Episode 3 - Brain-Body Disconnect
& Text Based Communication
w/ Julie Sando (Part 1)

Show Notes

 Erin: Hello, everybody! Welcome to Growing Through Autism. I'm Erin and I am so excited about today because if you have never met Julie Sando,  Today is the day. She's like,  amazing. This lady leads with heart, leads with intention, like such an asset to our community. I'm so grateful to know her on a professional level, on like a personal level.

She's amazing! Amazing!  If you don't know her, she is the director at Autistically Inclined.  She helped create and teaches Communication for Education. She's also on the board for Teva Community. So not only is she serving families and autistic individuals, she's helping support professionals in the field.

She's helping think about long term solutions so that our autistic.  family members, loved ones can live a more fulfilled life. So, I know I'm sure I'm going to cry. Because I love this lady. I love everything she does. She's amazing.  I love you, Julie Sando! 

Julie: I love you Erin!

Erin: So there might be people who are listening or watching that have never heard of you.  So maybe we can start by getting a little bit of your backstory. Because I think when we hear someone's backstory, it kind of helps us  see the things that have shaped them and why they take the perspective that they take. 

So maybe starting with  how you got in the field,  like, did you always know you want to be part of the autism community? Was there someone that impacted you or like an experience? Walk us through it.

  📍 

thank you so much. You're amazing.  Yeah, back in  19 something,  my sister, she's six years older than me, she wrote her senior paper on autism. And at that time, it wasn't something many people knew about.  So when I got to my senior year in 1996,  I decided to write my senior paper on autism.

So I knew a little bit about it. I asked the class when I presented my paper. How many of you have heard the word autism and no one raised their hand? 

Yeah, I don't think I had heard of it in 96 either. 

Right, right. It's, it's a whole different landscape back then. So that was kind of my first introduction. I was interested. And then when I went away, I transferred to a school  in 1998 and was looking at the job board.

There's a little poster of this sweet little four year old boy  and they were running an ABA program. Because  it said, I think this is important for parents to know so that when you're looking for support,  you never know how you can open up someone's world, right?  The poster said no experience necessary.

I was intimidated. I thought I can't do this. You know that I don't know what I'm doing. But because it said that it gave me the courage to apply. And. It changed my life.  So that was my first step. 

  📍 

So you were going in,  not as an ABA therapist because you didn't have the background, but kind of just step into learning about how to do that?

Yes, they had a company that they had hired and that company trained me. , So I didn't work for that company. I worked for the family, but they brought in people to train me. And I was kind of the main  person, 10 hours a week maybe. And they had a couple other people doing some hours too.

At that time it was very discreet trial. 

So, how did you go from, because ABA,  the model that was used then, I'm not sure exactly what's being used now, but  the model that was used then to what you do now, it's completely different. A total different mindset, total different approach. How did you go from here to where you are?

  I was doing what I was told, I loved the work, but I didn't feel like I had permission to be a human, or to love the kid, and that's what  felt most important. So, I started working with more families. One of them switched to a play based approach, and I fell in love.

 They sent people out to train us. And I realized, wow, I can, I can have permission to love the kid. I can play. We can just be humans. Right. And,  so I started converting all of my families to this play therapy. And after a couple of years, I went and moved across the country to train in it myself. I trained for seven years.

 What I began to realize, I guess, slowly over time was,  you know, in ABA, I felt like it back in that day, I know it can be different today. , but I felt like a robot, you know, like if A, then B. If the child does this, we all respond in this way. Very task oriented. 

It took me a while to realize that even in this play therapy approach,  I still felt like a robot. I was just a robot with a smile because we were still very much trained, if A, then B. If the child does this, everybody has to respond in this one, right way. 

Yeah. Oh, right.  And I think, like, I think about that because I have felt like, okay, if this, then this.  Just give me the steps. Just give me the steps because it's easier. Then I know what to do. But life is not like that. Life is, like, in all the things. In all 

Yes. 

So true.

I got the courage to leave what I just invested seven years of training into. 

Oh my God. 

  📍  📍 

And I started off on my own. I started to give myself permission to really be a human, right? To have that dynamic experience of  just being with this person. And  being myself, you know. Not having to prescribe to a technique in order to interact.

That's something that you mentioned in one of your first, in your first episode of this podcast. So if you guys haven't listened to that, go listen! Because there's so many gems that, I think that's why we're kindred spirits. We were both kind of having these experiences separately. So by the time we came together, we're like, ah, my people.

. So that took me through to,   creating a program called Natural Play Therapy.  And that was around, you know, 2009, It took a while. That was just really reminding people how to be human and  to kind of undo that rigid therapeutic experience.  I had so many clients that really did the program and they were burning out, their kids were burning out, but now their kids are kind of dependent on everybody responding in this way, right?

Yes.

  📍 And is that realistic?  They say, the whole goal is a generalization. They want to be able to go out and do it,  but not everybody knows that one approach.    I'm so much more aware of like, how do things feel in the situation. And when it's, we're doing this and we're doing this, there's,  even if you're connecting, there's still some level of disconnect, you know what I mean?

It doesn't feel as good as when you're just being. And  I think that  your program that you created in focusing on, let me just be with you.  I feel like that's something that's not just needed with,   our autistic loved ones, but with everybody just remembering how to be. It's huge, but then it's something that,

because we're so focused on skills and being able to complete this task that we can forget about that. But it's almost like that's that underlying foundational piece that affects everything else. It took me a long time to learn that. And even now, like I have to catch myself, 

Yes. Totally. Yes, it's so easy to fall back into that mentality. Like a  teacher mentality versus friend mentality or, you know, like human mentality.

 So then from the play based

into communication.  How did you get into the whole text based communication kind of world? 

  📍 

So in  2015, one of my families who I had known since 2001, they lived in Colorado. My home base is California. I spent the seven years of training out in Massachusetts. So I've been all over the place, but this family's in Colorado. They called me up in 2015, their son was 18 at this point.  And they said, We want to fly you up to meet the real Kagan.

Like, what? Uh, okay. What do you mean?  We've had a breakthrough with his communication. And, there's so much more to him than we could have ever imagined.  ,  He asked for me to come up there. . To get to really meet him.

How huge.

Right. Right.  So Kagan is somebody that I knew to be like, if you asked me,  what should I get Kagan for Christmas or for his birthday?

Right. Be like anything Wiggles, right? He watches the Wiggles videos on his iPad over and over and over on YouTube.,  He has speech. He'll talk about the Wiggles and ask you questions and want certain responses, you know. So anything wiggles, you can't go wrong, right? That's my impression of Kagan. He was 18. 

I fly up there,  he's got a letter board, and  we, actually we drove to Utah, because his practitioner was in Utah. So I'm watching him with this practitioner, who's amazing. And  he is  yelling at the top of his lungs.  Yelling, like, I can't hear anything that the instructor is saying.   And his instructor is like, reading something,  and then will ask some questions.

So I'm like, what is happening? I have no idea. Then she holds this alphabet board, right? It's this little, like, sheet of paper with the alphabet on it that's laminated. And she holds it in front of him, and he starts spelling. And he's spelling out sentences that I've never heard come out of his mouth before.

So, at first, it's in regard to what the lesson topic is about.  So first of all, my mind is blown because  I realize that,  wow, their sensory systems are so different from ours. I can't absorb what she's saying. He's the one yelling. How is he absorbing this?

And it's because you can hear everything all at the same time.

Like, it's all going in, right? Right.

   📍  📍 Yeah. And it's probably, I mean, it's hard for us to understand because we don't operate like that, but not everybody operates the same. 

  And then when we start to be able to have a conversation, they like warm up through this lesson. And then  he's able to, to talk to me.  He starts spelling out that he hates the Wiggles.  He hates the Wiggles? I'm like, what?  What do you, what do you mean? He's meanwhile, his voice is talking about the Wiggles, the speaking voice.

So he's like, I'm stuck. I need help. I'm just, I'm stuck. Trapped doing the same thing over and over and I need help. 

  📍 

 How many of  us as families, Woo!  Dang it! And parents, you see one thing. Woo!  Sheesh! You know it's gonna come. And you, you trust it because that's what you see. Like, Oh, he's wanting this. That's what he keeps doing,   but then inside could be totally different.  That was a lot to experience in one moment.

For you to process it.  I know for myself,  because I've learned through you, my guide, about how this all happens.  And like that, that feeling of like, Oh my God, what have I been doing this whole time? And I think when people hear about  that brain body disconnect.   I think it, for most people, as far as in my experience, it resonates.

But I think the thing that holds people back who don't take steps forward and kind of  embrace that truth, I think it's almost like  they don't want to go through that grief of like  what's done is done. You know what I mean? I can't go back but I can learn and I can share with my loved one. Like I didn't know and I was trying my best. And I know that they know and it's just   that accepting that I only know what I know.

  📍 

Yes, I feel like you have two different paths that you can choose to go down in that moment, right? The path of,  of ignoring it because it's too painful and to kind of put a block up to it. Or the path of, I was wrong, you know, and I'm sorry. And that's hard.  And even though that might be the harder path in the moment,

it's the more freeing, more liberating, more expansive, life changing way to go.

Right, right, like we say that we want more for our kids. For them to experience more, to do more, to be more accepted.  So it's almost like, think about that when you're deciding am I gonna stay here because it's what I know or am I gonna be open and embrace the unknown and the learning curve, but really give something more to that person that I love.

  Once I decided  I have to learn more. I have to   learn ways and understand how I can start being different with Noa, approaching things different, perceiving things different,  like embracing that brain body disconnect, fully understanding it.

There might be people who are like, okay, I don't know what you're talking about.

Can you, because you do such a beautiful job explaining. Julie even has something on her website. Where it's a whole lecture that her and a non-speaker who communicates through typing,  share. They did a presentation about the brain body disconnect. So if you could explain that a little bit, that would be awesome.

  📍 Yes, yes! So why is it that what we see does not always match what is going on inside?   If we go back to ABA, ABA sees autism as a behavioral disorder.  Play based approaches are like,  I think this 

is more of a social disorder.

There's so many different ways that you could look at it, but that's a very simplified approach.

 When you look at this brain body disconnect, it's really taking a look at the motor system. The motor system is our movement system. So anytime that we have a thought like,  I'm thirsty. I have to pick up this glass.  And there's a thousand different things that are happening to be able to take a drink .

I'm having to grip my hand in a certain way. I'm having to put my hand down to that drink, grip it, hold it with strength, pull it up to my mouth, and then think about all these internal things we don't even think about that are happening as we are taking a sip. It's complicated  for anybody with a movement disorder.  Yet,

it's things that you and I never think about, 

so the brain body disconnect is looking at, there's something misfiring in the brain where they have a thought, I want to pick up that glass. And their body does not always obey their mind. This is called apraxia or dyspraxia,   there's different forms of it.

  📍  This is the disconnect between the brain and the body. 

So kind of like that example with Kagan. He's talking about the Wiggles It sounds like he wants Wiggles, but then he's telling you  no, this is not what I want internally.

Yes, yes, his body was getting stuck in different movement patterns.  Going to find that same Wiggles video since he was five years old. Got stuck, got overly myelinated  in the brain. So every thing we do creates pathways in our brain. And when you do something a lot, that pathway gets myelinated. It gets a coating over it that gets thicker and thicker.

And as that myelination grows, that practice happens,  the actions become more automatic. So we're not even thinking about it. It just happens. So when we're first learning to drive, right, we're like, Oh, this is so stressful. There's so many things to think about. And you're so hyper  aware. And then Once you've driven for a decade,  we can't even remember how we got from point A to point B because it's so automatic.

  That makes total sense. So are there things that people can do to help bridge that gap between the brain and the body disconnecting and  helping them align and work together more efficiently.

 So I think the first step is awareness, right? Awareness is huge. Yes.

Biggest, hardest step, but once you got that, then you're good. You're right! That's a good start.

Yes. And I think verbalizing that awareness is huge because our kids don't know what's happening and why. They don't understand what apraxia is. No one's talked to them about it. So to be able to say to them,  look, I've been meeting a lot of autistic people or seeing them online.  And I've been hearing more and more about how there's this disconnect between the brain and the body.

So, you might have a thought, but your body doesn't always listen to your brain.  So verbalizing it is huge. It helps them know  you're going to do something about it. 

   📍 I've learned  sharing and talking with Noa is huge. It makes a tremendous difference. Because how validating. This whole time, I'm sure inside he's not able to tell me,  this is not what I want. That's not what I mean. I know it looks like that. And I don't know how to do something different  to just be validated.

Like, I understand that's happening.  I still might not know exactly what you want, but you know what, now I know not to always trust your body. Now I know  I'm going to look for a way. I'm going to find a way. I will find a way so that you can communicate it more clearly to me because it matters because what you want and what you think. Like it matters, right? 

Yeah, because I feel like as I started sharing , I share all the time, all the things,  you see the shift. You feel the shift, in like, Okay. Okay. You get it.  Like I even think about, like when we first started spelling.  Julie had a nine month course where she would support families and people to be communication partners  basically, guide you through the process of learning how to communicate text based. 

And so Noa is a mover.  His body is always pacing. It's always moving. And it's always been  a challenge at school. It's been a challenge when we did ABA because people want him to sit in a chair and just like  do whatever task. 

 I remember in the early stages, Julie sharing about if that is a challenge, you can set up a table where the chairs are against the wall and it's in  the corner of a room. So it's kind of blocked off and there's one way in and one way out.  So that way it limits the space.  Limits his amount of movement.

 And I remember thinking   that he doesn't like to be confined or feel trapped.  And having that guilt of doing that kind of   programming for so long, I wanted to really honor  what he wanted.

He doesn't want to be trapped or confined. And I remember thinking, I don't think that I can do this. And Julie,  she validated all my feelings.  She's like, no, I understand, but  let's look at it a different way. His body,  it has this need to move. If he sees a space, it wants to occupy that space. 

But I know because he's showing up in the area, that he wants to communicate. How do you not want to communicate?  So maybe you can share with him. It's not about trapping you. It's about supporting your body to stay in the space so that you can get that practice in. Because if you're always moving around, how are we going to do it?

And I was just like,  wow, that makes sense. And it's just a shift in perspective.  And I remember thinking like you saying that,  it makes sense to me, but I don't know how Noa's gonna take it. I mean, we'll see. We'll see. Like, I remember feeling like that.  And I shared with him,  and  he kept his body in the space.

He wasn't pushing past me. And then eventually we would  be in that space. He might not be sitting for  30 minutes or an hour, but he'd stay in that space almost the entire time. And I was just like, wow.  Just being able to share  my intent and my perspective can help him shift his perspective.  And it changed the way that things felt in the moment.

Yeah. It was huge. It was huge.

  📍 Yes, and you weren't forcing him to be at that table. Like there was a little bit of space between the wall and the table. So if he needs to stand, he can stand. If he needs to walk, he can walk, but it's contained. And you're still able to feed his brain and feed his soul. And you're giving him age appropriate content. 

Things that are going to be interesting.

 So it doesn't feel the same as like we're staying at this table. 

Yeah. Not 

at all. Not at all.  I think something else that's been huge for us in like the brain body disconnect is learning about purposeful movement.  Um, if you want to kind of,

Yeah, I love

that, yes.

  📍 This was step two. 

is exactly, 

So step one is 

having the awareness and verbalizing it. Step two is giving them something they can do purposefully. So  even little examples throughout the day.  We're so used to just needing to get through the day and get things done. To get from point A to point B, which takes a lot longer in our community than it does for most people.

Right. And it already takes parents of neurotypical kids a while to get out of the house to get

somewhere. 

right. 

So  just looking for opportunities throughout the day where you can practice purposeful movement. Hey,  here, hold this for me for a second . Or  I'm passing the remote to somebody across the room. Here,

take this remote, hand it to dad.  Whatever it is.  

  📍  I love that there's variety within that purposeful movement because I think that's what kind of differentiates what we talk about when we're talking about purposeful movement versus that discreet trial based. Things have to be like very rote, very rigid. And  with this it's like,  I think about purposeful movement is    just doing something  with intention, but it doesn't have to look a very specific kind of way. It doesn't have to be done the same way.  And it's almost better if it's not exactly the same way.

So you're not building up  those loops or like that repetitive behavior, right.

  📍 Exactly! Because then it becomes automatic. And once it's automatic it's different from purposeful. Automatic is I don't have to think about this anymore.   Purposeful is a very different part of our brains that they're not used to having the ability to operate in as much. So we're building new pathways in new parts of their brain.  With communication, purposeful communication,  we're wanting that to be a purposeful movement. We're wanting all of that to be.  intentional, which means they're having to think about it. It's not automatic.

It's novel every time. With communication, when we're practicing, we're practicing with a variety of words. We're making it different every time, but the alphabet stays in the same spot. So they're practicing this set of movements to find their letter, but it's a different order every time. And that's what keeps it purposeful.

So when you're translating that to a first step of helping your loved one, be able to become more purposeful with their movements, it's the same idea. We're not going to drill people to do a hundred pushups, but Hey, let's practice this yoga pose today. And that yoga pose tomorrow.  Or whatever physical way you can have them participate throughout the day are all beautiful examples of variety and naturalness that helps them practice having a thought and getting their body to listen to their brain. 

  📍  If you do start practicing it, I think it would be awesome to acknowledge  that's something you wanted to do and you had control of your body and you did it. Because I think a lot of times, especially for people like Noa, whose bodies seem like they're in the driver's seat most of the time, , more impulsive, more just automatic.

When he does get control to just even do something simple, like  he's helping me put the dishes away and put the dish up on the shelf.  You see like, yes,  I did it.   I want to do these things, but it's hard for me to control my body. And so validating and acknowledging that for them is a huge piece in building  that competence level. Those feelings of motivation, I think for both of you.

 Any more steps in the process? 

I think those are two really great places to start, you know, and then get more training. 

   📍  So how do people do that? Like I'm somebody who,   learned about this brain body disconnect.  So kind of like my story, right? I saw the video of Jordan's Rocky Journey.  It was so impactful.

It was definitely one of those  A ha moments for me. I watched this video with Noa. The young man, he wanted to go up the rock wall, but it did not look like he did. He was crying and  I was feeling for him because he looked miserable. But his mom got his letter board out. He shared, he wanted to get up there.

And he was supported through it. And Noa was just looking at me.   I could feel him like, Mom,  yes, he sees me like this, this is it. And I'm like, I'm doing this. So having Noa really, you know, show that that's something you want to do. It really got me motivated.  I've got to take the next steps and get some training. And that's when I found Julie. Somebody was sharing what she did. So I asked if I can do a zoom with her and she was so gracious and she shared all the things.

 Can you share a little bit about what you're offering now. Where people can come and learn more and maybe get some more training?