have a very obvious diagnosis where it was a clear cut case, that yeah, we’re very confident that your child does or does not have autism. If your child is one of those borderline cases, I would actually recommend that you keep the second diagnosis evaluation and get a second opinion. So that will be dependent upon the outcome of your appointment. But that’s a good point. So essentially once we went ahead and called weekly, I was able to get ahold of somebody who said, ‘yes, this person canceled. Are you willing to come in in the next two days to get this evaluation done?’ I basically said, ‘yes, I’ll drop everything. I’ll do it’. And because of that, we were able to get scheduled. Within just a couple of weeks, we were already scheduled in the books. And then we actually got the evaluation within a couple of months of just being placed on the waitlist.

Matt: Right after Infants and Toddlers came and said we had some red flags, within a couple of months, we were already getting the diagnosis for our daughter. So that was fantastic. If you do have to wait longer, I think there are a number of handful, helpful things that you’re able to do. So you’re not basically just sitting, waiting for the appointment. And I think one of the big things that we both agreed upon that were incredibly helpful for us is the Infants and Toddlers program. We would meet with them, I think on a Bi-monthly schedule. And while you’re on the waitlist, there are additional things that you’re able to do in the meantime. So if your child is under five years old, I think that’s the cutoff, you would look into Infants and Toddlers to get started and to try and lean on for the resources that you would need during that time. If your child is older than five, you’re looking more at the public school system or social workers to get in touch with. So basically what they’re going to do is they’re going to give you the resources, perhaps a parent support group and a therapist that you would meet with and they would help you come up with a plan for your child and get them moving forward even before you have a chance to see the Developmental Pediatrician.

Lia: The other thing that the public school special education system will do is they might offer you some sort of training, parent training resources to help you get educated on autism, or just whatever your child is struggling with if that’s a language delay or something like that. They also provide specific resources from your specific community. So if your specific community has particular grants or if your particular community has a specific club for autism or something like that, that’s something that your social worker and public school education system would probably have access to or information about and they’d be able to give you that information.

Matt: Because our daughter was under three, we were able to use the Infants and Toddlers program. So basically what that is, a real quick overview is we had a speech pathologist who would come to our residents whenever we’d schedule it. Usually, it was about twice a month and she was able to provide us with resources, a parent support group, and additional therapists, such as Occupational Therapist and a Physical Therapist as we requested. And they were able to provide additional supports for our daughter at that time.

Lia: Okay. So we covered everything that you need to know about diagnosis day, but there’s a couple of tips that we’ve got in terms of preparation. One of the things that I highly recommend you do is put a list together of your observations of your child’s behavior and anything that you’ve noticed that has kind of raised your suspicions, all those things that you’ve observed your child do or say that has kind of put the thought of autism in your mind, make sure you know as many specific examples as possible because these will be used in the interview portion to assess for potential autism. I can remember, for example, my kid would get hurt because of some of the stimulatory behaviors that she would have. So if you have anything like that, just try to write down as much as you could possibly remember, and be as specific as possible so that you can bring it to the appointment. That will help you with the interview portion of the diagnosis day because they will ask you questions about specific incidents.

Matt: And I thought another important element that we focused on was also having a support person there with you. So this actually works on two different levels — a practical level and also an emotional level. So our daughter was kind of a runner, and actually still is, where she would get into trouble, not really knowing where her surroundings are. So with having an extra set of hands, it can alleviate some of the stress on that day. They’re also able to manage some of the smaller things. So I would definitely recommend not going to the appointment alone. I would definitely bring someone just to help you out with carrying things, getting to where you’re going, changing diapers, any of the practical things that you kind of run into along the day. And then the other area is the emotional element for that day. So you might be having a lot of mixed emotions, not really sure what to expect with the appointments that you’re going to have that day. You might have a little bit of anxiety and it just helps to have another person that is going through a similar situation with you to be able to bounce ideas off of, just talk through your emotions and kind of come to terms a little bit with what you’re feeling and where some of these feelings are coming from.

Lia: Everybody deals with this in a different way. So some people will be leaning more towards needing that emotional support. Some people may not need that emotional support as much. I know for me personally, I’m very much so in the emotional support arena and I’m the type of person that if I’m going to be going to a heavy appointment, I need somebody else to drive me home because I’m going to be processing everything in my mind and I’m not going to be paying attention to the road. So really just gauge yourself and how comfortable you are with these sorts of things and how you personally handle this stuff. And if you need that, go for it. If you don’t, then you can skip out on that. But that’s just a personal recommendation from us and what we found that we needed at that time.
The other thing that I would highly recommend is to kind of help ease with that anxiety of the unknown is just something as simple as doing something fun the night before. Take your kid and play some fun activity, watch a movie, do something silly, go out for ice cream, like just do something to kind of relax and help you prepare emotionally. Because like I said before, it is very normal for this to be an emotional process for a lot of people. So it’s really just kind of an icebreaker for yourself. Just give yourself a moment to reset and recharge and make sure that you are taking time to relax the night before. Make sure your child is getting a full night’s sleep. Because especially if they’re younger, but even the older kids, they’re going to have to have their attention set on these tasks and activities for a one to potentially two-day evaluation. Our evaluation was a two-day evaluation. That’s a lot of time for a kid to be sitting down, being told to — you know, really it’s just play — but to be told to do something for a consistent amount of time. They need a break and they need a way to relax and they need to have all the energy that they can. So make sure your kid is well rested the night before you’re well-rested, depending upon where you’re having the appointment, I would also highly recommend that you get a hotel.

Matt: It was probably about a two-hour drive to the facility that we were getting evaluated. We live in between the two metropolitan areas and our appointment was on a weekday. So we didn’t want to take the chance of driving, trying to drive up in the morning during rush hour. If there’s an accident, she misses her appointment and we’re back on the waitlist for who knows how long. So yeah, I think for us, the best option was just to get a hotel which allowed our children to sleep in a little bit longer. We didn’t have to wake them up as early and she was better rested for the appointment and had a better day I think overall.

Lia: The other reason I highly recommend booking a hotel is even if you live close to the appointment location if you’re going with a younger child in particular that still takes naps, this is going to completely mess with their schedule so we recommend being close to a hotel where you can take a nap break in between appointments. Because for us at least, we did have breaks between appointments. So there was probably about a one to two-hour break between each appointment. So we utilized that time to go back to the hotel and make sure that our kids had a little bit of a nap, a snack, something like that. If your kids are older, they might just need a sensory break. So they might just need to go to a safe space and just relax for an hour or two between appointments. I would highly recommend considering looking into some sort of hotel or motel, or even if you have a friend who lives in the area, maybe they let you crash at their place for a little bit, but definitely have some sort of base camp that you can go to and touch base.

Matt: At the end of the day, a diagnosis, if your child is autistic or not autistic, doesn’t really change who they are as a person. This basically just gives you a better way to assist them for the future — finding areas that you can strengthen or that they might be struggling in and give them better assistance in the future.

Lia: Right? Adiagnosis is not the end of the world. There are some parents who really struggle with the diagnosis of autism, but it’s just a matter of seeing it as a potential opportunity to open some doors for your child. If your child does receive a diagnosis that opens them to some therapeutic possibilities that weren’t available before, and it’s really kind of a turning point for them in terms of being able to get them the help they need. It really is something that can be overwhelming for parents going through this for the first time who just don’t know what autism is. I just want to basically reiterate having Autism Spectrum Disorder is not this horrendous thing or end of the world scenario, your child is still the same person they were before. Nothing has changed. Just keep that in mind and just remember that child that you had and remember that that’s not going to change. If you get a diagnosis, you’re not walking out the door with something completely different. You’re just walking out the door with information that you can use to utilize and assist your child in a better way. With that, just take a deep breath, relax and rest assured, it’s going to be fine. And we’re going to help you out with that journey as much as we can with future episodes to review.

Outro
Lia: In this episode, we discussed how to shorten your child’s time on the waitlist by calling in weekly for canceled appointments, as well as how to make evaluation date easier for you and your child with snacks, toys, a list of concerns, and a support person.

Lia: Thanks for listening to Embracing Autism tune in to our next episode, where we discuss diagnosis day and answer questions such as what can I expect at the appointment? What will my child be asked to do? And will I leave the appointment with a diagnosis for my child? See you next time on Embracing Autism.

–
References
What is “Early Intervention” and is my child eligible?
M-CHAT – Autism Screening – The Modified Checklist for Autism in Toddlers
Neuropsychologist – Testing for Autism

Demystifying Autism
Show Notes for the Embracing Autism Podcast — Ep 101

Introduction
Lia: In this episode, we’ll go into a deeper dive about what Autism Spectrum Disorder (ASD) means as well as what are some potential red flags you may be seeing in your child.

Lia: Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice and support, while spreading awareness and acceptance of Autism Spectrum Disorder. I’m Lia!

Matt: And I’m Matt!

Lia: This week we’ll discuss our journey with Autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources, and sharing our personal stories. This is-

Lia & Matt: Embracing Autism!

Discussion
Lia: I often hear a lot of people kind of asking what exactly is Autism Spectrum Disorder. I know that I personally didn’t really know much about it when I was first told that our child had Autism Spectrum Disorder. You kind of get a little bit of the cliches from television shows and movies. One of the things that I started looking into was what exactly is Autism Spectrum Disorder. And there seems to be a little bit of a debate because not a lot is known about Autism Spectrum Disorder. So there’s research that’s being done out there; one of the ones that we got involved in was the Spark Clinic. So they’re doing a lot of genetic testing, but there isn’t even a consensus on to really whether Autism Spectrum Disorder is considered a mental illness or is just a developmental disorder. So I looked into it from both perspectives and the Mayo Clinic, for example, specifically says that Autism Spectrum Disorder is a condition that’s related to brain development and it specifically is defined by impacting how a person perceives or socializes with other people. So it causes social interaction issues specifically, and then it has issues that are related to communication. So that’s a broad generic definition, but we also saw that the cdc.gov kind of elaborated on that. And we’ll say that essentially people with Autism Spectrum Disorder do communicate, they just communicate, interact, behave, and learn in different ways. So they don’t necessarily communicate in the way that typical people would. And sometimes it’s perceived as non-communication, but there is communication there in the form of body language or other unique ways that we just need to learn to perceive a little better. It’s kind of just boiling down to a neurological condition.

Matt: I’ll just reflect on that. It seems like because things are so new with Autism, we found out that they didn’t even know that females could be Autistic until relatively recently — that they would be diagnosed much later in life than your typical male.

Lia: One of the other things that I noticed when we were going through this process — because both of our children are female and we actually are an unusual statistic in that our children got diagnosed extremely young — and the statistics had said something like the average girl who got diagnosed tends to get diagnosed at either 10 years old or older, but usually more in the teenage years. And then for boys, the average boys were getting diagnosed around seven or eight years old, like half the amount of time it took for the girls to get diagnosed.

Matt: Right. And that’s why I think you mentioned as far as the genetic testing that we’re going through with our institution, one of the pamphlets that we had seen when we had first gotten the diagnosis was that there was very limited research into the families of the autistic community. And that’s why they took an interest that we had two daughters that were very close in age and they wanted to closely monitor for research purposes so they could better learn a little bit more about autism disorder.

Lia: While we’re talking about what Autism Spectrum Disorder is, we also need to talk about what Autism Spectrum Disorder is not. So there’s a lot of common misconceptions out there, and I cannot tell you how many causes I have seen, but the number one cause that people say is associated with Autism Spectrum Disorder is always vaccinations. There’s always the debate of vaccines caused your Autism. But the thing is, there’s been a ton of research that’s out there that has debunked that. So there is no relationship between vaccinations and Autism Spectrum Disorder. So there really is no point in trying to shame parents who have vaccinated their kids.

Matt: Or you get the person who informs you that, ‘oh, your child will just grow out of this phase. This is a temporary thing. Every kid has trouble with transitions or has trouble speaking, right?’ That ‘this is not a big deal. There’s no trouble here and they’ll grow out of it in a few months, a year at most’. Though we have learned that you don’t grow out of Autism — you have Autism.

Lia: You are Autistic and no matter how much growing or learning you do, you don’t suddenly have Autism disappear from your life. Right? So I am not afraid to share — I personally have my own disability. I have ADHD and a couple of other things. And I don’t see why Autism has to be perceived in any different way than the way we perceive other learning disabilities and ADHD, where it’s just accepted as that’s who you are. Right? So I don’t say I have ADHD. And then it’s like — sometimes I do and sometimes I don’t have ADHD. Sometimes it creeps up on me and sometimes it’s just gone. Once you have ADHD, you have ADHD 24/7. It’s just a part of who you are. And all you really do is kind of learn to accommodate your life and have other people help you accommodate your lifestyle to make it functional.

Matt: And it seems like there is a slight negative taboo with the label of Autism. And for us, I realized that once you get through the initial shock of, ‘oh, okay, well, my child is autistic’ — there’s such great development that we’ve noticed just in the last year with our oldest; we’re seeing great improvement in a number of areas. And it doesn’t seem to me that it is the taboo that society has made it out to be. It’s not a boogeyman, and it shouldn’t be the defining characteristic of your child, of who they are. My child loves Blue’s Clues —

Lia: That would be considered definitely a special interest, which I guess we should mention that special interests are part of autism as well. There’s a lot of autistic individuals who will have a unique fixation or something that they really love. And a lot of autistic adults that I have talked to, say there’s a distinct difference between a special interest item and a hobby. People are like ‘oh, they just have a hobby that they really like’. But from what I’ve heard from autistic individuals, they’re like — ‘no, it’s not just a hobby. It’s something that we intensely passionately feel about. And it’s like a part of us and a part of who we are’. That’s slightly different than what you would consider just a hobby. So I’ve always found it really important that if our kid has a special interest — like one of her special interests is rubber ducks, she is obsessed with rubber ducks. So we just encourage it and just like whenver she is feeling down, or she’s getting frustrated, we just get all her rubber ducks that she’s got — like at least 10, 11 or 12 of them — and put them all in a bucket, and give it to her. And she’s one happy, lucky, little girl. Why take that away you know? Even if it’s strange, like a lot of people think it’s strange because autistic individuals will bring their special interest into adulthood. I’ve actually seen this — autistic adults saying ‘I’m embarrassed because people are making fun of me because I bring my Teddy bear with me’, or ‘I like to sleep with a Teddy bear’. And I’m like, who cares what people think? Take that Teddy bear and sleep with it. I personally still love my stuffed animals and I’m in my thirties. So I’m just like, you do you and just let the world figure themselves out and not worry about them and just you do you.

Matt: Well, we also talked a little bit in the last episode about picking your battles. And so for instance, our daughter loves her rubber ducks. And sometimes if we’re doing a transition where we need to go in the car to run an errand, sometimes she will want to bring her rubber ducks and we have a little bucket and we’re like, ‘okay, put the ducks in the bucket and let’s go’. And I guess my thought is, even if she takes that into adulthood, that isn’t a serious concern because my attitude is when I’m in the office, I have Walking Dead zombie figurines on my desk. So, what’s the difference if she has rubber ducks or little different ducks on her desk? Like, it’s something that you’re interested in. That’s just something that makes them happy. No one has treated me differently because I have my little Walking Dead zombies on my desk. It’s just an interest of mine.

Lia: Sometimes people feel ashamed or embarrassed because their child stands out from all the other children. And a lot of times there’s a feeling of ‘my kid’s going to get bullied or my kid’s going to get harassed because they’re doing this weird thing and everyone’s going to be watching. And those kids are going to make fun of him.’ But I just think that’s a completely backward way of approaching it. It makes more sense to be like, ‘oh, look at what my kid just discovered!’

Matt: The thing that we’ve seen is the splinter skill, kind of specialized skill that they are off the charts impressive with.

Lia: Not all autistic kids have that. So there are autistic kids who have the lower IQ issues. And so I do like to consider that as well, because I know it’s not the same situation for everyone, but I do think that in terms of what is Autism Spectrum Disorder, all you really need to know is that it’s a neurological condition. It’s something that typically the research indicates you’re kind of born with. It seems to be mostly genetic. And it also seems to be very different from person to person. So not every autistic person presents the same way. Some people can be really hypersensitive to sound. Other people might flourish under certain sounds. Some people might really have to be very organized and line their things up properly and it might bring them joy. Other people find organization in chaos. So it’s just very different. I know with our kids, for example, one of our kids is super motion seeking. This kid loves to spin and jump and bounce and run. And the other kid is kind of more laid back and more chill. She likes to just sit in her area, organize her toys, line them up in a row.

Matt: And she likes her flashcards.

Lia: Yeah. She likes to have a more structured sort of setting. Whereas our other kid is more rambunctious, but they’re both autistic. They’re just very different kinds of autistic. So I think that’s the other problem is that a lot of times there’s this misconception of autism. It’s this label that I slap on you and it means you need to be treated accordingly to X, Y, and Z plan or I need to make exactly these accommodations for you. And the thing is the accommodations are never universal. You need to custom tailor everything to each individual child. How I approach my child might not be the same way you approach your child just based on their varying degrees of needs and wants.

Matt: One of our daughters isn’t a fan or wasn’t a fan until recently of having water on her. She had a huge water phobia. We had to slowly transition her. Our other, older daughter, she loves water. She loves being in water and we leave her in the bath, just playing with her toys after a bath because she’s just having so much fun. Same thing with the lights. Autistic kids are much more sensitive or perceive light in a different way. And then also, as far as the concept of taste, you might have a picky eater on your hands.

Lia: The light concept itself — so a lot of times there are autistic individuals who are hypersensitive to light. These might be individuals who might prefer to wear sunglasses, or they might prefer to just be in shady areas. And then there are kids, like our kid, who are obsessed with lights. If you give her LEDs, she will sit there and shine them directly on her eyes as long as she can unless you take it away. So it really is like a drastically varied spectrum. And that is why it’s called Autism Spectrum Disorder now and not just Autism because no two autistic people are the same. And to that effect, it really does matter how you treat each individual autistic person because you have to accommodate accordingly. Our two children are completely different cases.

Matt: And that’s why I think we made the naive mistake at first because we were using our oldest daughter as the anchor point of,’ okay, this is what autism is’. And then when we had our youngest, we were like, ‘oh no, she can’t be autistic because she’s nothing like her sister’. And then we had the wake-up call of, ‘okay, she can still be autistic. She’s just on a spectrum’

Lia: Yeah. And then on top of that, the other issue we ran into is once we did find out she was autistic, then we’re like, ‘Okay, we’ve done this before. We can tackle this’. And so we essentially started tackling it and by tackling, I mean, helping her with her language and things like that because she’s non-verbal. We basically started to approach it the same way we did with our first kid trying to expose her to language. But then we realized that was not working at all with our second kid. We basically had to do a completely brand new system for her. And honestly, it’s something we’re still working on with her because she’s still pretty much non-verbal. Whereas with our first kid, everything that we did actually worked and she was able to expand and progress with her language fairly quickly. So it really is a matter of just make sure you have the time and patience for each child if you have more than one autistic child. Make sure that you just custom tailor everything to that child and let your child lead the experience. If they are not enjoying the way you’re teaching them something, then try something new, let them guide you. And don’t ever force your child to do something that they don’t want to do because that’s not going to be conducive to learning. And honestly, you gotta be careful about what you want your child to learn. You want your child to learn to embrace their autism. You don’t want them to learn that autism is this bad, boogeyman thing that they have to basically get rid of. So it’s more about accommodating it rather than trying to change it or remove it.

Matt: Great point that each kid is different. So don’t go in with the same mindset of, ‘this worked for this one. And let me try the exact same thing’. Each kid is a little different. You’re going to need to learn what their strengths are, what their weaknesses are, and then focus on the weaknesses. And hopefully, from there you’ll be able to see some improvement.

Lia: Let’s talk about some red flags that we saw because I know that with each kid, we basically saw two completely different sets of red flags with our first kid. We, we really saw some, honestly the day she was born, but we didn’t realize that they were red flags because she was our first child.

Matt: So I think the first thing was when she was a brand new baby, she never really cried. She would never show that she was hungry or needed a diaper change. We just thought she was the greatest baby in the world. We were like, ‘wow, everyone complains that their baby is crying and ours is as quiet’.

Lia: She would sleep for five hours in a row throughout the day. Remember that? And we would be like, ‘oh, she’s such a good baby.’

Matt: And then even at night, when she was hungry, she wouldn’t cry and wake us up.

Lia: The only way I knew that she was hungry was because she would start viciously sucking her thumbs and her fingers — she never cried. And in retrospect, that’s like a huge red flag. She wasn’t able to communicate her needs and wants in that way. And later, as she got older, that was one of her things when she was hungry or thirsty, she was never able to express to us or even show us that she was okay.

Matt: We actually had worked with infants and toddlers just to get her to the point where she is requesting her needs to us. So if she is hungry, we’re teaching her some type of sign language to show us, ‘oh, I need a snack. I’m hungry.’ Just something.

Lia: We really had the most trouble with her. Because initially when she was really young, she was completely in her own little world. Like she was staring off into space a lot, not responding to her name, avoiding eye contact proactively. She would be very content just being in a corner and isolating. She seemed completely unaware of her surroundings. Like she didn’t really realize if there were people around.

Matt: She didn’t even care.

Lia: Right? She didn’t even care. If you tried to go out of your way to get her attention, she still wouldn’t respond or react. You really had to be like right in her face for her to even realize you were there. So that was one of the biggest red flags that we noticed that something was off.

Matt: Right. And I think the one saving grace moment with her was that she was obsessed with songs and music and nursery rhymes. So we were able to engage with her or get her attention through music. And we were able to slowly kind of work our way to getting her to notice we were there.

Lia: Right. With the other red flags, the things that we noticed were the hand flapping. It took us a while to even realize that she was doing it because there’s a period, a stage that babies go through where arm flapping is actually very normal. It’s very typical and part of their development. So she was always kind of doing it. And I was like, ‘oh, she’s just a happy baby’. But because she was our first child, I didn’t realize that there’s a cutoff point in age where a child is supposed to essentially stop that behavior.

Matt: Yeah, I had no knowledge one way or the other.

Lia: I remember when we did the evaluation, that was on there. And then the thing that really stood out to me too was the fact that she started lining everything up.

Matt: Right. Very OCD, everything in a line regardless. I mean, she wouldn’t play with a toy, but she would line the toy up with another toy.

Lia: Yeah. And it didn’t even matter what the toys were. She lined up water bottles, she lined up ducks. She lined up pretty much everything that she saw, even random things like crayons or whatever. She was just always lining everything up.

Matt: I think of like the truck and a typical kid would push the truck around, making the wheels spin on the ground like a normal truck would move, but with her, it would just be lining the truck up, moving it into a new location, lining it up with the other trucks or cars that she had to play with. So that behavior definitely stood out as something that seemed a little different that I wasn’t used to, or hadn’t encountered before.

Lia: Yeah, and then there were a few other things. She had low muscle tone and she never crawled. So that was something that was a red flag for us too, because when she would try to crawl, she would get kind of in a crawling position but then her legs would kind of just frog-leg out. So they were like spread out and she wasn’t able to get the strength to push her knees up under her and prop herself up into a crawl position. And I remember putting her into that position physically for her and then as soon as I would let go, she would just flop back down. So that was something very unusual to me. And I was a bit concerned. Because that seems like a medical issue to me.

Matt: Right, it seemed like a definitely very delayed and developmental concern. Transportation was basically doing a barrel roll, just rolling, and then trying to reposition and then roll to wherever she was going. And then I think we first noticed that she was starting to walk at around 13 months, but before that it was basically rolling and us carrying her, picking her up. But there wasn’t any other type of movement.

Lia: These were basically a couple of red flags that we saw. Honestly though, there’s a lot of red flags. We could probably go on days and days talking about how many red flags we saw.

Matt: Well, these are all the early signs. I would say these are all probably one year and younger.

Lia: We basically noticed pretty much completely different red flags with our second child. Our second child was more of an active baby. Her red flags were primarily things like spinning, running, jumping, constantly crashing, constantly seeking sensory feedback. She would bring blankets to us, for us to wrap her up in a blanket. She’s non-verbal so she basically just brought us a blanket and I knew what that meant. She also had a lot more of the feeding issues. So our first child had feeding issues as well. She had sensory aversions to certain foods and textures, and it was really limited on her diet. And then our second child has been so limited that she’s actually been restricted, mostly to purees and baby foods, even though she’s going on 20 months old now that’s basically been her primary die. I think with the second child as well, we had issues with severe water aversion. Like she hated water.

Matt: The first one was spitting the water and now this one or second child wouldn’t necessarily have anything to do with it.

Lia: I was working with occupational therapy and it literally took me a month, a full solid month to get her comfortable with taking baths. I had to slowly transition her into the process and now we’re able to get her to take a bath, but it was just such a problem initially with her.

Matt: As an adult or a parent, being able to focus and put yourself in their shoes and see, ‘okay, this is a sensory experience that they’re having’ and from that trying to gauge, ‘okay, so they don’t like when water splashes on them when they accidentally spilled a water bottle on them, and they don’t like how that feels’. And then being able to understand that they might not be a fan of taking a bath just because of the same sensation and experience as well.

Lia: I think also the things that we started to notice were the tiptoeing behaviors with both of the kids. So both of the kids had tiptoeing behaviors. You know, initially tiptoeing is not a big deal. It can become an issue later on because it can cause the tendons to shrink. So some people even require surgical intervention. When we notice that they were constantly tip-toeing that was a huge concern, which honestly I did not know that was a symptom of autism. Initially, I had to basically mention it during one of the therapy sessions and they’re like, ‘yeah, that’s associated with Autism Spectrum Disorder as well’. That’s something that both of them have done and we’ve worked with them. They still honestly do it on occasion, but it was pretty obvious in that first kid. Like she did it all the time, 24/7, and we really had to work with her. With our second kid, it wasn’t as prevalent. It was a little more discrete and because of that, we weren’t quite sure with her either.

Matt: I think another area that we’ve noticed that there have been some red flags with both of our girls would be the meltdowns that they’ve experienced and difficulty transitioning. I’ve noticed that it’s more so with our oldest daughter for the transition period, that whenever she’s either playing or watching TV and we try and change activities, she has a hard time transitioning.

Lia: She’s had a difficult time transitioning from one activity to another activity. For example, taking her on a car ride. If she was playing with her toys in the house and then we have to go to get groceries or something like that and it’s time to pack up and go in the car, she would have a huge meltdown where she would just throw herself on the floor and cry in hysterics. And we would have a hard time getting her to kind of calm down just to be able to bring her to the grocery store.

Matt: And sometimes we have to avoid some of these places in general.

Lia: She just gets sensory overload and she can’t handle the noise, the music, the talking, the movement, the flashing lights, and colors. So sometimes those things would trigger meltdowns. So that was something that we noticed that was happening. But we at the time didn’t know it was due to sensory overload.

Matt: And it’s not just that she will refuse to walk to make you carry her because she’ll fight because she wants to be on the ground. And then she’ll insist on sitting on the ground or lying down on the ground and basically dead weight if you try and move her.

Lia: And a lot of people get tantrums versus meltdowns confused. So I’ve heard people say, ‘you just need to learn how to discipline your child’ or ‘oh, that kid is spoiled’. And that’s another common misconception with autism. When a kid is having a meltdown, it’s not the same thing as a tantrum. And there are ways that you can differentiate between the two. I kind of knew it was getting a little bit extreme when it would just happen out of seemingly nowhere because there didn’t seem to be any specific triggers.

Matt: And it seemed like it was for relatively minor things as well.

Lia: Yeah. Like if her ducks weren’t all in a row.

Matt: Or if her sister was stealing her ducks.

Lia: Right. Oh my gosh, don’t even!

Matt: But it seemed like it was for what I would consider relatively minor things. It would be a huge life-altering meltdown.

Lia: So if you notice that your child is having what appears to be a massive tantrum, pay attention to what’s triggering that tantrum. Just pay attention to see what’s going on to see if it is in fact a tantrum, or if you might be seeing a red flag for autism. If it’s being triggered by something that might be sensory-related; if they are having difficulty with too many loud noises there; if there are too many people over there; their routine has changed and you change the decor in their bedroom, it might just be that your kid is actually having an autism meltdown and it’s not actually a tantrum. So that was one of the things that we had to learn to distinguish.

Matt: Right, I think we had family members come over. It was still a relatively small gathering, but, I think it was just new people in the house that she wasn’t accustomed to. And just the change in environment, people talking, being a little louder than just the two of us.

Lia: She was totally overwhelmed with all the relatives coming over. The noise of the wrapping paper being ripped up and just the movement, the shuffling, everyone laughing and talking. It was just overwhelming for her.

Matt: It wasn’t over the top; ‘cause even you describing it, as far as having family come over, there were only two additional people who had joined in that Christmas.

Lia: To a normal person who is just thinking that they have a typical child it would seem like your child is just overreacting. You’re like, ‘why is she freaking out when we only have two people coming over? We’re just opening presents’. But in retrospect, now that we have all this experience with autism, we realized that it was that change in her routine and sensory overload, all the ripping of the wrapping paper and all the noises from just conversing. Cause there wasn’t even any Christmas music playing, but we also had all the Christmas lights going and we had all the decor. So it’s just complete sensory overload.

Matt: I think if we’re looking at individual things. It was very small changes. But I think for her, each of those small changes snowballed and made a huge difference that turned her world upside down.

Lia: Yeah, exactly. Once we started realizing that, we started recognizing more red flags and that led us to more stereotypical autism red flags that we started noticing. Other things that we really noticed with her were more like the echolalia. Echolalia is a common symptom of Autism Spectrum Disorder and it basically means that a kid will repeat what you’re saying, kind of like a parrot. So if you say, ‘okay, put your shoes on’, then your kid will repeat back to you ‘okay, put your shoes on’. Or they might just say, ‘put your shoes on, put your shoes on’ or something like that. That was something that we started to notice our oldest one doing, particularly when she was upset or frustrated.

Matt: I think for me it was the biggest thing because trying to comfort her when she was crying, I would reassure her. ‘Oh, it’s okay, you’re okay, you’re okay’. And kind of rub her back a little bit and then she would be repeating back to me. ‘It’s okay, you’re okay, you’re okay’. And then now if she’s upset, crying and I’m holding her, I don’t even have to say ‘you’re okay’. She’ll repeat back to me. ‘I know, I know, you’re okay’.

Lia: Yeah. Like she’s learned to associate the phrase ‘it’s okay, I know’ to when she’s upset. So she doesn’t really know what it means. She doesn’t understand that we’re trying to comfort her. She’s just in a sense, been conditioned unintentionally to associate the phrase, ‘It’s okay, I know, I know’, when she is feeling sad, upset, or frustrated. So echolalia is repetition, but there’s also something called scripting that our kid also did. Scripting is essentially when they memorize lines or scenes from movies or books or stories and they can repeat them verbatim. And that was a huge one with her.

Matt: The struggle with us at first was because she was struggling with language in general. Through the scripting, that kind of allowed her to pick up some words that she wouldn’t have ordinarily had.

Lia: Initially. One of the biggest things that you’ll see is a speech-language delay in Autism Spectrum Disorder. So usually kiddos will be flagged because they’re not where they should be with language. They don’t have the number of words they should have. So she was supposed to have 20 words by 18 months and then like 200 that you understand. But she definitely did not have the 20 words. Even the words that she had were just things that described things, but she would only use words to really just say things out loud. So she was never trying to communicate with those words. She wasn’t trying to tell me that the duck was yellow. She wasn’t trying to get my attention on the yellow duck. She just saw the duck, thought it was an interesting duck, and wanted to point out, ‘oh, look yellow’ like a yellow duck.

Matt: And it was the same thing with scripting. When she was a little older, she was able to repeat phrases that she had heard, but she wasn’t able to use them in any meaningful way. It was just repeating a random segment of words that she had heard from somewhere

Lia: And eventually, with time, I’d say like a year later she was able to use the things that she had memorized from scripting in context. So she will still script and say those lines from movies, but she will use them in a scenario that will actually make sense. One of her favorite movies is Blue’s Big Musical. And there’s a part where the little cartoon soap bar slips and falls. And he goes, ‘whoooOOOoooa!’ when he slips. So now every time she falls or she gets injured instead of reacting with a natural response, her reaction is to say, ‘whoooOOOoooa’, just like slippery soap. So she’s now learned to associate with what it actually is similar to, but she’s not able to come up with her own original reaction.

Matt: Right. That kind of goes along with having to be taught how to communicate. And I mean that going down to the play as well.

Lia: She’s actually gone through a lot of therapies because of that, but that was honestly one of the biggest red flags that we noticed. With fine motor, one of the issues that she had was she wasn’t able to, for example, put coins inside of a piggyback. So they had tested that during her evaluation and they noticed she didn’t have a fine pincer grasp. So there’s a lot of little things like that that we never would have noticed if it wasn’t for the evaluation.

Matt: That’s true. I would say she’s very rigid with any type of change of routine. So trying to institute any type of regular routine that isn’t what she’s used to or accustomed to is a struggle in itself.

Lia: For example, what I used to do is I would go to work and I’d drop her off at my mom’s, who would watch her while I was working. So that was the routine. Right? But then my schedule got changed up when I got pregnant with my second child. So I was able to work from home more often. And then the days that my mom would be watching her kind of would change. So she would get frustrated if I unexpectedly dropped her off at my mom’s. She would be crying and fussing because she’s not used to that. She was used to being home on those days. And alternatively, if I had her home on a day she wanted to go to grandma’s, she would be fussing and having another meltdown because she thought, ‘no, this is the day we go to grandma’s’. So that rigidity with the schedule itself was something that I thought was a little bit strange, but at the same time, I didn’t really think it was an autism thing.

Matt: Well we still see that today. She will want to go in the car if we don’t go for a car ride in the afternoon because we don’t feel like it, or life has changed and there’s another task we have to complete. She’ll be asking to go in the car and it’s kind of a little bit of a struggle letting her know, ‘not today’. It breaks up her routine a little bit.

Lia: Yeah. I think the very last red flag that we noticed, and this was more on our second child, we didn’t really notice it so much in our first child, but it was really that headbanging. We noticed online that a lot of families were seeing headbanging and I had never experienced that with my first child. So I totally didn’t even have that on my radar. But when our second child was born and she got a little bit older, she suddenly started headbanging. And that’s when I went from thinking, okay, I definitely don’t think she’s neuro-typical at that point, I was still kind of on the fence because she was doing like the — crashing, the running, the spinning. But you know, I was like, well maybe she’s just a more hyperactive kid with a speech delay. But then when I started seeing her doing the headbanging, I was like, there’s not really anything else that could explain that at that point.

Matt: Right, It seemed like the headbanging, she was finding it enjoyable because it was very similar to her running and climbing around.

Lia: Like a stim, like what the autistic community calls, when you essentially try to do things to self-regulate, they call it stimming. What we notice is she was only doing it when she was going to bedtime in the crib. So we basically were like, well, it might just be that because she loves to run span and crash and dive when she’s outside of the crib. When she’s in the crib, she’s very limited and she can’t do that. So she’s trying to find another way to get that sensation and get that body space awareness within the confines of her crib. So those were basically the major Red flags that we saw. There honestly were a lot more, but that’s, I would say the biggest ones.
Outro

Lia: to recap in this episode, we’ve touched on how autism is a spectrum and presents very differently in each child. Remember we’re not doctors, so always bring red flag concerns up to your child’s pediatrician or neuropsychologist.

Thanks for listening to embracing autism tune into our next episode, where we will dive into how to prepare for a diagnosis and answer questions such as how do I get my child evaluated? What can I do while waiting for the appointment and how can I best prepare for diagnosis day? See you next time on embracing autism.

—
References
Basics About Autism Spectrum Disorder (ASD) | NCBDDD | CDC
Autism spectrum disorder – Symptoms and causes
Autism Special Interests
Age at autism diagnosis differs between boys, girls
Autism and Vaccines – Vaccines do not cause Autism
The SAGE Encyclopedia of Intellectual and Developmental Disorders
Toe Walking and ASD
Why Does My Child With Autism Echo Words and Sounds?
Scripting

Welcome to Embracing Autism
Show Notes for the Embracing Autism Podcast — EP 100

Introducing Embracing Autism: A Journey with Autistic Children

Lia: In this episode, we share our personal journey as a married neurodiverse, couple raising autistic children. We discuss how our experience led us to create the charity initiative AutismWish as well as how this podcast intends to help parents like you.

Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice and support while spreading awareness and acceptance of autism spectrum disorder. I’m Lia.
Matt: And I’m Matt!

Lia: Each week we will discuss our journey with autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources, and sharing our personal stories. This is-

Lia & Matt: Embracing Autism!

Discussion
Lia: Hi, everyone! I want to welcome you to our first-ever episode of Embracing Autism the podcast, brought to you by AutismWish, which is our little charity project. We started recording this podcast to provide parents with some resources and information, mostly because of our personal journey with autism. We are two neurodiverse parents who have two autistic children officially diagnosed. Currently, they’re actually toddlers, but they were diagnosed at a very young age, probably around…what would you say about…?

Matt: Just over one and a half or so? Actually, they were both about one.

Lia: So we wanted to put this together to kind of put our story out there and try to connect with other parents and give you guys a sense of community as well as provide you guys with some tips and guidance and information that we’ve learned along the way with our journey with autism. With that said, I think we’ll just tell you a little bit about our story.

Realizing Red Flags and Seeking Evaluation for First Child

Matt: Kind of just dive right in. So kind of going for our personal journey. I think the first time that we realized we had some red flags with our daughter was probably when she was about a year and a half old. And some of the behaviors that we had started to see were that she was kind of isolating herself, playing with toys in non-traditional ways, and very rigid behavior. Those were some of the first things that had us contact Infants and Toddlers to kind of learn a little bit more about what was going on.

Lia: Our initial experience with autism was our first child. Our first child was the one who we went through this process for the first time ever, where we hadn’t really had any real exposure to autism spectrum disorder. We weren’t really familiar with it. So we didn’t really know what autism was to the extent that we do now.

Matt: And I think for me, it was kind of a scary word mostly because I didn’t know. I mean, like you said, I didn’t know what autism was. And even when I reached out to family and friends, no one had really come across it to the degree that we would be able to get great insight to what was put before us. So I think that was kind of a scary time in our lives where there was so much unknown and we had to learn as much as we could as quickly as possible.

Lia: So I learned that autism only affects about 1% to 2% of the population. So it’s very unlikely that you even know somebody who has autism or is autistic. And so for us, I don’t think that I had really known many people other than a relative of mine who was diagnosed autistic, but I don’t spend a lot of time with them. So it was still not very obvious to me. One of the first things that we noticed was that our daughter had a speech delay and that’s what triggered the whole Infants and Toddlers evaluation and they were the ones who ultimately told us that we should get our daughter evaluated. But even some of those initial red flags to us — the lack of eye contact, or just playing in isolation or not really noticing when peers are around — it did seem a little bit unusual, but I feel like at the time I wasn’t too concerned about it until that Infants and Toddlers evaluation came and they basically told us: “Hey, you should be a little concerned.”

Matt: And I think there were even stimming activities that she would partake in that we assumed it was just a standard behavior for whatever age she was at the time. I think mostly the arm flapping was a big one that we noticed.

Lia: Yeah. Cause that’s the thing, there’s some of these behaviors that are actually pretty standard for younger children. So arm-flapping behavior is really normal for infants, like when they’re young, but there comes a point where they outgrow it. And the issue with our daughter was that she had not outgrown it. And honestly, because it was kind of a harmless behavior, I never really cared. I was just like, oh, she’s excited. She’s happy. Woohoo. You know, it wasn’t a big deal. I wasn’t concerned about it. So it was kind of subtle things like that initially. And then there were a few more things that were a little more obvious.

Unexpected Autism Diagnosis for Second Child

Lia: Eventually, our daughter did ultimately go to a Developmental Pediatrician where she got an autism diagnosis, and shortly thereafter, 11 months later we had another kid. So we had our kids back to back pretty much. And the second child also came out diagnosed with autism spectrum disorder, which we completely did not expect that time.

Matt: I think that was a bit of a wake-up call, mostly because we had our one daughter diagnosed with autism and we had gone through all the steps. I mean, it started with the therapies and we had the realization of, okay, we know what autism is. And for our second daughter, she was nothing like our first daughter and we’re like — ‘Okay, no. She’s not autistic. How can she possibly be autistic?’ — And then we had the realization of, oh, there’s a spectrum.

Lia: That was definitely very educational because our second daughter is like the polar opposite of our first child. Our first child was more like the quiet type that stayed in her own little world and didn’t really like to bother other people too much. She just kind of did her own thing and didn’t really pay attention to the kids around her. And then our youngest child, who I thought was neurotypical at the time, I used to refer to her as my neuro-typical baby all the time. Like I was like, oh yeah, I have an autistic child and a neuro-typical child. I could have sworn she was neuro-typical because she did socially engage and she smiled. In retrospect, she didn’t have eye contact really, but I didn’t notice that because of all the smiles and the giggles.

Matt: I think another part was she was very pro or not proactive, but reactive. It was just like she would climb on everything and she’d run around. She was so hyperactive. I was like, okay, she is doing her own thing, having fun climbing on toys so far, whatever. Yeah. It really threw us off a bit. And then the light bulb or the dumb moment of, oh yeah! Autism isn’t just this one thing. It can be a wide range. There can be different levels. And then I think it kind of hit us and we’re like, oh, okay. Maybe she is autistic.

Lia: The second child, the only reason that we were really having her on our radar is because through the program that our first child is in, they automatically will monitor any siblings of a child who’s been diagnosed with autism. And since our second one was younger, they had already been keeping an eye on her. The developmental pediatrician decided to continue to try to evaluate her just in case. And I wasn’t really convinced when we went to that appointment. I wasn’t really sure. I thought I saw a few red flags, but because her behavior was so drastically different from our first child, I initially didn’t think that she would get an autism evaluation. But I did notice that as she got closer to that 17-month mark, that our first child had hit and regressed that’s when we started noticing more of those behaviors.

So our first child initially, one of the things that we noticed was a regression of language at that 17-month mark. And we kind of kept an eye out for our second child to see if something similar happened. And it actually did, like, she hit that mark and it wasn’t so much that she lost language. It was more that she just didn’t develop language. So she was kind of like mute, like non-verbal.

Matt: It was very much a struggle to get her to basically say even the most simplistic baby language — mama, papa. I mean, just very simple sounds. It was almost a struggle just to get that from her. I definitely noticed that there was more of a regression with our oldest daughter where she actually forgot how to do certain actions. I remember one of them that was kind of devastating for us was she used to blow kisses and then she hit that wall and had unlearned that. And I remember that was a really kind of devastating moment for us. We weren’t sure what was happening and it was definitely a challenging time.

Lia: And that’s why we kind of questioned it with a second child because she didn’t have so much of an obvious loss of traits, behavior or language. It was more like she just had a really delayed advancement of those things. So instead of having said mama and papa and then losing it, she just never said it.

Unnoticed Red Flags and Disconnecting

Lia: Whereas our first child had learned those things. And then once she hit around the 17-month mark, she lost it. She stopped saying those words and she pretty much started disconnecting at that point when she was little, there were a few things that we had noticed that in retrospect probably were red flags. So like at the hospital, for example, I remember that she never cried whenever she was hungry. And the only way I ever knew to feed her was because she was sucking on her fingers. So in retrospect, there were these red flags and I just never noticed it cause she was my first baby.

Matt: And we also brushed off that we just had the best baby in the world. She never woke us up crying.

Lia: And would sleep five hours in a row.

Matt: She was very quiet and that’s why we were like, wow, everyone always complains about their kids crying at night. And we got one that has gotten past that. So I think it was a mixture of a few things because it was our first child. Obviously, we didn’t really know, we didn’t have any comparison. So a lot of these things, we just kind of assumed, oh wow.
Lia: Like this is just a really great baby!

Matt: Or we’re really great parents!

Lia: I don’t think it was that one.

Matt: No, no, no, no, it definitely wasn’t, but it was definitely an interesting and challenging time. Just kind of going through that journey through each of the steps after we had gotten the diagnosis.

Lia: The other reason that we had that hesitation with our second child was because she was so drastically different even from birth. Our second child was the polar opposite. Even at birth. She was an extremely colicky baby. And I remember the only way we could ever get her to go to sleep as a newborn — and even probably through like the first year of life — was putting her to sleep in one of those swings because she needed the motion to put her to sleep.

Matt: Right. Oh my gosh. I remember the middle of the night having her in the rocking baby rocker or whatever, and trying to slowly unbuckle her and transport her into the crib without her waking up. And then if she woke up, we’d have to repeat the whole process. But I remember the first few months were definitely a struggle. And I would even say even today, I mean, now that we’re where we’re at. I mean, and she just turned two a little while ago. She’s still very much motion-seeking. Even today waking up from a nap and saying that she wants to be rocked in the chair.

Lia: Those behaviors that we saw when they were initially very, very young are actually still here. It’s just kind of morphed into something a little bit different. We learned a lot from that experience in terms of just how much a spectrum autism spectrum disorder is. You can have two children come from the exact same parent, both of them, autistic diagnosis and just have completely different traits, behaviors, and needs; but all of this experience and the exposure that we had to both of our girls and the entire process that we’ve gone through has really helped us gain a better understanding of Autism Spectrum Disorder.

Coping with the Autism Diagnosis

Lia: But that’s not to say that we didn’t have a hard time initially. That initial diagnosis, the first time we heard “your child has Autism Spectrum Disorder”, it was actually pretty devastating to us. And I know that a lot of times I see online, I see people who say, oh, if you’re upset that your child has an autism disorder, that just means you don’t love them or accept them for who they are, or you just want a different child, or you just don’t understand your child, how they are and all this stuff. They kind of put this negative connotation to a sad reaction to a diagnosis when in fact, I don’t think that’s the case at all. On the contrary, I felt like the autism diagnosis was actually something that triggered a response because we had prepared or envisioned for one future and then were given essentially a different one. And that was the part that was hard. It was learning to cope with the fact that what we had expected would happen, what we had planned and dreamt up in our minds and fantasized about — that’s no longer going to be reality. It wasn’t at all about the fact of our child specifically, we wanted to be different. It was more like the future that we had planned would have been different.

Matt: And I think I was also a little terrified as well. I mean, obviously, we’ve mentioned before that I didn’t really know what autism was, but there were so many mixed emotions. I remember talking to my family and basically, their response was like, oh, they’ll grow out of some of these behaviors. Like essentially don’t worry. Like you’re making a bigger deal about something that in the end, they’ll be perfectly fine without these struggles that they’re having. And it took a really, really long time to have conversations with them where I was basically kind of letting them know that they might not grow out of this behavior. And it could be an ongoing struggle, like making an assumption like that before you actually know what the situation is might not be the best approach. I think I also had a little bit of fear, mostly because I was worried about — I remember I talked to one of my friends because I was worried that if our daughters weren’t able to socialize with their peers, they might not be able to make friends and they wouldn’t be able to have a childhood that I had envisioned for them where they’re hanging out with friends and having a good time. And I remember, thankfully he has a daughter that’s roughly around the same age, I think she was about a year younger than our oldest. And he was like, ‘well, worst case is my daughter will be friends with your daughter’. And it was such a kind of a sweet moment. I was like, well, thanks buddy, I really appreciate you basically saying ‘I’ll make sure my daughter isn’t alone in this world that she’ll have to another friend’.

Lia: And community is so critically important when it comes to this sort of thing. That’s part of the reason that has driven us to create this podcast and create AutismWish because the community really helps you feel that sense of belonging and add that shoulder to rest on whatever you need that support. And it also helps you connect your children to other peers who may be in a similar boat and can relate to it. So we definitely encourage that sort of community bond and feeling. And that’s part of the reason that’s driven us to create this podcast, but I can totally relate to that. Cause I remember when we first got that diagnosis, I think initially we were okay. Right? But it wasn’t until the next day after it kind of hit us and we had time to process everything that it kind of just felt like it hit us like a truck. We were just so overwhelmed with what does this mean? And I remember us holding each other and we were crying and we didn’t really know. We just didn’t know. We just felt very lost and we didn’t know — what does this mean? Is this something that we should be worried about? Is she going to be okay? It was more of a cathartic type of emotional journey that we went through.

Matt: And I think part of the struggle is because it is a spectrum. There is no ‘this is Point A, this is Point B — this is the exact path you take’. In every situation, we are basically staring into the abyss of Google, Googling autism and hoping for a story that would kind of lead us in a path. But it was basically us staring at a blank screen. Like, okay, where do we go from here?

Lia: In retrospect, we understand or realize that most of that anxiety that we had at the time wasn’t so much about — ‘oh no, my child’s autistic, what am I going to do, what are people gonna think about me?’ — It wasn’t like that at all. It was more the sense that we didn’t feel prepared for this, we didn’t feel like we knew how to help our children in the way that they needed to be helped. And we so badly wanted to, but we felt hopeless in the sense that this was completely out of our league. We didn’t know what we were doing. So I always feel like it’s a process that you have to go through. And it’s something that you have to basically just push through with the realization that it does feel initially like there’s this giant storm hitting you of doom and gloom. And it does feel that way. I don’t want people to think that it doesn’t and kind of belittle that experience because it’s an authentic experience and it really is necessary because once you push through that experience and get to the other side, that’s when you get that realization of like, ‘wait a minute, this isn’t so bad’. Once you get out of the storm and are looking back, you’re like, ‘wow, okay, I got this’.

Embracing the Diagnosis and Getting into Their World

Lia: And that’s where getting educated and really learning and finding your community comes into place because you want to get from the point where you feel like you’re weathering the storm to the point where you feel comfortable enough to not just learn and accept the diagnosis, but learn to embrace the diagnosis and learn to embrace your child for who they are rather than trying to change them.

Matt: And that’s what I was gonna say, trying to get essentially to their level where you’re not looking at them as parent-to-child, you’re trying to get into their world. The transition for me was when I was playing with our oldest daughter right before diagnosis. It was parallel play where I was playing right next to her, the exact same thing she was playing. And I was in another world. I wasn’t even in her world. We were playing side-by-side the same toys, but she wouldn’t even look, engage, or be aware that there was another person trying to play with her and engage with her and it was extremely hard. But as time progressed, we learned techniques to try and break down that barrier, to try and bring her into our world or the other way around. She’s bringing us into her world. And then we’re able to kind of move together from there for me. I try to think of it, not necessarily a struggle with autism, but trying to unite.

Lia: Right? Like you’re not fighting autism. I see a lot of representations of autism in certain groups as this monster that we need to beat and destroy in order to reach who our child truly is deep down inside. And I feel like that’s just the wrong perspective to take because your child has autistic tendencies because they are autistic. That’s who they are. It’s in their neurology, it’s in their neurobiology, their brain wiring. It’s no different than us saying, oh, I tend to be a person who gets really excited around X, Y, and Z. It’s not like you can separate that from your brain. That’s ingrained into your personality. That’s who you are. It’s important to learn and understand that you can’t quote-unquote, ‘take the autism out of a child’. That’s just not a thing. You just have to learn to embrace the child for who they are and then learn to use those behaviors and those traits and the quote-unquote ‘quirkiness’ towards your child’s advantage. Learn to help your child learn to love themselves and embrace their own neurodiversity. Be a part of that. And rather than try to change your child, embrace that and try to find a way to use that to the child’s advantage because every kid has their strength. It doesn’t matter if you’re autistic or not, they have their strengths.

Matt: I think as soon as we had that light-bulb-turning-on moment, that’s when we really came together as a family because we were all, probably for the first time, all on the same page.

Shifting Perspectives and Coming Together as a Family

Matt: We had initially been like, ‘okay, we need to find out how to help her’. But then once we kind of shifted to, ‘okay, this is our world, and this is how she’s perceiving things. Let’s have her try and perceive something in a little bit different viewpoint’. And once we had that first connection where she gave us eye contact, or she was responsive to an interaction we were having with her playing with her, I think then it finally clicked for both her and us that we’re not in separate worlds. We are in the same world together. And I think that was a powerful, emotional shift in the dynamic of our family because we became one world, one family at that moment when it kind of clicked.

Lia: And we did that simply by saying, ‘you know what? I’m not going to try to get her to my level. I’m going to get to her level’; and that’s really the difference there. We’re not trying to get her to do things that we would consider, quote, unquote, ‘normal’. We’re just going to get into her world and we’re going to go and learn what she likes and what she wants to do. And we go ahead and pursue situations in slightly different, unique ways that are more applicable to how her brain thinks. And there’s absolutely nothing wrong with that. Once we came to that realization, the second kid was so much easier. Like when we got the second diagnosis there were no tears for that one.

Matt: I think because we had the concept of, ‘okay, we’ve been working with our first daughter with the therapies’. As far as our interactions with her, it was basically, ‘okay, we’ll transition her into our dynamic of our family’. I honestly thought the second diagnosis probably made things easier so we didn’t have to differentiate anything.

Lia: …because we had two children that were now diagnosed. So it just, it felt natural at that point. And it just felt right. Right?

Rethinking Autism and Embracing Neurodiversity

Lia: I just like to encourage everybody out there who’s listening. If you feel like, well, I don’t know, first of all, if you are just suspecting that your child is autistic, or if you have a child who’s already got an autism diagnosis. But if you feel like there is nothing that you can do and you feel like you just can’t reach your child, consider just rethinking the way that you perceive autism. My child is autistic. It’s part of who they are. And it’s just a matter of trying to understand how they work and who they are and how they experience the world. And once you understand that it’s really like learning a different language, but once you learn that language, once you learn Greek, you can totally communicate with people who speak Greek. Initially, Greek sounds weird to you, right? Like initially if you don’t know Greek, you’re like, ‘whoa, what is this? I’m totally confused. I don’t like it.’ But once you learn it and become fluent, then you learn all these new things and new worlds and new customs and all this stuff that you’re like, ‘you know what, that’s amazing. I would have never learned about this entire culture had I not learned Greek.’ So I kind of see it in that way.

Matt: Yeah. It definitely opens up new pathways for your interactions with our children. I remember when we first started, we were playing with water bottles that had food coloring dye in them and our oldest daughter, her only form of play we had — I mean, we had all sorts of toys for — but the only thing that she was interested in were the colored water bottles. And she would take them and line them up everywhere in the house. And at first, we were concerned that she wasn’t playing with any of the toys, but then we got past that. We’re like, ‘okay, let’s do something different with the water bottles. Let’s push them down the stairs. Let’s stand them up on one end. Let’s roll them across the floor’. And then I think that’s when she started to kind of come around and she started to try to do the same things that we were doing with the water bottles. It wasn’t just lining them up in a row. It was making a different design with them. It was all these different things that you can do with a water bottle. I mean, some of them are silly, but I think that was kind of a bridging moment for us because she realized, ‘oh, I can do other things with water bottles. And these strange people who won’t go away are engaging with me with these water bottles’. And then from then on, we just kept learning new techniques through the different therapies that we’re doing, like how to get a little bit closer to her. Right now we function as a family.

Lia: And don’t get us wrong. It is hard initially. It really is hard. I feel like there is a steep learning curve and that’s part of why we’re doing this. We want to make that steep learning curve a little easier to maneuver. But after a while, you do start to get the hang of it. Once you learn to change the way you talk so that they understand you a little better. Once you learn techniques on how to get them to engage with you a little bit, it really does get easier over time. And it gets fun. You start learning your kid a little bit more, but I know that initially, it can be really discouraging. It can be frustrating. It can feel like this is never going to change. ‘What do I do? I’ve tried everything’, but I want to let you know, there is ultimately a way to do it. There’s a way to reach a connection with your child. We don’t know what that connection may be right now, but with trial and error, with a lot of patience, a lot of time, you will definitely be able to make that connection. It just takes effort in patience.

Matt: And I think going along with that, I think our biggest mistake starting off was the assumption that we had to solve every problem today. We have to go set up every therapy today and it’s really not the case. Looking back now, we could have taken our time. I mean, we could have read up as much as we could have, but ultimately putting your health in a bad place where you’re not sleeping, you’re upset, constantly stressed out. I think that that does more damage overall because I think your children would pick up that you’re stressed out. You’re on edge. They’re not having the same interaction that they would. If you breathe, take your time, you’re calm and you look into the different therapy options…Look into trying to build a connection with your child.

Lia: Ultimately all of this stuff, and the combination of everything that we’ve learned throughout this process led us to feel the need to try to create something that would help, not just parents, but the autistic children themselves, which is why we created Autismwish, which is a little charity project of ours where we try to gift sensory and therapeutic items or special interests items to autistic children. And we started that initially as a Christmas project where we gifted 113 kids with items for Christmas and have grown it since then to expand to other things like Valentine’s cards and all that stuff.

Expanding Resources for Parents of Autistic Children

Lia: But now we’re looking into trying to expand into getting more parent resources as well. So this podcast is an important first step for that, but we plan on having and providing a lot more resources, to you guys over time.

Matt: And overall, I think our biggest goal for this is if you do get a diagnosis that your child is autistic, we don’t want to have you go through the same struggles that we did trying to figure out ‘what do I do next? I don’t know what direction to go and I’m just Googling random things, trying to make my life better or improve my current situation’. We want to try and create a place where you can go. You can listen to the different podcasts, get advice, and learn more about autism and how to navigate the waters to get to a better place.

Lia: More importantly, we also want to get you guys to a place where you feel like you accept and embrace this autism diagnosis and you don’t feel like you have to fight it. You don’t feel like it’s this thing that’s sucking the life out of you. Like we’re trying to help change the perception of Autism Spectrum Disorder and give you guys a positive look at it so that you don’t feel like it is the end of the world after that initial diagnosis, because it really is not. I know it’s hard to see that initially, but give it some time and I promise you, it gets easier. It gets better and it gets fantastic once you get that bond with your child.

Matt: Just keep pushing, stay with it. Don’t give up on your child. And I think there’s a brighter tomorrow overall.

Lia: Absolutely. So we’re going to end up adding a bunch more episodes. We’re going to go into a bunch of different things from different therapies. We’re going to have a lot of information about different techniques and tips and provide you with resources throughout the podcast seasons. So just stick around and tune in and we hope that you enjoy it and learn something from this.

Matt: Thanks. Have a good one.

Looking Forward to More Episodes and Information

Outro
Lia: Thanks for listening to Embracing Autism. To review, in this episode we shared our journey as neurodiverse parents of autistic children and discuss how keeping positive and open mindset is critical to parenting a special needs child. As parents who’ve been there, we hope to help you to go from feeling like you’re weathering the storm to ultimately Embracing Autism.
Thanks for listening to Embracing Autism. Make sure to tune in to our next episode where we will tackle questions such as ‘What is Autism Spectrum Disorder? Should I be concerned? And what are common red flags I should be looking for?’

This podcast has been brought to you by Autismwish. Don’t forget to leave us a review on Apple Podcasts and follow us on Facebook at AutismWish.

References
AutismWish Website
AutismWish Facebook
Screening and Diagnosis | Autism Spectrum Disorder (ASD) | NCBDDD
‎Embracing Autism on Apple Podcasts‎
What is “Early Intervention” and is my child eligible?
Study: Autism impacts about 1%-2% of the population
CDC’s Autism Red Flags Modules/Screener
Definition of neurotypical | Dictionary.com