B (4:09)

So just as Katie had conducted her research, I started reaching out to different experts on the physiology of non speakers with apraxia. I first spoke with Dr. Zelinski, an optometrist who works closely with many patients who are autistic at the Mind Eye Institute.

D (4:24)

I'm an optometrist and the subpopulations that I work with are people whose brains are not working adequately or whose brains are working differently from other people will work with brain injuries where people have to relearn things. We'll work with autism where the brains are wired differently, different genetic disorders, people with dysautonomia, anybody where the visual input is not coming in properly or the motor output is not going out properly processing is different from average.

B (4:56)

I spoke with Dr. Zelinski to find out what's happening with the brain ocular relationship and a person with autism and how new studies and developments can help us better understand their perception of the world around them. I should also mention she is truly a cutting edge optometrist who for 30 years before anybody else believed it, knew that there was a direct link between vision and hearing. She was keen to remind me that just because something hasn't been proven yet doesn't mean it can't be. So. Dr. Zeke, can you explain how vision often plays out differently for those with autism and apraxia?

D (5:27)

There's three kinds of eyesight. You have a subconscious eyesight that's keeping you safe and that scans the environment. So if you're walking with somebody, then at a subconscious level, you're scanning the ground to make sure you don't walk into a hole or flip over something. So that whole scanning ability of your periphery is subconscious. In somebody with autism, a lot of times that subconscious isn't subconscious, it's conscious. And they're looking around in that far periphery.

B (6:01)

So it might be why they're not making eye contact with you or seeming like they're just looking all over the place.

D (6:06)

Yeah, exactly. And the second type of eyesight is a peripheral eyesight to set the stage to be what you're aware of. So, for instance, if I'm looking at your earring, then the earring would be what my central eyesight is seeing details on. But I would see your face and your hair and the surroundings. So the second eyesight would be the surroundings, and that's called peripheral eyesight. So I scan the environment subconsciously, something's interesting, and then I choose to put my attention on that interesting spot. And the peripheral takes over and says, okay, where is it? It's here. How do I point my eyes? Then you aim, and then you focus on details called control identification eyesight. So you have this scanning safety eyesight, you have the navigational ability eyesight, and then identification eyesight. So in autism, typically, the autistic people are not using the identification and navigation system evenly. They're not used in tandem as a team. If you're reading, there's a paragraph, and your side eyesight says, here's the paragraph. It starts here, it ends there. And then your centralized site reads the word by word or phrase by phrase. But you see it coming. It's getting to the end of the line. I'm going back to the beginning of the line. And in autism, they're using either the peripheral where is it? Pathway or the central what is it?

A (7:37)

Pathway.

D (7:39)

And the safety pathway is at a more conscious level. The processing of all three pathways is not the same as in a neurotypical person. They don't typically use the centralized site as a choice, and the centralized site is a slower Pathway, they don't need to use the central because they get enough information from the peripheral.

B (8:04)

Okay, that's so interesting. So they're choosing to favor the peripheral rather than the central since it takes more motor control to use them in tandem. So are they processing the visual information in a different way in the brain?

D (8:16)

So as far as what's going on in the brain, I tend to simplify it into the three different brains. The reflex, the emotional and the thinking. I'm working on perception. And perception for communication would require four different inputs. You would have facial expressions and body language. Those are taken in by your eyes and the body language is taken in by that peripheral system and the farther one and the facial expression is by a smaller periphery. So that's why we were talking about different types of eyesight. We have body language to see the whole body. You have facial expressions because you zoom in a little bit. And then you also have tone of voice and then content of words. So your auditory system also has kind of a background and the target, those four things. You have a right eye and a left eye and a right ear and a left ear. So there's eight different sensory channels that all have to be synchronized for you to communicate easily and to understand what the other person is saying and doing. So what I find with the non speaking population is that most of them are either switching back and forth from just listening to what the person's saying to just looking at their facial features, to just paying attention to, you know, how they're moving around, but they don't see it as a whole, nor do they tend to watch the person's mouth while they're listening. So many, many of the non speaking population look down and look away from the people talking to them. Because if they look and they try to look and listen at the same time, it's too confusing. Their brain's on overload and then they can't comprehend what's being said to them.

B (10:07)

What do you think it is different in the brain that's making that it that way?

D (10:11)

Well, the way I've learned it, it's a developmental thing that it's the space around you. When I see autistic people, they have a particular spot in space that they're comfortable with, but they're not comfortable with the entire chunk of space around them. So I've made up a continuum and we call one example, one end of it would be like a floodlight mode. So if you went to a theater and there's floodlights on, you don't know where to put your attention. Stuff's happening everywhere. When the theater wants you to pay attention to one person, they turn the lights down, they turn the lights dimmer, and there's one spotlight on one person. And then you know where to put your attention. So it's a continuum from pen light or spotlight mode all the way to floodlight mode. And the neat thing about the brain is it can turn the peripheral eyesight off and on and shrink it and expand it. And in the autistic population, that shrinkage and expansion of the space around them that's not working properly, they don't have the ability to do it. It's a skill that's not been learned. People who have autism are usually stuck in the pen light mode and not paying attention to the floodlight mode, which.

B (11:23)

Could have its strengths.

A (11:25)

Really, it does.

D (11:26)

Autistic population have a lot of strengths. And that's the whole thing. It's like it's a subpopulation. So like, when we see them at Mind Eye Institute, I'm not trying to change anybody. We're trying to do is explain to them how they can better communicate with the people who aren't perceiving the way they are. So you have to, in order to communicate, you need to understand where the other person is coming from. And like if you have a parent and a child, even a neurotypical child, the child cannot see the parent's viewpoint because they haven't gone through what the parent's gone through. Parent has to come down to the child's viewpoint. So with the non speaking autistic person versus a parent or another person, the autistic child is stuck trying to figure out what the other person is wanting. And they can't put themselves in that shoe. So if we could give them experiences by putting glasses on that change the way the environment looks so that the taste of, oh, when my eyes and ears are connected, this is how the world is, or when I'm coming from another perspective, this is how they might see me. Then they'd be more aware of how their behaviors are affecting other people. The glasses are designed for the peripheral section of the eye as opposed to standard glasses that are designed to identify a target. We've had some of those children who all of a sudden start to be more aware. One was a verbal child, but it was funny, after they got glasses, they said to their mother, oh, mommy, you have a whole face. I can see your eyes and your nose and your mouth at the same time. They had been like four years of their life just seeing A nose or just a mouth or just an ear, and moving around a lot to see everything, it's changing a brain process. It's not giving them information of if everything came in in an angle or from above or from below, or it's magnified on one side but not the other. So it's slanted. It changes the person's posture, which changes the chunk of space that they're aware of. So for the autistic population, a lot of times we have to change the way their center of gravity is to make them lean back or lean forward. The identification, seeing a letter on a chart, that's one thing, but that's just one piece of your eyesight. That's not the important piece because that's the slowest piece. And the eye exam designed to identify letters on a chart was designed before the light bulb was invented back in the 1800s. So we're still using that 160 years later. When it's not sufficient for the autistic population or the dysautonomia population or any sort of brain injury, there just has to be a change in the way eye exams are being done, because it's only been in the last maybe 15, 20 years that it was known that their eye ear linkages, they could just prove it. There's all these new discoveries, and yet nobody's changing the eye exam.

B (14:26)

Okay, I guess the last thing I want to ask you is what advice would you give to a parent or family member who has an autistic child or young adult and they're having issues visually?

D (14:38)

Well, I first tell them that there's habits that have to be broken, and then a process of building new habits so that I tell them to be patient and take the time and understand that their child is not broken. Their child is just different. You have to break the old one, show them a new one, and have them rehearse the new one.

C (15:01)

And.

D (15:01)

And then they will want to go back to their old habit because it's comfortable. So you have to also be cognizant of, well, what's their comfort zone versus what's tolerant for them. So, you know, like, they might never like to go out to, you know, drag races where there's cars making a lot of noise because the sound, they might have sound sensitivity. So you can't change who they are as a person, but you can expand what they're aware of, that somebody who's in pen light mode most of the time, when you expand to turn on the floodlight, you blur the central part and they go, wow. It gives them that experience. But sometimes it's scary because you have, like I said earlier, an emotional brain that's guiding the thinking brain and a reflex brain is guiding the emotional brain. So when you put different glasses on, you can change the body chemistry and the chemistry changes the brain activity. I would love for my legacy to be to change the way the eye exams are. We're in the 21st century and we're doing eye exams the way they were designed in the, in the 1800s or 19th century. And for the autistic population and the non speaking people, it's critical. I mean, it's absolutely critical.

A (16:26)

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B (19:03)

Equipped with a better understanding of how someone like Houston is experiencing vision, I next hopped on a Zoom call with Dr. Cedric Noel, a functional neurologist, to learn about the vestibular system as a whole, which controls things like balance, spatial orientation and eye movement coordination.

E (19:20)

My name is Dr. Cedric Noel. I am a chiropractor and I have a certification in chiropractic neurology, which is also mostly recognized as functional neurology, and I've been in practice since 2002.

B (19:38)

Can you briefly explain the vestibular system?

E (19:41)

The vestibular system is a multisensory integration center that allows you to feel gravity, but allows you to feel movement of your head and also takes in visual input. It also takes in proprioceptive input from your joints, from your body. That somatosensory input comes in and so it allows you to feel your body and react to that. It allows you to see your environment and react to that. It allows you to hear your surrounding and react to that. It takes all of that in. Now, the reason why it can take all of that information and make good sense of it is because it also works closely with a very important region of the brain called the cerebellum. The reason why the cerebellum is so important, especially as you're mentioning in speech, the cerebellum is 10% of the brain's mass, but the cerebellum has 80% of all the neurons of the brain cerebellum. Its job is to allow you to do things better and faster. And I'm way oversimplifying, but it does that in all aspects. Thoughts, emotions, for sure, speech, a tremendous amount of control there. Anything that requires fine tuning, fine control. And the connection with the vestibular system is that it's so foundational and it's so critical to our survival that if that integration of vision comes in, sensory comes in motion, we have 10 motion receptors, correct gravity. If that all comes in and they're not coherent, the information is conflicting from one system to another, then I think red flags go up immediately. A tremendous amount of energy is spent to try to figure out who's got it right. And you can't turn off the vestibular system because it's too powerful and has got very strong connections and control over the autonomic system.

B (21:54)

So what is going on with the vestibular system among people with autism, specifically those who are non verbal, Is there a particular region of the brain that we can point to is functioning differently?

E (22:04)

I don't think we can say just one area is impaired because speech is involving all of those regions that I talked about. You know, you've got the forebrain, you've got the midbrain, you've got the hindbrain. I think we've got to make a separation too, between. If you can't vocalize any sound, then it's likely that the midbrain is impacted, it's injured. So if you can make sounds, then, you know, midbrain's okay. If it comes to synchronizing sound, you know, the rhythmic aspect of tones, that's more of that cerebellum that allows you to take syllables and rapidly and fluidly, you know, turn that into spoken words and sentences and language. However, if it's more of that emotional intonation and sound, then. Then that's part of the frontal region of the brain. It's an entire different section.

F (23:08)

And it.

E (23:09)

And if it just. If you're able to make sounds but you're not really able to say words, then then you're looking at Broca's area. That's more of an expressive aphasia. I think that what's going on, in my experience, having worked with some of these cases, when we. We start with the vestibular system and we recalibrate visual vestibular somatosensory systems and we organize them in a way that they work really well together. The expression is that these patients can feel their body, they can feel where they are, they feel grounded again, they feel connected to the ground again, and they can make sense of their environment. They know where their surrounding is again, and they know where they are. Now, if they've had 30 years of not being disconnected in that way, it's, it's so. It's such a high level priority problem that the interference it, it creates in all other systems is vast and overwhelming. If we can reorganize that as early as possible in life, it gives you the best chance of doing better. But even if we do that later in life, there's still a tremendous benefit. It just takes more work to try to make up for the loss function. I think one of the biggest problem in cases of autism, we could say non speakers as well. Those long range connections, you need the cerebellum which is way back here and the frontal lobe and everything in between to connect perfectly well. These long range connections, they're impaired, but it doesn't mean they're not intelligent. I don't know for sure, but I think that what goes on is that we have areas in our brain that are not receiving the attention that they need. We could say you have all these different brain regions and some have a tremendous amount of attention and others not quite as much or some are really efficient and others are not quite as efficient. And so when we look at, at studies on, we could take the blind for example, as an example. If you are blind and you don't get to activate your occipital lobe, the region of the brain that receives vision, what ends up happening is the other senses start taking over that region of the brain, they start taking more real estate. And the question is, is it that we have abilities that we are not quite tapping into and those abilities are now being able to flourish? We're over developing other regions and how.

B (25:56)

Advantageous that can be.

E (25:58)

Oh completely. I mean you want to use that to your advantage. And that's the reality I think for every human being is that we all have strengths and weaknesses and some people have ultra strengths and have greater deficits in other ways. But totally you could, you need to, I think we need, that's what this whole life I think is about. We need to leverage our strengths maybe. I think it's important to build up our weaknesses too. We want to try to achieve some balance. So, and that's really what my job is, is I try to identify where are the deficits and let's build those up. It's not to compromise the great qualities and strengths that, that, that a person has developed, you know, in spite of these weaknesses. But we want to try to restore balance because it's with this balance that we can really have, I think a level of function in life that allows us to to have better inter. Interpersonal relationships. And I think that's ultimately what we're all striving for. But with that being said, I think you're totally right. There are some things that we know in this world because of brilliant minds. You know, people that have had these high concentration of development and, and energy in parts of their brain that allow humanity to adva. Knowledge to advance at a point that it would never would have. I completely agree with you. So, yeah, these people have a place in a role in life that no one, I think, can do the way that they can. They have the ability to do things that no one can do the way that they can do it.

B (27:39)

Here's Katie again.

C (27:40)

So combined with Houston's like, visual impairments and his hearing having this acute effect on the rest of his body. The overload and underload of sensory information that his brain was trying to process and then the lack of the sensory motor processing resulted in this vestibular and proprioceptive systems that are not functioning even remotely how they're designed to function. And this, of course, affected his ability to control the rest of his body. And all of this was in addition to this constant state of anxiety and addiction to the stimuli that he lived in. It actually took me so long to figure out what the original sensory source was because he was experiencing so many and he wasn't sure what everyone else was following. Over time, he learned, but that was just part of, like, the incredible way his brain works.

A (28:39)

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B (31:03)

Katie's search to find Houston, the treatment and care he needs, is ongoing. But one program Katie mentioned sounded so amazing I had to get on the phone with them.

F (31:11)

My name is Benjamin Keeling. I'm an occupational therapist.

B (31:14)

As a part of his occupational therapy, Katie's been taking Houston to Sawdust Occupational Therapy, a program that teaches individuals with autism woodworking skills.

F (31:23)

We work with life skills and vocational skills for children and young adults who need a little assistance using those skills to regulate themselves or build confidence.

B (31:34)

Will you tell me a bit about the experiences you've had working specifically with the nonverbal population?

F (31:40)

Yeah, it's some of the most rewarding work that I've ever done and I know that I'll continue to do this population. I think obviously for those who've been listening to your previous episodes and all of that, understand that they have so much to offer and oftentimes are so overlooked. And I think that's one of the reasons why I enjoy working with them as much as I do, because every day I learn something new and see something amazing. You know, when I first started, I feel like it's pretty common in the medical model to try to just stick with, you know, we're only going to do small fine motor tasks. We're going to try to work where you're at, and that's it. I have a lot of family members who have myotonic muscular dystrophy. And I've kind of seen when someone isn't, you know, given the opportunity to meet their best potential, what that does for an individual. So this is a big passion of mine to make sure these individuals are, I assume, competence in every way. You know, I. I don't assume they can't do anything. You know, I assume that, you know, they're going to be able to do it day one, and then we see where we're at, you know, and I'm always amazed. In particular, you know, you brought up Katie in Houston. Something that really blew me away and kind of made me realize, you know, this young. This young man has a lot to offer and has just some incredible skills. We. We day one had him come in and I was talking about, you know, like, our woodworking and what we're going to do and all of this stuff. And his mom's like, you know, Houston is really talented. He has a lot to offer. A lot of people don't really see that. And I want him to be able to kind of show you kind of his knowledge and where he's at. And he spelled to me kind of what he wanted to do, what motivated him. So we started off making these prayer boxes, and each prayer box meant something to him and to a very specific person. And, you know, he was one of my first interactions with using spelling as a mode for communication. And, you know, Katie was explaining it to me, and he started selling to me. You know, I really love this wood. It's called padauk. It's this red wood. And we had gone over it and showed it to him. So she's like, it really speaks to me, the. The energy it gives off. It's very calming and grounding. And I thought that was very interesting, you know, because every wood does have a different kind of feel to it. But I had never thought of kind of the idea of grounding aspects to it. And I was like, okay, that's pretty cool. I'll go find some padauk. And he literally went up to a pile of sawdust. I mean, I'm taught when I say pile, I'm saying like size of like a 10 gallon bucket of sawdust. That's just your typical pine. He sticks his hand into this pile of pine and pulls out a piece like this big of padauk. And he was telling me that.

B (34:35)

And just for the listeners, that's like the size of a coin.

F (34:38)

Yeah, a size of a coin. It says. And it was able to pick up on the energy of that wood through that pile of sawdust. And, and I'm telling you, he came in without knowing and like that we used that padauk maybe two weeks ago. I mean, it was under my table saw. I mean he, and he was able to pick it out when we walked into my wood shop. And at the time my company, we were operating out of my personal wood shop. So it was kind of cramped. So there's no way he would have like from just a visual standpoint, like neurotypically I'd be able to look at that pile and be like, there's this tiny piece of, of paduk. But he was able to pick it up. And it was at that moment I'm like, you know, there's something to this. There's like these guys, I mean, they have so much to offer and I think we're doing them a disservice by discounting what these skills are. And I was like, all in.

B (35:33)

Well, it feels like this population has been greatly underestimated for a long time. And one of the biggest issues that we as a society have, I think is trying to get them to conform to the way we've been living. Instead of what you're saying is meeting them where they're at, which it sounds like you do in your therapy.

F (35:52)

Yeah, it's. And I see a huge therapeutic benefit to that. And honestly, the relationships I've built with these young men and women, just meeting them at their level, you know, meeting them where they're at, it's just amazing. Yeah, I mean, they have so much to offer and honestly, out of the box thinking. Some of the most creative projects we've ever made are with my guys who spell and who would be typically considered, you know, they say non verbal, but it's really non speaking because these individuals can verbalize and they can communicate. It's just from a motor standpoint. The oral motor function of being able to use those motor functions because of apraxia makes it. Unfortunately, it makes people assume less of their ability than they actually have. I mean they, I have a feeling with the apraxia that's the biggest reason why we're seeing non speakers. You know, I mean, these guys are brilliant. They just, from a motor standpoint, have a difficulty being able to articulate what they're trying to say.

B (36:54)

I'm glad you brought up the motor side of things, because I think there's a lot of confusion on what's really going on. When, like, let's say you see an autistic individual in the store and they're spinning or bouncing or flapping, you'll see.

F (37:08)

A lot of rocking or spinning or flapping or movement that comes from a neurological basis. It's a sensory need. So we. Our body's broken up into several differences senses when it comes to movement, rocking. The big ones are vestibular input, proprioceptive input, and visual input. I put those big three together. Proprioceptive is basically your body where you. You are in your. In space. So your body space your spatial reasoning. So you have your proprioceptive, which I say is like your neck down, and then your vestibular system is your intraventricular canals. Your. There's three rings in each ear, and that kind of tells you where your head is in space. And then your visual obviously is through your. Your eyes, through your optical nerve. So when you see a young adult that's rocking, a lot of times what they're doing is they're trying to ground themselves or center themselves through vestibular or proprioceptive input, sometimes both. It's not uncommon to see. Maybe a lot of times the public will call it like hand flapping, where it'll be like a flap in front of their face or around their body. So getting this kind of repetitive motion is getting their sensory system, their neural system regulated and centered to be able to function in whatever setting they're at. And I think that's an important thing to realize is these young adults and individuals are in need of such a rich sensory input to just be able to regulate themselves in their daily lives. I try to tell individuals who are not familiar with the neurodiverse community if you've ever been anxious and you're sitting at a chair and you're bouncing your leg, that's the same thing that our young adults are doing. You know, you're regulated yourself through proprioception of motion. My big thing is wanting people to realize that it's. It's okay to communicate with these individuals in public. You know, they're. They're just like you and I. You know, they want that social connection. Some of my guys that I See, we call them apprentices at Sawdust. I mean, they're close friends of mine. And there's. There's a. There's a connection there. It's just knowing kind of, you know, everyone's intricacies. You know, everybody has needs that are different. And I think something important to touch on, too is kind of things that we can do to kind of assist the adults in public. You know, they don't want to be talked to like their children because they're not, you know, they. They're just as adept as us. They just need a different way of communicating. I think why woodworking is so motivating for our guys is the amount of vestibular and proprioceptive and tactile input you get through working. Everyone wants to have a place in this world. Everyone wants to be able to showcase their skills and giving them an opportunity to express themselves in a safe environment that doesn't judge based off appearance, based off, you know, verbal skills, based off.

C (40:16)

What you see on the COVID Houston was called lazy. He was called low functioning. He was called uninterested in being part of community. And they have no business putting these labels of intent when they have no idea what they're experiencing. He was given an IQ of 45, and those tests are an insufficient measure of intent, of intelligence, of desire, and they should never even be a part of education because what they do is they set out to determine who's worth providing resources to.

B (41:07)

One last closing thought from Katie.

C (41:09)

I'm hoping to bring empathy back. I'm hoping for love and curiosity and all the things that actually make us wonderful as human beings. You find truth from curiosity, from hope, from love, and you believe in people, and then guess what happens? They perform. My son is not incredible because of his abilities. He's incredible because he had to maintain hope while he was denied every single human right and dignity. He's incredible because he has the courage to make the world confront the truth about what they have done to others like him.

A (41:44)

My hope with not just this episode, but with all the attention on non speakers in general, is that behaviors once labeled as disruptive or defiant or detached are revealed to be acts of regulation and survival and even resilience. Because what looks like disinterest may be sensory overload or what seems like non compliance may be a body out of sync with intention. We've spent decades, literally decades, trying to force non speakers to conform to a neurotypical world instead of adapting that world to meet them where they are. It's time we see the brilliance beneath the surface. It's time to stop denying non speakers their dignity, their education and their basic human rights because we failed to understand the mechanics of their bodies. Justice starts with curiosity and then with listening and then with rethinking everything we thought we knew. So thank you for your curiosity and for listening. That's it for this episode of the Talk Tracks, but new episodes will now be released every other Sunday, so stay tuned as we work to unravel all the threads, even the veiled ones that knit together our reality. Please remember to stay kind, stay curious, and that being a true skeptic requires an open mind. Thank you to my amazing collaborators. Original music was created by Elizabeth PW. Original logo and cover art by Ben Kendora. Design the audio mix and finishing by Sarah Ma. Our amazing podcast coordinator Jill Pichesnick, the Telepathy Tapes coordinator in my right hand, Kathryn Ellis. And I'm Kai Dickens, your writer, creator and host. Thank you again for joining us.