91. Understanding Whole Body Apraxia with Dr. Dana Johnson, PhD, MS, OTR/L

Written By Brittyn Coleman, MS, RDN/LD

In this episode of The Nourishing Autism Podcast, Brittyn welcomes Dr. Dana Johnson, occupational therapist and the founder of Spellers Center Tampa + Atlanta as well as the co-creator of the Spellers Method™. She holds a Master’s degree in Occupational Therapy and a Ph.D. in Child Mental Health and Development.

Listen in as Dr. Johnson discusses one of the most important (and often misunderstood) topics of the autism journey: whole-body apraxia. Dr. Johnson specializes in helping individuals with complex autism, whole-body apraxia, and other neurodevelopmental disabilities develop intentional motor skills and improve overall health. Her mission is to empower families and professionals to see autism through a new lens, one that recognizes the body-brain connection, promotes health, and opens doors to possibilities many once thought were out of reach. Her work is rooted in a deep belief that her clients are capable, intelligent, and deserving of the support needed to unlock their full potential.

Want to keep up with Dr. Dana Johnson’s work? Check out her resources below:

Resources & Ways to Connect with Brittyn

  • Nourishing Autism Collective: Looking for individualized support with your child's nutrition, selective eating, gut health, supplements, or expanding their diet? Join the Nourishing Autism Collective for courses, resources, recipes, expert guidance from Brittyn and her team, & a supportive parent community. Here's the link to learn more: https://www.nourishingautism.co/

  • Food Hopper: Brittyn's app designed to help parents expand their child's diet by tracking food exposures, building a personalized food list, and discovering new foods based on the foods their child already eats. Here's the link to learn more and start your 7-day free trial: https://www.foodhopper.co/

  • Best Part Kids Multivitamin: The sensory-friendly children's multivitamin Brittyn created in partnership with Harkla, available in unflavored and berry options. Here's the link to learn more or to purchase: https://bestpartkids.com/

  • Free Resources on Nutrition for Autism: Visit www.autismdietitian.com for freebie PDF download, free blog articles, podcast episode archives, & additional nutrition resources for you and your family.

  • Masterclass for Nutrition Practitioners: Are you a practitioner, or do you know a practitioner, who wants to better understand nutrition and supporting autistic children and families? Learn more about Brittyn's practitioner masterclass here: www.autismdietitian.com/masterclass

  • Follow @AutismDietitian on Instagram!

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TRANSCRIPT

Brittyn:Hello, everybody. Thank you so much for joining us for this episode of the Nourishing Autism Podcast. I'm really excited today because I have Dr. Dana Johnson here, but I also have members from my membership, the Nourishing Autism Collective, who are joining us as a part of a live podcast. This is something I've never done before, so I'm really excited to be able to answer some of those live questions that come up while we're here, and then also be able to talk to Dr. Johnson all about apraxia and what that means for kids on the autism spectrum. It's gonna be such a good time. Thank you so much for being here, Dr. Johnson, and tell us who you are, what you do, and who you support.

Dr. Dana Johnson:Thank you so much, Brittyn. I was looking forward to this since we talked about it, which was a couple months ago, so this is great. Yes, so my name is Dana Johnson. I'm an occupational therapist. My master's is in occupational therapy, and I did my PhD in child mental health and development.

I just wanted something completely different somewhat, but was able to dive into that, and then I also have advanced training in functional and nutritional medicine, which also comes into everything that I do. And I work with those with complex autism, so the majority of my clients are non-speaking, unreliably speaking.

Many of them have lots of medical complications in addition to autism. Some don't know they have medical complications yet, and so that's part of what I do and help refer them to other professionals who can really dig deep into some of their needs because some of that comes out as, aggression and more intense dysregulation.

So I also work with parents and do more consulting. So I do work one-on-one with my families, and when I do work one-on-one, part of what I also do is I'm co-founder of Spellers Method, and so I support them with reliable communication. And then beyond that, I work with families doing more consulting on looking at whole body apraxia essentially in everyday life, and part of that also includes nutrition, diet, all of those things which you are all really familiar with just with Brittyn and her expertise.

So everything plays a role, and it's not just one thing, and so I really help families get organized and get on track with as much as they can in their own time. So that's what I do every day.

Brittyn Coleman: That's incredible. Thank you so much.

And we've talked about this a lot and, of course, I think we just have a huge client base in common. And so I have a lot of clients who, of course, have eating difficulties- ... and haven't understood that their child also experiences apraxia. I know that, there's a huge overlap here, so I'm excited for you to share more, and who may be more inclined to start looking into an apraxia- which I know is not a diagnosis, it's a symptom, right?

Dr. Dana Johnson: It, yes and no. It depends on the category. So I can kinda talk a little bit about that, right? Yeah. And I saw the questions that some people had, which were great, so we can dive into this too. And one of them was something about how "my speech therapist says that my child doesn't have apraxia, but from what you're saying, Dana, I think that he does".

So is it or isn't it? So I'm gonna define the different categories. So first thing is childhood apraxia of speech. That is a diagnosis, and that's given by a speech therapist, and there's specific criteria to fit into. So for that specific family, your child didn't fit into that category.

I work, like I said, with non-speakers, and they don't speak at all, and so they also would not fit into that category because childhood apraxia of speech is that they do have the intention to speak. They do speak, but it's the clarity the articulation of it is not clear. And so they really work on the motor skills of those fine motor movements to improve articulation so then you can understand them.

But I have clients that do have apraxia of speech, and it is very evident. So I understand that's one category. The other category is acquired apraxia. So somebody who has a brain injury, who has an accident, they were not born with that, essentially, is acquired apraxia. So that's the other category. And then there's a category of more dyspraxia, and that's what I was introduced to as an occupational therapist, where it's clumsiness and it's uncoordination.

And the medical diagnosis, so a diagnosis that's in the DSM-5, is developmental coordination disorder. Now, my clients that I work with, I feel they don't fit in any of those categories. And so it's frustrating because I'm like, it's not just speech, and many of them, like I said, they don't get that diagnosis, and it's not acquired because they've had it since day one, and then it's more than clumsy.

It's more than just lack of... Many of them are very coordinated. They can scale things, right? It's their job. So where do they fit here? And so I started to talk about whole-body apraxia, and it's not a medical diagnosis. It's not in the DSM. Dyspraxia isn't even a medical diagnosis. It fits under developmental coordination disorder, but it's still considered a symptom.

And so whole-body apraxia is a symptom, and I wanted to make it very clear. And so my clients, it affects the whole body, and it's dyspraxia, like I said, is more clumsy, where apraxia is literally the breakdown in praxis, and praxis is our ability to learn new movements and the sequence and planning and organizing that it takes for us to be able to do that.

So it is a complete and utter breakdown of that motor planning. So that's where whole-body apraxia came from, was when I'm like, "I need something to describe this." And so that's really where on all my social media and everything that I do, I refer to it as whole-body apraxia, which is the breakdown of the praxis or motor planning even when the individual understands and comprehends what's being asked.

So that's the definition of whole-body apraxia.

Brittyn Coleman:I think that's so helpful to understand because it, again, it's like giving a term to something that's very- ... widely experienced. And again, like on the personal side, after my husband's accident, he understood everything. I know, of course, this would be acquired apraxia. But understanding everything, but not being able to act on it. And so a lot of times he would have nurses come in who would be talking about him, I would be like, "You can talk to him. He knows what's happening even though he's not able to execute anything on top of that or follow a command." Or speak. And so it was interesting timing when I was introduced to you because it all started making a lot more sense. But for everyone here who has kiddos who they're interested in apraxia it's very similar, but just in such a different way.

I am excited for you to talk a little bit more about the connection between autism and apraxia and what the research says and who should be looking and considering if apraxia is a part of their story as well.

Dr. Dana Johnson:Yeah, absolutely. As far as research goes, I first learned about just motor planning differences in autism by Dr. Elizabeth Torres, and she has done a lot of research. It's interesting because her initial research before she got into autism was in Parkinson's. And if you think about Parkinson's, it's the difficulty with initiating and sequencing and keeping our body moving, right? That traditional shuffle of the feet, right?

And so she was doing research in Parkinson's and then was introduced to autism and really started to go, "Huh, I'm looking at these individuals' behavior", and this is where I started really diving deeper into it because when you think about autism and you're assessing autism, we assess and diagnose autism observationally.

There isn't any blood test or anything like that right now. So we're observing an individual, and we're looking at their behavior. And if you break down what is behavior, behavior is actually movement, and most often when we're observing behavior, it's physical movement. Now, there's cognitive as well, but we can't see that, right?

So when we're getting an assessment, and I was taught this in OT school that you have autism and those that are non-speaking or have more complex autism, then they also, because of their behavioral responses to things, repetitive behavior, social communication, we'll talk about that in a second, they then typically are also diagnosed with intellectual disability.

And so that was just what I thought, what I believed. Okay. Then I was introduced to Dr. Torres and her work, and then working in this population, and then me understanding what motor planning is, I'm like, "Okay, but wait a minute, behavior is movement, and if they're struggling with sensory processing..." which I think if you're a parent of a child with autism, you know that your child has sensory differences.

It's part of the challenges in some cases with it. And so they're going to have some motor planning challenges. If you have sensory processing challenges, you're gonna have some motor planning challenges. We all work like that. It's the incoming sensory information. If your brain can't process it efficiently, then that's going to affect your behavior depending on what the situation is, right?

So that's when I started to put things together and go "okay, so we have this behavior that's essentially movement and demonstrating movement, but what about this intellectual dis- how are we like looking at that?" Right? And just society-wise, if somebody isn't speaking, then we tend to just assume that they can't understand and they can't learn.

Wherever we got that from, it is what it is, but it's not true. And an example would be, Brittyn, just what you said with your husband, right? We would never say, "Oh, just because he can't do this, or this, then he doesn't understand anything." Now, some people might say that, but other people it's, "No, he understands everything. He just can't demonstrate it." And so that's what I started to dig deeper with this and look more neurologically and just with the central nervous system, regulation, and I was like, wow, we are limiting these individuals and assuming things without actually knowing what their true abilities are because it came down to this.

Every single way to assess an individual's ability, it could be physical, it could be intellectual, it could be knowledge, like school academic tests, it could be any of our PT, OT, speech therapy assessments, all require intentional, intact motor systems. And these guys and girls do not have that because of their sensory systems, and then even more, the complexities that come with autism.

So, they then go into school and they're already in the ASD class because that's just what happens, which they don't teach to grade level. And if they wanted to go to grade level, they would have to assess them and they'd have to prove that they could actually learn to go into this class. Unlike us, who our teachers were like, "Yeah, I'm gonna presume competence.

I'm gonna presume that, that student can learn." Until I- if it was me demonstrating that I had trouble learning, then they would give us supports. But my clients have to prove that they have to be in there. But they can't, it's impossible because they have a motor planning disability.

And so you start to see where there's these major gaps in understanding, and it all comes back to whole body apraxia and the difficulty with intentionally moving their body. We are trained to observe. I go back to how is autism assessed? We're trained to observe individuals, whether they're autistic or not.

But specific to autism, okay if I'm asking them to do something, and there's a delay, it looks like they don't understand, they don't want to, or they didn't hear us. We don't talk about the difficulty with initiation. And they can't initiate their body. And we go back to Parkinson's and look at, why is that happening?

Guess what? Those with Parkinson's, it goes back to the basal ganglia, which is our motor control center. Where's the research in autism and challenges? Now we're looking at the basal ganglia, and now we're looking at motor. So it's coming along, but it's just not there yet. And so that's where I've been over these number of years and coming to this conclusion to kinda go, "I'm gonna presume competence in all of my clients, and that it is a motor planning issue until otherwise."

I have to teach them motor, just like if I wanna learn how to play tennis, I'm gonna hire a tennis pro to teach me because I wanna improve. So if I need to support one of my clients, I'm going to teach them the motor skills first before I just assume that they don't understand me.

Brittyn Coleman: That's just really mind-blowing, and it makes so much sense, too. I actually have the sticker, it's the only sticker on the back of my laptop, and it just says, "Presume competence."

And I've always had it for my clients because I agree with everything that you're saying. And then it also has a new meaning to me now. So I've two questions for you, given all of that. So first, who would diagnose apraxia? And then what would treatment even look like? Like how would you work with your clients to be able to help, I don't know, overcome apraxia, is the right word?

Dr. Dana Johnson:Yep. Yeah, and I think that for diagnosing, right? That would imply that there's something that's not a symptom, it's a diagnosis. And so going back to childhood apraxia of speech is diagnosed by a speech therapist.

So that's its own thing, its own category. And so some of my clients do have that diagnosis, yes. But for me as an OT, I am looking and I realize in this process of answering this question, I didn't actually answer your last question about autism and whole-body apraxia. And what I've come to learn in the number of years that I've been doing this, which is a long time and I can't believe that, but I love it, is those with autism have whole-body apraxia.

It comes together because of the neurological underpinnings that we're seeing in the research right now and what we're looking at. It's also related to, I've done a lot of reading in gut-brain access, right? And neuroinflammation and what that does to the brain, which then can affect, movement, intentional movement.

And so what comes with autism also contributes to whole-body apraxia. Now having said that, I would say that my unreliable speaking clients, so they have autism, they do have the ability to speak and do speak clearly, but it could be in movie scripts or echolalia, right? It's not back-and-forth conversational.

I say that they're less apraxic because a lot of times parents will say, "Oh, they've got some great motor skills. They're doing this and they're doing this and they're doing this." And I'm like, "That's fantastic." But it's, it always goes back to that on-demand or the ability to slow the body down or speed it up on demand.

So they have great coordination and they can learn things very quickly, but it's also that piece and control of it of being able to- okay, whoa, pause your body, hold it here. Don't move. That's really challenging. So there's also a spectrum, if you will, of whole-body apraxia.

Now, I have clients with whole-body apraxia that do not have autism, so it's not just it doesn't work both ways. But with autism, I haven't met an individual with autism that doesn't have some whole-body apraxia in terms of the motor planning challenges.

Brittyn Coleman: Okay. That's so interesting.

It sounds like there's a lot of research, coming in right now, it makes so much sense. And I feel like it always takes a long time for the research to really meet up. We learned in school, what? 15, 20 years for research to be published, then be taught in schools, something crazy.

Dr. Dana Johnson: Correct.

Brittyn Coleman:I'm just so happy to have you talking about this because it's so relevant and can be helping people now and not 20 years from now. So, you said a speech therapist would be diagnosing childhood apraxia of speech, but you're saying whole-body apraxia, that's a different...

Dr. Dana Johnson: Yeah. And it's really, again, I was not taught this in OT school. So I have families that come to me all the time, and they're like, " number one, I'm trying to get a diagnosis of whole-body apraxia. Can you do that?" And then I explain, this is a symptom and right now that's what it is.

If hopefully down the line we can get that as a diagnosis that is within autism and also not, but at least have it recognized because that's when things like OT and PT is also going to have to shift to go beyond just fine motor skill issues and gross motor skill issues. Because that's what I was taught. I was taught about praxis and the ability to learn new motor movements and motor planning and dyspraxia, which is the clumsiness and the kids that developmentally we can identify that early on, and then, yes, we work on building those motor skills between OT and PT.

I'm talking about my clients, and I see clients from very young to my oldest is 58 years old. So there's a huge range, and they too have whole-body ... They cannot initiate. They cannot inhibit because that's also a challenge. And they cannot sustain, keep that movement going. And so you start to see this challenge which affects everything because everything that we do requires that intentional motor planning.

Brittyn Coleman: So I've experienced in my career that most dietitians aren't familiar with autism and the sensory friendly approach.

Dr. Dana Johnson:Correct. Yeah.

Brittyn Coleman: I would imagine that when it comes to OTs and PTs, it's not the norm for people to have this kind of training. Or even speech therapists, how would you even locate somebody who would be able to besides going to you, which you're in Atlanta, right?

Dr. Dana Johnson: I'm in Tampa and Atlanta. So I physically live in Tampa, but I have clinics in Tampa and Atlanta. So I see families at both locations, but that's the hard part and I'm being pulled in two different directions, 'cause I have families that are like, "I want you to help support families, and families need to know this so they can help their kids."

And yes, absolutely, but then it's "Can you also coach and mentor OTs and PTs and-" And I'm like, " yes, I would love to do that, too, I would love to do all of this." And so what I do right now is, even just through my social media channels, I have lots of OTs that reach out and PTs that reach out, and even speech therapists, which is great, because early on in my career, it was hard. And I'll say I'm originally from Canada, so I did get my master's in OT from Canada, and up there, the scope of practice is a little bit different between OT and speech, and we would also work together because, in my mind it makes sense.

Addressing some of the sensory piece, and then being able to help support speech and the movement of the articulators to form words. But then down here, just, it was a little bit different. So it was much more like OT did their thing and speech did their thing, so the fact that speech therapists are interested because what I found early on is that when you say apraxia and speech therapists are like "no, he doesn't qualify for that," then parents were confused.

And speech therapists didn't realize that, okay this can affect the whole body, not just speech and feeding and that's a problem 'cause then parents are confused and that's not what we want. And so now even googling, if you google apraxia, that's what's gonna come up, is childhood apraxia of speech.

So hence, a number of years ago I started my YouTube channel and started more heavy social media on this just to get this out there so that most importantly, professionals can learn about this. And speaking at conferences. I'll speak at a variety of different conferences, not just OT or therapy, because I want the trickle-down.

I want to go to doctors and physicians and go, "This is something that you need to be aware of." Because this is, this can change the trajectory of somebody's recommendations and referrals because, again, going back to behavior has always been that negative thing, right? And for a lot of the parents that I work with, and even my clients, they've gone through intense behavioral therapy and the individuals that it didn't do anything except in some cases, unfortunately, traumatized them.

And that's significant because they're just being misunderstood. And even OT, I had my clients say way back when you were doing your sensory gym, which I had the whole thing. I had a sensory gym, I had the ball pit, I had all of it, and, it was my client that was like "nope not doing it for me."

It's fun. The sensory gym's fun. I love swinging too as an adult, super fun just to get out there. But they're like "I have this disconnect, like I can't control my body." And that sensory piece, because I'm not or the client isn't engaging in connecting the body with the brain because they're not participating in the movement, they're getting a lot of sensory input from the trampoline or the swing, but there's no intentionality, we're missing a massive piece of the problem.

So that's a little bit more of my history with it but I was one of those therapists way back when who didn't presume competence. I said I did because not saying that is bad.

Brittyn Coleman:You don't fully understand what that means. Yeah, it's like you didn't fully understand what it means.

Dr. Dana Johnson: Totally.

Brittyn Coleman: Of course you do. But there's a deeper level to that. And this is actually a perfect lead-in to one of the questions. So Renee, and she hopped on a little bit ago, she is a member inside of our membership but also she's our community coordinator.

She's the best. But she was curious because her speech therapist was sharing that apraxia looks like trying to speak but saying the wrong sounds. And so Renee was always confused. If her child is non-speaking, but she's not trying to speak, could she still have whole body apraxia?

Dr. Dana Johnson: Yes. Oh, that's the majority of my clients. That's the majority, because when, just that definition, right? Trying to say something but something else comes out, that's actually what I see in my clients with their whole body. Trying to do something, but they do something else. So I'll say, "Your body is trying to do something, but it won't, or it's doing something that you don't want it to do."

'Cause both can be true, right? And then the most challenging part for both the individual and the family is that it's consistently inconsistent. So one moment they go and they do it, and then the next moment it's like they've never seen that whole thing before. Or you've never asked them to do it.

And the trick is the on-demand, right? Because parents will say, "Yeah he'll just go and pick up his backpack and walk outside, and we're not even going to school, but when I ask him to do it, because, it's time to go to school, and he doesn't do it, he doesn't move, you know, it's a fight."

It's actually a good example of this, because I also say to parents, "Yes, you have to think about this as on-demand request, and that's challenging, but also not going to say that your 10-year-old child doesn't wanna go, maybe he doesn't want to go to school, right? Like that could be true, too, and so that's where more of the challenge comes in. But I always say, ultimately he's gotta go to school. That's being a 10-year-old kid, so we have to do it regardless. And so I don't want you to get stuck in, is it this or is it this? It's literally I always say assume it's the whole body apraxia that's preventing them.

Because I don't have a client, very often at least, that says, "I don't want more control of my body." They all want more control of their bodies, and so it's like they're the hardest working. When I do intense workouts with them, and it's very individualized to what their needs are, and support in how I work through this with them, I'm the one that's "Okay, can we take a break please?"

I'm exhausted. It's not them. Usually the age difference plays a role, too. But it's also because they feel so good doing this. I have control, so I wanna keep going and building those motor pathways. This is what I love. So yes, I think that that is true, is that even though your speech therapist, because remember speech therapists are diagnosing just this, not whole body.

And so if you're looking for what are the symptoms or what are the things that accompany it it's that. It's what do they do on their own versus on demand, right? They can do this when they just wanna go do it, but when I say... and that's when parents then start to get in their head, they're not listening.

They're intentionally doing this because they don't want to. And so much of this is the mind shift of understanding that. Because once we can make the mind shift, then it's easier to know what to do. If we're gonna go down the hole of your belief system which is what I'm seeing is them doing this. Yep, that could be true, right?

That they just are being a 10-year-old and they don't wanna do it. That is an option, but that's not a fact. We don't know that. It's a belief that you have, and so it also could be that they can't initiate their body in that moment on demand because of the disconnect. That could be true, too. So we have to start shifting and that's a lot of what I do with parents is I go through what are you observing?

What are you seeing? Where are the struggles? And then let's almost reframe that to go, this could be what's happening, so let's try this to see if this is gonna support them.

Brittyn Coleman: I love that. And while you were talking, it made me think of one thing that our neuropsychologist had said to us and was explaining to Jack that she was like, "Think of your neural pathways of it's all one big corn field," is what she said.

She was like, "The first time that you go through there, it barely leaves a mark, but it's every day that you keep practicing and keep trying imperfectly, it keeps plowing the way a little bit further. And so after all this practice and initiating and keep going, it does get

easier and easier but now you have this new pathway." And I thought that was a really interesting way for me as a visual thinker. It made a lot of sense. Now as you were talking I was thinking through a few of the members that had questions because it relates so perfectly to what you're saying.

So one of them, Ali says, "My twins can read an entire sentence from a book, but can't initiate or hold a conversation." I was curious what you had to say about that.

Dr. Dana Johnson: Yeah. That's great. I love that question. So if we break it down, okay, We have to talk about there's a motor demand, which is the speech, and there's a cognitive demand, which actually is the language part of it.

We're not gonna go too deep in that, but essentially, we have to hold a thought, an idea, a response in our head while we are doing the speech. We perfected it at the same time, right? So there's a time for us to listen and to take everything in, like you are all doing now, and then if I'm asking a question, then you take that thought which you've held or that answer in your head, and then you can respond with it, which is the motor part, right?

So there's the language piece, which is cognitive, and then there's the motor part, which is the speech part, okay? So the breakdown with apraxia, whole body apraxia, affects everything including this connection too, right? So your kids can read something because the cognitive demand is low.

It's right there. We're reading it, okay? It's like my clients that want to communicate with a keyboard, and they're able to copy things. They can put into YouTube their videos that they wanna watch, but they can't type spontaneously to use it as assistive technology or an AAC yet because the motor demand is too high and the cognitive demand is too high.

So when it's speech related, okay, then they don't have that visual cue of, the words on the page to lessen the cognitive load, so now we can speak. Okay? So it's constantly this balance of the cognitive load with the motor load. And so when I'm working on spelling and when I say spelling, I'm talking about communication using spelling that's what I do, is I have to work on the motor skills first before I ask them how was your day?"

We have to balance this out because not that they don't know that and they don't have a response for me, but any method right now requires too much motor control and it's off balance. And so you're gonna get nothing, or you're gonna get frustration, or you're gonna get a scripted response, right?

And so then we take that and we go, "Didn't understand." Yeah. And so the individual's left with, "No, I do understand," right? "I just can't ... I don't have the motor skills." So when you think about the articulators and the eye movements, and I talk a lot about vision because it affects so many of our kids, but our eye muscles to intentionally move our eyes, because our eyes direct our body, so the majority, if not all of my clients, have vision and ocular motor challenges because of the whole body apraxia.

But the eye muscles and the articulators are the finest motor movements of our body, and that's what we're determining everything on. So we have to rethink that a little bit.

Brittyn Coleman: Oh, yeah. I feel like everyone here is probably rethinking everything.

Dr. Dana Johnson: I did. Yeah ... yeah, this is almost my process, right?

And I questioned a lot of what I did, and I went back to a number of clients and I apologized because I'm like I didn't know what I didn't know, and now I do, and so I'm changing everything. But I apologize, for some of the things that I did or said or, talked about you in front of your parents.

That just crushes me now, when I meet new families- It's funny to see the response, but I meet new families, I walk out to the waiting room, and I find my client and I talk to them first. And parents are the second. I introduce myself to everybody, but I go and I engage with my client first, introduce myself, let them know what this is about, and then introduce myself to the parent.

And then we all walk in together.

Brittyn Coleman: Yeah. That's how it should be. That's amazing. Another question that kind of piggybacks off of everything that you've said. We have a question that says, "My son was diagnosed with apraxia of speech and we just started our spelling journey one month in. So now I'm finding out that verbal apraxia is different than global apraxia, and helping to define all the differences would really help." So I know you've covered a little bit of this already, but could you speak to the spelling journey and a little bit of what she's asking about?

Dr. Dana Johnson: Yeah. Yeah, for sure. Sure. Now, global apraxia, some people interchange global apraxia with whole body apraxia and that was, what I first heard too, and then it was like, okay I want people to understand that it's more specific. What she's saying is essentially whole body apraxia.

So yes her son does have childhood apraxia of speech and also whole body apraxia. And so with the spelling, which I'm very excited about too that you're on that journey because, that's also what I do, and I get to see, the journey of many families who have now communication with their kids.

But really, what that is, is working on the motor skills to poke the letters or to point to letters on a letter board. So you may have seen, some of you may have seen it, some of you may not have seen it, but the movie Spellers which is free on YouTube. You can go to YouTube and literally in the search button go Spellers the movie, and it will come up, and you can watch it.

It's an hour and 20 minutes, and that was a documentary that I was involved in and really does show you what teaching motor skills, understanding whole body apraxia can do for individuals who are non-speaking. And so I think that what I say to families when they're first starting this journey is, "Don't think about this yet."

It's hard, but yet, as a form of communication, think about this as if you were picking up golf or tennis, right? You don't go out on that first day and play in the PGA Tour, right? No. You're learning the skills, you're learning the stance, how to hold the club, how not to miss the ball.

Like, all those things, right? And all of that is motor. All of that is you are learning a new motor plan. And so I say that to the families. Think about this first portion of what you're gonna do as learning the skills just to point to a letter, because I will write out for each parent all the things that your child has to do with their body in order to poke one letter.

And it really puts it into perspective, because what it looks like on the documentary or even just seeing it in real life, if you've been able to see it, it looks so easy. It looks like, holy cow, but they don't see that beginning part. And so that's how I explain it. I explain just think back to when you started a new anything.

Playing the guitar, right? You have to build those skills in order to be able to get to the tournament or get to be a professional, and that is the open conversational communication that my clients will then be able to determine their own goals.

You wanna go to college? Do you wanna get a job? Like, all of those things, that's how we get there. But we don't start with that because we base everything on that motor planning and building the motor skills.

Brittyn Coleman: Yeah. Wow. Yep, you have to build the groundwork before you're gonna be able to see. I have two more questions for you. I know that we're getting close on time, but this piggybacks on the other one, but I'm curious, if speech is delayed, then verbal speech starts, how can you distinguish between apraxia or a speech motor delay? Or how are they intertwined?

Dr. Dana Johnson: Yeah, that's a great question. And I think, I get this question somewhat. It's a little bit different, but if some of my clients that I see have unreliable speech. So they do say some things but it's not always reliable. Parents are like if we do this spelling and we're practicing this will then he just not speak?

Is that something that happens where, he's just stops speaking because now he..." And I'm like, "Never have I ever seen that," mainly because that's a lot more work. If he could speak, any of my clients, they totally would. And what I've seen is that because we're working on motor skills by working to practice to point to letters, and then with me and my clinic, I have OTs that are all trained, under me, that also work on the intentional motor piece or the whole body piece, that together helps motor skills in general.

Yes we are individualizing things, but I've had clients that have the unreliable speech, they actually get more reliable. And they get to a point where they initiate a little bit better. So we're starting to see the improvements not only in their entire body, but also just some of that more purposeful speech, which is really great.

So yeah, I work with littles, like little littles too, where they're not even spellers yet. I start with spellers usually around five or six because ... Not because they can't spell until then, it's because what five-year-old is gonna wanna sit in the chair for longer than 10 minutes, right?

So we primarily focus on building the whole body motor skills. And that then is going to also help with any motor delays. So I would just suggest that any of the therapies should be focused on building the entire body. And what I also mean by that is looking at core, like looking at how strong is the core, because if our core is weak, our fine motor skills, our limbs, anything is going to be exceptionally challenging. And that's part of the problem with OTs, is because they are told that you need to work on fine motor skills. And I'm like, "Yes, but he can't even sit without falling over," or I'm like, how is this gonna happen? So we have to think logically through it.

But as long as it's a motor-focused intervention, we're gonna start to work on whether it's apraxia of speech or whether it's just speech motor delays.

Brittyn Coleman: Great. Thank you for answering that. Makes a lot of sense. My last question is about anxiety and apraxia. And if anxiety can be...

this question is from Stuart. And if anxiety can be like a mental blocker that's preventing them from engaging, attempting, or progressing anything that requires motor skills.

Dr. Dana Johnson: Yep. The answer to that is yes, and I think about it, if we think about our brain and how it works, If we're anxious about something, we're gonna be limited in our ability to, one, think through things.

We're gonna be saying things that we may regret later. We don't say things. Our body isn't as all well put together, so to speak. So I think we have to think about that as just even ourselves, and apply it to that piece of it. Now, I have clients that we talk about this with families, where it's because they have whole body apraxia and they struggle with impulsivity or more dysregulation, self-injurious, those are my clients.

Is it that they had whole body apraxia first, and then now they have severe anxiety, or did they have a... And you know what? It could be either one of those, but they definitely play a role together. And so part of what I work with parents on in one-on-one sessions is regulation and what that looks like, but not only for your child, but yourself, because your regulation is your most powerful co-regulator for your child.

And so that piece of it is going to help bring everything down so that we can work on building those intentional movements. So yes, anxiety is going to prevent the initiation of something, movement, and sustaining the movement, and may even elicit, that challenge with inhibition. That's where the, quote, "elopers."

I don't like that term because I don't believe that the majority of individuals who run off or elope want to do that. It's their body. They can't control it, and I do feel that's part of the anxiety response. It's fight or flight. Like, when you're in that intense anxious state, and you get to that level, that's what your body's going to do, and you have no control over that.

Zero. So I think that, it's very individualized specifically with that, and when I'm working with families on it as far as the anxiety and the whole body apraxia piece. But yes, they can... They are interrelated, and they can affect each other.

Brittyn Coleman: It just feels like this is such a huge missing piece to so many family stories, and really put words to an experience, and I think sometimes that just helps validate the experience that they've been having where they didn't understand or maybe looked at it through a different lens, or always knew that their child understood but felt like nobody else saw that. And so I think that having the understanding behind this is just really powerful, and that goes for so many things, but I think just, how we can better understand and support our kids, it makes such a huge difference.

Thank you to speaking to all of these. It seems like apraxia is intertwined with everything.

Dr. Dana Johnson: It is and if it's okay, Brittyn, I do, I just, something popped into my head that I do wanna also address, which is specific to feeding and eating and I know that's obviously what your community is in addition to, food.

But something that I see in my clients, which families don't always associate the whole body apraxia piece related to feeding, and that is that I have clients that will eat really fast or really slow and that's to do with the whole body apraxia piece because they can't inhibit or they can't pace.

They can't slow their body down in general, and so then eating a meal, it's like speed, right? And the other side of that is they can't initiate, so every single bite is "Ugh," right? As you probably talk about, like chewing and all of that, it's all motor, right? And if we have whole body apraxia, that is going to be a big deal, and even to the level of digestion. I know there's autonomic stuff that's happens there and, you can't control that. It's not intentional, but it also has an effect, and so that's where we see GI stuff. But ultimately, I think I see the biggest aha moment for some families is when they hear their speller or their child is now spelling and using that, and their son or daughter saying, "I don't like... whatever" and the parents are like, "Yes, but you eat it, you inhale it.

You ask for it verbally," or, you only want this all the time. And that's not, it's, they can't stop their body from eating it. And so that's apraxia, too.

Brittyn Coleman: That is really interesting.

Dr. Dana Johnson: I had a client where before we even met, that's what mom would say is she would just go, and mom thought it was great.

She comes home from school and she can make her own smoothie, and it's, like, all these things, and she does the same thing over and over, 'cause she was practicing it so much that now it became automatic, and so this is what she did. And if she didn't do it, it would become something that was dysregulating.

Mom was like, "Oh, she must really love this." So once I met her and her mom, I remember, called me and was like I don't know what's going on, but she's really dysregulated around this whole smoothie thing." And so at that point, she was really far along on the process, and so we could communicate openly and she would share her thoughts, and that's what she said.

She said "I've never liked it from day one."

Brittyn Coleman: Wait, that's so interesting. Okay, you know what I think that we need? I think that this is part one of this podcast. I think we need a part 2. I think we need a part two, and I think now that we've fully explored what apraxia is, how it's connected to autism and speech, and now I'm like, now I wanna dig into the new

things 'cause I feel like we need another 30, 45 minutes to do that.

Dr. Dana Johnson: Part two's coming up. Part two. Now there's a part two!

Yeah, because it is very dependent. It's definitely individualized, but there are things that, I've learned from all of my clients that can definitely make a difference. So for sure, that would be great.

Brittyn Coleman: I love it. That sounds great. So how do people get in touch with you?

Where can they get support if they don't live in Atlanta or Tampa, and how do you support families?

Dr. Dana Johnson: Yeah, so I, one of the biggest things that I did a year ago was start a YouTube channel just because I just needed to educate, and I want to educate professionals and families. And so that is where you can learn a lot more about whole body apraxia and all of the different areas that it encompasses.

I do a video once a week, and so that's a great way to educate yourself. You're welcome to connect with me. I do offer a number of freebies and access to my newsletter. And then on social media, I'm Dr. Dana Johnson on Instagram and then Facebook.

And yeah, so that's probably the best way to reach me.

Brittyn Coleman: Perfect. That's amazing. Thank you so much, and I'll be sure to tag you and your YouTube channel and everything in both the Collective and then in the show notes inside of the podcast as well.

Dr. Dana Johnson: It's been great. I know that people think about this stuff, and it's awesome, and I'm glad to be able to do another one because, yeah, I wanna make sure that I can give some support, and to help out. So there'll be more questions after this too, which would be great.

Brittyn Coleman: Definitely. Yeah, there will be. We'll keep in touch and we'll figure out how to schedule part two so that we can answer all of the questions and talk about feeding and dig deeper there.

Dr. Dana Johnson: Yes, that sounds great. Thanks, Brittyn.

Brittyn Coleman: Thank you. Thanks everyone for joining us from the Collective.

This was really fun. I hope you all enjoyed it too and got something out of this. I can see some of the chats coming through. And if you all have additional questions, feel free to throw them into the Collective as well. That's the perfect place to put them. And then this podcast will be coming out probably in the next four to six weeks, I would think.

Thank you so much for being here. This was so fun.

Transcribed by Descript

About Brittyn Coleman, MS, RDN/LD

Brittyn Coleman, MS, RDN/LD, is a distinguished Registered Dietitian and Autism Nutrition Expert, known for her innovative, sensory-friendly feeding approach to nutrition for children on the autism spectrum. As the founder of the Nourishing Autism Collective, and as an autism sibling herself, Brittyn brings both professional expertise and personal understanding to her work. She empowers families with her expert guidance, helping children receive essential nutrients for optimal health and development. Her strategies are tailored to the unique dietary needs and sensory preferences of each child.

Brittyn's influence extends beyond her membership site through her active social media presence and her popular podcast, 'Nourishing Autism'. Her educational content on Instagram, YouTube, and other platforms has established her as a leading voice in autism nutrition, providing valuable resources, practical advice, and a supportive community for parents and professionals. 

Brittyn Coleman, MS, RDN/LD https://www.autismdietitian.com
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