Latest / Inchstones with Sarah | Autism Advocacy & Caregiver Stories / What If It’s Not Behavior? Understanding Whole Body Apraxia in Autism with Dr. Dana Johnson

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What If It’s Not Behavior? Understanding Whole Body Apraxia in Autism with Dr. Dana Johnson · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:01
  Speaker A: Hey everyone. Welcome back to a really exciting episode of the Inchstones podcast. Today's conversation sits right at the intersection of something that I hear from mothers and caregivers all the time, but that doesn't always get taken seriously in most clinical spaces. That quiet, persistent knowing that my child understands more than they can show. And at Inchstones we treat that knowledge as data and not wishful thinking. It's not denial, but it is data. And, and when you're raising a child with profound non speaking autism, you're not observing those patterns from a distance. You're. You're living inside those patterns and those inconsistencies and those moments that don't quite fit the narrative that you've been told. And too often those moments that you have and collect get dismissed. And so today I'm so excited to welcome Dr. Dana Johnson. Here she is a occupational therapist, researcher, co creator of the Speller's method, whose work challenges some of the most deeply held assumptions about autism communication and what we think about when a child can't reliably respond. If we misunderstand our children, we do limit them. And I think the misunderstanding, the limits of our current models, we limit them to. So we're going to hold two things as truthful maternal intuition and the need for clarity and rigor. Dr. Dana, thank you so much for being here today on the podcast.
• 1:29
  Speaker B: Thank you. I'm excited to chat with you a little bit, Sarah, thank you.
• 1:34
  Speaker A: Of course. Well, let's dive right into a topic that I love, which is really discernment intuition that leads to clarity. So many mothers listening feel that their child understands more than they can express. And from your perspective, what are those clearest signs that point to this motor based barrier rather than a cognitive one?
• 1:54
  Speaker B: Yeah, it's a, it's a, it's a big question. And I think that something I've noticed over the years, you know, and really what led me kind of to dig deeper and just expand my career was really feeling these parents that I was talking to were being essentially gaslit.
• 2:13
  Speaker A: Right?
• 2:13
  Speaker B: Like just said, okay, nope, nope, sorry, that's just autism. You just have to accept that. And I just, it bothered me, it bothered me that professionals were doing that right from day one. And so that was kind of the, the intro to oh. So it may not be that professionals, including myself, know everything. And number two, parents do know their kids the very best. And we, I, I mean, I don't think that it was something that professionals were directly ignoring parents intentionally. It was just that that's where it Was like, I went to school, I'm the professional. So I, with that said, and me and my background in ot, but then really focusing on the autism population, I just, I really connected with not only those children of all ages, adults as well, but also their parents. And so I went on a deep dive and just really tried to learn as much as I could. Now in OT school, it was like, well, autism, there's fine motor delays, there's gross motor delays. You know, that's a given. Just like development, you know, they're just lagging in development. They have sensory processing, you know, the whole dsm, social communication, all of those things, along with intellectual disability. And there's varying degrees, right? So that's what I was taught. And then, you know, I had the conversations with parents and heard that, you know, but this is what I really feel. And they would give me examples. They would give me examples of yes. But when I walked into the kitchen, the magnetic letters on the fridge were like words. I'm like. But then they go to their doctor or their kid's teacher, and it's like, well, they're functioning at an 18 month old, I'm like, 18 month olds. Don't go and put, you know, like, it's just. It didn't make sense to me. And then my heart was like, oh, my gosh. These people, like, they're just. They don't get it. And so it was in about 20, 2014, I guess, I was introduced to the book ITO in Autism Land. And it was Ido Kadar. And he essentially total called me out, like, just said ot, did nothing for me. I was like, okay, I need to read this. I need to find out what. Because I had what I thought was the autism clinic, right? That's what I thought. I then based on what he said, because he was like, hey, you know, swings are fun. Who doesn't? I like to go to the park and swing still. And I'm an adult, right? So super fun. All those things. I love them. Did they help my sensory system? Because yes, these individuals do have sensory processing challenges, but they didn't really help with what I needed the most. And that was that my brain did not connect to my body. And my body was this rogue thing that I could not control the majority of the time. There were moments that I could, but majority of the time I couldn't. And so that made me frustrated. So it was when my, my mom, she hired a trainer. So at that point, I mean, my own personal life has always revolved around training, like, physical exercise My undergrad is in exercise physiology, so it was like already ingrained. So I'm like, this is awesome. I can like put all this together. So totally transformed my sensory gym into more of like a workout gym. And from that point on, my whole paradigm shifted because I started to learn about what's called apraxia. Right. It's called apraxia. Now. Where I started to kind of shift it to be a little bit more specific was because I'd have parents reach out to me and go, yes, but my doctor, my speech therapist, they say, no, he doesn't have apraxia. He doesn't meet the criteria. So if you, if you Google apraxia, it will come up as childhood apraxia of speech or acquired apraxia. Right. So, so parents are coming to me going like, I don't understand. So then I decided, okay, I'm going to educate people about this. Going to, I started a YouTube channel and I'm like, whole body apraxia, that's what I'm going to term it. Is it an official. It's not official. It's just a descriptive way of helping to differentiate because it is different from childhood apraxia of speech.
• 6:29
  Speaker A: Very much so.
• 6:30
  Speaker B: Right. It's different from acquired apraxia. So it's those things where I'm just like, okay, we need to help parents understand this because it is a real thing and we can dive into the neurology as well to understand it is going to really, really, really support the way in which you start to direct therapy, you know, depending on, on your child and what they need and also just your day to day life at home, which is huge for all of us.
• 6:59
  Speaker A: Yeah. I mean, you're like, you're hitting on so many things. What I love is that you're talking about going deeper than these surface level behaviors. I went down to the nih, got to speak at the IACC meeting on Tuesday and one of the things they talked about a lot were that we have this blanketed discussion about just these surface level behaviors. Give a diagnosis or a label. What does that deeper level, that whole body apraxia actually look like in practice? Because it's so obvious to me. But help other women and mothers understand.
• 7:33
  Speaker B: Yeah. So when I'm, you know, essentially when I hear my child has complex or profound autism. Right.
• 7:39
  Speaker A: Level three, you know, all of the
• 7:41
  Speaker B: above, I assume that there is a practice whole body apraxia with that. And, and so what whole body apraxia is, is when the individual understands what you're wanting them to do or they have a response, whether that's a verbal response or they actually move their body and so, but they cannot actually make those connections between their brain where that information is received and then traveling down to actually start to, to move the body, right. So it can look like, okay, we have to get to school. I want you to go and get your backpack, go pick up your backpack, go sit in the chair, right. Like you, you ask your child to do something and it could look like number one, they're still sitting on the couch, right. Or they're still in the other room or they walk past their backpack or they go the opposite direction from the chair, right. I think then just because we all just with our neurotypical brains and what we do with everybody else is well, I'm watching what they're doing and they're not doing what I'm asking. So I'm going to come up with the conclusion that number one, they don't understand me, number two, they didn't hear me or number three, they don't want to do it.
• 9:00
  Speaker A: Right.
• 9:01
  Speaker B: So those, and, and by the way, like all of those things could be true, but we tend to have our beliefs and we keep thinking about those beliefs and then that shifts the response.
• 9:14
  Speaker A: That's that classic amplification of a, of a, of a enlarged belief that ends up becoming the pinnacle of how you go through life based on that one. Which is I believe, an assumption or presumption that's not actually based in reality. You know, I always wondered, having a boy and a girl two and a half years apart with the same diagnoses, I'm oftentimes beautifully aware that sometimes their lack of maybe listening or not doing the thing, even though it's the backpack example is so clear in my home every day sometimes, what is the evolution and just natural progression of a boy, a male development and female development too? I sit in this intersection so deeply because I see a boy and a girl with the same diagnoses, they as just humans and children with a autism, an apraxia diagnosis, even watching them go through life with demands put on them as an 8 and 11 year old seems typical in some ways. So the not listening, how is that developmentally typical to just the development of them as children that's not based in apraxia, that's not based in their intellect, that's just part of the human brain development.
• 10:29
  Speaker B: Exactly. And I will always say that to parents because parents will be like, okay, so then it's apraxia or it's whole body apraxia and not that they're not listening. I'm like, possibly. Or they're like 10, right? They're or they're a 10 year old. Yeah. Yeah. So we can't.
• 10:46
  Speaker A: It does back so nicely when you can like have some levity or take away the levity and have some, you know, lightness about it. Because it's like at some times, like we're not looking for them to be perfectly behaved. My 13 year old is so painfully typical that the things that she goes through that might get an arousal from other typical parents of like, oh, here we go, we're entering the blah, blah, blah phase. Yeah, we, that's what we're entering. We've, we've been studying this for decades. Yep, that's what's coming. Yep.
• 11:17
  Speaker B: They're supposed to test the nest and guess what? Your 9 and 11 year olds are going to watch her and watch her and how you're responding. And so I don't ever say that it's always behavioral, meaning they're just not wanting to listen to you. They all like, it's never one or the other. And so then parents get caught up. They're like, okay, well then how do I respond if it's whole body apraxia or how do I know? Or how do I know if it's behavior? I'm like, ultimately it doesn't matter. We're still going to do the exact same thing because they have whole body apraxia. And that is we are going to motor coach. That's what we call it. So coaching their body to be able to get the task done. Because here's the reality. All of us have to do things that we don't want to do. One of them could be, I don't want to go to school today. And that's what the body is, you know, like essentially saying when they're not getting off the couch. Or it could be, I can't just start my body. I can't get my body moving. Because that's very, very common. Initiation is the hardest thing to get moving with someone with whole body apraxia. Just getting the body so that looks intentional, like not being able to start their body. So I'll be like, it, it doesn't matter. They still have to go to school. Right?
• 12:30
  Speaker A: They still have to.
• 12:31
  Speaker B: So let's work the same way. Because so much of this, and this is the easiest thing and the hardest thing to do at the same time. And that is your mindset. Because if you go into this situation as he is just being a 12 year old and is not listening to me, that is going to then, you know, play out in everything. And this is just like parents with their kids in general. Right? This is not like. But it's so, so, so important. And I think we as professional, me as a professional, because I was one of these professionals, we have done such a disservice to you as parents by saying, and breaking these things down as behaviors that we need to approach differently because they don't understand. We don't presume competence until they show us that they understand. Well, if you have a motor planning disability, that's not going to happen. So here we are setting your child up. When I say your child, it's the child of the therapist. It doesn't matter for failure. And so that's why I'm like, this is what needs to be understood by not only the parents, but also the professionals.
• 13:42
  Speaker A: When I give an example to use as just like a macro. Look at this. My children both have a very difficult time still getting dressed in the morning. They require, you know, a lot of input from me. They constant redirection. Presuming competence is one of the things that I as their mother have innately always felt. So I don't have a, I don't have a barrier to me going in and saying, here we go guys, time to get up, let's go, let's grab your, your undies, let's get in a pool. Up that. The way in which I talk about it is my own deep regulation to the environment. And I think what I hear you saying is that that has to be the number one thing even before asking a child to do any task, to move forward in any, in any capacity. Is that right?
• 14:24
  Speaker B: Correct. Yes. Now you already are at the point of presumption of competence. And a lot of the families that I work with are as well. But then there's a lot that are not. And so it's kind of like, well, I can't just like turn on the light and just presume that my kid understands because for Some it's been 35 years of not presuming competence. So it's not as easy. Right, as as that may sound and may be. So that's why when I give a reason to presume competence, which is the neuromotor disability of the nervous system, now there's a reason why I need to presume competence. So that's really what my goal is there is to help get to that point. Because so many people, including professionals, especially professionals, need a reason to do that because that goes against the majority of what they've been taught. Now if you go to a professional and say, do you presume competence in my child? They're going to say yes, because the alternative is very disrespectful. But why then are you still reading Brown Bear, Brown bear to a 12 year old? Because that's not presuming competence. Right. So yeah.
• 15:36
  Speaker A: How much of what parents and educators and professionals are seeing as motor and how much is the word that you just brought up, which is regulation? Like how does, how do those interact in a child who's overwhelmed the majority of the day, you know, from divorcing or separating the regulation piece from the actual motor neuro neurological piece?
• 15:57
  Speaker B: And you can't. Right. They go hand in hand. You can't separate them. It's like I'll say to families and other professionals, like, how well do you think you would do do if you were, you know, let's pick up golf. Because you know, it takes a lot of motor planning. It takes a lot. And you know, you have someone following you with an air horn, right. Like you don't know when it's going to go off, you just know it's going to go off. Like how well will your game be? It's going to be terrible. Right. Like I try and relate specific examples to the parent, not trying to come up with some high level nervous system neurology because that's not going to be applicable. I want the parent who I'm speaking to to feel it because that's then what your child is essentially living with. Okay. There's the potential for that air horn to go off every single day. So they're always, they're going to be at this hyper, you know, vigilant state all day. And so no wonder they don't have control of their body. Right? Yeah.
• 16:55
  Speaker A: You know, this is such an applicable topic in the motherhood world in general. I know that, you know, our algorithms all treat us, all, all treat us and they, it starts to show us things. But in my algorithm a lot comes down to motherhood regulation and my own choices to be the best vers so that I am able to parent children with profound needs. And I was wondering what your thoughts are on what it actually looks like for a mother who feels already maxed out and that we need to allow for time to do what time does, which is slow and steady buildup to being be able to have the capacity to attempt more motor regulation in their home and even addressing the full whole body apraxia because I think what I hear you saying is that if we approach it with. If I'm the mother and I'm just a foghorn and at every time my 11 or 8 year old even so much as does one wrong motion or quickly jerks away, I'm now completely a part of the problem if I, you know, grab or say absolutely not. You know, like that freak out moment. So it's almost like there's a pre planning aspect to this that plants a lot of power, beautiful power in trying to get the mothers and caregivers to have slack in their own regulatory system and not be.
• 18:09
  Speaker B: Yeah, I do a lot of. For sure and I do a lot of work with parents on regulation, their own regulation first. Because it's easy for someone to say you need to be calm. Like who, who can be calm, right? When just be calm. No. And that's the reality. And when actually I did my dissertation on the lived experience of a parent of a child with autism because I don't have a, I don't have an affected child. So I wanted to learn as much as I could because I knew that if I was going to support parents in the capacity that I knew that or I felt they needed, I needed to be as close as possible. So you're right. I mean a hundred percent. And I didn't mean to say that moms are like foghorns following their children around, relatable.
• 18:57
  Speaker A: I mean any mother. I don't care. You've. Well, children or not, we all have our. What I like to joke about the I've had it moment. Like I've had it and that's, and that's reality.
• 19:08
  Speaker B: And we all get to that point. Right. And so I think that, that what I think it comes from a couple of places. Number one, culture, society just puts so much judgment on parents. And I, I mean I go off sometimes on social media and I need to pull back some, but I just, it bothers me because of that. And so that's playing a role when you're walking into the grocery store, are looking right, even though you know, you're like this is your child and I don't care. Right. You go in with the I don't care attitude, which is almost like the other extreme. And so we talk, when I talk to parents, it's like, okay, like you said, proactively, what do I need to do? And it may not be right away coming up with solutions to go into the grocery store. Maybe it's actually remembering what it's like to be in a regulated state, because I can't tell you how many. And it's moms predominantly when I ask them, so what does it feel like for you to be regulated? And they can't answer me because they don't remember. They can't even remember what that feels like. So that's a reality. So we have to start there before we can kind of move into what are some strategies. But it's very individualized. Right. For obvious reasons.
• 20:23
  Speaker A: Yeah, yeah. I mean, and there's, and you, you touched on something as well that I love to speak about and call out is that we, as I turn 43 next month. And so I'm a very solid geriatric millennial and I, you know, grew up in the 80s and 90s where I could have become secretary of State had I just put my mind to it. Right. And I think that we fail to realize as we age as humans and in our stride of our midlife that we have been conditioned by society, expectations, white picket fence dreams more than we can even conjure up, that there's a, there's an unconscious subconscious that's putting things in our head that we expect to be true. And so unless that is even recognized as like, okay, I have been conditioned in a way. I don't know how, I don't know why, but it's causing a regulation that I need to address. And so I think that that's another thing that you're really speaking to here is that it has to go back to some acknowledgment of I am this way too. What can I do about that?
• 21:23
  Speaker B: Exactly, exactly. For sure. And I think then compounding that is therapies from a more behavioral based background is going to tell you that your child is doing these things on purpose.
• 21:38
  Speaker A: Right.
• 21:39
  Speaker B: And so then that is going to. Because, you know, I, I was a kid, my mom, I remember, you know, I knew how to push her buttons. Right. And so then she would then react and you had this whole thing. And, and so when you are being told those things to all that you just said, here we are now, like, I don't even know what to do. I'm at a loss. And so yes, it, it something that when parents can just realize, okay, I, I need to work on myself. It's, I mean they, so many know that. It's not like, it's like, okay, well, never heard this before. But the thing is, is I talk to parents about how you as a parent are your child's most powerful co, regular co regulator, not a ball, not A swing, not squeezes, not all of that external. Those things help, but you are the most powerful. So with that, that I also give permission to parents to go tap out. I can't do this because I know that if I'm walking into the situation or I get into the situation and things heighten, I am not helping the situation. I need to tap out or I need to take a break and that is even more important. And to give yourself perm to do that, which is very hard, I think,
• 22:58
  Speaker A: not to sound like I have my rosy colored glasses on. I always say that I get to parent children like Milly and Mac because it's allowed me to see. And I know other mothers in caregivers feel the same. It's removed so much of what I thought life was to be and forced me into what every major religion, philosophy, theological, you know, proclamation of this world is that to be in the power of now and to be in the moment. And these children require that so much. And because of that, the requirement of that, it begs of me to do better every single second of every day. And those choices, though the understanding of that is not easy. I always want to come back to like, these are not easy choices for mothers and caregivers who are already at such the brink of their energy and ability to get through the day. But that one, one minute, removing yourself for a minute before you go in to your child's room, that you know is going to be a state that you are going to feel a lot of emotions about. But that then why the Inchstones over milestones rose in me so deeply is that we really can build these very small choices over time. And it's not going to be immediate your child's reactions and your child's, like you said, regulations to your regulation is not going to be overnight. And that's okay. It's not supposed to.
• 24:20
  Speaker B: Yeah, absolutely. And that's, you know, part of too what we talk about when I'm working with parents is expectations, you know, because I want to know what are your expectations? Because those are valid. And then we work together to kind of go, okay, so based on your child's individual sensory motor profile and their whole body apraxia, what can we, you know, make so that they're realistic expectations so you're feeling those even, even those like. I love it. I love that your podcast is called Inch Zones. Because when I heard you say, you know, even when I can just like pause before walking into that room, that is huge. That is huge. And, and I tell parents those little pieces that when you. And, and this is how we all work, right? Like these little Inchstones all compound and come together and, and we get to that next step and that next milestone or whatever that is. And you know, I love when I can look back and I do this because I think it's important when I start working with a family and then we, you know, continue on and then I will refer back to remember when, you know, because in the day to day for all of us it's really, really hard to see those moments. But oh my goodness, when you list all the things that seem might be little or like inconsequential and you're like, like, oh, wow. Yes. Look for me, like for the parents, look at what I'm able to do now, right? I have a plan. I'm more confident. Like to me I just, I, and I say the same. I get to do this every single day. I can't believe that I get. Yes.
• 26:01
  Speaker A: Yeah. And there's, and a phrase I use quite often is that there's a life luxury you cannot purchase. The feeling of the reflection where you see the growth in both your own motherhood and parenting to, to your child with extra needs and then the, the reception of that by your child, that is a luxury that cannot be purchased. And it's one of the things that I guarantee everyone in my community wishes they could push the button and go, I just want to feel that. Like I just want to feel and, and you cannot purchase it. And we live in such a fast paced world in these communities and towns that are just so based on, you know, current comfort and current, you know, luxury or travel and expensive things and all this stuff. And at the end of the day you cannot purchase the peace and beauty that comes with reflection over the small incremental choices that you make that will inevitably have the most beautiful ripple effect in your child. And I'm really glad that you said that, that, that taking the time to reflect is, is very important.
• 27:00
  Speaker B: It is, it is for not only to, you know, seeing your child's development because that's, you know, typically the goal, right. When I ask, when I talk to parents initially and we go through everything, it' what are your goals? And it's like, well, I want my child to. And they, some have more specific and others are, you know, to be able to have all the opportunities or to succeed or you know, a little bit more general which we then narrow down. But I, I also then go, well, what about for you? Right? Because nobody asks that. And it's not to to go, okay, well now it's also on me. And the pressure, that's not what I'm doing it for. But, but it's always been kind of in terms of therapies, like what the therapist does with your child and nobody is there to support the parents. And I like it always like I left actually a clinic environment with a hospital where I started and started my own practice almost like 20 years ago because I'm just like, I can't help the parents, which, that's where my heart is. Because, you know, insurance, it's like you have five minutes to say, okay, now go home and practice writing the letter a 25 times. I'm like, that' just insanity. So I just, you know, it's like I. That's where my heart is. That's what I want to do. And so no, you as a parent are with your child the most. And you, you know, I know, want to be able to support your child. And I also know for the majority of parents, their biggest fear is what happens when I'm gone. And so that is one of the biggest things that we, we talk through.
• 28:34
  Speaker A: I also think to your point is that your child is of you and comes from you. And there is something very sacred and connective that we might not be able to tangibly, you know, like have catch hold of, but your ability and the system of you is so attached to the system of your child and to know that those two systems as humans are so beautifully entwined. It's why we love so deeply. It's why we love so profusely. We can't capture that in a bucket, but we know it's there. So I think that your work just speaks so, so deeply to that. Dr. Johnson, I just, I thank you so much for being here. I could talk with you all day and for engaging in this conversation with, with such openness. Because there are the community of women and mothers and caregivers as I know that you work with day in and day out and that are listening. There's such validation in what you're saying and especially those who felt that are listening now, this quiet knowing that they. Something doesn't fully add up that, that I think that the hope. I hope that this episode with you gives language to that, but also permission to keep observing and to keep questioning and to keep trusting what you're seeing so that you can convey that to the practitioners and clinicians and therapists in your children's life. Because I really do. And I know you believe this too, believe that there are better outcomes for our children. They start and end with taking those observations seriously from the mother to their child.
• 29:58
  Speaker B: Yeah.
• 29:58
  Speaker A: So, Dr. Johnson, thank you so much for your time and for the work that you do in for this population.
• 30:02
  Speaker B: You're so welcome. I appreciate it so much.
• 30:05
  Speaker A: And being.
• 30:05
  Speaker B: And I love. I mean, this is a passion, if you hadn't figured that out. I'm very passionate about it. And just to be able to. To support parents, moms, you know, because that's, that's really the. The caregiving role. Right. Like you said earlier. And it's really important to be able to talk about it and so that the. Those who are in that role feel supported, because I don't feel that that's typical. That's not what's happening right now.
• 30:32
  Speaker A: Yes. And you. You use that passion to shift the lens and to shift that work. And what you're really asking us is to let us feel grounded in how we interpret things differently and then to walk through that with power and these small incremental wins along this journey.
• 30:48
  Speaker B: Yeah.
• 30:49
  Speaker A: Thank you again for, for your work. I will be sharing all of your details on how everyone can find you on the episode summary and. And cannot wait to hear from my audience because they are going to be thrilled with all that you shared.
• 31:01
  Speaker B: Great. Thank you.
• 31:03
  Speaker A: You're welcome. All right, everyone, until next time, here on the Inchstones podcast,