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.

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.

–
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.