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.

–
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.

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

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

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

Lia: I’m Lia!

Matt: And I’m Matt!

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

Lia & Matt: Embracing Autism!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Resources

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

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

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

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

Lia: I’m Lia!

Matt: And I’m Matt!

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

Lia & Matt: Embracing Autism!

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

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

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

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

Matt: And I also think that helps on the other element of developing the language to be able to repeat the common phrase. In the book that we used, You Are My Cupcake, she would start to learn ‘You are my’ and then just change out each word on the different pages. So she is able to slowly start to basically repeat the phrase moving forward.

Lia: So she basically started to learn the book and memorize the book. And initially, when she picked up those phrases, it was just a matter of completing the phrases in the book. But after time, she started to be able to apply those phrases to real-life situations where it was actually appropriate. So reading therapy helped us get her to a place where she was able to gain language that initially didn’t seem to do much for her because it was, like you said too, scripting or parroting. For those of you who don’t know, scripting is repeating phrases verbatim and parroting is repeating stuff that you’ve heard. The scripting can be from a book; for example, if they memorize the line, they might repeat the line verbatim back to you. That was part of what she started doing. However, it was actually helpful because it expanded her vocabulary. So she went from nonverbal to scripting. Some parents get worried about that, but it’s actually a good sign because it’s showing that your child is progressing, they are picking up language. And even though that language might not be what we might consider natural language, yet, it’s completely better than nonverbal, because they’re at least getting through that transition period of nonverbal to verbal through the scripting.

Matt: It also allowed for the development of her language as well in the You Are My Cupcake, since everything is so repetitive, if we read the phrase, “you are my…” she would be able to fill in the blank saying “cupcake”, and then it was kind of almost in a way that we were asking her a question she was filling in giving us a response as well.

Lia: And what also helped with that is if you get a simplistic book and the simplistic book is really all dependent upon your child’s specific situation, and age appropriate level; So the You Are My Cupcake book — that may be appropriate for your 11-year-old child, as well as a two-year-old child depending upon the level that your child is at with that language development skill. So just look for books that you believe are age-appropriate for where your child specifically is at language and communication-wise, and consider doing that sort of reading therapy structure that we’ve done with our speech-language pathologist who ran the speech therapy sessions. We started with books because it was a special interest of hers, but also because it really is an easy way to practice things like joint attention, as well as distal and proximal pointing. Distal and proximal pointing was another thing that our children both kind of failed at during the autism screening. Distal and proximal pointing is your child’s ability to point at something that’s far away or follow a point of something that’s far away, and to also be able to point at something that’s close up; basically the skills that are needed to communicate non verbally. So that’s like if you wanted to communicate with somebody and explain to them like, “Oh, look, yeah, the movie theaters over there”, and you’re showing them a point, it’s an important life skill for that child to be able to understand. And when the person’s pointing, they need to follow that point and understand what it means. So that’s another nonverbal thing that depending upon the age of your child might be tackled differently. But books were a great way to start out the proximal pointing, which is the pointing really up close because you can point to images in the book.

Matt: So I think there’s a difference between the two different points because in our case, our daughter was able to grasp one of the points faster than the other. I’m thinking of late at night, when we were taking our daughter home, if there was a big harvest- Full Moon, it was a clear night, I’d be walking in with her and I’d be able to point at the moon and say “moon”. And she was able to relate that to one of her books that we were reading, Where’s the moon-

Lia: -Or I See The Moon, I think.

Matt: But she was able to make the connection of ‘Oh, I see the moon and my dad is pointing to the moon’. So she was able to draw the connection there. It was interesting because when we were inside and I was pointing at something much closer than the moon, she wasn’t able to follow what I was pointing out. So it’s just interesting to see that she was able to see something very far away, but not necessarily something much more subtle. That was much closer.

Lia: And that actually was another thing that was brought up during speech therapy was how to be able to transition those skills between proximal and distal pointing. So if your child does struggle with point they will help a lot with that or if they’re not particularly good at either they come up with nice tricks, depending on your kid’s specific special interest that might get them more into attempting that point.

Matt: And I think like anything else, the more you work at it, and they get the idea of when you are pointing it is for a purpose. So in some cases, if my daughter wasn’t able to understand what I was pointing at, I would do my finger extended, like I was pointing, and basically walk up to the item that I was pointing at, and basically touch it. So she could see that from a distance, I had my finger pointed out pointing at something. And then as I get closer and closer and closer, she could see exactly what I was talking about. And I think doing this over time, she was able to kind of grasp that concept.

Lia: Another thing that speech therapists will really focus on is nonverbal communication. So the pointing is part of that. But this can also include not just gestural communication — which is the pointing or facial gestures and expressions — but it can also include things like training with the PECS system, which is the Picture Exchange Communication System, or electronic talking devices and other nonverbal communication tools. This will depend heavily on the needs of your child. With our first child, we didn’t really have to dive too deep into this because she picked up language pretty well with the speech therapy. But with our second child, it has been a little bit more of a struggle to get her to verbally communicate. So we have had to attempt to use a Picture Exchange Communication System. This is a system where you are essentially using pictures that have a representation of what it is you’re trying to say on them along with the word. So for example, if you’re trying to say that you’re hungry, and might have a picture of food, and then it says “eat” on it or something like that. So then you would essentially teach your child that when they’re hungry, they will give you the picture that says “eat” on it. And in exchange, you will give them something to eat. So that’s why it’s called the picture exchange communication system because you’re trading the picture for the item that’s on the picture.

Lia: Now the other items on here, the electronic talking devices, that can be something like an iPad with a software program that’s installed on it, that is very similar to the PECS System, and that it will have images and words as well. But the child or teenager, this is usually for the older kids will be able to just push buttons on that iPad app, or it might be a device itself that has the pictures on it. And every time they push that button, the device will sound out loud, whatever that says. So for example, they might learn to push a button that represents “I”, a button that represents “want” and a button that represents “snack”. And then when they push those buttons, the device might then say out loud, “I want snack” and some sort of like robotic voice. And that would give them another way of doing it. Some do a combination of that. So our child right now is in a speech therapy school program. And one of the things that they’re doing there is the PECS system on a board, where they’re teaching her to point to pictures to communicate what specific snack she wants. And it’s also about expanding language. So we had with our child is that she started off just saying one word phrases. And so if she wanted chips, for example, she would just say, “chips”. And you would assume that chips means I want chips, but she just said chips. So as she’s been going through this program, they’re teaching her to use the full phrase, I want chips. And this is something that I’ve seen her actually do really well with, with just — what, two months of school so far?

Matt: Right. And there are other areas that she’s expanded into short phrases as well. I think one of the ones that she used to say was if she needed help, she would say “help you”, which most people wouldn’t necessarily know if this little toddler came up to you and, missing, saying ‘help you’ you’d be like, ‘No, I don’t need help. I’m perfectly fine’. But when she was saying help you she meant that she actually needed help. And actually just recently she’s been able to switch it and say “I need help”. I think that was actually today. Today this afternoon, which is a huge transition because pretty much everyone will be able to know ‘Oh, you need help instead’ of help you because help you doesn’t necessarily mean anything. So just these small little phrases are making a huge difference. And I also think for the PECS system, it’s also something that you definitely have to work at because I know it wasn’t terribly intuitive for our youngest daughter. It definitely took some give and take trying to get her to see what the picture actually was and trying to relate it to what she was actually feeling. So if she wanted a snack, it was very repetitive, repetitive of us working with the picture to try and show her- ‘Oh, in this picture is a snack and you are feeling hungry, so you want a snack’ and being able to draw that connection to her.

Lia: So PECS is definitely one of the biggest tools that is used right now. It’s kind of like a go-to if your child’s nonverbal to help them get that boost. And speech therapy in general will go through a bunch of other things, too. It’s not just PECS systems or communication devices. They work on a bunch of different types of language, as we mentioned before. So for kids who are I would say, a little bit older, so they understand what body language is, those children who are able to understand that might then go to speech therapy to work on body language. So some of the things they might address for again, the older child is how can you tell if the person you’re having a conversation with is joking or serious, it might be something like teaching them how to judge when is the appropriate time to join into a conversation? Or when is that conversation a private conversation that you should not be trying to get into? The speech therapists will help them learn how to recognize those physical signals and body language so that they learn how to communicate appropriately that way as well. They also work on some skills like asking and answering questions which we touched on a little bit. Children who are autistic, typically, when they develop, they don’t really understand that the ability to ask and answer questions is something that is innate. But autistic children tend to have a little bit of a delay in that. So the therapist can help teach your child how to recognize a question, and how to provide an appropriate answer. So sometimes, if you’re asking them a question, they don’t necessarily understand it’s a question, they might read it as a statement instead. So they don’t understand that you are expecting a response. So that’s something a speech therapist can help with as well. And again, that tends to be I would say, with a little bit older kids, not so much the toddlers, because that’s more of a complex scenario. Now there’s a bunch of other things they help with as well. There’s something called speech pragmatics, and speech. pragmatics is basically just the day-to-day conversation styles of people. So for example, it’s useful to be able to say to somebody, “Hey, good morning”. But it’s also important to know when it’s appropriate to say “good morning”, and who it’s appropriate to say good morning to, it might be really weird, if you just went up to somebody you don’t know on the street, tap them on the shoulder and said, Good morning. So that’s another thing that they help with is speech pragmatics training, which is helping your child understand the appropriateness of those situations, and also the use of idioms, which is again, understanding how those phrases are used. And when they’re taken literally versus maybe — not sarcastically but when — yes, another thing that they work on is something called prosody. Prosody is the melodic sound that your voice makes when it goes up, and it goes down. And there are inflections and at the end of a question, I might say, have my notes go up, or I might just make my notes go down. And that up and down of your voice is something that autistic people tend to not necessarily catch on to in terms of what it might mean in the person’s sentence. So typically developing children and adults, this is a skill that you gain to understand what is meant by certain inflections of your voice. This is a lot more challenging for autistic children and adults. So this is something a speech therapist would help a child be able to identify and to be able to develop in their own vocal skills as well. You might also not think about this, but grammar is something that speech therapists can help with too. Grammar is something that can be confusing as well, because some autistic children — I know our child would refer themselves in third person. So our child did this a lot. Anytime we referred to her by her name, she learned essentially, ‘oh, if other people are referring to me by my name, that must mean that I must call myself by my name as well’. She had difficulty understanding that when you talk about yourself, you say I or me, and this is something that is pretty standard with a lot of autistic children, as well as something that they work on, is teaching the child when to use your name versus when you should be referring to yourself as I or me and first-person rather than third person.

Matt: And I think this was actually probably harder for us than for her. Because since she was repeating what we were saying we had to basically speak as if we were her. So we’re using I language, which for her, and it was just kind of getting it was kind of a jumbled mess of is she going to be able to get the connection, or is it going to make things even worse, but thankfully, I was absolutely amazed. She was actually able to figure out that she was able to use ‘I’ and be able to transition without any serious delay there as I would have assumed otherwise.

Lia: Yeah, and the switch on that was really when our speech therapist told us that we needed to change our language. So it will feel really awkward and uncomfortable at first, because in order for you to help your child learn — I and mean language — you have to start talking to your child in that language, even though you know you’re not referring to yourself. So for example, if you have a child, Johnny, Johnny wants apples, and Johnny is always saying Johnny wants apples when they’re hungry, you would then turn to Johnny and say, I want apples. So you’re telling him I want apples so that he learns to repeat I want apples. So it definitely feels a little weird when you’re doing it. It’s really awkward at first, but it works.

Matt: Right, it took us a little while to get the hang of it. But then after a while, we saw that it was making a difference for her. And then honestly, we didn’t have to keep I mean, once she had it picked up, we didn’t have to keep repeating the same phrase to her, she kind of took the ball and ran with it.

Lia: And then the two final areas that speech therapists will work on. The first one is concept skills. This is a person’s ability to be able to stay abstract concepts and understand that that doesn’t necessarily mean a literal thing. So autistic adults and children alike tend to struggle sometimes with abstract concepts, specifically abstract verbal communication or written communication. So something like ‘I’m so hungry I could eat a horse’, they may take literally, and they might think like, ‘wait, what you want to eat a horse? Why would you want to eat a horse?’ So sometimes that break in consistency is something that a speech language pathologist might help with, and might try to teach them that. Now when somebody says they’re so hungry, they can eat a horse, it’s an expression that means they’re really, really hungry. So that’s something else that they will work on. And the final bigger thing that they will work on, particularly with the older kids is the social skill development aspect. So when you’re starting off with the younger kids, you’re really focusing on those basic fundamental building blocks of language and communication skills, you’re far more concerned on just trying to make sure that you can communicate with them, before you move on to more complex things like social skills. This is something that would work on things like recreational therapy, drama therapy, art therapy, things like this, that helped build social communication skills, and include things like the ability to ask and answer questions have like a back and forth conversation with someone that keeps flowing, to be able to judge the appropriate distance that you should be standing next to someone when you’re talking to them. So teaching them when is it an invasion of space, private space versus when is it too far, and just giving them that level of awareness in a conversation, as well as being able to judge the mood of the room. So this might be very important for somebody, for example, who may have a sense of humor, and doesn’t realize that maybe you shouldn’t crack a joke at a funeral. So that’s, that’s things that surprisingly, enough speech therapists actually do help with as well.

Matt: You actually jogged my memory when you mentioned the physical distance that two people might stand when they’re having a conversation. And this kind of brings me back to language, it might not be something neurological, that is the struggle, it might be a physical disability that is preventing language to happen in the first place. I know there is the idea of —what do they call… I think Tongue-Tied ?

Lia: tongue ties, yes.

Matt: Right. So as far as your actual tongue and not being able to lift up in your mouth to actually make the sound to produce whatever the word is that requires that sound. And I mean, there would be other struggles if there are disabilities that would prevent language from actually taking place in the first place.

Lia: And one of the things that we mentioned in our previous episode about occupational therapy is how occupational therapists look at motor planning delays. That’s something that a lot of autistic kids struggle with. What I learned, surprisingly, through our speech therapists was that you can also have motor delays in language. This was something that they were keeping an eye on for our second child who has had a particularly difficult time with language development, she is even more behind than our first child was. And so they were keeping an eye on that because it is possible to have that same motor processing delay that our child had with being able to understand, okay, I need to first think about moving my foot in order to move my foot. That kind of disconnect can also happen in the mouth and with your vocal cords and with your tongue and all of that. So it’s possible that your child may be like my child and have a motor planning issue specifically with speech, in which case that aspect is more of a neurological condition. And they would be able to target areas there to try to help with that as well.

Matt: Right, because we see the difference between our oldest and our youngest for oldest, she had a delay, but then her language eventually kind of started to get caught up in the process, as where I think our youngest still falls in the category of nonverbal.

Lia: Yeah, she’s, she’s almost two, and she still pretty much doesn’t have a whole lot of words or communication.

Matt: I was gonna say we rely relatively heavily on other communication to kind of bridge the gap into figuring out what she needs, she’ll rely a little bit more on sign language than speaking, for example, to get her message across to us.

Lia: Overall speech language pathologists will help you during speech therapy sessions to really focus on your child’s ability to communicate verbally or non verbally, as well as socially, it’s really important to note that your expectations and speech therapy should be focused on being able to get your child to communicate, it doesn’t matter how your child communicates, it may be that your child will go from nonverbal to verbal, and I know that a lot of parents really hope for that. I know for us, you know, it was fantastic to finally hear our daughter, say, Mama for the first time. But realistically speaking, not all autistic children get to the verbal communication aspects. So I just like to put that out there so that everyone knows that it’s really case by case, your child may or may not verbally communicate, no matter how much speech therapy you put them in. But that’s not really the goal. The goal is to be able to get them to communicate at all. And that is something that they can do through the PECS system with pictures, they can use an electronic assisting device, they can use sign language, there’s so many ways that they can communicate. And that’s really what I would focus on. Because once you unlock communication, there’s been so many breakthroughs for us with our children. I know our second child who’s pretty much nonverbal still at this point, we have been able to recently get her to try about two sign language gestures.

Matt: Yeah, she would never really tell us when she was hungry. And we really struggled with the PECS system, try and have her bring us card for a snack to let us know, oh, I’m hungry. It didn’t catch on terribly great, I would say. But then she was able to figure out the sign language for eat. So she’s been doing a really great job of signing when she’s hungry and wants to eat. And we know when she actually gives us a sign she’s not kidding around, we put her in her chair. And pretty much whatever we give her she scarfs down so that is kind of her telling us like ‘Hey, Mom and Dad, I’m starving, like give me something to eat’. But that’s been really helpful for us because it gives us an idea of what she’s feeling. It’s the same thing with a diaper change, she’ll kind of let us know when she needs to be changed. If if we’re walking around, she has her pants on and we can’t see the blue line on the diaper she’ll let us know that she needs to be changed as well. But I really think that the sign language has been very helpful for kind of us moving forward with her.

Lia: Yeah, so I just I’m gonna wrap things up here. But I just want to let you guys know and reiterate, communication is all you’re really looking for here, it doesn’t really matter which form of communication, just find the way that works best for your child and work with them as best as you can to get that communication because it really opens a lot of doors. And I will tell you from personal experience with our kids, sometimes they start off nonverbal, but then that communication system that you put in for them to start unlocking doors to verbal communication as well. Our first child, we started her off with sign language, it was very difficult because of some sensory issues she had with her hands. But that triggered something in her mind to start connecting language, the use of signs to assign meaning to a physical object like food, it’s somehow triggered something in her mind that she then was able to start associating the words to that item. And she basically didn’t need to use sign language anymore. So we ended up just skipping it for her because it was enough of a transition to help her get that extra push that she needed for language.

Matt: Yeah, I think there definitely is kind of — at least we kind of see like a breakthrough moment or a silver lining where there’s just a window into when there’s that connection that’s being made where there’s no communication whatsoever. And then they get some type of communication where they understand that, ‘Oh, I’m able to send a message to someone letting them know something that I’m feeling’. And it is very helpful. I mean, even if it is through sign language and not actual verbal communication.

Lia: And I think the most important thing I’ll leave you guys with this is, a lot of times people assume that because a child is nonverbal, that they don’t understand what’s going on. We have learned through this journey that that’s not the case, most of the time, it seems like most of the time, they are actually quite aware of what’s going on. And they are learning and they are absorbing things like little sponges, and they just aren’t able to express it. So because they’re not able to express it through communication, we just assume that they don’t know. I will challenge you guys to take into consideration and just try to assume that your child actually does know what you’re saying when you’re talking to them, rather than assuming they don’t understand. Because you may find out later down the road if you go through speech therapy, and you’re able to unlock communication for them, whether through verbal or nonverbal, they might come back at you and say, ‘Hey, by the way, Mom, I understood you the whole time’. So be careful what you say. And definitely, definitely don’t take for granted that communication piece because you never really know.

Matt: that’s true. I think that’s a great helpful hint.

Outro
Lia: So that’s all we got for today, guys. Thanks for listening. To review. In this episode, we talked about what your child may work on in speech therapy, how your child does not necessarily need speech to have communication and tools that may be used, such as the picture exchange communication system, sign language and electronic communication devices.

Lia: Thanks for listening to embracing autism. Join us next time when we take a look at applied behavioral analysis or ABA and answer questions such as Why are autistic children often referred to ABA? What can ABA help my child with and why is ABA so controversial? This has been Embracing Autism.

Resources
What is the Picture Exchange Communication System or PECS?

Physical Therapy
Show Notes for Embracing Autism Podcast — Ep. 108

Intro
Lia: This episode we explore physical therapy and what you can expect during sessions as we discuss common activities and potential benefits for your child.

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

Matt: And I’m Matt!

Lia: 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 physical therapy is something that not every child will necessarily need. Our youngest child did not need physical therapy. But our older child, it became pretty prevalent that she did need physical therapy. Really early on, we learned about her physical therapy needs through an assessment through infants and toddlers program; they had a free Physical Therapist come and check by during one of our sessions. And they were just evaluating because we had some concerns. Some of our concerns were the fact that our older child would fall a lot when she would walk. She wasn’t able to really get from place to place without tripping and initially, we thought, ‘oh, maybe she’s tripping on a toy,’ or something like that, but as we paid closer attention, we noticed that she was tripping on absolutely nothing. There was nothing on the floor, no obstacles, anything like that. And she was constantly falling over herself. We also noticed that this would happen when she would transition from, for example, tile to carpet, or anytime there was a transition in texture on the ground; she wasn’t able to really transition well from the different textured floors and that would also cause her to fall. So the first thing that they did was have that physical therapist come in with infants and toddlers to take a look at her and they noticed that it seemed that her hypotonia, or low muscle tone, may be contributing to her having some balance issues and some other issues that were contributing to her difficulty with walking and running. And they also noticed that her ankles were kind of buckling in a little bit. So from there, we were actually referred to an orthopedic and the orthopedic doctor would basically check her physically and make sure that there wasn’t anything physically wrong with her feet, or to see if she would be referred to have some sort of x-rays or anything like that. Luckily, when we got her evaluated, there was nothing wrong physically with her feet, it was just a matter of her muscle tone that was causing the issue. So we got an official referral for physical therapy and she went starting off with just the balancing and walking issue. But once we got her into physical therapy, we actually found out through the therapy sessions, that there was a lot more to it than that. And there were some other areas that she had to work on as well. So your child may or may not need physical therapy. But if you feel like there’s something going on that you can’t quite explain, it never hurts to get an opinion.

Matt: Yes, our oldest daughter really had balancing issues, she wasn’t able to transition with the different types of density or texture from one floor type to another. So when we had gotten her into physical therapy, first off the bat she was falling immediately. They had different types of mats with different densities. So when she would step from one to the other, she would immediately fall and even from just the plain standard tile floor in the physical therapy office to the first mat, she would fall immediately. So we had to start out very, very small and basically kind of just get her to stand on the mat while she was performing small little activities. There was a magnet board and they had her play with little magnets while she was standing on the mat to work on her stability and then we were slowly over time able to try and introduce her to actually walking on the mats themselves.

Lia: In physical therapy they have a bunch of different kinds of mats. They started her off with a flat mat and the flat mat has no angle to it. It’s just completely flat, but it’s cushioned, it’s padded. And the theory behind that is if your child is walking on a cushioned surface, that cushioned surface has a little bit of give and since it has a little bit of give it requires your child to have to engage their core muscles to be able to balance and stand so it’s kind of like a passive way of having your child exercise their core muscles without them even know they’re exercising just by having them walk on a padded cushion. There were other cushions that once your child transitions after being able to do that skill, they add an incline to it. So there’s the flat mat padded cushions that they’ll start them off with and then they have padded cushions that are at an angle and there’s some angles that are steeper than others the goal is to gradually increase that angle so that they’re having to put in more work in their core muscles and other areas to to be able to balance and not fall but they start flat and gradually pick it up.

Matt: And then another kind of in the same realm is the idea of the balance beam. Now obviously there was no height with the balance beam it was right on the floor. If she fell she fell two inches off to the ground. But I think the purpose of this, and correct me if I’m wrong, Lia was more so to have her walking with a direction and a purpose. So my understanding is if she walks on a mat, she can kind of just walk shoulder length apart and kind of wobble like a penguin, if she wanted to, she would still be able to stabilize herself and she wouldn’t fall. But when you’re put on a narrow balance beam of four to six inches, it forces you to walk in a very precise line with a purpose. And there isn’t really any error for messing up more or less.

Lia: Yeah, and that also kind of forces your child again, to engage that core. Because if you think about it, when you’re trying to balance, you’re focusing really hard on contracting your muscles a certain way so that your body doesn’t fall off. So that is one way to start them off, they do kind of like a balance beam that’s flushed to the ground. So they’re not in the air, they’ll start off flush to the ground. I know some places will also gradually increase the height on that depending on the age of your child. So if you have a really young child like ours, like a toddler, that will probably stay flush to the ground. If you have a kid who’s a little bit older, they’ll probably try to gradually increase a little bit of height to make it a little more challenging for them. The other great thing about that is it kind of forces your child to focus and pay attention and be aware of their surroundings, because part of the problem with autistic children and ours in particular is difficulty with the body surround and body awareness and their awareness of self in space, which means they aren’t really able to discern where they are in space. Our child, for example, when she was at the playground, should be running up a ramp and fall right off the edge, not realizing that it ends there and that she would have to turn, she would just keep running and not really realize that ‘Oh, there’s there’s an edge. If I keep going, I’m gonna fall.’ So part of this activity was to help her gain some of that spatial awareness and recognize that ‘I need to stay on the beam, I need to put my eyes and focus and attention on this to stay on the beam. Otherwise, I’ll fall off.’

Matt: You raised a good point with the spatial awareness because it became a flat out safety issue, even something as small as just stepping off a curb from the sidewalk to the street, she would be completely unaware that there was even a step down. So you’re just thinking in your everyday life where you encounter a small little change and you’re no longer walking on a flat surface, there’s a step, she would not even notice any type of change. And she would just keep walking as if it was flat and would ultimately fall. I mean, thankfully, we were always there to catch her or hold her hand, but it was definitely something that we had to keep an eye out for.

Lia: And the other great part about the balance beam is it is diverse, the one that they have, that’s a mat, it’s one that’s flush to the ground, but you can move it so they were able to move it different locations, which would allow them to be able to put activities in front of it. Matt, you mentioned the magnets was one of the activities. There’s other activities that they use to engage your child, there’s these toys that are called Squiqz (paid link). And they’re essentially like suction cups that you can stick on to flat surfaces like Windows and walls and things like that. At physical therapy, they would take either the balance beam or they’d take like those cushioned ramps or cushioned stairs, they would put those up flush against a wall or window where they would stick a bunch of these Squigz and once they would get her up there, it would hold her attention so that she could practice some of the skills they were working on.

Matt: And in keeping with the theme of balance, one of the reasons that we were going through PT was also to build her core strength. So her balance was bad, and she was constantly falling but on top of that she also had weak core muscles. So she wasn’t able to really stabilize herself. This is critical for something as small as going up the stairs, she would lean backwards, where we would have to basically be behind her holding her in place as she would walk up the stairs, being able to kind of stay in her own space and not kind of fall one way or the other as she’s going up the stairs.

Lia: Yeah. And that was also pretty obvious with her inability to go down a slide that core strength really became obvious to us once the physical therapist pointed it out. We didn’t notice before, but when she would go up the stairs she needed assistance. And that was another thing we’re working on is climbing stairs, she couldn’t do that. We would help her go up the stairs on the slide and then when she would go down the slide. A typical kid who goes down a slide will be able to stay and sit in a seated position and slide down no problem. Anytime she would go down the slide, she would just fly back so her head would fly back and her and she would essentially slide down laying down on her back because she couldn’t keep herself in the seated position. The therapist was telling us that her core muscles were too weak to keep her body up and keep the muscles engaged enough for her to be able to do that. So that was another thing that we ended up working on in physical therapy was really working on strengthening those core muscles so that she could do something as simple as go play in a playground without having to worry about getting injured.

Matt: And some of the activities that we have worked on to try and strengthen her core was in physical therapy, we would use a platform swing and we mentioned in the occupational therapy, they were also using a platform swing more-so for the sensory of the motion, but at physical therapy, they were focusing primarily on her core muscles making sure that she was able to stay in place as the swing was going back and forth. Granted, it wasn’t going very high or very far; it was very, very gradual. Our daughter had her feet kind of dragging on the ground, so she was in complete control. But we also noticed that as soon as the swing would start to go forward, our daughter would have to lift up her legs as a counterbalance as where if she had a stronger core, she would be able to stay in place without necessarily having to shift her weight to try and prevent from falling backwards. So we had gone through many therapy sessions, and we’re still working on her core balance today.

Lia: Because of all the physical therapy that she’s had, she did completely resolve her issue of falling on the floor, so she no longer trips over her feet, she’s completely resolved that. Now she’s able to run, but I can tell that she’s still not super confident in her running ability, but she doesn’t fall anymore, which is great. That’s kind of an ongoing issue. Because if your child does, in fact have hypotonia, like our child, which is low muscle tone, that’s a lifelong thing, there isn’t anything you can really do about it other than physical therapy. So sometimes people with hypertonia need lifelong physical therapy, sometimes you don’t, it just depends on the severity and how much it affects your quality of life. So for her, we’ve done a little bit of a pause for physical therapy right now. We would like to do some more but we have decided to prioritize other therapies that are a little more critical right now. But we think in the future, we’ll probably continue doing that. And I think and I suspect that a lot of children who do go into physical therapy for hypotonia will likely need to continue long term as well.

Matt: And there are ways to still improve like in our case, we’re focusing on core strength. And there are other ways that you were able to improve core strength other than needing to use the platform swing. For example, crawling through a tunnel as far as being able to stabilize yourself in order to crawl through the tunnel. So we’ve set up multiple Amazon boxes, cut holes in them made a series of tunnels or even just purchasing a small cheap fabric tunnel so they can practice going through the tunnel, as well as this is a bit more fun creating a like mini obstacle course for them. So she can go from one unstable surface that might be like a pillow or something to the floor have to climb over something, then go through a tunnel. So by having her kind of challenge her own ability would necessarily strengthen her core muscles and improve over time as she continuously practices that.

Lia: Other great ways to engage core is pushing things and knocking things over. This is one of the activities that they would do in physical therapy as well. They had a lot of these foam blocks that were in they were different densities. So some of them were heavier than others. And some were stacked and some were just balanced. And they would have her practice shoving them over. We noticed that with her initially, it was really hard to get her to do any sort of activity standing, she always wanted to sit. And that was a struggle initially was just getting her comfortable standing because the cushioned floor may make your child feel unbalanced and uncomfortable. So initially, they might not be comfortable with standing up and may need a little bit of encouragement to do that until they get used to it. But once she got used to it, that opened up the ability for her to do some of the tasks that required standing and pushing. And that’s some of that heavy work that I mentioned in the last episode, heavy work is work that requires your child to really put in that physical core muscle effort. It’s called heavy work, because usually you want to put some sort of resistance in there, the resistance can be something that’s like pushing or pulling or tugging or anything like that. In our case, our daughter’s heavy work was mostly pushing these big blocks down, they were probably like the height of her. So they were pretty big and she had to use her core muscle strength to shove them over kind of like a Jenga tower.

Matt: And I’m not sure if this would fall into the category of heavy work too. But they also have weighted balls, the medicine balls that they would have her carry and put in the little shopping cart, and they would have different weights involved. Obviously, they were all within guidelines. So she was never at risk for any type of injury. So she would carry one ball and then a little bit heavier. And she would actually have to work to lift up the ball because I mean, it was heavy for her. So I’m not sure if that necessarily falls into the same category of heavy work or if it’s slightly different or has a different purpose altogether.

Lia: That actually does count as heavy work those I think were the are you talking about the yuck-e medicine balls, right? (paid link)* So there’s these type of weighted balls called yuck-e medicine balls, and they’re great for both PT and OT — by the way, PT is an abbreviation for Physical Therapy that’s commonly used for OT I think we mentioned in the last episode — they might use that more for sensory related reasons in PT they use it more for that core engagement. And the yuck-e medicine balls, these have like a texture to them that makes it easier for kids to grip if they do have some fine motor issues. So sometimes the physical therapists will have that there just to have that extra assistance in case that child has that difficulty. But what’s great about those is they vary in weights drastically. So there’s some that are super, super light, there’s some that are super heavy, and there’s some in between. It’s great because it covers all spans of kids development. So if you have a two year old who’s going to physical therapy, they can still use the yuck-e medicine balls, they’ll just use the lower weight. If you have a 10, 11, 12 year old going to physical therapy, there’s a ball that is weighted heavier, so that they can do the same thing. The great thing about physical therapy is if you’re listening to this, and you have a very young child, or you have a much older child, honestly, the tasks don’t vary that much; what your child is going to be doing is pretty similar, regardless of their age, it’s just a matter of how they adapt that task for your child. They might just increase the weight, they might increase the resistance, the older your child is, or if your child is an older age, they might incorporate some unique things like our physical therapist had a rock climbing wall, our child was definitely too young for that. But her older children who are working on core development, they might use that rock climbing wall to help engage not just the core, but the rest of the body muscles to pull yourself up. So they do definitely have a range of activities for a wide range of ages.

Matt: And I think you do a great job of mentioning on one of our main points when we’re going to physical therapy was focusing on the age milestone that she would be meeting. So for us, we are focused more so on, she didn’t have the ability to jump. So our goal was trying to get her on a trampoline, where she would be able to jump, another big one was kind of going up the stairs. So she was about two or so. So we were still working on going up the stairs, and just little things like that, that have it pegged to a certain age of ‘Okay, we need to see if we’re able to get her to start to achieve some of these tasks that kind of keep her on the right trajectory moving forward.’

Lia: The other great thing about physical therapy is it’s very specifically tailored to your child, so our kid had those three targeted goals, and your child may have different targeted goals. Depending on their delay and their age, some things may be considered a delay, or may not be depending on their age. So jumping is a delay for our kid because of her age. But if your kid was younger, that wouldn’t be considered a delay yet, so they wouldn’t work on that skill. For older kids, they are going to be having a different set of guidelines than younger kids, because their development is supposed to be at a higher level than that of, for example, a toddler. So the skills that you work on during those activities are going to be completely different. Or they could be similar if your kid is particularly delayed in that area. So again, it’s very, very, very child specific.

Matt: Right, I think that’s important, because I mean, you go into the physical therapy, and then they find out where your struggles are. And they try and improve upon those focusing on those individual needs for that child. So I think that was really helpful for us. I mean, jumping is still quite a challenge, we haven’t gotten her to actually achieve vertical velocity. That’s no lift. But But I mean, she’s just making good progress. And she gets the idea of when we say ‘Oh, jump, jump, jump’, she’ll bend her knees and kind of go on her toes. So she gets the idea of kind of the process of the jumping, it’s just the next level is actually getting the lift component.

Lia: Another thing to mention is that when you go in to see the physical therapist for the first time, what they’ll probably do is that initial assessment or evaluation, which is mostly observation and interview style questions, it’s very similar to diagnosis day with autism and all these other therapies, they all have a similar trend of some component of interview style questions and observation. On that first day, they’re gonna ask you what your concerns are about your child. So again, for us, it was really the fact that she kept falling and tripping over her feet. What may happen is that throughout the session, they notice other things. After the interview portion, they just start observation, so then your child is going to be observed in play activity typically. So they have different tasks, they might have like an obstacle course pre-set up in the room for your kid, that’s usually what was set up for our kid. And then they’ll just let your child do whatever they naturally want to do. They’re not forced to do anything. If you have a therapist that is forcing your child to do something against their will, that’s a bad therapist, find a new therapist, definitely do not stay with that therapist because it should be child led. And so while your child is going through these activities, they’re going to be making observations, they might ask you questions like ‘I noticed she fell when she did this, is that something that you would normally observe happening at home as well?’ Or ‘is this kind of a unique one time thing?’ They’ll gauge that level of difficulty of tasks through that process, and then they’ll make goals with you based off of that evaluation. That is how we realized that there are actually more issues than her just tripping on her feet. That initial evaluation gave us some feedback that she was a little more delayed in some other areas as well like the jumping, and the core engagement going down the slide. We had no idea until physical therapy that that was an issue. I never thought to think about she’s falling back when she goes on the slide.

Matt: I was actually blaming myself on that, because I remember when she was really little, I was worried about her falling forward on the slide when she was sitting down, because she would still try and put her feet down, I thought she would kind of project herself forward. So I would almost kind of lie her back a little bit more than what you would naturally do going down the slide. So I was kind of blaming myself with the idea that maybe I had unintentionally taught her how to go down the slide incorrectly without knowing one way or the other.

Lia: Overall, we found that physical therapy was actually really, really, really helpful, because it not only opened our eyes to some new potential problem areas, but it really, really helped her with some key critical areas, like the falling down. You simply can’t go through life if you’re constantly falling, it just makes it impossible for you to be able to do anything, especially with social interactions, which is part of autism spectrum disorder; you can’t socially interact with other people if you can’t get to other people — you can’t play tag and hide and seek if you can’t walk or run. So that was really important for us, in particular, and it’s something that we’re really happy to say we did actually get completely resolved with physical therapy.

Matt: Right, I was gonna say, I mean, we’ve definitely resolved as far as her falling down, there are still areas that obviously we’re still working on with her. So I think it’s an ongoing process. And I’m sure that as we kind of continue down the road, when she gets a little bit older, we’re going to focus on the different age milestones, making sure that she’s still able to kind of hit those marks as necessary.

Lia: Keep in mind that again, each child is unique, and each child is on their own timeline. So do not feel discouraged if you notice coming up on some milestone evaluation that your child is physically developing at a slower pace than everyone else. I know with our child, we started noticing this during the milestone evaluations and her pediatricians office. And I’ve talked to a lot of mothers that say every time they go to these milestone evaluations, it’s always like a gut punch. They’re always taken aback with man, my kid is so behind this is so torturous to go into these meetings. And then notice every single time they have to mark, no, no, no to every question of ‘does your child meet this milestone’, but I would challenge you guys to try to look at things in a more positive perspective. Just keep in mind that your child is uniquely yours. It is their specific target area, it’s their specific goals, you don’t need to compare their goals to another child. Even if you have multiple children you don’t need to compare it with the other of your children. Each child is unique and has their own unique challenges and their own unique strengths. So when you’re taking a child to physical therapy, if you do, in fact, get a feedback of ‘Oh, did you realize this was also delayed, and this was also delayed and this was also delayed’, it does initially feel like a bit of a setback, like ‘Oh, man, I came here to try to resolve an issue. And I came in with one and came out with four’. At first that might be a little bit daunting and it might make you feel discouraged. But I would just challenge you to look at in a positive way. Because you are finding problems early and you’re targeting these problems initially. So you’re going to make more improvements, the more you know, rather than trying to avoid it just to avoid disappointment, because it’s, it’s not really about disappointment. It’s about helping your child in any way you can so that they can be the best version of them that they can be.

Matt: And it might sound dumb, I remember seeing a quote on a board, I think when we’re going to occupational therapy or physical therapy, and it was basically the concept of popcorn kernels, that if you’re making popcorn, they’re all in the same oil, they’re all provided with the same amount of heat. And yet not all the popcorn kernels pop at the same time. They all pop at their own individual time. And one is not necessarily better than another just because he pops early versus one that takes a little bit longer to pop. I mean, I don’t know why but that phrase kind of stuck with me. I’m kind of like, ‘okay, like we got this, we definitely are on our path, and we’re getting things done’. And I also wanted to mention, one of the dare I say annoying things about physical therapy is the equipment that they use for physical therapy is incredibly expensive. I mean, not everyone, including ourselves, can afford a mat that might cost 1000s of dollars to do physical therapy. And I think this is where you get to become creative in creating a physical therapy environment for your child. I might not be able to purchase an approved gym mat for $2,000 to work on her balance, but I have a mattress a few foam cushions on a sofa that I can put on the floor and I can have her walk from one cushion to the other we can play the floor is lava in our living room. I mean, there’s activities that we’re able to do to mirror the very expensive components and equipment that we would encounter in physical therapy. It doesn’t mean that we can only work on physical therapy in the PT office itself.

Lia: If any of you guys are handy or crafty people out there, I know Matt and I have looked into building some of these tools ourselves. For example, the platform swing that is super expensive. A platform swing runs at least $300, on average for just the swing and some rope. It’s honestly pretty overpriced, in my opinion. But there are YouTube videos out there that exists that show you how you can make your own platform swing and like-

Matt: something like $50 or less or something.

Lia: Yeah. So if you feel comfortable with, you know, arts and crafts and handyman work, then I would just encourage you to look on YouTube and Google some of these resources if you feel up to it, because it’s honestly a much cheaper alternative.

Matt: Right? And that way, you won’t break the bank trying to support all these therapies. You’re working smarter, not harder.

Lia: And that’s another reason why Matt and I actually decided that of all the therapies, this was the one that we decided to scale back, because with the time management issue, we weren’t able to have enough resources to be able to take her to all of these therapies. And although we feel that she definitely still needs physical therapy, we felt comfortable enough in our ability to recreate these activities at home. So we have tunnels that she can go through, we have stairs that she can work on climbing. And another great solution is if you have a local playground, if your child is younger, there’s usually the younger area. And then if your child older, there’s usually an older playground area, that’s great for makeshift PT. Like most of the activities, there are climbing activities, crawling activities, jumping activities, there’s so much available there, that is essentially what you would do in physical therapy anyway. If you have an older child even older than that, like 15, 16, 17 those kids, you might want to be able to bring them to places like Sky Zone, or some other areas that are for the older audience that have a lot of that jumping and trampolines and all sorts of stuff there. So that’s kind of like their equivalent of a playground.

Matt: Or I think of the the, the bouncy houses for like, Halloween or whatever they have, like they set up sometimes like the bouncy houses or whatever. But obviously I mean, that’s like a, an off time, you can’t bank on that.

Lia: Actually, I will say one of the things we did do as a result of having to cancel physical therapy is we did actually buy an indoor bouncy house for her.

Matt: Oh, that’s true, I forgot that.

Lia: So we did actually purchase one of those, because one of her struggles is her inability to learn how to jump. And so we got a bouncy house, and it’s indoors. And she’s able to practice on that. We also got a tricycle for her to practice the motor planning. Basically a lot of autistic kids struggle with motor planning, which is kind of getting your brain to communicate with your body. So if you say ‘I want my feet to pedal’, it takes a little bit of work for your brain to get the signal to your feet to actually pedal a bicycle. So that’s something that they work on in physical therapy as well. But you could easily get a bicycle at home and do that with your child at home.

Matt: And I think we also had the conversation with our physical therapist as far as what activities can we work on at home. And I mean, she was fantastic. She basically provided us a list of how to work on such activities to improve core strength, balance, whatever we were trying to improve from home without all the equipment that they have in the office.

Lia: Yeah, she actually was the one who let us know about that bounce house in particular. If your child is beyond that infants and toddlers age where they’re not able to get access to that physical therapist, they may be able to get it through the IEP and the local public school system. I had don’t have experience with that so I’m not sure if they’re able to consult with you. But my suspicion is they probably can, you can have a conversation with them about a kid’s specific challenges and see what they might recommend for you to purchase at home to work on. Otherwise, if that’s not an option, you might want to consider just going to a physical therapist for like one or two sessions, just so that they can evaluate your child observe your child. And then you can ask them, what are some recommendations I can have to do this at home because I’m not really able to bring them to physical therapy consistently. So those are some options as well.

Matt: Yeah, and overall, I think physical therapy was very beneficial for the groundwork, and the foundation of getting us started heading in the right direction. I mean, we wouldn’t have known many of the areas that we needed to even work on without having consulted with a physical therapist in the first place.

Lia: I definitely would say if you’re considering physical therapy, if you’ve been referred to physical therapy, if your child is struggling with any sort of gross motor issues, I would 100% recommend that you get your child evaluated with a physical therapist, see what they have to say. If they do encourage you to do physical therapy, I would do it for at least a month to get an idea of whether or not you think that’s something your child would benefit from. And if you feel like financially, you can’t really handle it or you don’t have the time then just consider doing it at home after that point. But I would definitely give physical therapy consideration if it’s something that’s already on your radar.

Matt: And I would also add to keep track of how many sessions you’re going to for physical therapy. I know for our insurance company, they had a set number of how many sessions we were actually allowed to partake in before the bill would actually come fully to us. And we wouldn’t just be paying the copay, we’d be paying the the entire balance of the session. So definitely stay in contact, more so with your insurance and the front office to have them notify you how many sessions you have, and just keep track of that. And then when you do finish the set series of however many sessions your insurance will allow, then you can either have the conversation with a physical therapist, or if your insurance will allow the habilitative shift, I would definitely recommend that as well if it’s still needed, but that’s definitely something I would keep in mind and don’t go into this blindly. Otherwise, you might be getting a bill for much more than just the copay.

Lia: Yes, definitely make sure that whenever you go to your therapy sessions, whether it’s PT or OT, or whatever it may be, make sure you let them know in advance, let me know when my insurance is no longer billing this so that they don’t just keep billing you because you will get billed the entire price. And it gets really pricey really fast. I mean, hundreds, if not 1000s of dollars, so definitely do that. The other thing that I want to add on to what you said there is when it comes to the habilitative services, what we ran into was with the speech and occupational therapy, it was covered unlimited sessions with habilitative. However, physical therapy was not covered. And the reason our insurance said it wasn’t was because of the facility that was doing the physical therapy. So for some reason, they wouldn’t qualify our particular facility as one that counts for habilitative. But the other facility that we had that was doing the OT and the ST did count, so you might want to get in touch with the insurance company and the facility in advance and see if they are one that qualifies as habilitative. If not, I would look into other physical therapy clinics in the area that do.

Matt: I think one of the reasons why is because our physical therapy was outside of the Autism Center facility itself.

Lia: Yes, the the main issue with that is the insurance will only cover it as habilitative if you can prove that the reason they go into physical therapy is directly related to their Autism Spectrum Disorder. Our other clinic was an autism clinic. So they knew by default, all the therapies there were meant for autism. This clinic was a generic rehab facility clinic, and so they did not have an autism code in their medical code system. So you have to make sure wherever you go, they have an autism code for habilitative physical therapy. So that’s pretty much all we have for today’s episode.

Outro
Lia: To recap, in this episode, we discussed how physical therapy can help your child work on balance, core strength and coordination among other key areas, as well as how you can recreate physical therapy at home through use of items such as tunnels, bounce houses, playgrounds, or other creative means. Thanks for listening to embracing autism. Tune in next time when we will deep dive into all things speech therapy and answer questions such as, how can my child benefit from speech therapy? What are some forms of communication my child may be taught? And will my child learn to speak? This has been Embracing Autism.

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References
Create your own Platform Swing

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Occupational Therapy
Show Notes for Embracing Autism Podcast — Ep. 107

Intro:
Lia: In this episode, we focus on what you can expect at occupational therapy and touch on the common reasons your child may be referred as well as discuss examples of activities your child may work on during their sessions.

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

Matt: And I’m Matt!

Lia: And each week, we will discuss our journey of 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 I wanted to do an episode on occupational therapy as our first therapy that we are going to review because we actually found occupational therapy to be the most beneficial of all the therapies our children have done. Both of our girls were in occupational therapy for similar reasons, and also slightly different reasons. We mostly put them through it because they had fine motor delays, and one of our children had hypotonia, which is low muscle tone. So she needed it for that as well. And most importantly, I would say they went there primarily for sensory integration, right?

Matt: Yeah, I think it was a combination of what actually got us referred for our oldest daughter, I remember, she was having trouble. I think we first started with eating food, feeding therapy. And I think that’s what first got us kind of on the list to take part in OT.

Lia: Yeah, so OT is a common abbreviation for Occupational Therapy. And just in a little bit of a nutshell, Occupational Therapists essentially work with both children and adults that are autistic. And what they aim to do is help them better perform activities that are part of daily living and daily tasks. So they might work towards a bunch of different goals that are custom tailored to your child’s specific needs. And this could be something as basic as improving their handwriting to help them out in school, or some play skills to help them socialize with other children to things like sensory integration, which is what our children focus more on. And they also try to help the child improve their ability to participate in activities of daily life. So that might include anything from being able to complete their schoolwork or being able to brush their teeth, or tie their shoes or anything like that. They give a holistic approach to how to get your child to successfully go through life through various components. So including a little bit of gross motor, fine motor, sensory integration, and all sorts of things like that.

Matt: I would say it’s interesting, because it seems like OT is kind of an overview of a combination of multiple different therapies. So we would have components that would probably touch on physical therapy, as far as kind of working with, like the swing, for example, because our daughter had low muscle tone. So it kind of worked in a little bit focusing on some of the core in that component. It also touched on some of the speech components for speech therapy as far as having her requesting things as well. And then even I think we had thought about that it also brought in the floor time therapy as well. So it seems that it is kind of a broad overview, incorporating many different therapies. But then at the same time, it is very selective on individual components that are important for whatever your child is struggling with at the time.

Lia: Right. So what’s interesting about occupational therapy is, like you said, it does overlap a lot with other therapies. So it overlaps a little bit with speech therapy, it overlaps a little bit with physical therapy. And it overlaps with Floortime therapy, which is an alternative to ABA therapy. And the reason though, is because there are components that are similar, but OT tends to do a more laser focused assessment of that area. And it tends to be more specific to the sensory integration aspect of that thing. So for example, physical therapy; in physical therapy, they might focus more on gross motor activities, and they might put your kid on a swing, right. But in occupational therapy, they will also put your child on a swing. The difference between occupational and physical therapy, though, is that the occupational therapist is looking more for sensory regulation input or vestibular input, which is basically they’re putting your child on the swing to help them with their sensory integration. So if your child needs more sensory input, because they are under sensitive, they might put them on the swing to get that sensory input, whereas the physical therapists would put them on that swing to help them with like, for example, core muscle strength or something like that. So they do similar things, but they’re looking for a different outcome, if that makes sense.

Matt: Okay, yeah, that’s a good clarification there.

Lia: It gets tricky because they do do a lot of similar things. So in sensory, they also do some kind of core stabilizing activities. So one of the things that our child did is they had these little suction cups that you might use to pluck off of window. And they were working on fine motor skills. And so she was learning on doing the pincer grab to be able to grab it and pull off the suction cup from the window. But ironically, they also use the same thing in physical therapy, but for a different reason. So it does overlap.

Lia: So in occupational therapy, they have a bunch of different focuses, one of them for us was due to our first child’s hypotonia, which is low muscle tone, that results in weak muscles. And because of that, she had difficulty with body posture and being able to sit properly and things like that. She had difficulty feeding herself because she couldn’t quite work a spoon or utensil very well. So in occupational therapy, they were finding ways to help her accommodate and work more efficiently with being able to, for example, feed herself.

Matt: And I think it even went beyond that. So I mean, when we think about feeding ourselves, we must think of the, ‘Okay, can I use a spoon or fork or my hand to put the food in my mouth’. But even once the food is in your mouth, we still had the Occupational Therapist actually look at how she was actually chewing the food. From the very start, she preferred very soft foods that were kind of bland. And then even then, we weren’t really sure if she was using her kind of back molar, where her molars would be- to kind of chew the food. We thought she was just chewing with her front teeth. And we had to work with the occupational therapist to make sure that she was actually chewing a little bit tougher foods, like chicken nuggets for example, that she’s actually using her back teeth actually chew and grind the food a little bit better.

Lia: Yeah, we were having a hard time because she didn’t technically have the back teeth. So we don’t know…she was gumming her food. And that was something that we wouldn’t have caught if it wasn’t for Occupational Therapy. So the Occupational Therapists, they basically were able to see that she did in fact, have hypotonia. And they saw that it was actually affecting her ability to eat, because low muscle tone affects different parts of your body. And one of them was her jaw. And they said that they could kind of tell because she had kind of chubby cheeks on the lower jaw area, which meant that those muscles weren’t really being worked efficiently. And they found out that essentially, when she was trying to chew the harder foods, she had a harder time because her muscles weren’t able to do that as efficiently. So they gave us a bunch of tips, I remember one of the things that they said was getting her to chew on chewy tubes. And they were telling us to do like a daily activity at home, where you would take a chewy tube and get them to bite on it from left to right all the way across. And just get her to practice using those muscles in her mouth.

Matt: Right. And then even as far as her being able to use a utensil to feed herself, we were having trouble with that, because we would have a standard spoon that’s straight. And she wouldn’t understand if I turn the spoon, I can get it in my mouth instead of just smashing it into my face and having all the food fall off of it. So we had to work with her very slowly to transition as far as being able to turn the spoon. And we actually went out and had gotten some specialized spoons that you’re able to bend. So we’re able to bend them at a small angle, which allowed her to scoop the food and then she didn’t have to turn the spoon as far as she normally would with a regular spoon, she would only have to turn at a fraction of a degree. I’m not sure I don’t really explain that-

Lia: What it is, is I actually had the idea of the spoons, because I had seen them on Amazon at one point I thought it might work out. So what we did is we got these spoons that bend and because you can bend them in increments, you can essentially start with a very, like almost 45 degree angle bend and gradually straighten the utensil until she learns to turn it the proper direction. So the issue that she’s having and still continues to have to this day was a motor planning issue, which they also work on in occupational therapy. And the motor planning is basically having a difficulty in being able to initiate movements with your body. So it’s like you have the idea in your head, but you have a hard time initiating that movement. So in occupational therapy with the feeding therapy in particular, we were practicing on initiating that motor movement of picking up the spoon, scooping some rice in it, and then turning it and bring it towards your mouth. So if you think about that, for us, that’s really easy and kind of instinctive but it actually has a lot of steps. So we worked through the OT to gradually get her step by step to be able to do that. And now she eats with a spoon like a pro.

Matt: Right and I think the helpful transition that we started off with at first we would be feeding her with the spoon, then we’d be holding I think — what you hold her hand with the spoon?

Lia: Yeah, I think they call it fading.

Matt: Okay, right, and then you move your hand back. So you’re holding her forearm as she’s holding the spoon. And then finally, I think you’re at like elbow or something. So she’s doing the majority of the work and you’re just kind of guiding. And then from there, basically kind of a hands off, and then she’s kind of flying on her own like a baby bird.

Lia: Yeah, so that technique is used a lot in occupational therapy. It’s like a prompting, like a physical prompting to help them kind of get it going. And then you gradually fade out until they’re doing it on their own. So for her occupational therapy initially was mostly focused on feeding. But the feeding wasn’t just the fine motor skill, it wasn’t just like the motor planning issue. The other issue with the feeding for her was the sensory component, where she was very much focused on specific textures of foods that she could do. She really liked carbs and things that were kind of like plain or crunchy. So feeding therapy also integrates helping the children expand on that sensory aspect as well.

Matt: So it was interesting, because both of our kids actually had feeding concerns, but they were kind of drastically different. For her, it was kind of the bland foods, and she didn’t want really much kind of exploring new flavors and things. And then for other ones, she didn’t want solid food for the longest time. And I remember it was quite a struggle just to get her to try and eat anything — it was very limited. But it’s just interesting, because each of the occupational therapies is tailored very specifically to the individual child. And it’s not just the standard ‘okay, let’s go on a swing. And let’s see how things go’. It’s granular, they’re looking at the very specific struggle that your child has, and working with them on that, which I thought was fantastic.

Lia: Yeah, that’s one of the reasons why OT is one of my favorite therapies, because both of our children went to occupational therapy. But they both had completely different sensory profiles initially. Now, they kind of overlap, but initially, they were very different. So our second child, she also went to feeding therapy with an occupational therapist, but it was for very different reasons. She didn’t have any sort of fine motor control issues at all. But she was essentially refusing to eat solid foods. So she was on baby food purees for gosh, almost two years. She was basically two; she was eating baby food, basically, up until like, early two year old. And so we were working with occupational therapists, mostly with her to get her comfortable with trying different textures of foods. So we weren’t even worried about the flavors, because it didn’t seem like she had issues with flavors. But she had issues with textures.

Matt: Right. And I mean, that just kind of shows you that it goes beyond just the concept of the physical component of feeding yourself. It also goes to Okay, the sensory versus a puree versus an actual food that you actually have to chew for our other daughter who’s focused on the flavor of the food, but it’s actual food. So it’s just kind of interesting to see how the sensory component kind of plays a factor there.

Lia: Yeah. And the other interesting cross comparison is that our first child had hypotonia. But our second child did not. Our second child actually was gross motor advanced, she actually started walking at nine months old, I think. So she didn’t have any of those issues. But the other thing that we noticed that was also kind of opposite that was worked on in therapy was also their reactions to water. So like our first child, she was a huge water-baby. I mean, it was to the point where she’s the type of autistic child that you really have to watch around bodies of water, because she’ll run straight to it, she’ll go into the beach or the ocean, completely disregarding any danger. But our other child was terrified of water. And we we didn’t really know it until that one day where she accidentally spilled a cup of water on herself.

Matt: Right. And I don’t think it actually clicked that day, either that that’s what the situation was. She had picked up a glass of, I think ice water that you were drinking or I was drinking, and she accidentally tried to drink it herself and spilled it on her entire front. And she just froze like a deer in headlights. And we thought it was just she was just shocked that she had spilled the water. But I think it took a little while for us to realize it was the water and not necessarily that she was just in shock. It was she was just terrified of water.

Lia: Yeah. So at our last place, we had a shower that didn’t have a bath. So we had to have her take showers essentially. And I remember the bottom of that shower had a pebble floor. And because it had a pebble floor, it was really bumpy and honestly I didn’t even like it. So when she went in there, she would kind of walk with her hands up, look down on the floor and just kind of freeze when we would give her a bath/shower. And I always thought that it was just the textures of the rock that she wasn’t liking. So when we moved to a new place, and we no longer had that texture, we had a standard smooth textured tub. I was really surprised when we then tried to give her a bath there. And she was in like full blown panic. Like she, as soon as she heard the water rushing into the bathtub, she would be climbing us and trying to climb out, she’d be freaking out like she did not want to touch the water at all.

Matt: Right? I remember it took at least a couple of months working with the Occupational Therapist kind of slowly transitioning, kind of changing one element of bath time until she was actually sitting in the bath and didn’t have any trouble from there. But remember, it’s a very slow approach. It’s first you’re getting her in the bathtub without any water, just to kind of get used to ‘Okay, this is the dimensions of the bathtub. And this is how everything works.’ And then slowly getting her exposed to ‘Okay, this is water, it’s safe.’ We actually found out that we had to I think — what, change the temperature?

Lia: We had to make it lukewarm. So it wasn’t either hot or cold. She just wanted lukewarm.

Matt: And then the other component was she would be taking bath time with her sister and her sister loves water, so she’d be splashing. So we had to remove her sister until we kind of got her used to just being in the bath on her own. And I just remember, it was very baby steps until she’s actually able to be in the bathtub. And I mean, now thankfully, I was laughing the other day, when we were giving them a bath. They’re both in the bathtub kind of lying down.

Lia: Yeah she goes nuts now.

Matt: Yeah. So I mean, thankfully, we were able to get over that hurdle. And I mean, thankfully, she’s okay with doing bath time with her sister. So we kind of were able to get over that.

Lia: And that is why we are such huge fans of occupational therapy because with our kids, they went into occupational therapy having pretty significant issues. I mean, they weren’t eating, we couldn’t get them to do any sort of fine motor type of tasks correctly, we couldn’t get them into the bathtub, at least for the younger one. With the older one, we couldn’t get her away from water. So it was dangerous. They were both elopers, we had all these issues that for the most part have been primarily resolved. They still go to occupational therapy, because they still have ongoing issues. And I know the Occupational Therapist said that for the youngest one, her sensory needs are so extreme that it seems like she might need OT for a large portion of her life. But just the progress that we’ve seen so far that now she goes from terrified from the bath to being able to do it. It’s been a great help for us. But the one thing that I did learn from occupational therapy is you really need to be patient about it. Because for example, the water thing, it took us at least a month, if not a month and a half of slow starting off giving a bath with no water and just using baby wipes while she’s in the bath, to get her used to the tub to then adding toys to then adding a fraction of water just to get wet and just gradually increasing the water over time to get used to it. So it’s not like a quick overnight fix.

Matt: I think that honestly, the thing that I love about our particular occupational therapist is she’s very playful with the the new thing that she’s trying to expose her to. So she was giving us advice because when she was playing in the rain, she’d freeze and be terrified and not move, she’d just stand still in the rain as rain is pouring down on her. And she was giving advice as far as how to get her to be comfortable with the rain. So she would say okay, take her out with like an umbrella, and then kind of move the umbrella and kind of say, ‘oh, we’re getting wet and move the umbrella back’. So you turn it into a fun experience that you show her you’re perfectly safe. I’m taking care of you I am well aware that it’s raining out. I know there’s sounds that might be scary that you’re not used to the loud sound of the rain, I am just kind of doing it in a playful way. And I think we’ve seen kind of throughout the process that any new experience that we’re trying to expose her to, she is doing it in kind of a playful way. So our daughter is kind of interested or she’s, she’s curious, at least I would say at least to try the new exposure just a little bit and then keep going from there.

Lia: Yeah, and a good OT will gamify therapy with your child. They’ll make it fun. They’ll make it light hearted, and they will let your child lead. That’s why we mentioned Floortime. A lot of occupational therapists are trained in the floortime method, which is, again, our preferred alternative to ABA therapy. And it’s basically kind of like a child led therapy. So it means that the occupational therapist is not forcing your child to do anything that your child doesn’t want to do. There’s no drilling, nothing like that. They kind of just feel out what your child likes and if your child is attracted to a particular toy or anything like that, they’ll just use that moment as an opportunity to teach something to your child or help them with a certain task. They don’t ever tell the child what to do. They just give them a bunch of options and whatever the child chooses is where they add. So that was one of the reasons I really liked that.

Matt: And I think it’s an ongoing therapy for them basically, just because I mean, yes, we were able to get over a few obstacles that we’ve been struggling with as far as the food and the water. But I mean, we’re still working with our occupational therapists for our youngest one as far as putting on and taking off shoes, socks, kind of getting dressed. And I mean, I think even for the older kids, it would still play a relevant role in a day to day life exposure.

Lia: Yeah, so some possible goals that they might do in occupational therapy, they range from things like academic goals. And these can be things like how to use scissors properly, how to print letters legibly for your homework assignments, how to use a paintbrush correctly, so that you can participate in art class in school, to things that are more like daily living. So that’s more like how to brush your teeth independently or button, your jacket, how to zip up your coat or tie your shoes to be able to do it on your own without support. But the third area that people don’t think about either is social functioning. So some of the things that they help or focus on is some autistic children lack imitative skills, which means usually a baby has like mirror neurons, which means like they mimic what they see. So when you’re doing a social interaction, a lot of children will learn just by watching their parents or siblings do something, and then they’ll mimic that that’s something that tends to be lacking in autism. So in occupational therapy, that might help children learn play skills and other skills that normally a child doesn’t have to be taught, they just learn. But again, since that’s difficult for the autistic child, they might get that through occupational therapy. And the other thing that they do is help children engage in socialization by teaching them how to engage in physical play activities in group settings. So it’s not social in the sense that they teach them how to communicate with another child specifically, but they teach them things like, ‘Oh, this is how you play, throw and catch’. Or ‘this is how you jump on a trampoline’, or ‘this is how you use a swing independently’. That way, they are capable of going out to your local playground, and they can play with other kids, because they can do all those things independently.

Matt: And I guess I felt that when I learned that I kind of felt dumb, because I always thought, okay, socialization, are you able to talk to another kid? And that’s kind of it. And then I was thinking it was like, Oh, no, okay. I mean, if a kid invites you to go on the merry-go-round, for example, and you can’t, because you lack the various components of sensory components to being able to climb onto the merry-go-round, hold on and be okay, spinning around, then you’re not able to socialize in the same way that a peer might want you to; I mean, it’s the same thing. When we go to the park we’re kind of on top of our girls — because they have struggles with spatial awareness and their judgment might be a little off — making sure that they’re not falling off of the playground getting hurt. We have to make sure that they see that there’s a step down, and that they actually are stepping down holding a railing or something. So it is very helpful to know that that is one of the areas that they focus on moving forward.

Lia: Yeah, actually, that’s great that you mentioned that because that’s another fantastic thing that we’ve gotten from OT is they do work specifically on spatial awareness and coordination. And they will do it in specific contexts that are relevant to your child like playing on a playground, how to work on spatial awareness while swinging or while climbing. And when they do that, they actually give you a little bit of bonus physical therapy in there by accident, just because you kind of have to have physical work when you’re climbing things. But they also work on emotional cognitive skills in the sense that they’re trying to train your brain to be aware of your spatial surroundings. So like one example is like our kid, we initially brought her to the playground one time, and her spatial awareness was so off, that when she went running down the playground equipment, there’s actually a part of the playground that is like the gym that’s actually opened, because there’s like, some sort of climbing equipment there that kids use. But she didn’t realize that it was open. So she just kept running and just kind of fell right off. And it seems obvious to somebody like, ‘oh, there’s a giant gap here. Obviously, you’re gonna fall if you go through it’, but she had no sense of spatial awareness. So she just kept going with the faith that something would be there to catch her.

Matt: And I remember both my parents had gone with me to the park with the two girls. And I remember them not thinking about it at first, but then they became ultimately terrified because — and they told me later — they were saying that she wasn’t noticing that there were openings that she could easily fall out of. So they became — I mean, they were going to the park similar to how they would with me when I was younger — and then they realized like, ‘Oh, no, okay, I need to make sure I’m actually paying attention to where all the different openings of the playground are’. If you’re going on an elevated ramp, for example, making sure that you don’t fall off. So I mean, it is just another element to just consider if you’re with people who don’t necessarily live that on a day to day that they are aware that this is a struggle that some children need to work on.

Lia: Yes. So that’s definitely something that our eyes were opened to during occupational therapy. And then some of the ways that they might help your specific child out as well can be simple things like helping your child strengthen their hands, their legs, their core, they might do this through different activities that they have for your child that will focus on these areas, they might provide your child with tools that can help them like weighted vests, or let’s say they need like a larger pencil to help accommodate while they work on the fine motor skill. They might do some techniques or give some sort of assistive devices to help lift, focus and make tasks just generally easier. There’s also some occupational therapists that will work directly with parents, that was something that we got to do our program that was extremely beneficial, because the OT would work directly with us, and then show us exactly how we can continue the therapy that’s in the clinic and practice that at home so that we could continue working with our child.

Matt: Yeah, I think it was big and actually, I think it went even beyond the OT. I think if you have a good therapist, and they realize, the point of the therapy isn’t just ‘oh, I want to take your money for the hour that you’re in the session, and then come back and get the therapy next week’ that they actually bring you in and actually show you the different techniques so you are able to continue the therapy outside of it. So you think about Okay, if I have therapy once a week for an hour, versus if I’m basically living therapy every single day, because my parents know how to work with me, because they learned the different tasks I’m working on in therapy, you’re going to cover much more ground just naturally.

Lia: Yeah. So like that was super beneficial to us. And then the biggest thing that I think that we got from there was a really good understanding of the sensory system and sensory integration. They taught us a lot of techniques that were relevant to our specific children. So if they were hypersensitive, or hypo sensitive, which is basically over or under reactive to certain set sensory input, they taught us how to handle it. So things like swinging, brushing, jumping, pushing, squeezing, rolling them on the ground, or slowly exposing them to different sounds like whistles and things like that, we were taught all these techniques to help for things like my child spinning in circles all the time and needing to crash into the couch all the time. They gave us techniques to be able to minimize the spinning because she was getting hurt. So it was really important for us to get all those techniques, especially with our second child who is extremely hyperactive to help her get the sensory input that she needed. And now she’s much calmer, because she knows how to get that input.

Matt: I think it was a real game changer because I don’t have a problem as far as stimming. But when it becomes dangerous, and you’re worried about them getting hurt when they are like our youngest daughter spinning around or just running and falling on the ground or running into objects, I mean, that might not be soft. It kind of takes it to another level. And you you have to think okay, how can I use her stimming in a way that won’t get her hurt? And that kind of touched on, I think, was it called heavy work?

Lia: Yeah, heavy work.

Matt: That we had kind of worked with our occupational therapist on as far as trying to get her to do, I guess work in a way that slows down her motion. So she’s actually doing something that causes a lot or takes a lot of energy to do at a slow pace. I’m not sure-

Lia: Yeah, yeah, no, that’s good. It’s like putting books in a basket and having her push it because she would have to exert a lot of energy to push heavy, you know, well, heavy to her. It’s not very heavy to us, because it’s for a toddler, she would have to exert a lot of energy to do that task. So it’s called heavy work, because it helps her do that. So one of the things we did is like we have this spinning Lazy Boy. And I mean, it’s really not that heavy, but for a two year old, just pushing it to spin it. That was perfect for her because she got both the spinning sensation and the heavy work, and it would calm her down so she wouldn’t be running around and falling. And one of the major things that OT helped us with this was actually her head banging behavior. So she used to head bang and we were really worried about it because we couldn’t really stop it. And we realized that it was happening at night. So we weren’t even aware of it until we caught it on camera one time. And we learned that essentially it was sensory seeking behavior and through OT and the tools that they gave us we were able to address it. So techniques they told us were put tight fitting clothes on her put like a little hoodie on her head or like little cap, give her socks, give her mittens give her sensory input during bedtime and put like pillows around her bumpers, things like that. So that when she’s in bed, she has sensory input and doesn’t go seeking it through head banging. And as soon as we did that, it stopped. Like, it took a little bit of a transition time where she was doing a little bit here and there. But eventually, it just completely stopped.

Matt: And I think even somewhat recently, as well, we actually moved like a little bouncy horse into her room. So at night, if she still if she wakes up in the middle of the night, we noticed that she would be crying and calling out for us because she wanted to be like rocked in a rocking chair. And it would be like midnight, one in the morning. And we were working with our occupational therapist, because we’re like, she’ll wake up and be crying for 20 minutes, half an hour, just straight, just requesting to be rocked. And so she had recommended, because she knew that we had a little bouncy horse, to move that into her room. And we also moved a little plastic slide in her room as well. And we noticed that sometimes when she wakes up during the night, she might get out of her little bed, she’ll bounce on the horse a little bit, but she’s tired. So she’ll kind of just fall asleep right on the pillows on the floor right there.

Lia: Right. So the key was us providing her with alternative avenues to get the sensory needs met, without her needing to have me go in there and bring her to a rocking chair, rock her and give her that sensory input. So by putting the bouncy horse, the slide and this little rocking boat that we had in her room, she was able to learn to self regulate. And these are things that the occupational therapist will work with you and your child to give you techniques on how to specifically tailor those to your child’s. So with that said, again, we think occupational therapy for us specifically was probably the most beneficial, but we will talk about the PT and ABA therapy in future episodes as well, because we do think it’s important to talk about different ones. But we started off with this one because it was definitely, in our opinion the most-

Matt: It’s the MacGyver of therapies.

Lia: Yeah, it’s like the most beneficial, so highly, highly, highly recommend occupational therapy, if you feel like your child needs it or would benefit from it.

Outro
Lia: To recap, in this episode, we discuss various skills your child may work on in occupational therapy to include heavy work feeding therapy, sensory regulation, and particular problem areas, such as head banging. If you think your child may benefit for Occupational Therapy, contact one near you.

Lia: Thanks for listening to Embracing Autism. Join us next time when we discuss physical therapy and answer questions such as ‘How can my child benefit from physical therapy?’ ‘What are some common activities my child may be asked to perform?’ and ‘What are some potential goals?’ This has been Embracing Autism.

Finding the Balance
Show Notes for Embracing Autism Podcast — Ep. 106

Intro:
Lia: In this episode, we discuss the various therapies your child may be referred to after an autism diagnosis, and give tips on how to manage your schedule, as well as what to do if your child appears to hate going to therapy.

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

Matt: And I’m Matt!

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

Lia & Matt: Embracing Autism!

Discussion
Matt: After diagnosis, your child may have been referred to multiple therapies. The most common therapies that you’ll encounter are Physical Therapy, Occupational Therapy, Speech Therapy, and Applied Behavioral Analysis. Now for physical therapy, it’s commonly referred to as PT. This typically focuses on gross motor skills. You might seek out a physical therapist if your child is having trouble going up the stairs, and you need additional support with that. Occupational therapy, commonly referred to as OT, focuses on fine motor and sensory-related target areas. This might be if your child struggles with using utensils, for example. Speech therapy, also called ST, is the focus of speech and language development, teaching communication skills for both verbal and nonverbal, and this might be if your child is having trouble with pronunciation for example. And the final therapy that you might encounter is applied behavioral analysis commonly referred to as ABA. This uses positive reinforcement, strategy, and antecedent behavior and consequences — commonly referred to as ABA technique — to address behavioral struggles.

Lia: That’s just some very basic information about those therapies, we will actually go into more detail about physical therapy, occupational therapy, speech therapy, and ABA in the next few episodes. So if you tune in, we’ll actually give you very detailed examples of what happens during those sessions. But for this episode, we’re just going to keep it a little light and just mention that those are in fact the most commonly prescribed or referred to therapies for autistic children. Usually, we’ll get this referral from either a primary care physician if they’ve noticed that there’s some sort of developmental delay during the milestone checkup. Or you may be referred by your developmental pediatrician who diagnosed your child, if, for example, they were evaluated by an occupational therapist who may have noticed some sort of delay, and then referred you to, for example, occupational therapy. There’s a lot of different ways your child can end up getting this referral, but these are just the most commonly prescribed therapies.

Lia: Now since we will be talking about those things in future episodes, for this episode, we want to focus a little more heavily on scheduling. There’s a lot of common issues that arise with scheduling these appointments and therapies for our kids and we just want to talk about the things that come up the most for us and things I have heard other parents have difficulties and struggles with, and we want to see what we can do to give you guys the best advice and suggestions that we have from our personal experience. Now, probably the biggest complaint that I’ve heard among parents who are struggling to schedule therapies for their children is really the work-life family balance. Most people were saying it was really difficult to get their child to therapy appointments and it was really difficult to make time to go and get them the help that they needed, because they are full-time workers, or they have a really rigid work schedule. And it was kind of difficult to put those appointments in time slots that they would be available to take their kid.

Matt: Yeah, Lia and I found ourselves in this boat multiple times. I think during the peak therapy sessions, it was around four therapy’s a week. During this time, we were both working full time. So we kind of had to divvy it up a little bit as far as who was taking our daughter to what therapy on what day and kind of doing a little bit of tag-team work there. For my job, I was working remotely at the time. So I think on one of the days, we had scheduled physical therapy the same day that we had speech therapy. So I would run our daughter down for her physical therapy. And then I would race home because she would also have speech therapy later in that afternoon, where Lia was waiting at home to take the reins essentially, as soon as we got home with the speech therapy. And if I was late, of course, she would start the speech therapy without me. So for us, it’s really kind of working off of each other’s schedules and trying to find the best solution possible.

Lia: One of the issues that we were having was that when we were scheduling appointments, a lot of the appointment slots were very limited. So we had a choice of maybe two or three appointment slots that we could pick from and when we went to schedule those appointments, we had to make sure that they didn’t conflict with the other appointments. But on top of that, we had to make sure it didn’t conflict with our work schedule. So what I did is luckily at my job, I have two days a week that are dedicated to telework at home. So I tried to make it so that all of my appointments were scheduled on the days that I was teleworking. And then what we did is we split it up so that Matt would take her to one appointment and then while he was doing that, I would be able to set up at home because we were doing a telehealth appointment. And that would get it already so that by the time they got home, I was already situated with the telehealth appointment. And we could just switch straight to that. Now prior to telehealth appointments, because that was just during COVID, we did have some appointments that were back to back physically; what I did with those is I made sure that they were located really close to each other. So one of them was occupational therapy that she had across the street from where her physical therapy session was. And then I called ahead with a physical therapist and let them know that she would probably end up being like 10 minutes late to each of these sessions because that appointment started right after the first appointment ended. And if you talk to your therapist, though, most of these appointments are actually 45 minutes long, but they just build them in for an hour. So they were totally cool with that because they’re saying we don’t use the full hour anyway. So if you’re 10-15 minutes late, it’s not a big deal, as long as you clear it with a therapist in advance. So go ahead and talk to your therapist and see what kind of flexibility they may have. They may be more willing to adjust things than others who really knows until you talk to them. But for us specifically, that was one of the things that we ended up having to do.

Matt: Another approach that you can do is possibly flex hours if it’s acceptable with your employer. I used to be working remote, in which case I would just block out time to take my daughter to physical therapy on the one day a week that it was. This just meant I would work later in the evening and be able to make up my hours at the end of the week. So thankfully, if you’re working remote, you have much more flexibility or should hopefully have much more flexibility with the therapies and schedules. However, right now I’ve transitioned out of that work and I’m in an actual more rigid work environment where I have to be on-site every day. Now, this has created additional complications for us, I was able to talk to my employer and take an earlier shift. So I start very early in the morning, and I get out by around mid-afternoon. So this slightly helps Lia a little bit with trying to get the schedules situated, it’s not as helpful as when I was completely remote, but at least that is one area that I am able to try and modify my schedule to try and accommodate the work life balance as best as possible.

Lia: Another thing that I’ve seen some offices do, but not all offices, is offer evening hours or very early hours that are prior to your typical nine to five job. If you take a look at the schedules at different therapists’ offices, you can talk to them and see what kind of hours they have and if they do offer any of these extended hours. If they do, I would definitely opt for that option rather than going to one that doesn’t offer it.

Matt: As a last resort, you could try and use sick leave for these appointments. However, I think that this should absolutely be a last resort because most employers only have a very small amount of days that you can actually use for sick leave. And even if you start diving into vacation, you’re going to burn through these days very quickly because the therapy starts to stack up really quickly and you might be spending all your leave on just the therapies alone.

Lia: Additionally, if sick leave isn’t an option for you — because I know that’s very difficult for some people to get — there are typically some options with FMLA intermittent leave; this is actually something that I had discussed with my boss as well. So FMLA is the Family Medical Leave Act, and it usually entitles you to leave — it’s typically leave without pay — but it gives you job security. So you can’t get let go of your job while you’re taking leave and you can stack it with things like sick leave or vacation to get paid. So the FMLA, the intermittent style, basically makes it so that you don’t have to use the leave all in one giant chunk — you can use it intermittently. So you can use it basically here and there whenever it’s needed for therapy appointments. That may be an option that you want to discuss with your employer and see if it’s an option. I know technically it’s an option for me, but the reason I decided against it was that you do tend to lose some benefits at work and again, you won’t get your full salary. So it’s not really the best-case scenario. But if you are worried about losing your job and you’re desperate and you need to get these therapies, it is at least an option to consider.

Lia: Another thing I want to mention is what you end up doing really depends on whether you’re a single-income household or a dual-income household as well as whether or not you’re a single parent or a dual-parent household. If you are in a dual-income household, one option that you have that a lot of people actually do take is unfortunately for one of you to stay at home and help your child with all the therapy sessions and then the other one continues to work, that is an option though I know again it’s a difficult decision to make. On our end here, it is actually a goal of ours. Currently, we are dual-income full-time working parents; However, our goal is to ultimately be able to transition to a single-income household so that I can take care of all the appointments and everything that needs to be done. One of the things that you can do like us to try to get to that goal is see if you can find a way to apply to jobs that you can make a little more income to make up for some of that loss. Typically raises don’t go very far, but if you apply to a new job, it’s a lot easier to give yourself a raise by putting in for a higher salary when you move to that job. So it’s kind of like a system cheat that nobody really knows about. But it’s another option to try to do something like that.

Lia: Now, for the single-parent household, it can get a little more complicated, because you may not have that partner to rely on. If you do have that partner to rely on, definitely go for that. Otherwise, you can try to connect with your local community. So maybe with your local church system, if you have any cousins or aunts nearby, or if your mother happens to be nearby, there’s any family or friends available, who might be willing to help you out during that time and see if they are able to bring your child to the appointments. This is something that you will have to grant specific permission to at the facility. So if you have somebody other than the parent, bring the child to therapy appointments, you’re going to have to fill out an authorization form at each clinic. And typically, you’re gonna have to make sure you renew that every six months or so. But it is an option, you can actually have someone else bring your child to the therapies as long as you, of course, trust them, and you have them authorized through the medical facility.

Lia: Kind of along the same lines I’ve seen a lot of parents struggle with how do I bring my kids to therapy, if I have another kid, I don’t know what to do with them. That can be a little bit complex as well. I struggle with that myself, because I have two children who both go to therapies, but they don’t go to therapies together. So I typically have to handle that on my own. There’s a couple of things that I’ve done. Sometimes I will leave one of the kids with my mother who will watch them during the appointments. And sometimes I will honestly bring both of them. And while I drop one off at therapy, I have the other one with me in the car, we go for a little drive, or I might take her out for ice cream or something like that while the other kid is in the appointment. Now if it’s an appointment that you need to be physically present for, some therapists will on occasion, but not regularly, allow you to bring the other sibling in so long as it doesn’t distract your child. I have had some luck with that but I know not all therapists do this. So you’ll have to speak with your therapist specifically and see if that’s something they’re okay with or not. Another thing that you could potentially look into is to see if the local area has some sort of temporary babysitting service in local churches or things like that. I know where I’m at there actually is a local church that does kind of a mom’s day out random drop in for childcare, and they will watch your kid for really low cost while you’re doing whatever you need to do, whether that’s errands or whatever it is, the whole point of it is to help you out while you’re doing those things. So again, check out your local community and see if there are any resources like that they’re available to you.

Matt: And you might have more luck with your boss approving your schedule or a person watching your child on a regular basis if you have a consistent time slot for your appointments. What I’ve done is each week that I would have the physical therapy appointments with my daughter is I would also schedule a month or two in advance. So every Tuesday, for example, at one o’clock I would have my appointment with my therapist. So I could tell my boss that I need to block off this time every Tuesday. I feel like most employers are more willing to make that accommodation. And if you need babysitting, at least it’s at a set time, which would hopefully be easier to accommodate.

Lia: I also tended to schedule near the one o’clock time and I did that specifically because it is close to the lunch hour break. So that’s another technique you can do is keep it close to your lunch hour breaks so that you can include that as part of your time that you need to commute to and from the appointment. Or if you want to include your break, essentially, as part of the time that you’re using for therapy, if your employer lets you do that, I would. I would definitely take advantage of that and just say, you know, I’m going to skip lunch and use that time for the appointment instead. Another thing to consider when you’re scheduling these time slots — so Matt mentioned getting a time slot that’s consistent. So for example, a one o’clock slot, I know I always have therapy at one o’clock on Tuesdays. That’s a really good technique, but you want to also consider your child’s age and whether or not they’re taking naps or whether or not your child, if they’re an older kid, has some sort of specific need at that time that you might be interrupting. So for example, if you have a kid who is really determined to have their Nintendo Switch time at 11:30 every day because that’s their routine and they’re used to it, then you may not want to schedule a therapy appointment at that time because he’s probably not going to be cooperative during the session and he’s probably gonna have a meltdown or be really upset because you disturbed the routine. It’s the same thing with naps. If you have a kid who is on the younger side of things, and they’re still napping like ours were, you really want to be careful about the time you pick for therapies. I know for us when we first did our therapies, it was kind of a ‘you get what you get’. So we took the time slot that was available to us and our child initially struggled a lot. She would kind of just lay down on the floor during physical therapy and she wouldn’t move around. She didn’t want to participate in something — she started crying. And we knew it wasn’t because she didn’t want to do the activities it was just because she was overtired. Once we switched her schedule to align better to her nap time, she actually thrived in physical therapy, she absolutely loved going, she got along great with a therapist, and actually ended up graduating out of the program. So that’s definitely something that can make or break it, I would definitely take into consideration your specific child’s needs for scheduling and try to accommodate as best as possible.

Matt: Now, we’ve been talking primarily if your child has a little bit younger, but if your child is already in the school system, they’re also able to get the therapies given to them while in the regular school day, which wouldn’t disrupt your work schedule. So they’d be able to get the physical therapy, speech therapy, occupational therapy in the school, and it shouldn’t hopefully disrupt your schedule.

Lia: Yeah, the school system will typically already have those therapists available there for you as part of your accommodations if you have an IEP plan and those accommodations, that should be included. But it kind of depends on their specific evaluation of your child and whether they find it necessary for your child. So I’m not 100 percent sure what you would get, it would depend really on that analysis. And it may not agree with what your developmental pediatrician said, because their analysis is a separate one. And they don’t go by your pediatrician, they go by their personal assessments. But it is something you can try and it is during the workday so it wouldn’t affect you whatsoever and it would just be while they’re at school. Now that is also something that applies with ABA facilities. Although personally, I am not someone who does ABA therapy — and I’ll talk more about that in the ABA episode — it is something that is available at schools because the ABA therapists will typically come to the school and they will do it in that way. Sometimes they’ll pull your kid out, or they might be involved in the school itself while your kid is in class. Different places do it differently but that is another type of therapy that goes to the school as well as the home. So there are options there.

Matt: Now, if you’ve already tried some of the things we’ve mentioned, as far as trying to flex your time at work, trying to shift to a fully remote job, finding family friends to take any child to therapy or babysitting, and it still doesn’t work, another approach that you can try is to see which therapy is most critical and what therapies might be able to be worked on at home. So in our experience, our daughter had gone through multiple physical therapy sessions and had improved but we weren’t able to accommodate with our schedule her PT sessions anymore. So what we were able to do was talk to the physical therapist and try and find things that we were able to work on at home, and then work with her on those areas. So an example was she needed to work on some of her core strength. So we were able to use cardboard boxes to create a tunnel for her to crawl through so she would still be able to have small activities that would have still been fitting in the physical therapy realm.

Lia: The other thing to consider there is prioritizing which one of those appointments is the most important for you to keep and which one is worth doing at home. So there are some things that you can do at home. For us physical therapy was one that we actually thought we could do at home because it was one of her strength areas. Out of all the therapies that she had, this was the one she was making the most progress with, we didn’t want to just cut her off cold turkey. So initially, we just started doing instead of every week, we slowed down to every other week. And we worked closely with our therapists to make sure that the therapist was in agreement that ‘yeah, these are some things you can handle at home, I feel comfortable with releasing her and discharging her out of the program’. So you can talk closely with your therapists, get their feedback and see what they’re thinking. And then specifically ask them, say, ‘I can’t really manage all of these appointments. I’m thinking of scaling back on a couple of them. And this is what I’m considering what do you think’. And then while you’re having that conversation, say, ‘I am absolutely willing to do some of these things at home, what are some activities that I can do that kind of imitate the therapy that she’s getting here?’ A great therapist will help you with that. Our therapist actually specifically looked for things that we could purchase to have at home to help her. So one of the things was, for example, an inflatable bounce house that we got her. She struggles with jumping and she’s always been delayed in jumping so that was an item that they referred us to and I was able to purchase it and so now at home when we do at-home physical therapy, we might have her bouncing in the bounce house. Another one for her was working on steps. Nowadays, every household has steps you don’t really need to go to physical therapy for that. So we just practice marching her up and down the stairs and using the techniques that physical therapists gave us. So there’s really a lot of options for you to do this. And it’s the same with occupational therapy, speech therapy, all of these therapies have things that you can do at home, just talk to your therapist prioritize based on your needs, and ask them how you can make some sort of therapy room at home where you can practice some of the techniques that they’re doing during the therapy sessions just at the comfort of your home.

Lia: And another thing to consider that has been especially helpful now during the covid 19 pandemic is telehealth options. This wasn’t really an option prior to the pandemic, but now it’s actually available pretty widely. So I have taken a lot of advantage of telehealth. I have done as many of these appointments via telehealth as possible with the exceptions of the ones that I think they really need to be present for. But when you do telehealth, you have the convenience of reducing the time that you need to take off because you no longer have to commute. You also have the flexibility of scheduling that time around your breaks. So if you happen to work close to where you live, if you’re the type of person that can go home during a lunch break or something like that, that is something that you could easily fit into your work schedule since most of the appointments are no more than 45 minutes long. The other great thing about telehealth is it kind of coincides with transitioning over to at-home therapies. So if you did want to eventually try to do some therapies at home by creating your own little therapy nook- like we have in our basement, the telehealth is a great transition way of doing that. It’s kind of like taking off the training wheels of going into a physical location for therapy versus bringing that therapy experience back at home because you’ll have the therapist watching and observing and telling you what to do with your child. But at the same time, you’re practicing doing it. So later on, if you transition out, you’ll already have done it, you’ll know what it’s like. And you can keep doing that without having to actually schedule appointments from that point on.

Matt: Another thing to consider is if you’re having trouble trying to schedule multiple therapies in different areas, and if your child is still under the age of three, is you can lean on the infants and toddlers program. I know for our local school district, they were able to, at our request, bring out a physical therapist, or a speech therapist whenever we’d meet with infants and toddlers, which was I think, every other week. So rather than us trying to schedule a separate physical therapy appointment, we were able to work with the infants and toddlers and have one brought out to your residence which could help with your scheduling struggles.

Lia: The great part of that is that you get it on an as-needed basis. So if you feel like your kid needs physical therapy one week, but not the other, you can go and get it through your infants and toddlers program, which is at no cost to you. The other great bonus of that is at least with our local program, we are able to schedule both a physical therapist and a speech therapist at the same time and the same appointment where they’ll both kind of talk to me back and forth in one group that will knock out an additional hour of therapy. So instead of having to see an hour of occupational and an hour of physical or an hour of speech, you can have one 45 minutes to one-hour slot where you touch base with both the physical and occupational therapists in one sitting.

Matt: Now for us, we’ve tried to focus on combining as many therapies as possible. We’ve really tried to focus on the concept that quality is better than quantity. So by us focusing on the areas that she really needs to improve, we feel that she is better off improving overall, as opposed to the number of therapies we could schedule. So if she’s not necessarily benefiting as much from physical therapy, we tried to work on physical therapy at home if it was still needed, rather than scheduling that time slot and overwhelming ourselves in the process.

Lia: And also keep in mind that it’s not just the parents who get overwhelmed in this, it’s actually the children in many cases who are feeling overwhelmed as well. We want to make sure that your kid is actually thriving in their therapeutic environment, that they actually enjoy where they’re going. And if you see that they’re having a really hard time or they meltdown every single time or they just aren’t enjoying the process, that to me is a sign that they probably shouldn’t be there; you might want to consider doing something else. I know for us, our child initially struggled really hard with one of her occupational therapy sessions. I always say give it the good old college try, give it two, three weeks or sessions of trying it out to see how she does. But if they are still struggling and not really wanting to be there, maybe consider different therapists and see if they have a better chemistry match. If that still doesn’t work, and your kid really just can’t stand these therapies, just consider cutting them and trying to find an alternative, whether that’s doing it at home or doing it through some sort of floortime therapy that you can do through play. There are other options, there even are actually things called play therapy that you can try as an alternative. These are things that you can essentially watch videos of on YouTube if you need to, and just try to do it at home. You don’t even have to include a therapist. But always I would recommend that you at least consult with one so that you can get an idea of what your child is specifically benefiting from and then see how much of that you feel like you’re capable of doing at home after hours when you’re not at work.

Matt: And I completely agree if you see that your child is getting extremely frustrated and downright hates therapy, I would take a step back because the quality of therapy that you’re going to get for your child isn’t going to be worthwhile to continue going there in the first place. It’s always focused on trying to help your child move forward. So we need to make sure that we always keep our child’s emotional state of being in mind.

Outro:
Lia: To recap, In this episode, we discussed why more therapy isn’t always the best option and how switching to telework, flexing your hours, or relying on a caregiver can help you better manage your therapy schedule. Thanks for listening to Embracing Autism. Tune in next time where we will go into a deeper dive into what occupational therapy entails and answer questions such as, ‘how can my child benefit from occupational therapy?’ ‘Are there common target areas for autistic children?’ And ‘what kinds of skills can I expect my child to gain?’ This has been Embracing Autism.

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Resources:
Family and Medical Leave Act (FMLA)
Home of DIRFloortime® (Floortime) – What is Floortime?
Floortime Play Therapy for Children With Autism