Thriving with The Bovinos!

Autistically Inclined with Julie Sando

• Brian

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What if the way we've been approaching autism communication has been all wrong? In this episode, Julie Sando, the visionary behind Autistically Inclined, shares the groundbreaking moment when a young man named Kagan shattered preconceived notions about non-speaking individuals with autism through the use of a letter board. Julie's story is a powerful testament to the transformative impact of understanding and re-evaluating our perceptions of autism and communication.

Julie emphasizes the need for flexibility and creativity in finding the most effective ways to support each individual's unique communication journey.  We explore the difference between meaningful versus unreliable communication and Julie shares a theory on the brain and motor movement disconnection.

Julie also shares about her ambitious efforts and overcoming obstacles to scale Autistically Inclined into a global initiative. Learn about her innovative strategies during the pandemic, her exciting fundraising campaigns, and her commitment to integrating communication methods into university curriculums. Julie's vision extends beyond childhood, aiming to empower non-speaking individuals as they transition into adulthood, ensuring they lead fulfilling lives. This episode is a compelling exploration of the power of community, adaptability, and profound understanding in revolutionizing autism communication.

To learn more and connect with Julie, find her at

https://www.autisticallyinclined.com/

https://www.communicationforeducation.com/

https://tevacommunity.org/

https://www.instagram.com/juliesando1/

https://www.instagram.com/autistically_inclined/

Kathryn:

Hi, I'm Catherine.

Brian:

And I am Brian and we are Thriving with the Bovinos.

Kathryn:

On today's episode, we talk with Julie Sando.

Brian:

Julie is the owner of Autistically Inclined and shares about her journey helping individuals with unreliable communication. Use spelling to express themselves.

Kathryn:

Julie also shares about the brain and the body disconnect with many individuals with autism.

Brian:

And her journey supporting the Communication for education initiative and teva community. So grab your letter boards and an open mindset, because we are learning something new today, folks. Yay, how are you guys good.

Julie:

how are you guys so good to see you? Oh my gosh, it's like settling a craving I've had in my heart for like years, years.

Kathryn:

Wow, yes, oh, my goodness.

Brian:

Huge fans of Miss Julie Sandow.

Kathryn:

We're so grateful. We've had years of collaboration with you and it's always been so amazing, and we're just so grateful that you're here joining us today.

Brian:

Always a shining light and a beautiful presence in the field that we're in and getting to see her from time to time in functions in California. Now that we're in Virginia don't get to see her as much, but we're making it happen with this podcast. Welcome, julie Sando.

Julie:

Welcome. Oh, my goodness, Thank you guys. So much. Mutual fan here of your guys's work in this community. It's been so awesome to be able to collaborate and to you know, learn from and with you guys and together, and to be able to to do what we do in such a such a open way. Right, I love it.

Brian:

Tell us what you're doing now text-based communication and how did you get started in that?

Julie:

Yeah, so I started in the autism field in 1998. And it wasn't until the year 2015 that this whole communication breakthrough thing happened and changed and rocked my world. So back in 2015, one of my families I work with families all over I started off in ABA and then I did some relationship-based approaches the Sunrise Program, and then I created my own program called Natural Play Therapy. So that's kind of my background. And then in 2015, I get a phone call from this family that I've known since 2001,. Right, their kid was this little guy at that time, at this time in 2015, he was 18. And they're in Colorado. I'm in California and they called me up and they said Julie, we are flying you up to Colorado to meet the real Kagan. We had a breakthrough with his communication and it's life changing.

Julie:

So, kagan, I'll just tell you a little bit about who I know Kagan to be. He, if you were to ask me at that point in time, loves the Wiggles, right? He's this 18 year old who will talk about the Wiggles all the time. He will ask questions about the Wiggles and want kind of a specific answer to complete that loop. You know, and you'd get all excited about that he would watch the Wiggles over and over on YouTube. How long did you?

Brian:

work with him previously.

Julie:

So his mom and I did a week long training together in Massachusetts in 2001. And then they brought him when I started working in Massachusetts. They brought him out for a week there and then, when I drove across the country to move back to California, I stopped through Colorado in 2009 and worked with him for several days there. So it was just kind of like big chunks of time every now and then and we'd do some consults here and there. I became close with the family. His mom really gave me confidence in my early years. I think that she kind of believed in me and yeah, so we had a friendship. I think as well.

Brian:

Okay, so then you go out there in 2015. Yes, what do you discover? 2015.

Julie:

Yes, what do you discover? So they have this letter board that they are using. So it's like a laminated sheet of paper with the alphabet on it A through Z. And one of my first conversations with him, they put the board in front of him and he starts pointing to one letter at a time and he spells I hate the wiggles, I'm stuck, I need help. I'm just trapped doing the same thing over and over and over. And he explained that he wants to go to college, he wants to learn psychology, he wants to learn you know. I mean, he is just like any other 18 year old inside this body that is stuck doing the same thing over and over and over since he was little.

Brian:

Yeah, wow. And they parents think he's happy. He enjoys the Wiggles. He wants to continue doing this, so let's make him happy. But really, inside he was finally able to share. Why do you guys keep making me watch the Wiggles? This sucks. I want to do other stuff. Get me out of here. Can you imagine?

Brian:

Right, how heartbreaking for the mom, but right, but also inspiring that whoa now we can work together to figure out how we move forward so he was sharing this with you upon seeing him yes, he had already shared this with his family before you know, and so they're like you know.

Julie:

so he was kind of filling me in and catching me up on you know what I thought was true since 1998, about what I believe autism to be Right. He was filling me in.

Kathryn:

Wow. And how many individuals are out there that are stuck in this, this world, that we believe to be true, but they need a way to get out and to share that. So how did they, how did they come upon that journey themselves, to get him to that point to spelling with the letter board? That's a good question.

Julie:

I'm not sure exactly how they got connected with it, but they found a practitioner and she's amazing and so they. They would travel to Utah to work with her and her name's Linnea Crandall. She's great yeah.

Kathryn:

Yeah, that's awesome. So you go there, he's speaking to you through the letterboard filling you in, and then what do you do?

Julie:

I'm like well yes, you can't unsee this right. You can't. I mean, I think a lot of people have a choice in that moment Are you going to like, cover your ears and pretend like that's not true, or that can't be true for anybody else? This is a one-off, because that would mean you were wrong and you've been teaching parents in an incorrect way for all these years. I mean, I was teaching people to join these repetitive behaviors as a way to connect with the kids.

Julie:

That's what the Sunrise Program is, and while there's beauty in that and there is a lot of goodness that comes from that, we're also then, at a certain point, fueling the things that they are stuck in, and at a certain age, it becomes frustrating perhaps for them, or some of them, right. Some of them are like, hey, this is how I relax. I relax with the kiddie videos. It doesn't mean I'm motivated by them, but this is how I chill. So, yeah, give me my baby Einstein and and that's cool. You know, that's totally cool. So everybody has a different experience of it, but I think the key theme that I see across everybody is this is not my motivation, right? I used to create games and interactions all around these motivations that are actually true.

Kathryn:

Yeah. So how did you feel then with that realization? Because I know a lot of people in the field, especially with the way the ABA field is shifting into being more compassionate, into shifting how they approach things, a lot of people are feeling a lot of guilt, a lot of like oh my goodness, I've been teaching these things. How did you deal with the feelings that were arising? And, yeah, what did you do next on that journey?

Julie:

Yes, well, I definitely. You know apologize to him and you know express to him how, how bad I felt. You know I'm so sorry and he's so sweet and that's what I find. Everybody's kind of scared when they start on this journey. Oh my gosh, what is my kid going to say? Are they going to hate me? Right? While he felt stuck and he was frustrated, he's so sweet and compassionate and understanding and forgiving and he really gave me confidence, which started me off. I feel like he started me off on this path of not wasting too much time in my own guilt, because that would just hold me back from helping others. And he had a very clear mission. He asked for me to be up there because he knew that maybe I could do something to help somebody else. So he kind of gave me this mission right Like go get them, get my friends, you know.

Kathryn:

I love that.

Brian:

All right. So the lady in Utah. Linnell Renee. What methodology? Because there's many different methodologies and approaches and certifications you can get in this field. What was her background or what was she practicing?

Julie:

Yeah, so before she learned the communication she was in education, she was a teacher, and then she studied something called rapid prompting method, so they call it RPM, studied something called rapid prompting method, so they call it RPM. There's lots of well, several different methodologies, right, there's RPM, there's S2C, which is spelling to communicate, there's Speller's method, so that's kind of you know, the main options that tend to be out there.

Brian:

Okay, and these are all paths available for different people to explore that all kind of relate to helping people increase communication. Yeah, it's kind of her background. Your family found this, they reached out to you and you're like, coming from kind of the behavioral, relational background, whoa, this is awesome. You see this work. It helped one child, right. And so how do you then be like, what exactly did the mom do to that child? What was their process? And then how do we duplicate that across different people? Right, that was your challenge and you got to take it home in California and do something.

Brian:

Yes, yes, yes, make this work, julie. Yes, right, yes, yes, make this work, julie. No pressure, no pressure. We've gotten a lot of background push from people. You know, without the research is always the number one. Where's the research? Where's the research? Right, and that's one avenue. Then the funding, right. These therapies cost money. How do you get funding? And you need the research to get the funding. Through insurance or your private pay, then you're only helping a very small amount of people. So, yeah, tell us what you did, how what's your?

Brian:

secret. What's your next step? Yes, you're headed back on the plane to california. You're like what's next?

Julie:

Oh, there's so many different avenues. I could go with this, so I'm going to start with the first part and then I'll come back to the second part. So first part is yes, everybody wants these scientific studies. Aba is the only thing that only like method that really has a study. That is extremely outdated, and is it even the best study is questionable, but it's stuck somehow Right. And now that's like the one and only way that doctors or scientists recommend Right. But there's so many things that are out there that don't have the research and I think what happened is right.

Julie:

When Lovaas did that study in ABA in the well, I don't know what was that the 70s, 80s, I don't know Long time ago, how many people were there with autism? It was like one in 10,000 kids. People had the diagnosis. It's a different landscape now. There's so much more available. There's so many more things. People are doing diets, people are doing you know a million different things to help their kids. So how can you take any method and say here's your study that shows this method was effective, because parents aren't doing just one thing anymore? Right, there are a thousand things they're doing in every moment to help their kids.

Julie:

That's a great point Is it really this one method?

Brian:

And you asked 10 people what ABA is. They're going to give you 10 different answers. Thank you, professors and authors of books share. There's actually about eight different methods and it's very independent on if you get a good BCBA or you get a good RBT right. It's very person it's the person.

Kathryn:

Yes, yes, the person.

Brian:

Which is not really the method?

Kathryn:

Yes, and that's with anything right, yeah it's the person and how they're showing up how compassionate they are, how they're connecting with the individual, the family, whatever they're doing, it's the person right whether it's rdi sunrise, any of these spelling methods right, exactly, exactly. Yeah, and I think that could extend to other areas too, other therapies that are, you know, even talk therapy, or even a doctor's office or it's the person that's showing up who is your role model?

Brian:

You? Have one teacher, you remembered, and what did they?

Julie:

do differently.

Brian:

They all had the same certification.

Kathryn:

know, they showed up differently, they listened, they cared yeah, that impacts, so true yeah, so true, yeah, so true good points, definitely on the research, because that's definitely been a huge challenge in our approach different approaches that we've used right and where's the research? And we've gotten that pushback from you know other BCBAs and we are BCBAs but yeah, it's such a challenge, so you've gotten that and so, yeah, responding to the first part, go ahead.

Julie:

Yeah, yeah, yeah. I really firmly believe that there's not one right way for every individual. That's. You know out of all the things it's like when I first learned ABA. You know out of all the things it's like when I first learned aba. You know, my first year in in this field in 1988. I'm like this is it, this is what I'm gonna do for the rest of my life, right. And then I find the sunrise program like, oh, this is it, this is what I'm gonna do for the rest of my life, right.

Julie:

Then I find communication or I create my own thing, natural place. Oh, this is it, I created my own thing. Finally, right, this is oh, this is it, I created my own thing. Finally, right, this is it. Nope, like communication. So now I'm just like all right, nothing is it? Yes, yes, I want to learn from everybody, everybody. So I come home from that session and this is cool because this is how you and I, you guys and I ended up connecting, right.

Julie:

So I picked a family, a family I was very close with, who I knew was open and I worked with them regularly Elliot's family and I asked them to yes, can I learn this? Can I learn this on your son with your son, right, can I experiment? And they were like sure, okay, yeah, they kind of thought it was a little crazy, probably at first, like, oh, you know, all everybody thinks, oh, that's their kid, he had that success. My kid's different, right, cause they're protecting themselves because they've had so many experience. But so they, they got fully on board and they're all in, you know. But in the beginning they took a chance on me and I appreciate that right.

Julie:

So I stalked Linnae basically she would come down here for several days and work with families and decided I did the whole thing and decided I didn't want to become certified. Because what I'm seeing with all of these methodologies is it's very much about the methodology in the methodologies, it's very much if A, then B, if the student does this, then we all are on the same page and we all respond in this same way. And I can't subscribe to that anymore. I can't be a technique. I am a human first and humans are dynamic, humans change, humans try different things, and I think it's a disservice to our kids when we make them think that everyone in the world is consistent when they're not yes, that is the old task.

Brian:

Analysis drives me crazy first turn on water, then get soap. Well, guess what people I turn? I get soap first and then I turn on the water. How are you gonna like that? So you were teaching rigidity to people for the diagnosis rigidity and repetitive patterns of behavior, and we're so rigid? But we want to teach flexibility by being rigid.

Kathryn:

Come on, thank you, Thank you, Thank you. Oh my gosh. And then you try to turn the water on and it's a sensor thing, and then it turns on and you get the soap and then it turns off.

Brian:

You've got to turn the water on again.

Kathryn:

There's different, different bathrooms. You're waving your hand at the paper towel thing. It won't come out and you dance around and then it's dynamic.

Brian:

Yes, yes yes because, right, you're gonna. How do you teach other people to do something if there's no direction, no guidance, no so? Are you teaching domains, or like areas of, like response, or I guess, what is your thoughts? If you can't A, then B, then how do you share this to more people?

Julie:

Yeah, I mean. What I do is I teach here's. Here's like, let's say, for example, three ways to respond to A. Let's see which way is best for your student. Here's why these three things might be beneficial, might not, but here's why. So if we're teaching the why, then people understand and then they can go and try those things. I might even recommend let's start with this one thing and let's learn from it. Right, and we might learn that there's a better way, rather than getting stuck in Cause.

Julie:

In my training, right, I was told you're not allowed to move to. We start with alphabet boards that have the alphabet split up on a on different stencils. That's the starting point. So A through I is on one board and so on. Right, three different boards. So there are bigger targets and there's less targets, so that we can build success. Then we put all the letters on one stencil, then we move to a laminate board. So there's a process, right, and I respect the process. I think that it makes sense.

Julie:

But I was trained the student is not able to move from one set of boards to the next until they have mastered, right, mastered this set, and when I was first learning, I was creating some bad habits. On that first set of boards thing, I was like I didn't know what I was doing, right, we were kind of messy and he got stuck in that messiness and I couldn't get him to where we were looking ready for that next set of boards, for training, right. But something in my gut was like just try it, just try it. So I turned off the camera the training camera, right, and guess what? He did so much better. He did so much better. It's like this fresh slate where, now that I have the knowledge that I do, I'm not going to create these bad habits, we're starting fresh and you're not stuck on this board anymore.

Brian:

It's like the piano you play one note and you've got to master that one note with all ten fingers and you can't move on to any other notes. That's not how you learn in anything. You don't perfect each step of the way to then move to the next step and you know you would never do anything. If you're like a kid, right, and you're learning to clean up your room, it's not to perfection, right. It's your best attempt and you shape it and you move on and you learn some other stuff.

Julie:

And as you get older, you get better and get more experience. So it sounds like you took that and ran with it.

Brian:

Yes, yes, running yeah, yeah so you're practicing with your trial client.

Julie:

How's it going so then I got him fluent eventually. It took it took a lot of learning and practice.

Brian:

Like a couple of years. What's that? How long? Like a couple of years.

Julie:

Yeah, about that Like a year and a half, and I would go to his house twice a week and be there for, I think, a couple hours each time. So we put a lot of hours in in that first year year and a half, something like that.

Kathryn:

Yeah, that first year, year and a half, something like that, yeah, yeah, and I have to say, witnessing that, the effects of that, it's mind-blowing. Mind-blowing of the shift in him and then what he was able to communicate, oh, it was just so powerful. But then also, when he communicated that you know he would come to our office and say, leave, leave, I want to go. You just continually asking to leave. But then later he was able to tell us he didn't want to leave. It was his body and you know, taking over. And just that part just astounds me all the time and it's it's upsetting that then you know we're taking those, those body movements or what they're requesting and asking for for you, and doing that over and over, like you were mentioning before. But then it's also empowering to later than be able to hear or learn what they actually are thinking and feeling like. It's so powerful.

Julie:

Yes, that was one of my favorite experiences was so, catherine, catherine, you got to work with them in RDI, right, and so when you came to the house and got to have that conversation, he loved it. You know, I loved it Like we all were just soaking it up.

Kathryn:

I didn't want it to end. I just want to hang out and talk to him and hear all of his thoughts and everything he was doing and planning and how he had been working on his goals, and just it was just so cool, so cool.

Brian:

You stopped your training, so then you just went by. What?

Julie:

I completed the training. I just didn't complete the exit interview. Right, I didn't want the certification because I didn't want to have to abide by one way, right? Yep, and also funding services Right, there are some unfortunate speaking of right, unfortunate studies out there that when people do research on these methods, they're all lumped together with another methodology that was even from before.

Julie:

That that isn't bad or wrong either. It's called facilitated communication. Many people use that successfully. But back way back in the and on a court stand, and I mean how dysregulating is that for you and I imagine having autism and being non-speaking and being on a court stand and having people try to prove or disprove your accuracy in your communication. Having it disproven like the stress, right.

Julie:

So, yeah, maybe they didn't perform in their best way, like who knows, who knows, but now there's this stigma that's attached to it. That is now. Fc isn't even the same as these other methodologies, right, and now it's attached to all of that. So people do that research and it's debunked. It's not true for everybody, right? So I also didn't want the certification for multiple reasons. Right, that I want to learn. I want to learn from everybody, I want to have the freedom to do that and also funding sources for our families are quick to say no to these methodologies. So I got my certificate in assistive technology through California State University, northridge. It was a one semester program, one class, and now I have a certification that people funding sources approve of.

Brian:

Wow, you are officially ready to go. Wow, you are officially ready to go.

Kathryn:

Talk about the flexibility and dynamic thinking in that process of like how do I make this work in a way that's going to help the families? They're going to get the funding. I'm going to follow the rules, you know. I mean that takes some serious dynamic thinking and problem solving.

Brian:

Yeah there's a lot to navigate. You need the credibility from parents to trust. So I'm just blown away by these parents that said, yeah, you can try something we've never seen and doesn't have much research with our kid why not, would be my thinking. But that's awesome and it's not going to happen in a week or two. We're talking years that they were like yeah, keep coming, you come to our house. You don't have the funding right. There's no insurance that is paying for this. Maybe you could eventually get into maybe the regional centers or something like that alternative funding sources and no certificate to say you've got a lot against you and you're like this is what I feel, this is what works, this is what I trust.

Brian:

I'm going to go for it, love it. This is what I trust.

Julie:

I'm gonna go for it. Love it, yeah, yeah. I gotta figure out how to thrive, yeah. And what keeps that going? What was?

Brian:

that yeah, like how did you what? Tell us what's that fire inside. People want to know what led you to not give in to these right right because it gets scary people threatening you and judging you and oh, pushback yeah. Imposter syndrome. Do you know about that?

Julie:

Yes, yeah, I mean, I have been, I feel like, ousted from lots of autism communities because I refuse to subscribe to one way for everybody, because I want to maintain autonomy and to have the ability to think for myself. And also the drive comes from listening to autistic voices. You know, that was my turning point where it's like, oh, now we can talk to non-speaking people in a reliable way and they can teach us. They're the biggest teachers of all. So I think having you know, know, having kegan, give me that mission, how do you say no to that? It just instills something in you of like, wow, yeah, yeah, thank you for trusting me with this.

Kathryn:

That's an honor I'll do my best right.

Brian:

For For him to trust you, he must have had some connection, some feeling, the trust to be able to. She's the one, and that doesn't come from any certifications or classes, right, that's something, you have it or you don't. It's kind of that energy, that feeling.

Julie:

Yeah, and I think he was kind of picking out all the people he could see who has it and he would invite them has it, and he would invite them to come and like it's your mission should you choose to accept.

Kathryn:

I bet he's so proud of you have you connected with him after all these years of yeah, yeah, I've been out to see him several times.

Julie:

He's come out this way. We totally stay in touch. He's amazing, yeah, he's, he's.

Brian:

We're each other's biggest cheerleaders, I would say is he leading or speaking at conferences or trainings, or helping other or doing any online stuff?

Julie:

he is doing some awesome things. So he and his family moved to Fort Collins, colorado, and they started a foundation called Keys for Autism and they've got this beautiful property. They're working on building a housing community for families to come and live there and to have access to all the things that they're offering there and to have access to all the things that they're offering. And they also have offerings for people who want to come in and have some advanced adventures. So they've got, you know, access to a pond, a lake, a boat, just all this nature stuff, right, and they'll have families come out, multiple families come out for several days at a time and take them on adventures. And he's a part of that and they'll do. His mom is trained and we'll do sessions to help them with their communication and he can chime in and help and support with that as well. So they're doing beautiful work.

Kathryn:

Yeah, yeah, I think you had heard about that that family and what they were doing with me a while back and I was just like, oh, that sounds so amazing. I want to go there and check it out. That's awesome, yes.

Brian:

You work with your first client, so you're getting experience. You kind of seen that it worked with this one client and now I guess you're seeing that it's working or helping in a way for your first client. You're trying it with what's next? How do you go from there?

Julie:

Yeah, so I wanted the opportunity to. Once I got him fluent, I was like okay, I can do this. I think I want to be able to have the opportunity to try this with. If you've met one person with autism right, you've met one person with autism, so I want to have the opportunity to try this with. If you've met one person with autism right, you've met one person with autism, so I want to have the opportunity to try this with others. So I reach out to some families where they found me somehow it's just kind of word of mouth too, you know and one family finds something that changes their lives.

Brian:

They tell other families what does fluent mean for people who don't understand? So he was non-speaking and now he's fluent in what you've worked with him. What does that mean?

Julie:

Yes, okay, so much to unpack in that. So there's non-speaking and unreliably speaking. So let's say Elliot, for example, and Kagan, for example. Elliot would always say time to go home, time to go home, and he would look miserable and then he would end up spelling I want to stay, I want to be here, help me. Kagan, right, his voice, his speaking voice, would say I hate the Wiggles, and then he spelled or I love the Wiggles, right, whatever. Like Wiggles, wiggles, wiggles, and then he would spell he hates them. So, and it's not always reliable.

Julie:

There's other people who are non-speaking. Now, we used to say non-verbal, right, and a lot of people still say non-verbal. But when you start to understand these kids, non-verbal translates to without words. These humans are not without words. They are better listeners than any of us can comprehend. Their sensory systems work differently than ours. They're listening to things three rooms away, sometimes right, like they're taking it all in and then some, so they're learning more than we can even imagine. They are not without words. They're not nonverbal. They may be non-speaking or unreliably speaking. And then, in terms of fluency, when you're communicating on a letter board, you don't just put a letter board down and then they start communicating. It's right, this whole process of getting there, there and once they're able to communicate their thoughts without any I mean, they're basically when you learn to point to one of 26 letters purposefully you have limitless possibilities of what you can say, and that would be considered fluency. They're fluent now in their ability to communicate.

Brian:

And that's open-ended questions. You could ask them what do you feel like doing today? They're typing out, spelling out and sharing. Is that moving to the iPad or at this point?

Julie:

It can.

Brian:

But not required. Right, it's an option, but if they're comfortable using the stencil or even the letter board, then every individual is an individual right.

Julie:

Right, some people have a much harder time with the smaller format with all those keys to visually have to look at, but a lot of people prefer it and love it. So, yeah, I think giving them access to all the tools and letting them then decide what to use where is ideal.

Brian:

Do you think the motivation because you talked to motivation earlier what did you use for the motivation and was the motivation for them to be able to share reliably the intrinsic value? Was that enough to keep it going for something that's really hard, that takes a long time?

Julie:

I love this question. I wish everybody would ask this question. So, because this is such a common thing we're so, so used to and I was trained, so used to you have to have a motivation, right. What are they most motivated by? And a lot of times it's food. A lot of times, it's right, it's iPad time. And so when I go to work with a new client, that's the mentality everybody is in, and there's a lot of work to undo within that. So what I tell people is of course, your kid wants to communicate. That's enough of a motivation. So I explain to the person I'm asking you to do these things, not because I'm wanting you to prove your intelligence. I know you're smart and your thoughts are trapped inside your head and we're going to help you get them out. So we're doing this work so that you can learn how to express everything that's inside your head, so that we can know how to best support you. And like, boom, that's enough. And then what happens? Their body resists. Just like Elliot, it's time to go home.

Julie:

It's time to go home, like these loops are ingrained in our kids. Saying no is ingrained in our kids. These trauma responses, these fight or flight responses are ingrained in our kids, but it doesn't mean that that's truth. So I've learned. Okay, let's work through this while still honoring their body and their body's needs, but also adding in honoring their mind and their mind's needs. And that's where the motivation is giving up, because their body is protesting and we're saying they need a break. They actually tend to get more anxiety because they're like no, I want to communicate. Are you kidding me? Like you know, I want to be able to participate in the world, and so when they know I'm not going to give up, then that's when their motivation, their anxiety, lessens. They become more regulated over time, and it takes time, it takes practice, but that's the motivation they want to communicate.

Brian:

Of course they do the intrinsic natural of, I think, every human being to want to grow, learn, be challenged and to be loved. I think those are in all of us, autistic or not.

Kathryn:

You all want to not just be stagnant and to connect with others and to have that social interaction. So once you're given that the opportunity, yeah, that's the motivation and I've seen that in individuals that I've worked with. Yeah, there is no need for any external motivation, reward anything. They're just motivated intrinsically, internally, to be there because it's this new opportunity that they know is going to get them somewhere. Even if it's taking years, they're still sitting down and doing the work and typing the letters and it's amazing. You just see it.

Julie:

You know, we're doing a little training course with a small group of people right now and we have somebody an ABA therapist in Michigan and I sat in on one of the training classes. I have somebody who's teaching it, but I sat in last night. So now one of the biggest changes she's seen is exactly that, where she's like I used to read Thomas the Tank or you know whatever they are into. Now she's reading them books that are age appropriate and she's like I am shocked that they are sitting there and they are responding in ways I never would have dreamed of. And they don't always do that. But you have to trust it first. You have to trust and do it and not wait for them to look like they're listening, because that's a neurotypical assumption, that listening looks a certain way. Why are we trying to get them to look like they're listening my way when their way might be? Flapping their hands and pacing is what helps them listen, right, yeah.

Kathryn:

Oh, I wish, I wish so many people could get past that, that listening idea, cause that's been written into goals and, you know, into programs and IEPs and just that they're going to show that they're listening by doing this, this and this and it's like, but yeah, I've interacted with so many individuals that are, like you said, pacing or going into the other room and then coming back. They're still engaged, though you see that then they come back and then they do whatever we're doing together and then they just need a little, you know, a little regulation moment.

Brian:

But the more you force, the more they resist.

Julie:

Yes, yes, the more that body resists.

Brian:

How do you know? Their brain and their body are not in sync, I'm assuming they've told you. But how do you know that If I was a parent, or if I was a doctor, or where's the research again, but how do you know?

Julie:

Oh, these are fantastic questions. I just like oh, I want to create a class. That's just your questions. So there's, you know, this needs to be studied more. That is clear. There are theories. This is a theory.

Julie:

There's the Broca's area of the brain and the Wernicke's area of the brain. Those are two different spots in the brain and those spots have to do with language. So everybody thinks, or assumes my kid is nonverbal. My kid doesn't understand, because when I ask him which color is red, he doesn't respond or he picks the wrong one. Right, all the information is going in. You teach him one time this is red. That information's in the brain, right, it's there. It's going into the Broca's and Wernicke's part of the brain and processing, just like it does for you and me.

Julie:

Now what happens next? It travels in the brain to the motor cortex. Motor cortex is motor, is movement. So that is. Every single way we have to communicate requires movement.

Julie:

The motor cortex, speaking is a thousand different processes that we don't even think about. Breath, right, like I mean tongue, everything, as thousands of things have to fit together to make a syllable, right, it's complicated. If I want to text you, that requires purposeful movement. If I want to do sign language. It requires purposeful movement. Every single form of communication requires physical movement. So it has to travel. Our thoughts that we're processing over here in the language part of our brain travel to the motor cortex and then the messages have to come from the motor cortex out to our you know nerves and bodies and to be able to move in whatever way we are choosing to express this.

Julie:

That's where the scramble is happening. It's a motor disorder, not a cognitive disorder. The language area working just fine, the motor part. This is why their speech isn't reliable, clear. They can't have conversations in the way that you and I can. This is why they might have a hard time tying their shoes. They might have a hard time getting dressed right. All of this requires movement. It requires a connection between the brain and the body, and this is where the disconnect is with our kids. They have thoughts, they try to get their body to show it and their body does something else. Think about Tourette's. I'm thinking what I want to say and a different word comes out it's impulse, it's impulse, it's impulse.

Kathryn:

Wow, that's amazing. I mean I, you know, I had such a simplistic understanding of that and the way you just broke it down was so helpful for me. I'm sure anybody listening to just to think about it in that way and and to think about communication, not just speech. But yeah, any kind of communication takes so much motor movement and coordination and that's just, you know it's, it's mind-blowing I was thinking of elon's neural link and if that could skip the motor and just stick in the yeah right process and then share.

Brian:

They could skip that and I bet I bet that's very curious.

Julie:

Yeah, we'll see very curious about that.

Kathryn:

So okay, so we know that this is what's happening. We know what this, this is the breakdown, or causing the scramble, causing the output she said so we don't know, okay, the theory.

Brian:

We know this is a theory of it's happening.

Kathryn:

So then, on the outside, what do we observe? What do we see in the individual to know that this is happening for them?

Julie:

oh yeah, okay. So we're looking for the difference between impulse and purpose, purpose and automatic. These are three different types of responses. So maybe a good analogy is when I learned how to drive in the beginning. It takes a lot of purposeful thinking, right. Like oh my gosh, getting from point a to point b feels so hard and you have to think of so many things when you're driving right, you're like 10 and two fingers gripped. That's like serious purpose, right did you know?

Brian:

it's four and eight. Now I just found found this out. It's ridiculous. Anyway, side note, I know Down here, so you don't do this whatever.

Kathryn:

What about noon? Late back 11 to 1.

Brian:

Love it. She's got the ice cube playing.

Julie:

It's a good, it All right. So driving, you're purposeful, right, you're learning you're purposeful Over time, when you get comfortable and you're like, all right, I got this driving thing, you. It becomes automatic, you don't have to think about it. Now I drive home and I'm like, how did I even get here? I don't even remember half the drive. That's because I've practiced it so much. So what happens is in the beginning of learning how to drive, I don't have neural pathways built. I'm learning to drive. It's like a lot of work. So I'm building those pathways in my brain like literally pathways. I practice on those pathways that have now been established and myelin sheath starts to coat those pathways. That's a white, fatty substance. So it literally grows around the neural pathway and strengthens that pathway in the brain as that pathway, as that myelination grows.

Julie:

That's when the movement becomes automatic, where we don't have to think about it. We don't have to think about it. Then there's impulse. So impulse is at the bottom of our brain stem, so all these other thought processes are happening like higher up in our brain. It has to travel farther from inside of our brain to get to our expression of it, our movement expression of it. Impulse lives at the base of our brain and is, just like always there to take over. Right, it's that emotional part of the brain. So, impulse, let me think about this. Impulses, I'm not thinking before I'm doing so. I'm at a red light. Doing so, I'm at a red light and I don't think this would actually happen with me. But let's say somebody pulls up. Maybe I should use my husband as an example, my husband's at a red light.

Brian:

What does he do? What is he doing at a red light? Is he on his phone?

Julie:

No, somebody pulls up next to him and it like looks, I'm like what a race, oh you know, like my car is better than yours. And then, like two tough guys are like the light turns green and they kind of floor it. Right, yeah, it's a little more impulsive. I don't know, I don't know if that's the best example, but we can all relate to impulsive actions that we're not using our best thinking brain for.

Kathryn:

Or somebody cuts you off while you're driving and you have a moment of road rage and you're yelling at them and then you cut them back off.

Brian:

You've done that.

Kathryn:

I don't know anybody around here that's done that Me neither. I don't have road rage.

Brian:

You're quick to point the finger, though, young lady okay.

Kathryn:

So we got this impulse. We're reacting like more of a reaction kind of reactive.

Julie:

There you go, there you go. So those are the different types of response. So our kids are always kind of living in that impulsive state and occasionally can get some purpose out. And when we're, the question was how do we know when something is basically impulsive or purposeful or automatic? So impulse tends to be fast. It tends to be repetitive. It tends to be repetitive, it tends to be so. Even spelling can become impulsive, right, I'm working with that student and I've gotten to know their impulses and I can, if I notice they're starting to get fast, they're starting to like do one of their repetitive words, whatever it may be, I can do a little reset on the board.

Julie:

I take that board and I lift it up and bring it back down and that's just enough to kind of slow them down. Or I know I've got to slow myself down to help slow them down, right. So the purposeful actions tend to be slower and tend to be novel, like new, right or or different. And then when they practice those things over time, that's new and you know it's like. Eventually, you know maybe in the beginning they're not taking their plate to the sink after dinner, but when you practice it enough, it becomes part of their routine. That's an automatic movement and that that's you know somewhere. But it's purposeful, but they don't have to think about it. Does that make sense? Yeah, active to passive right.

Brian:

Yeah, yeah, yeah, just interpreting that in the moment, you know, could be a challenge. But, as you said, once you get to know somebody and you can experience, and it is that pattern that you see of perhaps vocalizations of certain words or movements of certain right, that is, it's just consistent and it's almost like you said. It's not a thoughtful, meaningful response, it's just anything is basically that's coming out them. That's gonna be immediate slowing it down, making more purposeful connecting the neural pathways love it.

Kathryn:

Yeah, I love your brain explanations. I think I'll have you help me with my psychology class that I teach the myelination and all that. I was like, wow, that I need to you, you're good so you spread through word of mouth.

Brian:

I know I keep getting back to the story, but I really I think this has a purpose here. You're growing, you have some moderate success. Word of mouth. You start building, you starting to get a couple more clients. How are these clients paying? You are you? Are you starting to charge at this point?

Brian:

Not that that really matters, but you're getting the experience, you're getting knowledge. How do you grow into, I guess, where you are today with Autistically Inclined and how did that happen? And what does that process look like for people who do feel like they have kind of this special thing that they want to share with the world?

Julie:

Yeah, it's a fascinating process. So, you know, in the beginning I was like, you know, my hourly rate for what I do with play therapy and all of that was higher. And now I'm like, wow, I'm starting over, I'm coming in fresh. You know I'm needing to learn. And now I'm like, wow, I'm starting over, I'm coming in fresh, you know I'm needing to learn. So I had lowered my rates for my first set of clients, you know. But I was also traveling to their homes and it was. You know, it's just a different setup.

Julie:

And I think in those days that was many, many years ago. So self-determination in California didn't exist yet, so it was mostly just private pay. Then I got those guys that like first set my first crew fluent up and running and what happens is they get fluent in, you know, after one hour a week for a long time. Now everybody just wants to spend that one hour a week talking to their kid. Of course, right, we have a million questions.

Julie:

So when is their time to teach the parents? What happens when Julie gets sick? What happens when Julie wants to go on vacation? What happens when Julie needs to move to a different location? Whatever, right, guilt like heartstrings destroyed because this I'm their voice and their lifeline to a voice. But when do we do this? It sucked really like it was the most beautiful, amazing, wouldn't change it for the world experience. But I started to feel like, oh, how do we get these parents, these tools? Insert pandemic so in your business plan. If you're wondering, how do I do this, create a worldwide pandemic and you're going to be successful and fading yourself out.

Brian:

Parents will be required to participate.

Kathryn:

You don't have to travel. You see everybody on Zoom right, Right, right right, right.

Julie:

So it gave that opportunity to teach people and it gave me the time to be able to create programs. So I created a program called communication for education with my business partner, lisa mahalik quinn, who who's based in Maryland. Out there she has a business called Reach Every Voice. We partnered with the Autism and Communication Center to create communication for education. So it's Lisa and I and then we were sponsored by the Autism Communication Center at California Lutheran University out in Thousand Oaks, california, and we got a grant to create a program. That is amazing. We got to hire non-speaking people to be contributors. We got to ask such a wide variety of professionals to contribute to each topic, each module. So it's a dream project.

Julie:

So, yeah, I got to create something for people to be able to take to learn these skills, and now it's taken us back. You know pandemic and then, after the pandemic, I was able then to train other people to do this work. So I have a team now who does the one-on-one calls, mostly on Zoom, because that maintained that learning of. We don't want anybody to ever feel stuck or dependent on us. We want to teach people how to fish. So we mostly work with people online and teach them how to fish for communication, and it's really freed me up to be able to have a team now that does this. I don't do one-on-one work anymore. I have a small handful that I maintain on an irregular basis because I am traveling basically nonstop, it feels like, and doing different programs like camps and all sorts of things. Yeah, focusing on housing communities, focusing on so many different things in a bigger picture sort of way.

Kathryn:

Yeah so cool, but yeah, so you've really transitioned from this one-on-one work to then this global scale right, and so you're traveling all around, you're training people.

Brian:

That's amazing, such a great journey yeah, what can people that are interested? How do they go about? So there are some online courses. What does Autistically Incline currently offer and what other resources can you share with people who are interested in kind of learning more about this not-medicine process? Love?

Julie:

it. This work, yes, this work, love it, yes. So again, over the pandemic, it, just like that, gave me the time and space to create. So I also completely rebranded during the pandemic and created a whole new system where one of the things that I've seen in parents through the years is burnout right. So common. They go all in with the program that they're into or that they're exposed to and they go full force and then after a certain point of time they're burnt out. Time they're burnt out. The kid's kind of dependent on the program. They feel stuck. How, how?

Julie:

So I wanted to create something that was a solution to that problem and I recognize this took me a long time to learn right. It takes everybody a lot. It's a. It's not a quick, easy thing to teach somebody how to communicate right. So I created a three step process. One is called the first, to sprout, then grow, then flourish.

Julie:

So sprout is nine different mindsets, because that's it's what we kind of talked about in the beginning of all of this. When you start to see what's actually happening, your mindset shifts and it requires a shifted mindset for you to be able to see new and different things. So sprout is nine mindsets. It's like you know, I think there's 10 or 11 videos total that are 10 to 13 minutes long each, so you can be doing the dishes and watching these videos. I made it a super cheap price point because I just want people to have this knowledge, right. So that's.

Julie:

Step one is sprout minds nine mindsets. Step two is grow. That is, nine everyday actions that you can infuse into your life Very RDI inspired, and it talks about different ways to help your your to connect with your student. It's all about connect first, then communicate, build trust, build purpose and meaning into your everyday life. In this way. That doesn't feel overwhelming, because so many people don't take those next steps, because it's it's a how do you? We're overwhelmed already, right? So I wanted to do bite sized pieces. So that's nine video. You know, 10 or 11 videos total, giving you nine different steps that you can take that are easy.

Julie:

Then there's flourish. Flourish is like the big guns. We have course materials for how to start your communication journey. How to start your communication journey. We have it's a monthly membership, so when life gets crazy, you just hit pause and then you come back to it and your community is there for you. You've had Erin on your podcast and she is our accountability coach, so she helps parents pick goals each month in a one-on-one call and gives them action steps to be able to take. I think you guys trained her well, catherine, in your work with her.

Kathryn:

She's amazing. She's just amazing on her own.

Julie:

She is.

Julie:

You're right, you're right, good call, but I think we're all in the same mindset, right? Yeah, yes, she does an accountability call once a month to help keep you on track. We have communication partner coaching calls once a month where just the communication partners come and ask questions, have a discussion, and then you get to hear the feedback in a group call along with other people's feedbacks and seeing their videos. So that's amazing. And then we have weekly group lessons where Kate or our staff is leading a lesson and you get to practice being a communication partner. You don't have to think about the lesson and presenting it and all of that. You can just focus on being a communication partner. You don't have to think about the lesson and presenting it and all of that. You can just focus on being a communication partner.

Julie:

And your student gets to see other students at various parts of their journey. So they're seeing I'm not alone this other person. They have their video off because they're dysregulated or whatever it is. We also have students who are fluent, who are in the group lessons, so in the chat bar they're writing things that are inspiring. So it's a really cool Flourish, is a really cool community, and again, we aim to keep it really affordable. The idea is, if we can help more people and make it accessible, then it works out. You know it's a win-win.

Kathryn:

Yeah, I love all the steps, the process and then that connection with the other families and, like you said, the individuals that are learning to communicate, seeing all the variations and that and connecting with them, but also the connection for the parents right To have that community for everybody involved. The community part is so big, huge, I think, and just supporting the process and then supporting growth and flourishing and thriving and all those things. So you do so much to help other people. I mentioned thrive, to help them thrive, to grow, to flourish right, is there anything that you do and you're traveling all the time anything that you do to keep yourself? Do you have a routine? Do you have any rituals? Do you have anything that keeps you balanced and being able to do all these amazing things?

Julie:

Fantastic question too. So I'm learning. It's a work in progress because everything's kind of taken off in such a big way and I'm like, but one of my clients, she's a nurse and a mom of one of my students and she reached out to me and she said I would like to be your health coach because we need to keep you around, and yeah, so she has taken on the role of making sure that I'm taking care of myself. So that has been life changing. It just started recently. But having my own accountability coach right, I'm so good at giving other people accountability, but where's the accountability for myself?

Julie:

Shannon is the best. She's checking in on me and she's one of the biggest realization she gave me is my life is so dynamic. There's no. It's hard to get into a routine because there is no everyday looks different, right. So there is no routine in my life. So it's looking at how can I you know we're going to look at how can I bring some quick and easy things in to give myself more attention? And so she's helping me when I go have a big trip plan, schedule a massage when I come back. You know that's been huge. That's a game changer. So stuff like that I'm learning. Yeah, it's always a process.

Kathryn:

Yeah, we're good. I'm glad you're taking care of yourself because, yeah, we do need you around and you can't fill an empty cup or fill others' cups from an empty cup right.

Brian:

Yeah, I was thinking. How does a parent know if this program may be right for them and their child?

Julie:

goodness, yes, try it, just do it. Why not just do it? See what?

Kathryn:

happens yeah yeah yeah, I said isn't that everything in life? Right, just try it. Yes, just try it yes, yes.

Julie:

What do you have to lose? What do you have to gain? You have nothing to lose and everything to gain. So a lot of parents will look for every reason in the book that it might not be a fit. My kid doesn't understand, my kid is different, my kid won't sit still. My kid doesn't know how to read my kid Like. I've heard every reason why a parent shouldn't do it and those are just, I think, protective mechanisms, because they don't want to be set up for disappointment, they don't want to be. Uh, there and there there's just lots of fears, lots of fears tied to all of this. So communication is more important than anything else.

Brian:

Do it and the work. I think a lot of people, I'd imagine looking for a quick fix. I'm going to drop them off with somebody else.

Julie:

Well, you know, and that's hard, you know nobody's going to spend time with your child as a parent and love them and have the consistency that they will so yes, if they can have somebody who's there for respite that frees them up, and then for things like learning, whether it's RDI, aba, you know, whatever the therapeutic or communication, whatever the approach is. It's so important for parents to be involved in that so it's almost like let's separate out respite from learning.

Kathryn:

Yeah, I think this has just been amazing to be able to connect with you again, julie, and stay connected, you know, even after us moving across the country, and so this is so great. We want to make sure that people can find you, so where can they find you? Where are you located on the Instagram, facebook?

Brian:

all those things On the internet, dang.

Julie:

Right on the interwebs. Yes, yes, so on statisticallyinclinedcom and communicationforeducationcom. Both also have Facebook and Instagram pages.

Brian:

Awesome. And what's next for Julie Sando? Where are you headed? Not physically, but what's your dreams? What's your?

Julie:

five-year. So Teva Community is something near and dear to my heart. Tevacommunityorg is also another place to find me. They are building a community out in Arizona for spellers, for people who communicate through spelling in different ways, and it's housing, it's community, it's employment, meaningful employment, it's what happens next.

Julie:

That is something that is so deeply implanted in my soul because, starting in this in 1998, right with that four year old, my first kid, he is now a full out adult and it is very much in my heart, as it is with all these families what happens next, what happens when? And there's just something in me that has a drive to make sure that all of these people that I love so much are taken care of in their adult lives and that they have autonomy, that they have the ability to create the life that they want as an adult, and that is done through communication, so creating a community where they can communicate. We are starting a fundraising campaign coming up for that to make it happen. We've got a property and now we need to renovate and it's incredible, we've got non-speaking people on the board of directors. We've got an advisory board that is all non-speaking people and they are building this community how they want it to be.

Brian:

That's amazing. What's that website?

Julie:

Tevacommunityorg.

Brian:

Tevacommunity. Are you going to be?

Julie:

moving to Arizona.

Julie:

Are you moving to Arizona, truly Arizona, Prescott, Arizona. So I'm just helping make it happen, helping, you know, build training programs, infrastructure, that sort of. I'm just helping make it happen, helping build training programs, infrastructure, that sort of thing, bringing people to it. And so I'm five years, I'm continuing with Autistically Inclined, continuing with Communication for Education, getting this into universities so that students who are learning to become an SLP and OT are starting off with this knowledge. That's an avenue. I mean there's like a million things that I'm doing, but they all kind of fit together. Yeah, it's big Stay tuned, stay tuned.

Brian:

Oh, we're tuned, don't you worry, we're totally tuned. Well, julie, you've been awesome. We love talking to you. Thanks for joining us. You're the best thank you.

Kathryn:

We're just so grateful to have you on. It's always a pleasure to talk to you keep rocking thank you.

Julie:

I'm so grateful for the opportunity. I always love connecting and collaborating with you guys, so thank you so much.