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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 headbanging. We will also touch on research surrounding the relationships between the vagal nerve, synesthesia, and therapies that may help.
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.
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
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