Seeing Through A Different Lens
Show Notes for Embracing Autism Podcast — Ep. 202

Introduction:
Lia: In this episode, we focus on the sense of sight and how it may be impacted by autism. We discuss visual sensory symptoms and related visual impairments.

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

Lia: I’m Lia!

Matt: And I’m Matt!

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

Lia: This is —

Lia & Matt: Embracing Autism!

Discussion
Lia: Hey everyone and welcome to the episode where we are going to be focusing on our first sense, which is sight or vision…kind of —

Matt: All things sight-related.

Lia: All things with your eyeballs. So the reason that we chose to go with sight first is essentially because I think that was one of the first ones that we noticed with our kid, she definitely had some visual stimming behavior.

Matt: Yeah, so probably the thing that stood out the most that we thought that at least gave us a red flag that she might have some type of sensory, oversensitivity-

Lia: Over-sensitivity? No, under-sensitivity, because if she’s seeking it it’s under sensitive, but it literally would remind me about the moth attraction to the flame, you know, like she literally was like that.

Matt: And it pretty much was, you turn on a bright light, and she was attracted to it. And then when you turned it off, she’d still be trying to get to it.

Lia: Yeah, actually, we had to hide — we have some of these like emergency LEDs in the house for like, when your power goes out, and you push the button, it’s got some bright LED lights that you can put around your house. We ended up having to hide them because she was finding them and turning them on and putting them literally right on her eyeballs.

Matt: Right. And it’s still ongoing today. I would say trying to change her diaper, and I have my flashlight on my phone to be able to see when it’s nap time when everything’s dark. And she’s still grabbing my phone and trying to stare directly into it. So it’s still an ongoing sensory-seeking activity even to this day.

Lia: Yeah, actually, that reminds me, I’ve been trying to videotape her on the phone and if the video camera has the light on it, I can’t videotape her because she gets right up on the screen. So she’s staring straight at the light. And as you guys can imagine, that’s problematic, because having a very bright LED light shining directly into your eyeball can’t possibly be healthy for your eyes.

Matt: Right, so if you’ve noticed anything like that with any of your children, then this episode might be for you.

Lia: So again, just a reminder, when we say stimming that’s like self-stimulatory behavior, usually in the sensory avenue. So in vision or in sight, there’s different types of stimming or visual stimming behaviors. There’s a couple of them that we’ll talk about in this episode, some that our child has experienced and some that they haven’t, but we’ll touch on anyway. So just to set the stage a little bit on why sight and vision was so important to us, there’s actually been a lot of studies that have shown that autism is at least 10 times as common among blind people as it is among the general population. And also autistic children may also be more likely to have vision problems than their typical peers. So this was one of those senses that was particularly interesting to us. Because of that, there’s actually been studies that are published one as recent as earlier this year in January 2021, researchers reviewed medical records of more than 10 million children. And in that study, they found that 13.5% of autistic children were found to have vision disorders. And this is compared to just 3.5% of typical children. So children with autism, essentially, were found to have about five times as likely as typical kids to have things like a nystagmus, which is where the eyes kind of move back and forth really quickly. And they found that they’re 3.5 times as likely to have a strabismus and 2.5 times as likely to have amblyopia, which are also other visual impairments. I think our kid had one of those right?

Matt: I want to say, was it just our oldest?

Lia: Yeah, I think it was just the oldest one.

Matt: Yeah, I think we first discovered that probably in occupational therapy. I think they had her on a platform swing. And I think they were spinning her around, and then they would stop her and they would look at her eyes to see if her eyes were still trying to like travel in the same direction that she was going and they said there was like a slight delay from when they stopped her — her eyes were still going, I think that I mispronounced whatever that is actually called.

Lia: Nystagmus.

Matt: That’s it!

Lia: Yeah, so the issue with Nystagmus is — and this is something that our kid has run into — is it can potentially lead to vertigo and vertigo is kind of like you know that overwhelming dizzy sense. And so I think our child is one of those people.

Matt: Right? I think we might have experienced that by mistake. I was in charge of this. So I’ll take full blame here. I think it was both of our girls in their little teardrop swings. I think the teardrop sorry, but I was just swinging them kind of around doing like figure eights and things singing the ‘tequila’ song. Yeah, but ultimately, we’ll fast forward after we finished and we had gotten them off the swings. Our oldest still wanted to stay on the swing. But then within what like five minutes she had, she had like —

Lia: It was so bizarre. Yeah, she seemed fine when she got off the swing. But as soon as we got her in the house, she just started getting sick everywhere.

Matt: And she was… she didn’t want to come off of the swing. She wanted to stay on the swing. And then we had said, ‘Oh, no more swing time. Swing is all done’. We had done the transition out. And then basically, as soon as we had gotten her inside, she immediately threw up.

Lia: Yeah, I mean, we don’t really know why she seems to be okay. Like, she doesn’t seem to show any signs of distress. I think it might just be that whole, like body awareness issue where some autistic kids and adults can’t really feel when they’re about to get sick, I had spoken to an autistic adult one time online, and they were talking about how every single time they had to go get sick, they would never make it to the bathroom because they didn’t know that they had to get sick until like five seconds before they got sick. So they weren’t getting the signals from their body to let them know that so —

Matt: And that’s exactly what we witnessed. It was her — I think she was so upset that she wasn’t on the swing. And then in a fraction of a second, she was getting sick. And we’re like, kind of where did that come from? Like you weren’t letting us know in any way that you were nauseous or feeling uncomfortable in any way.

Lia: Yeah, so if you feel that your kid may be getting sick randomly like that, or if you feel like they are getting nauseous or something, whenever they’re doing some sort of motion type of behavior, it might be that they have nystagmus or something like that, you might just want to get that checked out by a pediatrician or an OT, you can bring it up with them. And a lot of them know how to check for that so you can ask them as well. And that would be the same thing with the other things that strabismus and amblyopia which are other similar but slightly different eye issues.

Matt: And I think for us, as soon as we kind of learned that that was the situation, we were able to kind of stay a little bit more focused on any type of motion activity, it’s not too crazy too out of hand, when she goes on the merry go round, it’s very slow, it’s not too crazy. As far as spinning too fast that you might get sick — so far, that seems to have kind of helped overall.

Lia: And then some of the other things that are kind of related when it comes to sight and autism is they have actually found that there is a connection between eyes and autism and vision. One of the studies that I saw actually said that there is no reward that is sent to the brain and eye gaze. And this is actually very interesting, because it makes sense. So there’s a part of your brain that is responsible for sending you kind of like a little a little reward a little dopamine hit a little serotonin hit. And that system is what makes your brain want to repeat behaviors. So whenever that system is lit up, you essentially are retraining your brain to want to continue doing that behavior. So what some studies have found is that for some reason, in autistic children and adults, that pathway is not working as it does in neurotypical people. So whenever we look at somebody and the eyes, typically there is that little dopamine or serotonin hit and that rewards us and it trains us to essentially be like, ‘Okay, I’m going to keep looking at eyes because I like the feeling that my brain gets’. But studies have actually found that that doesn’t happen in autistic because there is no reward being sent to the brain during eye gaze. So that was actually really interesting. And the other study that I found associated with that also said, the amygdala, which is kind of part of the brain that’s associated with not really like bad feelings, but it’s kind of like an emotional area of the brain, it says that that area over activates with eye gaze. So that makes sense. You’ve got two things going on here. One is there’s no reward. So there’s no point, right? Like, why would you do something if you’re not gonna be rewarded for it in your brain. And then the other thing is, if you are gazing at somebody’s eyes, and then you get kind of like a negative emotional feeling reaction in your brain, you’re also not going to want to do it. So it’s like getting hit from both sides.

Matt: And so it’s kind of the two forces acting against any type of reason to look someone in the eyes, which would make sense. I mean, ultimately, if it’s a like, I don’t wanna say punishment, but if there’s no added benefit, and then it’s, I want to say painful to you to look someone in the eyes. And why would you ever want to?

Lia: I mean, there’s been adults who have said that it actually is literally painful. Like there’s some autistic adults out there, I’ve spoken to that said it physically is painful to them. So it just depends on the kid. But it could be.

Matt: I mean, I never knew that before. I mean, that gives a whole new perspective as far as like if your child is looking at the ground, not acknowledging you are looking you in the eyes, that something else is at play, it kind of changes your reality of like, okay, maybe getting upset with them or saying, “Oh, why aren’t you looking at me” might not be the best approach given what we’ve just learned.

Lia: Exactly. And it’s not necessarily a sign of disrespect, like it’s just literally it’s painful or bothersome to them. It’s like forcing us to stare into the sun. And you’re like, ‘Why aren’t you staring into the sun?’ And you’re like, ‘I mean, I would, but I can’t it hurts’, you know. So that was interesting. And if I find that study again, I’ll put in the show notes for you guys. But let’s go ahead and start going over some of the visual sensory symptoms that have been found as well.

Matt: I think that also makes sense is why we actually see visual stimming take place. Sometimes you might have some kids who might squint and not have full eye contact with you. I think our oldest would kind of look out of the corner of her eyes whenever we were kind of talking to her. And then also, I’m not sure if our oldest one had done it kind of the rapid blinking. So those are just a couple of vision stimming things we’ve seen.

Lia: Yeah. And that’s in addition to the staring at the bright lights, and oh, you know, another one that I remember is remember, she would stare at ceiling fans when they were turned on?

Matt: That’s true.

Lia: Yeah, every time she would go in a room, if there was a ceiling fan that was spinning, she would just turn up and stare at them and just stare and was kind of like mesmerized by it.

Matt: Right. And I think, we were trying to look for healthy ways to actually work with her since she was drawn to the light. And I think we actually found like a couple little plastic ones that had different color lights, but they weren’t at the same wattage or whatever you consider as like some of the lights we have — it was more of a dull light. But since it was colorful, and it was spinning, she was satisfied looking at that. And thankfully, it wouldn’t hurt her eyes as with like a regular like LED light, for example.

Lia: So like our recommendation is if you have a kid who is attracted to really bright lights, what we did is we got there kind of like those spinning ones that you get like Disney World and things like that. They have like all the flashing colors.

Matt: Like the Disney wands or scepter or whatever.

Lia: Little Princess wands. Those things. The lights on those are bright, but they’re not partially bright like a lot of lights that are used to light your house. So we swapped it out with that instead and then we didn’t have a problem with her.

Matt: And I would say another thing that also was super helpful was glow sticks.

Lia: Oh, yeah, that’s true.

Matt: Go to the dollar store, get a pack of glow sticks. And she was obsessed with the different colors of close sticks. And of course, there’s basically no light whatsoever that’s emitted from that unless you’re in a dark room and I thought that worked out well is kind of a nice transition off of the bright lights for her.

Lia: Yeah, so glow sticks are another good go-to with duller light. The only caution there is if your kid is super oral seeking, you want to be careful because you don’t want them to chew those and then get the liquid out of it. So just keep an eye out if your kid is also a chewer glowsticks might be not so great for them. When it comes to the visual sensory symptoms there’s actually the difference between the hypo sensitive and the hypersensitive types of visual stimming and visual sensitivities. Some autistic individuals are more hyper-sensitive visually. So that means that they’re more over sensitive. And when they’re oversensitive, it means that they probably are more hyper-aware of the visual aspect of their surroundings than your peers are.

Matt: Okay, so this would essentially be the kids who would shy away from bright lights. So it would be the opposite of what we’ve experienced with our oldest daughter. So I’m assuming this would be — you’d want sunglasses trying to like dim the lights down in this situation for these kids.

Lia: With hypersensitive kids, these are the ones that are going to be more sensitive to sunlight and things like that. There’s actually some things that you can do with that. So you can give them sunglasses to help them out. There’s actually in states even states where it’s currently illegal to tint your windows, darken your car windows, you can actually get a special prescription in many states to get special permission to tint the windows of your car darker so that your kid doesn’t get affected by the sunlight. So there’s a couple of things you can do just for that. But with the hypersensitive kiddos, they also are able to sometimes focus on really tiny pieces of dust particles in the air. They might like Matt said dislike bright lights. And surprisingly, sometimes they might dislike the dark as well. They might be the ones that are more averse to sharp flashes of light. So they might be cowering away from lightning because the light is just too harsh for them.

Matt: So if you notice that your kid is often looking down at the ground or might be covering their eyes frequently, it could be something such as a visual stim, I’m just thinking of like on a very bright day, you might see a kid not wanting to look up because obviously, the sun all around them might be too overstimulating. So by focusing on the ground, it probably helps make it a little easier to try and see without having to really open their eyes too much.

Lia: Yeah, so some kiddos that are hypersensitive, they might just cover their eyes whenever they’re around bright lights for that reason, because it might be overstimulating to them if you see that your child is avoiding light or if you see that they walk with their head down or looking on the ground or looking at their feet when they walk or anything like that. That might be a signal that maybe they have some sort of hypersensitivity to light and you might want to get that checked out with like an OT or something. There’s also kids who are polar opposite.

Matt: Right, which is the category that our daughter would fall into. So already kind of mentioned that she would be under-sensitive to light which means she’s seeking it out. So…

Lia: That is hypo-sensitive. Hyper, the first one was hyper and this is hyposensitivity.

Matt: Right. So she would be I mean, like I think you mentioned before kind of like a moth to a flame, just she will seek out any type of bright light and kind of go towards it. I mean, that’s kind of the big factor there that we noticed that that was kind of a red flag.

Lia: And it doesn’t necessarily have to be light either. Sometimes kids who are hypersensitive might just look really intensely at objects or people, you might see them with their fingers kind of waving their fingers in their eyes, or you might see them kind of staring at their hands.

Matt: And actually, we also noticed that her obsession with I guess, mirrors kind of seeing her herself in the mirror, kind of the reflection to light and then her interaction with her hands and kind of waving and smiling. She was very interested in that as well.

Lia: Our eldest one is still to this day super interested in her reflection in a mirror. I think sometimes she’ll notice it, just like in passing and that it just catches her eye that she’s got this big smile on her face. And she’s like, ‘Oh, what’s that? I like it. It’s shiny’.

Matt: Needless to say, I think both of our daughters like the mirror.

Lia: I’m not sure if that means they’re narcissistic? Just kidding. But yeah, so having a fascination with reflections. But it can also be with brightly colored objects. So it can be with like really bright colored toys or rooms or anything like that, you might see that they’re just kind of strangely attracted to that color.

Matt: And I was just like, even in our instance, she was attracted to the white light that we had gotten, she was calling a blue light, because she’s able to see a blue tinge color that we’re not able to.

Lia: Yeah, it’s so weird. So we had these lights, these fluorescent lights, and she would refer to it all the time as blue light, blue light. We’re like, ‘What are you talking about the light is white’. And then we went just out of curiosity, because that was happening so frequently, and we check the back of the box. And lo and behold, the box says emits blue light. So some of these kiddos I feel like they can see colors that we can’t see. Because she was able to point out that that light emitted blue light, and we cannot see blue light.

Matt: Right? I’m very curious when she’s older and actually able to describe it just kind of describe the world around you of how you see it. And just to kind of get an idea of what she actually sees. Because all we can do is just kind of guess at this point.

Lia: Yeah. So who knows, maybe we’ll find out in the future. And then another one for hypersensitivity is some of these kids might run their hands around the edges of objects or things like that. That’s also for like visual satisfaction basically. But what was really interesting is when it comes to these sensitivities and the stimming the visual stimming in particular, I found this quote from an autistic person. And this quote is from a book called ‘Nobody Nowhere’ by Donna Williams (paid link), and this quote says, from this Autistics perspective, they said, “My bed was surrounded and totally encased by tiny spots, which I called stars, like some kind of mystical glass coffin, I’ve since learned that they are actually air particles, yet my vision was so hypersensitive that they often became a hypnotic foreground with the rest of the world fading away”. And that quote, to me was really interesting, because it depicts from the perspective of an autistic adult, that when you see somebody just staring at the air, and you’re kind of like, ‘oh, man, they’re just zoned out’ — it’s not that. This person was saying that they were so distracted by all the sparkling lights that looked to them as if it was like the sky full of stars. And to us, it’s just dust particles. But to them, they said it was so visually overpowering, that they essentially felt like the rest of the world was fading away. And that that’s all they could focus on.

Matt: That just kind of blows my mind a little bit just trying to imagine such a totally different world that we aren’t able to perceive.

Lia: Yeah, absolutely. So when you talk to autistic adults, sometimes they’re able to give you this insight and this is really interesting to see like another perspective of how they visually might perceive something. Because of that, it’s obvious that autistic people tend to have different visual processing. So there’s a lot of studies being done in the visual processing and autism, for example, there tends to be a lot of optometric issues, and that’s like 21% for example, we talked about before they have strabismus compared to just 3.7% of typical children. And strabismus is basically when there is a visual defect where one of your eyes can’t focus on an object because of an imbalance in the eye muscles. So that is another visual impairment that’s found in Autistics. So not only the blindness, there tends to be a higher prevalence of autism in blind people, but there also tends to be a higher prevalence of that nystagmus and now the strabismus there seems to be a strong correlation between visual impairments and autism.

Matt: Now, I wasn’t sure does that mean that one of the eyes is over-focused on the other one?

Lia: So it’s basically saying that it’s a defect where one eye can’t focus with the other eye on an object. So in order to have depth perception, let’s also say because you would need both eyes to align on the same object at the same time, so strabismus is basically that you can’t get those eyes to sync up, therefore, you can’t get kind of that 3D perception accurately.

Matt: That would cause potential struggles with interacting perception, right? I was gonna say like, if we’re playing a sport, for example, baseball, or whatever. So if someone’s throwing a ball, being able to gauge how far the object is from you to be able to catch and kind of go from there, so wasn’t sure if they kind of tie in with some of the stressors.

Lia: So, if you think about it, like, for example, our kid, our older kid, she has a really difficult time catching a ball, if you throw a ball at her, she doesn’t seem to know where the ball is coming from, and how to coordinate getting her hands to catch the ball. And I think a lot of that might have to do with that visual impairment, like the depth perception.

Matt: Okay, I didn’t even think about that I was thinking more of like the motor planning of if you throw an object at someone, I mean, we’re not throwing it super hard at her. So there’s going to be a natural arc, but kind of her planning as far as how to catch it. But I mean, that’s interesting that the vision would play such a key role.

Lia: And it’s probably a combination of the two as well. What’s interesting is I actually personally did have visual depth perception issues growing up, I actually did go through vision therapy. So the good thing is, even though kiddos may have some depth perception issues, there is therapy for that when it comes to depth perception and stereopsis, which again, stereopsis is, you know, stereo means using like the left and right of the radio speakers. So stereopsis is like the same thing, but it’s like the left and right eye kind of coordinating. So basically, what they’re saying is that some studies have found that the perception of depth in autism needs to be investigated further, because they found that a lot of observations with autistic children is that they tend to misjudge the interpersonal distance in social interactions as well. And because of that, they also have issues with like ball catching. So it doesn’t just affect things like play, but it’s like that whole aspect as well. Yeah, like, you know, that whole invasion of personal space. So some of that could be — the research is saying some of that could be due to a visual impairment, actually, because they aren’t quite sure of the depth perception and like, where their body should be in space, essentially.

Matt: I mean, that’s interesting, because you just think of how impactful that is just in normal society. If you’re going to the grocery store, how far do you stay behind the person in front of you in line, it’d be a few feet. But if you’re struggling with kind of the gauging of social depth as well, that would kind of come into play there.

Lia: Exactly. So a lot of times, they say, autistic kids should get screened for depth perception and stereopsis. And I plan on screening our kids on that, because I personally had that issue. And this is something that you’re born with, it’s a developmental issue. So it’s just something that that’s how you were formed in the womb. So there’s not really anything you can do about it other than therapy, but it’s good to get it evaluated in your kids just in case. You would see, I think it’s like an ophthalmologist for that.

Matt: That’s curious, because that’d be different than just a standard vision test.

Lia: Oh, yeah, no, no, you don’t go to like a doctor for a vision test, you go specifically to an eye expert, I believe it’s an ophthalmologist who does that. And they go through specific testing for that. So that’s also related to the stereopsis. And I mentioned that word a little bit before. But what that means is, it’s basically referring to depth perception and three-dimensional structure based on the visual information that you’re getting from both of your eyes. And that’s how you get by binocular vision. So that’s how you get that 3D perception. So if you don’t have that balanced, it’s hard for you to see that 3D, which then affects whether or not you’ve got depth perception. So what’s interesting is that that is something that has been found to be potentially deficient in the autistic population when compared to the neurotypical population. It’s still not super high. I think the statistics were just saying it was something between like 21% or something like that. So it’s, it’s less than a third, but it’s still 3.7%.

Matt: Yeah, that’s, that’s significant.

Lia: Yeah, and I’d be happy if anyone’s interested on that as a topic, just let me know, because I’d be happy to go into depth about my experience with vision therapy and everything growing up. So just let me know in some comments at some point, and I’d be happy to go over it. The other very interesting thing about this is when it comes to vision and the parts of the brain, they say that there’s also something that’s called social brain dysfunction in autism. And basically, social brain dysfunction is basically the parts of the brain or the regions of the brain that are all correlated, I’m not going to get into all the literal parts of the brain because there’s a lot of them and it can get confusing really easily. But basically, they’re the parts of the brain that cover for facial expression recognition, difficulties with interpreting eye gaze, problems with sensory integration, and executive function problems. They’ve essentially found that all of these areas tend to be “dysfunctional” quote, unquote, in the autistic brain and vision is one of those areas.

Matt: So are they all linked together in the brain?

Lia: So I think it’s called social brain because all of these aspects are kind of necessary for social interaction. So like you need eye contact —

Matt: So I was going to say, because I understand as far as it makes perfect sense as far as the vision component with recognizing like facial expressions. But I wasn’t sure if the others were similarly —

Lia: Yeah, so like, for example, the amygdala that I mentioned earlier with the eye gaze like interpreting eye gaze, or being able to maintain eye gaze and being able to interpret like that social bubble of not getting into people’s interpersonal space. So basically, all these parts are separate brain areas, but you kind of need them all together to be able to socially interact with somebody, and what we would consider an appropriate way.

Matt: Okay, interesting.

Lia: Neuroscience lesson for the day.

Matt: But it’s interesting how like vision basically, it’s almost like a domino effect for some of the other categories that are similarly linked to that component that factor together into one.

Lia: Yeah, absolutely. And if you guys are interested in this information, I will put the related studies that talk about this in the show notes, and I’ll make everything clickable. So you guys can see all the information that I’m talking about. But basically, that’s a little bit of insight about the visual system and sight when it comes to autism, a little bit of the research that’s been done and some of the connections again, if you feel like your child may be struggling in this area, I would recommend that they go see a developmental optometrist or an optometric decision, which can also be referred to as an OD and usually the treatments that are involved here is ongoing treatment that requires daily visual exercises or the use of certain lenses. I’d be happy to go through that in a future episode if you guys are interested.

Matt: We’ll see you later.

Lia: Thanks for sticking around guys. This is a long episode, but hopefully you learned a little bit about visual stimming and sight in autism.

Matt: We’ll see you next week.

Lia: Have a good one.

Outro:
Lia: To summarize, we discussed the differences between hypo and hypersensitivities in the visual sensory system, and how that may reflect in various forms of stimming. We also discussed the strong correlation between autism and visual impairments such as blindness, nystagmus, strabismus and amblyopia. If you feel your child may display characteristics of visual impairment. Consult a developmental optometrist or an optometric physician. Join us in the next episode where we discuss the sense of taste and answer questions such as why does my child eat inedible objects? How can I stop them from chewing on everything? And what can I do if my child refuses to eat? This is Embracing Autism.

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Resources:
Vision in autism spectrum disorders
Eyeing the connection between autism and vision
Prevalence of Ophthalmologic Diagnoses in Children With Autism Spectrum Disorder
Nobody Nowhere: The Remarkable Autobiography of an Autistic Girl

Disclaimer: Nobody Nowhere — by Donna Williams is a Paid Affiliate link. AutismWish would receive a small percentage of the purchase value if the above link is used.