Interview between Speaker 1 (Meg) and Speaker 2 (Sarah Selvaggi Hernandez)
[Introductory note]
Hey, podcast listeners! Just jumping in to tell you about a free live event that you will not want to miss. January 11th through 15th, 2021, Learn Play Thrive is hosting the second annual Neurodiversity in the New Year Summit. It’s always a huge party, and the theme this year is Self-Actualization and Self-Advocacy. When you register for the summit, you’ll get to hear five days full of live talks from autistic OT’s, psychologists, self-advocates, and even an autistic comedian. This is a New Year celebration you will definitely want to be a part of. Get the details and RSVP ‘Yes!’ at learnplaythrive.com/summit.
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Welcome to the Two Sides of the Spectrum Podcast. A place where we explore research, amplify autistic voices, and change the way we think about autism in life, and in occupational therapy practice. I’m Meg Proctor from learnplaythrive.com.
Meg: Before we get started, a quick note on language. On this podcast, you’ll hear me and many of my guests use identity-affirming language. That means we say, ‘autistic person,’ rather than, ‘person with autism’. What we’re hearing from the majority of autistic adults is that autism is a part of their identity that they don’t need to be separated from. Autism is not a disease, it’s a different way of thinking and learning. Join me in embracing the word ‘autistic’ to help reduce the stigma.
Welcome to Episode 15 with Sarah Selvaggi Hernandez from The Autistic OT. I’m so thrilled to have Sarah back on the show. If you caught Episode One, Sarah was the guest then as well when we talked about listening to autistic voices and respecting the autonomy of our clients. Sarah is autistic, she’s an occupational therapist, and she’s back on the show today to talk about how we can help cultivate a positive sense of autistic self-identity for our clients. There’s even a really special moment where she speaks directly to parents. This is a clip you might want to have in your back pocket to share with your families when they’re having a hard time so they can be inspired by Sarah, just like we are. Okay, this is the last episode of the year! We’re wrapping it up with Sarah just like we started it with Sarah, and we will be back with new episodes for you in January. So, here’s the interview.
Hi Sarah, welcome back.
Sarah: Thank you, Meg! Hello to you too.
Meg: So, I’m really excited to have you on the podcast today to talk about what we can do to cultivate positive autistic self-identity in our clients. And I have to admit, Sarah, this was a concept I’d absolutely never thought of before. But as soon as I first heard you say the phrase, I immediately knew that this was really important. So, let’s dive in. What does positive autistic self-identity mean, and why does it matter?
Sarah: So, positive autistic identity really means just authenticity. And I know that seems like a very overly vague answer, but it’s meant to be. Because what I’ve actually found when doing the research on identity development, and looking into how do you develop a positive sense of self, the thing that I kept seeing over, and over, and over again, were this idea of ‘We become our reflections from other people’.
Meg: Okay, so Sarah’s answer here was way deeper than I expected. And it took some time for me to digest. Basically, what she said was that everyone develops their self-image, at least in part, based on how others think of them. I looked into this a little bit, and the research says Sarah’s right. Not only do others’ perceptions of us have a huge influence on our development of self-identity — or as the research calls it ‘self-concept’ — but our self-concept also plays a huge role in our development.
It relates to our ability to learn, our sense of competence, our motivation, how we regulate our feelings and behaviors, the level of harmony or disruption in our relationships, our confidence, and so much more. Disability definitely relates to poor self-concept, with autism being one of the most impactful characteristics. Race and gender probably impact this as well, but it’s a little complex to discern how exactly since research shows a lot of mixed results here.
So, Sarah says we don’t actually know what a fully autistic person looks like. We’ve never seen an autistic person develop outside of the pressures of neurotypicality, and outside of the negative concept that others have of them. Her answer to my question, “What is positive autistic self-identity?” was, “You don’t know yet. But we need to do a lot of reflection on how we see autistic people as the first step of figuring this out.” So, even though this is all still really uncertain, I know Sarah has a lot of good strategies for what we can do to promote positive autistic self-identity, and do a little bit of harm reduction in how much we might be causing trauma in the lives of our clients. I asked Sarah, “What can we do to promote positive autistic self-identity for our clients?”
Sarah: Sure. So, with the acknowledgement, you know, these past couple of minutes that we don’t know, the next step is — okay, so we could approach this problem of not knowing two ways. We can be intellectually defensive and say, “Oh, no, we do know,” and move forward with the literature that we have, or we can be intellectually curious and say, “All right, if everything I know could potentially be flawed, I have, like you said, a duty or responsibility to always be seeking truth.” And sometimes seeking truth means coming to a person and saying, “I’m wrong,” or, “You know what? I haven’t been listening to you. Let’s go over this again.”
And so, what can therapists do, or what can parents do to help develop this? One, admit we know nothing. Two, admit that maybe it’s some of the ways that we were interacting before were damaging. And then the next step is then, how do we promote actual positive autistic identity? This answer is fluctuating for me, and I know we’ve talked about it before, but I love occupational science. Everything that I do pretty much now is rooted in occupational science and also the participatory justice framework. Because what I have realized is, this is a human rights issue.
And so, how do we create a space for people to develop that identity using the principles of ‘doing, being, belonging, becoming’, which is our central tenets of occupational science? The first thing that came to my head with ‘doing’ — the act of doing is stimming! It does not matter what age you are, it does not matter where you are, you should have a right to move your body in a way that is safe, in a way that is yours. Period. And we can talk, you know, about a lot of things with stimming. But I just have to start at that fundamental principle of, “It is my body, and I can move it.”
So, the first thing when we go into therapies, please stop restricting stimming unless it’s a danger to self or others. Please stop putting timing on stimming. Because sometimes it takes me 20 seconds, sometimes it takes me an hour. Your five minute token means nothing to me. That means that you’re still trying to control me, and the point of doing, and being, and becoming, and belonging as an autistic person is, at minimum, being able to just simply exist and do the things that our body wants to do. Stimming — um, you know, most people who work with autistic people know what it is, and see what it is, but I don’t think that they really understand what it does for us.
And I have to imagine them. And so, if I can make an analogy, it’s like I’m in a classroom, and, you know, I love teaching. I’m an educator. So, I’m up in front of the class, I feel the lights coming down on me, I feel disoriented because teachers typically have to stand in class and because of my sensory differences, I don’t feel stable. I’m walking around. Those things — the walking around — sometimes I flap. I often use my hands when I teach. That’s stimming. That is what stimming looks like as an adult.
So, you take a child who is flapping their hands while they’re listening to a story, and you teach them to repress that, what are you potentially doing? You’re stopping a child from developing strategies that will help them to be successful as an adult. When we think about stimming, you have to understand that it is literally an extension of my thoughts. I can’t finish my thought without moving my hands. I can’t. And what I have to say is important. So, I want you, the therapist ‘you’, the parent ‘you’, maybe ‘you’ work at a church and you have autistic people in your service. Look and say, “Wow, this is an extension of their being.”
Stimming is part of themselves, and in order for them to fully engage in their environment, this is something that they have to do. The question then becomes, “Do I value their presence, or do I value my control? Do I value what they have to say — because stimming can be its functional communication about how we’re taking in information — or do I value them telling them to be quiet?” Because I can’t. So, if I can’t think when I move my hands, when you tell me to have quiet hands, you’re telling me that the way that I think and the way that I’m being, it doesn’t matter. So, stimming. Stimming is probably the first thing that I can think of. Again, stimming becomes something that we can do as children, adolescents, adults to help us engage.
Meg: I really appreciate that. I have a lot of people ask me what should we do about stimming. And so, I think this message hasn’t reached nearly enough people yet. I had one podcast guests say, “We should say, ‘So what?’ before we do any intervention,” and I loved that. “So what?”, right? What’s the problem here? There’s no problem here. And there might be a problem coming from the other people around them, because we know that non-autistic people aren’t good at taking the perspective of autistic people. So, maybe we can do some work. Maybe the peers in the kindergarten class can do some work, and up their perspective-taking skills if they’re the ones that are having trouble with a child expressing themselves using their body.
Sarah: I love that, and I love taking “So what?” and being like, “What about if we just said we flip the script and we say, ‘That’s so cool.’ Yeah, you’re really enjoying this!” And the thing is, people know when the stim is self-injurious and a stim is a stim. I don’t even really want to call a self-injurious stim a stim, because to me that’s a trauma. That’s like severe ‘I am in danger and I need your help’ if that’s what’s happening. So, first, I don’t like how any kind of stim that involves our bodies all of a sudden becomes self-injurious or harmful.
And I’ll give you a very specific example. I had, you know — well, many people know that I am a therapeutic foster parent and I’ve had many usually non-verbal autistic kids in my home. Unfortunately, because of the system that I work in, I have had ABA in my home and I don’t agree with ABA. I think it’s abusive, and that’s a really uncomfortable reality though, when you work in some of these systems and something is court ordered. I have no — you know, I have to, or I lose my foster children.
And so, I remember the conversations. I had a little buddy who would have his palm cupped open like so, like as if you were holding your hands under a faucet and you were catching the water in your palms. So, he would have his palms open like that, and he would hit his head. Hard enough to make a noise, but it was super playful. And the thing that I realized, I could tell so much from when my buddy would — he would hit the side of his cheek, and if his palm was cupped, it would create this sound. It was joyful and I could, I don’t know, it was just such a beautiful way to communicate with him.
Now, the other way that he would sometimes hit himself is that he would put his hand flat, and it would make a sharper sound. He would hit himself in the same area, but it would make a different sound, and that was communication to me that there was something wrong. He had to go to the bathroom, he was getting hungry, there was something. If he had his iPad, something wasn’t going right. That was a cue. Well, I had an ABA therapist, BCBA, come in and do the intervention, and she saw these ‘behaviors’, as she termed them. That was the first thing that she wanted to, term, ‘extinguish’. And I was like, “Why?” She goes, “They’re self-injurious.” I’m like, “No, they’re not. He’s not injuring himself.” She’s like, “But he’s hitting himself,” and I’m like, “He’s making noise.”
And so, we had this big dialogue, and I thought that — honestly, I thought that we had gotten to the point where, you know, she at least heard me, because it was really important to me that if you’re going to be in my home, we’re not working on the things that I don’t want you to work on. The thing that actually broke my heart was that we had that conversation, and then obviously they wrote their report, and they wrote what they needed to write to receive, I believe it was 25 hours, of services in our home. And she put on there that he was self-injurious. That made me angry because I am a mental health OT. And I know what happened to little nine year old boys who have written on their reports that they’re self-injurious when they’re not. So, this way of controlling stimming is not only harmful to ourselves immediately, but it’s being intentionally misinterpreted for what? More and more billable hours?
Meg: More control?
Sarah: More control.
Meg: Yeah, that’s so misguided, too, because if he was using that for communication, it seems like you would meet his needs, not take away his way of communicating. He’s saying, “Something’s wrong,” and you figure out what’s wrong and you help him. And certainly, there could be opportunities to offer him additional ways to communicate as well. But just taking something away doesn’t help anyone. And I want to say explicitly for people who are scratching their heads when you said that, “You know what happens to kids with ‘self-injurious behaviors’ — especially young boys — written in their reports.” What that called up for me was seeing the padded rooms in public schools that technically weren’t isolation because part of one wall wasn’t closed, but that usually seemed to escalate the stress and the trauma of a meltdown. Is that the kind of thing you’re referring to?
Sarah: Yes, absolutely. Yeah. So that is one that level of escalation. And I should refer to that because that happens in schools. Those are groups like International Alliance Against Seclusion and Restraint, and they’re actually working with the United Nations to try to get seclusion and restraint banned in schools. And especially prone restraint and seclusion, because they’re so damaging. So, I was referring to that, but specifically what I was referring to is, I worked in-patient mental health. You have these boys — boys and girls — people who have ways of being, ways of doing, ways of just existing in their bodies, that from, you know, not just told that they’re broken and wrong, but then they have them restricted. How frustrating is that?
I mean, we already know that autistic people struggle with communication. And my goodness, we’re trying so hard. And even the ways that we communicate are being restricted. You’re restricting them. I’s not me, you are. So, our thoughts are cut off, and there’s this frustration, and everything just escalates. Everything gets to the worst possible place. So, why don’t we just hurry it up? You’re gonna put your hands on me, you’re going to do these things, so why don’t I — okay, fine. Why don’t I just aggress. You know, and you think that like eight year old, nine year old, ten year old, four year old kids know this…
Meg: Yeah, there’s no other way out of this.
Sarah: There’s no other way out of this. I’ve seen somebody restrained because they didn’t like bad sensory stuff, and the cafeteria food was disgusting. And we had an apple tree outside. All he wanted to do was eat an apple. He got restrained for trying to get an apple.
Meg: Wow. I love this focus on the ‘doing, being, belonging, becoming’ because so much of what you’re talking about this happening is taking away. Let’s take away that behavior, let’s take away that stimming, let’s take away that sensory response. And that it is not aligned with who we are at our core. We’re people who promote doing, being, belonging, and becoming; and I love to hear you say that we need to think about autistic ways of doing and being, and how we can, first of all, stop taking those away, and help others around them stop taking them away. And then level it up a little bit to say, “How wonderful.”
Sarah: Yeah.
Meg: Okay. Talk to me about ‘belonging’ — what’s our role in looking at a sense of belonging for our autistic clients?
Sarah: So, when I went — when I was thinking about belonging, the thing that kept coming up to me over and over again is ‘authentic community’. And I wanted to say ‘autistic community’ but honestly, right now — and I think for a very long time — the autistic community, because it’s literally so new, we are really trying to figure out who we are. This is the first time it’s ever happened.
And so, I want to say the first thing that we can do is definitely, for belonging, is look out for authentic community. What I want to say about that is that authentic community can come in a lot of spaces. Right now, the autistic community is really forming together. It is. It’s a beautiful chaos. And it’s necessary chaos. We need to do this. We need to figure out who we are, how we want to be seen, what is it to even be autistic, how can we do that in a healthy way, all of those things. And so, autistic community is really important, and authentic community. And what I mean by that is specifically special interest.
So, where can you find, no matter what, a million billion autistic people? Well, if you go to a convention, some kind of like — it can be an art show. It can be concerts. It can be anything, whether it’s a gathering of people that are all coming together because they so deeply love and appreciate something. That’s where you will find the autistics. For example, you know, we think about conventions. This year, I was not able to go. Break my heart, but I understand why. But I was going to go to my first Comic Con with my daughter, and we were going to meet Thor and Loki. So, basically, this entire experience for us was going to be nothing but what we call ‘heart happy flaps’ ’cause it’s just, it’s a special interest. And where else am I going to find people who are so ‘happy flappy’ about Thor and Loki from the Avengers, but a Comic Con? And if they are that interested in it, probably they’re autistic. They just don’t know. Either they know it or they don’t. But it’s so authentic and pure.
Churches. Oh my goodness, you’re gonna find so many awesome autistic people who gather for religion or spiritual things, because autistic people are deeply spiritual. You probably are going to find a lot of autistic, or probably I would say autistic ADHD people, in sports. I mean, to have the level of discipline that is required to develop yourself. So, what I want to say about belonging and community is there is so much focus on social groups, and it can be a lot of fun. But what if you don’t vibe with all the people there? And then it feels awkward. So, a direct example of what you can do — something that I did for belonging — I actually was tasked to create and run a social group at my local Jewish Community Center. And it was for teenagers, so they gave me the Superflex curriculum — [Laughs] Like, okay, am I going to read these books to a bunch of 13 year old boys in a semi-circle? Should they sit crisscross applesauce too?
Meg: Oh, no. [Laughs]
Sarah: Yeah. So, how can I take — and we have three boys who are all various ages, all various interests, what can I do? Because now we’re creating a social group, and I have, you know, it just was really awkward until I spent a little time with those three individuals. And what I found out was they were all competitive. They like to play. So, we did not call it ‘social skills group’, we called it ‘game school’. And they came to game school, and we came in, and we gathered, and we had different games set up, we had solitary games, we had cooperative group games, we started every single thing. They would come in and we would all work collaboratively together to set up an obstacle course. And then, we would do all these things, but it was just the focus was on what they shared as a group, and for their interest. And that was playing, games, let’s have fun. It’s not the social skills. So, when you can take that authentic motivation and bring it into whatever you do, you’re gonna find community. And that’s there. Investment in things you love.
Meg: I love that. That ties back so nicely to everything we’ve been talking about with strengths-based approaches too, is making sure kids have access to groups of people who share their interests rather than social skills group, including young kids. And also possibly autistic-only spaces for many kids. Jen Schonger, in Episode 10, also talked about as a parent just reading books written by autistic people helped her develop a sense of positive identity as a parent of an autistic child, and the idea of what her daughter’s identity could be.
I imagine that sharing those sorts of books, and blogs, and online resources for parents of very young kids could help them in that process as well. I love all of these ideas for how we can really connect autistic people to people who share similar interests, people who will celebrate the things they love together with them, and opportunities to become more fully themselves, and more joyfully themselves. What about folks who are working with parents of very young kids — two, three year olds — kids who might have just gotten their diagnosis. How can we celebrate and support their sense of belonging?
Sarah: The first thing that I want to address in your question is, young children. The primary occupation of children — young children, little children, all the children — is playing. Yet, what is the number one thing that we do? It’s we restrict and control play. And so, the thing that we can do most simply is just let an autistic person play. I’ll give you an example. Um, I met a young boy who was telling me that when he was little, he’d like to line up his cars. He would put them all in a line, and then he would go back to the end of the line, and he would move each car a little bit each time. And he could do this for hours. Hours.
His parents were very supportive of this, and they really allowed him to do this. And in our conversations, you know, I said, “Well, when you were lining up those cars,” — like he was telling me how he liked to play — I said, “Well, what was happening?” And he told me the most beautiful thing, which is that this align of cars was actually a scene in a movie, and that he was literally creating a race scene frame by frame in the movie. So, what he was doing was going back and advancing the position of a car, just a little bit, all the cars in the line to mimic frame by frame what would be the movement in a racing movie.
Meg: Wow.
Sarah: And so, I have heard, you know, one of my friends told me that they, in their room, they had a little hole in their wall. And that is very frustrating, I hear that, for many people. But let me tell you why they had a hole in their wall. The hole was like a portal to another world. That was their imagination, and they would take them, they would put their hands on the hole. And that’s where they would like anchor in order to enter into their imaginative play.
And if something wasn’t happening right in the world, in their imagination, or if there was a problem, and there they had the way to fix it. There was something wrong with the way they were entering the portal. And so, they would scratch a little bit more off the hole, because they were trying to change it so that they were like literally changing the storyline. And, you know, I hear the same. I have a wonderful friend who tells me that she can listen, and watch, and look at the way leaves flow. And that is a symphony for her. And so, lessons aside, you don’t have to route everything in quote-unquote ‘function’.
I had a therapist actually, he was in my home. And my totally different child loved to take a crochet hook and just wave it all around. And so, this therapist came and she said, “I know, I know. We’ll put a spatula in her hand. And she can pretend that she’s flipping pancakes.” That’s functional. And I said, “Oh, my gosh. Do you see the way how beautiful this is? Because she’s taking this crochet hook, which is shiny and beautiful, has rainbow colors in it because it’s light reflecting off the metal, and she was standing in front of the window, and she was literally playing with the refraction of light.” I could see what she was doing.
And again, it was just impressed upon me how because we feel like we know better, because what, we went to school? I don’t know. I don’t know. Power, hierarchies, systems, whatever it is, we feel like we know better. And so, we have to control the line of cars. Well, what if we just let that kid continue — and he did continue — to be on his way to become a director of his own movies. You know, my little friend who is playing with a crochet hook, what if we cue in on that and say, “My God, you’re a brilliant scientist. You see the colors of light, don’t you, reflected in the middle?” What if we just acknowledge that maybe little kids, big kids, adults — maybe they, autistic adults, autistic people, know something that we don’t about their own bodies.
And that sounds silly to say out loud, but just let them play. Trust that play. Trust the development of it, trust that they’re engaging. We talk about ‘doing, being, belonging, and becoming’. Just trust that process. That’s so scary. That requires vulnerability on our parts as therapists, and requires vulnerability on the part of parents. But, yeah, I internally cringe when a lot of the centers for autism, quote-unquote, ‘are places where autistic kids go to play’, and their play is restricted. Every little thing they do is restricted. Every little thing they do has a rule. And you’re missing out on the biggest area that you can support, which is actually our brilliant, amazing, intuitive imagination, and the way that we are able to understand and make sense of the world. And that all develops through authentic play.
Meg: I love this. So, ‘doing’, moving your body and stimming; ‘being’, existing in your body, in your sensory experience; ‘belonging’, finding authentic community; and ‘becoming’, through play.
Sarah: Mm-hmm.
Meg: I want to shift a little bit and let you speak, if you don’t mind, directly to parents. I want to have just a little snippet of this podcast that therapists can save and use when they’re working with a parent who has a child who has been newly diagnosed as autistic. And that parent is struggling with the diagnosis, and the therapist wants to convey this — your child is wonderful, your child is awesome, let’s help them know that and develop their own sense of positive self-identity — but the therapist isn’t sure what to say. Do you want to speak directly to the parent of a newly diagnosed child for us?
Sarah: Yeah, sure. So, the first thing that I would say to any parent that came in front of me with a new diagnosis for their child of neurodivergence, if it’s being autistic, if it’s being diagnosed with ADHD, first is — welcome. I’m so happy that you’re here at this point, because I know how hard you worked to get here. And I know how important it was for you to advocate for your child. The really neat thing is that you’re just going to continue doing that. You’re already good at doing that. You’re such a wonderful advocate.
I know that it can feel overwhelming, but first of all, I’m here. I’m here with you. There are so many autistic people in this world. If you want to connect with them through social media, that’s a wonderful way that you can get connected to autistic adults. There are Facebook groups, there’s Twitter groups, there’s actually something called ‘Ask Me, I’m Autistic’. And so, you know, the autistic community, the first thing that I want to tell you is that we are so eager and excited to give you support; to talk about what our experiences were like as children. Because your child probably is exactly like me, or was like me, when I was growing up. And so, I have a lot of insights to that process.
The other thing that I want to say is, what you can do right now, seek out those autistic adults. But, really, just sink in to yourself, and your intuition as a parent, and look at your child and how beautiful they are. And the way that they move. And when they’re allowed to move, and when they’re allowed to be, and when they’re allowed to simply exist. That’s true identity. Who is that child? Get to know that, and use the therapies, and use the support to get to know your child. If you are engaging in a therapy that is removing who your child is, that deserves a question. Because the way that we interact with our bodies is beautiful, natural. There’s so many wonderful things about being autistic. We’re creative, we are kind. My mom used the term ‘fearless compassion’ for me, and that’s still who I am today.
The autistic people that I see around me, for example, that I work with in Neuroclastic — so committed to social justice, incredibly fair, and if you want to see a group of activists that don’t let something drop, find autistic activists. We’re persistent, we develop everything. I mean, I feel like the creation of anything, you can you can look back at the person who created it and say, “You were autistic.” Because it really does require such a level of dedication, a level of perseverance, a level of commitment. That’s extremely intense, and that is our baseline.
So, if I could wrap all of those thoughts into one, I would want to tell you that you have a magical, beautiful, perfect, autistic, child. And the way that they move through this world, and understand the world around them, and the world inside of themselves is so intuitive and unique. And I’m so glad that they have you. Mom, Dad, parent, caregiver, aunt, uncle, grandma, grandpa. I’m so glad that they have you. Because I can see how much you love them. And I’m going to tell you that as an autistic person, because I have no boundaries, I love them too.
And so, I am committing to loving your child just as much as you do. And this is how we’re going to move forward together, as loving that beautiful, perfect, magical child, and creating a world that realizes how special they are too.
Meg: Thank you, Sarah. That was so lovely. So lovely. I like to imagine all of the parents getting this message at the time that they needed it. So, as we wrap up, I want to just ask you one final question —so, of everything we’ve talked about today, what’s one thing you would like to see OT’s start doing, or do differently in their work?
Sarah: Okay, first thing, straight up, what do I want OT’s to do — I want you to understand that being autistic is cultural. I said this months ago, and I’m going to say it again, that is the number one issue that I’ve run into when I’m talking to OT’s. If it’s virtual, on social media, there is a defensiveness that I can only — it’s rooted in systems, it’s rooted, I think, a lot of it is being ableist. I think it’s just internalized ableism, because we’ve come through an academic system. So, an academic system has already taught you that I’m special needs, right? So, what we need to do is just say, “This is a culture, this is a way of being.” This is a people that we don’t really know a lot about, and we have an obligation for the tenants of our profession to learn about this culture, because we talk a big game about being culturally competent. But when you don’t consider autism as even a way of being, then you’re already, like, that’s a ‘no’ for cultural competence.
So, that’s my biggest challenge so far, is that I really don’t see a lot of OT’s embracing autism, or being autistic as culture, but I’m heartened. Like, meaning I’m feeling hopeful, because I am seeing more, and more, and more, and more occupational therapists, and I’m seeing more and more students be a little sassy and really challenging the academic barriers found through the database. The database, to me, is a systemic barrier, because the gate keeps information. And so, I love vesting in students going outside of that and saying, “You know what? I don’t care. I’m going to reach out to this person who has a podcast. I’m going to reach out to this autistic blogger. I don’t care if that’s a level five research article, I like it.” So, yes. Culture, and I’m loving what I’m seeing in a lot of people, just this rebellion. It’s — I love system disruptors, that’s my favorite thing in the world.
Meg: Me too. Thank you for that, Sarah. So, speaking of system disruption, tell us what you are working on now, and where we can find you online.
Sarah: Sure. I continue to work with Neuroclastic. We just received formally, officially, all the things we need to be a 5013c. All those things, all those letters and numbers, meaning that we’re a non-profit. And the purpose of Neuroclastic is to really amplify autistic voices, provide consultant services; we’re doing so much, but what we’re really focused on right now, we’re doing a lot of social justice initiatives. We’re supporting two autistic men and one autistic teenage girl who are wrongfully incarcerated, and really trying to support them in all the ways that we can.
So, first, like Matthew Rushin is — we’re working with Matthew Rushin. We’re working to get these people who have been diagnosed as autistic, and we’re not going given advocates through the system, we’re working to get them out of jail because they don’t belong there. That’s a lot of what I’m doing right now, is because as an occupational therapist, the reality is that I have a ridiculous amount of privilege because of a couple letters after my name. And so, I use my letters. I use my letters to amplify autistic voices, autistic perspectives. I use my letters, mainly MOT, OTR/L to gain a little bit of ground in spaces where marginalized voices are not typically heard. So, we do that work, a lot of justice work.
What I’m personally excited about is that coming up — I talked about sensory, and I talked about how important it is as part of autistic identity development, and I am working actually with a psychotherapist, and creating a week-long sensory workshop where people are going to have education, and we’re going to have activities, and we’re really going to dive into exteroception. So, what we think of as the external senses — sight, smell, etcetera — and interoception, the senses that occur inside of our body, which can be anything from ‘My tummy is hungry, so it’s growling’, to emotion. Emotion is a sensory system. So, I am creating this workshop to really help people who experience divergently understand those experiences, and then how to take those, and they are actually going to create their own action plan.
Okay, so, I’m experiencing the world in this way, how do I want to engage in it? What do I need in order to be able, before, during and after? What might I need in order to regulate things that are coming out of me, experiences that are arising inside of me? And I’m doing it in the most autistic way possible. It’s called The Symphony of Sensory. Both Kate and I, my partner, have a very big background in music. And so, we’re taking our love for music, and we are applying that to our love for sensory. She is doing what’s called ‘transactional analysis’ which is a lot like the PEO model, and looking at the ways that we can take those transactions, and make them internal.
So, instead of looking for other people to be responsible for setting these things up and doing these things, to really, it’s almost like we call it parenting ourselves. ‘What do I need right now?’, and giving yourself permission to get what you need. That’s not what our society wants to teach us. And that’s what I talk about being a system disrupter. More saying, “No, this is a neurological necessity.” So, that’s what I’m doing. We’re not going to be doing public things until 2021. I want to get out of 2020, I just feel like I need to get out of 2020. [Laughs]
Meg: Yeah, we all need to get out of 2020.
Sarah: But yeah, I’m excited. The Symphony of Sensory. And it’s going to be the most autistic sensory education experience ever.
Meg: Awesome, Sarah! Well, I’ll link to Neuroclastic in the show notes, and I’ll also link to your Facebook page, The Autistic OT, where people can follow along with your progress towards this amazing project. Thank you so much. It was so nice talking to you today.
Sarah: Always a pleasure to talk to you. And thank you, again, for your commitment to amplifying autistic culture and voices. This is just one of my — it’s a cherished collaboration. So, thank you.
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