Interview between Speaker 1 (Meg Proctor), Speaker 2 (Rachel Dorsey), and Speaker 3 (V. Tisi)
Episode 73: A Therapist’s Guide to Supporting Authentic, Autistic Social Communication
[Introductory music]
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 our professional therapy practices. 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, everyone. This is our first ever live podcast episode of Two Sides of the Spectrum. And we’re streaming live on Facebook with some of our wonderful OT/SLP educator and mental health colleagues and friends. And I’m here on Zoom with V. Tisi and Rachel Dorsey. Let me tell y’all about V and Rachel if you don’t already have the pleasure of knowing them and learning from them. V. Tisi — hi, V.
- Tisi:
Hi!
Meg:
V is an Autistic, disabled, and queer educator, activist, and SLP. They founded The Speechologist, a small private practice that provides education and consultation. They also have a social media presence that if you don’t follow, you should. They are @speechologist on Instagram. V has worked in schools and taught graduate courses. Their area of specialty is intersectional justice for multiply-marginalized, neurodivergent people, and social emotional development and wellness. And also, here with Rachel Dorsey. Hey, Rachel.
Rachel:
Hello.
Meg:
Let me tell you all about Rachel. She’s an Autistic speech language pathologist running Rachel Dorsey, Autistic SLP. Rachel works with clients, consults, teaches, and trains other therapists on supporting their Autistic clients. She’s very passionate right now about gestalt processing, particularly as it relates to regulation, social communication, and mental health. Rachel’s also passionate about ethical and sustainable working conditions for therapists and educators. You can find Rachel on her amazing Instagram @rdorseyslp. Rachel’s a frequent guest on the podcast and an instructor of multiple Learn Play Thrive courses. Together, Rachel and V have just released a new continuing education course called ‘Let’s UNMASC’. This is such a good acronym. It’s UNMASC — Understanding the Needs and Motivations of Autistic Social Communication. It just launched for presale today, the day we’re recording this. It’s June 13th. And we’ll talk about that a little bit later. But first, I just want to welcome you both to the podcast and ask you to start by sharing your story. I want to hear how you came to be an SLP focusing on supporting Autistic people. Let’s start with you, V.
- Tisi:
Hey, thanks for that warm welcome, Meg. So, kind of by chance, landing in the world of what is autism. I am an SLP. And there’s no real mandated coverage of what is autism and how long the course is, the course works needs to be on autism in grad school. And so, I had a cumulative couple of hours of ‘What is autism’ spread across my classes in grad school. It was very abstract, it was filled with a lot of, like, a general these are the Top 10, you know, ‘red flags’ for autism that you might see. And then, I had a class or a seminar on how to physically protect our bodies in case we have a violent Autistic person. So, you know, I had this painted vision of what autism is in my head as a graduate student that never really knew what it was sitting in front of me. It’s not that I didn’t know Autistic people at that point. It’s that I didn’t know that they were and/or, you know, I just didn’t connect the dots on a lot of this type of stuff. At that point, I did not know that I was Autistic either. So, you know, really working on the traditional viewpoint of, like, what autism is. It’s something that is horrible. It’s something that needs to be cured. We walk now for autism so that we can one day, you know, get rid of it, or whatever it was that was sold down the pipeline to us as students.
I eventually worked in the public schools. I worked in special day classes. There’s the mild/moderate classes, there’s moderate/severe classes. And that’s really what got me introduced to what autism was beyond just like a textbook description, into seeing actual human lives in front of me. At that point, it was still very traditional, inherited a lot of goals. I learned specific goal writing things from graduate school that transferred into that work environment targeting a lot of Autistic traits to extinguish them. So, still looking at autism as this big problem. And still trying to like, “Oh,” you know, “The science is missing on what causes autism, but!” you know, I’m sitting there with my colleagues trying to like pinpoint, “Oh, look how old the mom was,” or, “Look how old the dad was,” really pathologizing that, and trying to like, you know, this is that horrible thing, “How could they have children that old in their age,” or whatever it was right. And this was less than 10 years ago, I think about eight, nine years ago. So, not super long ago. And then, from there on, the more I worked with Autistic children, and the more I was starting to see how these goals weren’t exactly, quote unquote, ‘making progress’, right, for those children, as well as it wasn’t making them happy. A lot of the goals that we were writing, that I was writing, and I was participating in, really just made a bunch of rote responses in my students. It kind of trained them to be robotic, because they were either correct or incorrect, and we praised them, or we, you know, “Try again,” not necessarily punish, but you’re making them known that they’re wrong.
A couple years of that, in starting to see who they are as people, as individuals, what they like, what they don’t like, starting to try to center them in my therapy but still have traditional goals, seeing that that clashed together as honoring them as individuals versus the goals I was writing were working against each other. And really not knowing how to move forward from that. I remember sitting at a couple IEP’s where we had to let parents know that their children were Autistic, or have very heart heavy conversations about their Autistic children’s traits and how the traditional goal writing was making it seem like their child wasn’t making progress, or was just this huge anomaly to what society wants in humans. And, you know, seeing the heartbreak in parents’ eyes, and also checking my own language of like, this feels icky. This doesn’t feel right. I know the kid in front of me, and I love that kid in front of me. And I know the parents love that kid in front of me. The teacher loves that kid in front of them. Why does none of this connect? Why were we reviewing goals and progress and going, “But…” you know, all these other personable things about them that we love about them as human.
And I remember even connecting to them, like, well, I’m like that, too. And I’m like that, too. And the parents will chime in, and the teachers will chime in of, “Oh, I have that trait also,” we all have that trait sometimes, right? That’s a different alleyway of another story into figuring out, how I figured out I was Autistic and got a formal diagnosis for myself as a late identified adult, Autistic adult — not that I wasn’t Autistic before. It’s just that I didn’t know. But that was kind of how I went down this journey of really starting to — I hesitate to say the word ‘specialize’ because I don’t think that that’s an accurate terminology. But it is how I really started to focus on this area, because it just didn’t match. And I think my brain likes to fix things that I can’t figure out. It’s a, you know, very commonly experienced neurodivergent trait to like, want to figure things out and fix things if we can’t and get frustrated by it. So, I hyperfocused on it for quite some time. And here I am.
Meg:
I’m so glad you’re here too. I want to ask people in the chat if parts of your story resonate, this kind of learning one way in graduate school or in our training, it not feeling right. A thread that I sort of followed through your story was that you were doing the things you were taught and trained and everyone else around you was doing. And somehow, it didn’t feel quite right. It didn’t line up. It also didn’t seem quite right intellectually. And I think a lot of the folks that listen to the podcast are people who are attuned to that feeling and willing to question what we’ve always done, what we’ve been taught to do. The common wisdom isn’t right just because it’s common. I’m looking in the comments. Jessica said, “A hundred percent didn’t feel right,” and they would refuse. Jessie says their hyperfocus on neurodivergent kids also helped them to discover their own neurodivergence. Emily says it’s very relatable. I know I’ve told the story before that when I was in graduate school, I said I would not work with Autistic kids as my like focus. Because when I had seen behaviorism modeled, I said that’s not a good fit for my personality. And what I meant was for my values and ethics. I don’t want to talk to people like that. I don’t want to treat people like that. Sara Lee in the chat says, in all caps, “I LOVE YOU ALL.” I think there’s this good feeling of finding community of people saying, yeah, I was taught that too, and I don’t want to do it. What about you, Rachel, how did you come to practice the way you do and to be an SLP?
Rachel:
It’s interesting hearing V because I think that I came from a pretty different place than V. I did have experience with Autistic people, both like in a, you know, as like, the kid in high school who like, volunteers, you know, that — like, I definitely wanted to, like, buff my resume for undergrad and I used the Autistic kids for that. And I did, I guess, also, you know, I’m cynical about that. But also, I did, like, feel kind of something there. I also, by the time I was in high school, and I had known that at least one of my parents is on the spectrum. So, I went into, I guess, kind of forwarding, okay, graduate, seeing how similar types of goals that are written for Autistic clients, seeing this — now that I’m reflecting on it, seeing like the people here really do seem like they care. Like, my instructor, [12:07] Dr. Ada Sterling, on my autism course, like, I respect her a lot. And you can tell she loved and still loves Autistic people. At the same time, a decent amount of the lecture at that time was pretty, you know, pathologizing. But the times that I got the most out of the lecture was I remember, there was a video of, like, assessing an Autistic kid. And this kid loved aluminum — one of those, like, foil balloons. Or no, no, it was blow up, it was blow up outdoor — like, blow up Santa. It’s like blow up outdoors things they put in your front lawn. He loved that and so she just brought that in like during the assessment to help him like feel safe and I’m like, that, I love that. But then, you know, time went on and I saw more and more of what other people were doing and I wanted to do things the right way. So, I did things that way for a few years. And it — I guess I can isolate another point to where, like, I remember focusing on joint attention, on increasing joint attention. And in particular, focusing on like, pointing — not pointing. On I point and the child can orient to what I’m pointing to, but like pretty far away. So, not just right here, like, you know, some distance. And like, it didn’t — they could do it, okay. But I remember like, that doesn’t mean — like, that doesn’t mean, this isn’t some like hierarchy of like, “This student can now do this; so therefore, they’re ready for some back-and-forth conversation,” like, that’s not what was happening. This child was already being social. And yeah, they could now, when really concentrating, kind of focus in on something when I point, but like this, all of this kind of groundwork that we’ve been taught, I’m like, well, this is blatantly wrong and how come no one’s saying anything about it? So, yeah.
Meg:
It is so interesting once you lift the veil, right, of like, yeah, they’re not putting with one finger. But I know they’re paying attention in this other way, or they’re showing me what to pay attention to in this other way. What are we doing here? Thank you for sharing your story. I know both of you mentioned that along your path at some point your barrier was goals. And I just want to mention that Rachel wrote a whole course on neurodiversity-affirming goals. And she said to me a couple of times, “Meg, I picked the most dry topic possible to make a CE course on, why did I do that?” And I was like, you did that because it’s the course people need. And you magically did it in a way that was incredibly not dry. So, that exists, thank goodness, because along the way, we do have to write our goals differently. But lately, you two together, you are such an incredible team, you both produce such helpful content on your own. And then, when you come together, it’s just unlike anything else that exists out there. And you’ve been focusing on social communication and working really hard with creating some content for folks to learn about Autistic social communication. Why? Why Autistic social communication? Why does this matter?
Rachel:
I guess I’ll start. I’ll say that it’s kind of twofold. Focusing, like, the need, my own drive to focus on social communication became very obvious once I started having a lot more Autistic friends, or seeing that the people that I was really close to, oh, they actually are Autistic, and oh, they’re figuring it out alongside me. And then, seeing the, just the joy of the, yeah, these really meaningful connections that I’ve honestly been searching for my entire life, and just never really seemed to find. That paired with seeing, I guess, around this time, I was also seeing clients, yes, some in through the schools and some in early intervention, but I was seeing a lot more clinic clients. And so, they’re older. And a lot of the parents had reached out to private practice because they were not happy, honestly, with what was happening in schools. And so, they wanted — they didn’t even, they didn’t think it was enough, or they just didn’t like how it was done. And then, I would have a 17-year-old in front of me who’s like, it’s everything from how they talk about others and talk about themselves and how they think about others and situations is through this anxious, hypervigilant kind of way that is really distressing. I can tell, oh, my gosh, there’s so many years of them not only having access to this amazing thing, but being kind of pushed down for not being able to — yeah, it was, it’s hard.
Meg:
I quoted you in the comments here, “The joy I’ve been searching for my entire life and just never seem to find.” And yeah, I saw a few angry faces pop up, the emojis, when you talked about just seeing Autistic adolescents in so much distress. I mean, that hypervigilance is a trauma response. Yeah, we’ll get into the impact of what happens if we keep doing what we’ve been doing, asking Autistic people to just be inauthentic for everyone else’s benefit. But I want to ask you, V, why have you shifted your focus towards Autistic social communication?
- Tisi:
So, my history of practice has majority been in the schools, the K12 public education system, and I’ve worked in all sorts of settings. I’m sure the attendees that are here right now live as well as listening later on, you know, we’ll have a plethora of people working in special day classes versus working in just like the mainstream environment and whatnot, and they can relate to this. But when you were working with kids that are — how do I say this. For my students who are in the, quote unquote, ‘mild/moderate classes’, the kids who we like to frequently label as, quote unquote, ‘high functioning’, whatever, okay. We tend to nitpick every single trait about theirs that looks Autistic or Autistic adjacent. So, whether or not the child actually is Autistic or not, you know, we know that there’s a frequent overlap with other neurodivergencies. We’ve got some allistic ADHD kiddos that have shared experiences as Autistic traits, right. We also have kids who are not identified and likely don’t qualify for any sort of diagnoses but they have traits that might overlap and be Autistic adjacent, okay. And we’ll nitpick those traits. And then, we’ll pathologize them. One particular example of this and something that I think why I started to focus on this and think about this out loud and having difficult conversations with colleagues, colleagues that I was live working with at the time, as well as colleagues that I confer with and discuss and think when talking about how to teach graduate students that I’ve worked with, as well as talking about impacting our field of speech language pathology as well as the outside adjacent fields that work with Autistic clients, just kind of anyone that comes around autism — parents too, right — once that thought of autism comes in as a bubble, we put on this lens and automatically we are searching for things that is wrong with the child.
And so, my one example is introverts and extroverts. Very, very popular binary, that has been all over social media, you know, since I was in early college of like, are you an introvert or are you an extrovert? Very well respected. Doesn’t matter if you’re an extrovert or an introvert, respected groups, right. And then, in between. So, if I’m an introverted extrovert, blah, blah, blah. So, we think about those kids on the playground, and lots of those kids are on the playground. I watch the kids on the playground, I go out there so that I know what trends there are with all the kids. And then, I also get to look at the trend of the kid who gets referred to me, okay. The child who reads by themselves during recess to regulate themselves or to escape to another world or because they just really enjoy whatever they’re reading. They either want to learn about something or in a fantasy land, whatever it is, right? Nothing wrong with that. We’ve got groups of kids who will sit amongst themselves in a circle. So, they’re friends with each other, but they’re all readers. They’ll bring out books, and they’re sitting by themselves, they’ll sit near each other, lay down on the grass, whatever it is, and they’re reading with each other. Not pathologized. Totally normal. What would we call that socially? We’d say they’re introverts or we say they’re readers, they like to daydream, whatever it is, right? Not pathologized. They’re cool. We would never refer for them to work on social communication goals. We would never refer them to work on social skills goals, because they’re not spending their recesses doing a very prescriptive ‘I say one sentence, you say one sentence. Now it’s my turn to say one sentence, your turn to say one sentence’, and how inauthentic that is.
But then, once a child is suspected of some sort of neurodivergence, whether it’s autism, whether it’s ADHD, right, we start putting in this huge lens, and we put that in front of our faces and start nitpicking everything. Suddenly, that same exact child isn’t allowed to be an introvert, isn’t allowed to have time to digest what just occurred during cognitively taxing hours and hours of schoolwork. Isn’t allowed to regulate themselves, to sit by themselves, to think by themselves, to go on a walk by themselves, things that are very, very normal that we would respect amongst adults or each other. But we look at it all of a sudden, “Oh, but they’re Autistic. That must be something that we have to fix. There’s something wrong with that.” That child is not socializing every opportunity that they get to. Why do they need to regulate? Why do they need a break from social, from socializing? And so, it’s literally like this lens. We take out a magnifying lens and we start nitpicking at things. And then, on the other side of that, parents, teachers, people who work with Autistic children, people who work with all children but are the frontline identifiers for supporting children that need extra help, so general education teachers, were also all being sold this idea that if we are fixing social communication to look like a neurotypical extrovert, a popular kid, or whatnot, like a future TED Talk speaker, I don’t know, then they are being prevented from being independent. They are being prevented from getting into the best universities, or whatever it is. They’re being prevented from, “Oh, but what if they can’t hold a job interview?” All of those sorts of things and this giant feeling of dread and this feeling of we are not helping them reach their, quote unquote, ‘maximum potential’. So, we’re being sold this as like, we got to fix these kids, or there’s something wrong with these kids. But also, on the adult side, the teachers, the parents, the occupational therapist, the psychologist, the speech language pathologist, us who are responsible for these children, we’re all being sold this giant capsule of guilt and fear that if we’re not doing everything we can to fix all these things are wrong with them, we’re causing them harm, because we’re not getting them to reach their, quote unquote, ‘maximum potential’. And how could we, because these kids should have every right to be the next President of the United States. And we need to get them up there to be the next President of the United States, without recognizing that most people never want to be. I mean, I don’t I don’t ever. I’ve seen how quickly Obama went from black hair to like, white hair, nothing I’m ever interested in, right.
I think that, like, we’re not honoring the reality and the real preferences and the necessary needs for regulation and socializing differences within our individual clients and students to realize that their future endeavors that we’re so scared of messing up also has space for individual preferences. That child that needs certain accommodations to not speak in front of a group of people, who might have social anxiety, who might have, or can’t present in front of a lot of people, doesn’t need to have a job that requires that. They don’t have to be a salesperson. They don’t have to be a TED Talk person, right. They could do anything else in the world that revolves around their traits that work the best for them. But we’re just so afraid of messing up and we keep judging each other about, well, if you don’t fix this, then you’re not helping them reach their maximum potential. And I don’t, I don’t think that, you know, the way school, disability law, IDEA, the way that the goals are being tracked, and how we track data, the way that we measure progress with our students, and the medical side, when we are working with insurance companies — so when you’re in private practice that accepts insurance, if you have a contract with an insurance or medical organization — they also track these things based off of the need for pathologizing something and the need for them making progress towards that very rigid goal. And being sold this idea that if we don’t fix it, then boom, you know, the world is going to collapse. And we’ve now prevented this child from their maximum potential. So, I think that’s a lot of me saying, that’s kind of what I’ve been focusing on, and why it kind of got me here. I saw the trends of which kids were being pathologized and seeing other kids that are doing the exact same thing that were totally accepted and celebrated. And I started to kind of dig backwards of why that is, and started to think about that.
Meg:
I will say, V, as you were talking, Rachel and I were like in unison just nodding along with you. And there was a chorus of ‘Aha!’ moments in the comments. That analogy is really useful, looking at differences that we accept versus differences that we pathologize. And when we pathologize them, we try to train them out of people. And at what cost? I would venture to say that most of the folks here at this point have heard that ‘At what cost?’, that asking Autistic people to perform their, quote unquote, ‘best selves’, right, their self that might be President, not their self that wants to go take a walk for themselves to regulate and learn about the things that they’re excited about. When they’re putting that on because we’re telling them to or making them or bribing them to, it’s linked to PTSD, depression, suicidality. It’s exhausting. It’s wasting the moments of their lives that they could be authentically, genuinely enjoying and being present in and building from their strengths. So, this really matters and I’m really glad y’all have put your focus here. I want to ask you to talk a little bit about Autistic social communication. I’ve heard a number of people refer to being Autistic as a culture and us non-Autistics have very poor cultural competence and cultural responsiveness for the most part. So, can we talk a little bit about how Autistic social communication might, how it might look and how it might be different from neurotypical social communication?
Rachel:
Do you see me smiling? There’s some devious thoughts there, but I’ll go ahead and start.
Meg:
It is a really mischievous smile. I’m excited about that.
Rachel:
Okay. I guess I’ll start out with an answer that isn’t devious anyway, that’s kind of just giving it to you. Yeah, so Autistic culture itself, like, culture is made up of so many things, right. How people socialize within that culture that is made up of so many things. Again, so many things, while very broad. It’s hard to talk about culture. Anthropologists aren’t even sure how to exactly define it. But social norms for Autistic people — are there social norms? Eh? Eh? And things that we commonly see or hear within Autistic people are often going right to the top conversational topic that holds the most, the way I say it is, like, holds the most emotional space at the moment. So, if you have like a kid who’s like, really anxious and ruminating on something, and it keeps going, going, going, and you, you know, start talking to them, that’s going to be the thing that’s going to come out. If you have an Autistic person who is really interested in succulents. And that’s like the thing that they love most of everything right now, when you start talking to them, that’s probably the thing they’re gonna go right towards. The exact reasoning behind that, I think, can be pinpointed to so many things. Attention, like a less tolerance impatience for things that don’t seem immediately urgent. Other Autistic social norms, like I said, comes with generally a distaste for small talk, often a monologue with many tangents that may not seem connected, but often are. It may take some explaining to like, “Oh, I got to this idea because I was thinking about this other thing.” Yeah, I mean, those are just a few that pop into my head. V?
- Tisi:
Yeah, I’m actually really excited to answer this question. And you guys laughed at my devious smile, because I just have so many thoughts behind this, even just like in the moment while you were talking, like, I’m just like, oh, my gosh, let’s go pathologize the Autistics that don’t fit stereotypical traits of autism. So, it’s something that like, I want to make sure — there are Autistic traits. And its commonly experienced traits that many Autistic people experience. But that doesn’t mean it’s prescriptive. There’s this one saying that I learned a couple of years ago which is, “You met one Autistic person, you’ve met one.” Like, that person’s traits doesn’t transfer to anyone else. But there are shared common things. And I sometimes get worried about these types of things, because it’s really easy to come up with a list of Autistic traits. But at the same time, having that list pigeonholes and stereotypes that culture. And so, that’s where that laughter or that devious smile was from. Then I started imagining, let’s start pathologizing Autistics who don’t have more stereotypical Autistic traits, like, are you the wrong type of autism? And it’s funny because we hear it all the time, like, “You don’t seem Autistic.” And that’s what it means is that Autistic people don’t always look like the ‘Top 10 Red Flag Traits’ of anything. And at the same time there’s also commonly shared things.
I think, to answer this question, the best way that’s more authentic to my answer is to share with you my favorite Autistic social communication trait. I love hanging out with and talking to other Autistic people because I’m able to unmask as much as I can, the most I’m able to. I’m never able to completely unmask. It’s the way I’ve been trained. And I don’t necessarily think I quite know what it looks like or feels like for me. But when I am in community with other Autistic people, and sometimes other neurodivergent people, you know, multiply-divergent or an allistic neurodivergent person who has different social communication traits, in these communities we kind of accept everyone’s social communication as is. Like, there’s no, like, you need to behave a particular way or you need to socialize a particular way. We’re oftentimes very explicit in what we might need as an accommodation in that moment. So, we might say things like, “Hey, today I need a etc. etc.,” and it’s not awkward. It’s not — it’s not this, like, layer that comes between the people who are communicating with each other. We kind of expect that and we give grace for it. Actually, I don’t even know if I want to say we give grace, I think it’s automatic. Oh, Rachel, you raised your hand. I want to answer you. Or I want to ask you why you’re raising your hand.
Rachel:
I don’t know how to cut into what people are saying when I have something that I want to excitedly contribute. So, sometimes I raise my hand. That’s an example of something that would be accepted, you know, with, you know, an Autistic communication, I guess, to add to what you’re saying with when there’s a group of Autistic people who embrace each other and love each other. And I guess I’m talking about my like, kind of real-life friends here. Some of them have official diagnoses, some of them don’t. They’re not — actually, most of them aren’t therapists or SLP’s, they’re just like, people I know. And like, let’s say that one of my friend starts, like, going off on some sort of tangent. It isn’t in our head, like, “Oh, my God, this is so annoying, he needs to shut up.” It is, “Oh, he’s doing that thing where he just gets really going on that on that thing. And that’s just him,” like, we accept him and love him for that. And I’m sure that I do similar things. And people are like, we accept and love Rachel for that. So, that was what I wanted to add.
Meg:
I love that. Thank you for sharing that.
- Tisi:
And it’s not just like the expression of like a person monologuing and getting super excited, speech rate increases, volume increases, right. But it’s also as the listener in those moments where you can also self-accommodate and have it be mutually respected, or ask the other person to accommodate you. So, I think of sometimes, you know, that what I just expressed, like a neurodivergent person, increasing volume, going on a tangent, increasing speed, right. And my auditory processing speed in that moment might not be like it is in other moments, or I might be sensorially overwhelmed because of what has either just occurred immediately before or in general in the weeks leading up to it that makes me, you know, my bandwidth might be slightly different. And that person won’t be mad at me if I asked them like, “Hey, you know, can you lower your volume you are, like, I’m a little sensitive right now,” or, “Can you slow down? I can’t process that fast today,” or, “I’m so sorry, I’ve got to go in about 15 minutes and I really want to hear your whole story. But can you tell me the main point because I gotta go in 15 minutes, but I want to hear everything.” And so, I think it’s just extremely accepted, because everyone communicates so differently from each other. And in the moment, day by day, moment by moment, that same Autistic person will communicate differently, and all of the time. And I would love to see that for every human. This shouldn’t just be like a treat that we accept when we’re in community with other neurodivergent mostly, you know, whether identified or not identified or official diagnosis or self-diagnosis Autistic people, right. But like, wouldn’t that be really freeing if everybody would just accommodate everybody else and accept everyone for all of our communication-ness? Love it.
Meg:
Yes, yes, we would all benefit so much from that. I want to ask y’all, what do we have to lose, what do we have to gain? Like, wouldn’t therapists start becoming curious about their Autistic clients’ authentic way of communicating and existing in the world? Can you speak briefly, like what’s the risk of not doing that, or what’s the positive outcome that we could have or the positive impact we could have in our work and with our clients when we do make that shift? Let’s start with you, V.
- Tisi:
Well, the problems you alluded to earlier, Meg, that like, it can literally lead to suicide ideation, it can lead to severe depression, right. And there’s a spectrum of it. It’s not like, you know, you’ve got to mask so that you can ace this interview that one time is going to lead all the way to something that severe. But like, a 24-hour, seven days a week type of masking, Autistic burnout. And what is Autistic burnout? That’s exactly it, it is — it’s like, normal people — not normal. Oh, that makes it sound like autism is not normal. But burnout that occurs for every person, including allistic humans. Gosh, I’m being very specific here, right. Regular burnout, without the descriptor ‘Autistic’ in front of it, it looks very similar to that, except it’s exacerbated by the exhaustion of 24/7 masking, whether or not the individual knows that they’re doing it. That most of the time when we talk about people getting to Autistic burnout, that’s usually when they either are getting identified with autism for the first time, or they just have no clue altogether. And it’s just, you know, we’re talking about like, severe mental health moments in their lives, that they can either come out of, or stay in for long durations and/or forever type situations. We’re also talking about things we can’t take back like suicide, things like big, explosive, large life decisions that we can’t take back, like rage quitting a job, because in that moment, you’re just so — you’re about to burst, right. And it also includes the little things, too. Small things like just being extra stressed out. Small things like cancelling plans, social plans, staying home more often. Like, the average person may not even recognize or identify because it is very commonly experienced amongst people who are not Autistic as well.
That being said, right, that’s the risk to it, is that we — earlier when I mentioned, you know, the big, heavy feeling of responsibility that we might ruin an Autistic child’s chance for their best opportunities, their — oh, God, what was that word I used? Their maximum potential, right. We also shoulder that responsibility. If we know that these things can lead to severe mental health repercussions, lead to dissociation, lead to a person not knowing their authentic self, and/or rejecting their authentic self and in the back of their mind constantly wondering, “What’s wrong with me, what’s wrong with me? Why is this difficult for me? Why am I not like everybody else?” whether or not they have a diagnosis or not, right, we can become a part of that problem. We are the ones who dosage the therapies and write these goals and respond in the ways that we do. We reward certain things; we punish other things. We tell them that the best — I worked with little kids, so, you know, the whole ‘Listening Larry’, “Sit up straight, legs crossed, eyes on teacher, ears are listening, mouth is quiet, you can’t make noises, you have to sit a particular way,” very, very rigid ways of behaving that then cause the person to not actually be able to learn. We are doing the opposite of what we are intending to do.
And that is one of the biggest harms, I think. It’s a big responsibility. Our intention is ‘X’. But what we’re actually doing is ‘Y’. What opportunities can this create if we do learn about it, like on the flip side. Like, any other sort of us growing as humans, better versions of humans of ourselves, is to help our kids find out who they are, to help our kids identify, you know, “Oh, I learned best when I’m humming to myself, because when I’m humming to myself, you know, it helps to regulate me, it also helps to block out the other noise around me. And I’m humming to myself while I’m reading, sometimes I don’t realize I’m humming to myself. I might bother other people, but it’s okay if you just tapped me on my shoulder, and I will go into another area that doesn’t bother you. Or perhaps you can avoid me by going somewhere else,” right? Accommodating each other. You teach these children to create worlds for themselves where they are forgiving, and they even know of their own traits, rather than to see themselves as ‘I’m different from everyone else, and something’s wrong with me’. You teach them then to also self-advocate of letting other people know including their friends and classmates and or family members, whatever, that this is who I am. And also, value who the other person is. And that’s also how you are. And I’m gonna respect that, but I also need you to respect me too. I think that’s a huge opportunity to create.
Meg:
It is. Thank you. You mentioned Larry, I do have to give a shout out to Elizabeth’s daughter who came up with Larry from Whole Body Listening, unaffectionately known as Ableist Larry, the visual about, quote unquote, ‘What listening looks like’. She did retract Larry and spend a lot of time listening to Autistic folks, listening to community, re-envision Larry as a way for teachers and educators to be curious about what listening looks like for an individual child. So, if those still —
Rachel:
She consulted with me. Yeah.
Meg:
She did consult with you. Yeah. If folks have, I think, I, like, burned Larry on Instagram once. And she messaged me. She’d seen that. She messaged me, like, “Hey,” and I was like, oh man. Great. So, yeah, so folks who still have the old version of that in their school, you can just tell your staff, hey, this has been updated. Here’s the new version. What about you, Rachel? What do we have to lose?
Rachel:
Yeah, I guess I really want to narrow in on the things that can be gained. And I think that a lot of people, dare I say a lot of some Autistic people, aren’t — a lot of people aren’t really sure of what a, like, a well-rounded, content — generally content — Autistic person, like, what does that look like? And what can that look like? And we, right now, the way that we see Autistic kids, usually when they come to us, they’re diagnosed and they’re, you know, we have their IEP, so like, they’re already in some type of distress in some way. And we think that, “Okay, well, they’re doing this and it’s because they’re Autistic, and they’re doing this,” when it’s actually just like, they’re not well, they’re not mentally well. And when you’re not mentally well, the full range of human emotions, that’s inaccessible. So, what can you gain from fostering, like, socioemotional and being in true social connectedness? Well, you can gain the person having way more learning opportunities, being possibly more open and curious because things seem to be more exciting. Something might seem kind of hard. And it would, if they were in a really unwell state, it would have been just exhausting to go through with that. But uh-huh, okay, this seems kind of interesting. And if all their emotional reserves aren’t taken up by some other thing, I’m going to actually try this and find out, “Oh, wait, I do like that,” or it’s, “Nah, a still ‘No’.” We just, honestly, we get to an opportunity to see how an Autistic person or how a person truly is, like their authentic selves.
Meg:
Thank you so much. I want to ask those of you who are here live to start putting your questions in the comments. A few of you have already done so. While you do that, I want to ask you, V and Rachel, to talk a little bit about your new course. It’s called ‘Let’s UNMASC’, like I said in the intro. Remind us of your acronym, what does UNMASC stand for, and talk a little bit about how the course works because it does have a really unique format.
Rachel:
Yeah. So, it stands for Understanding the Needs and Motivations of Autistic Social Communication. It is a — it’s a process. It’s a five-question process, like self-directed question process, where you have a clinical situation and you can ask yourself and others these questions. It’s basically a clinical problem-solving format that we’re applying to social communication. And in the course, we have — most of the course is just us modeling this. We’re modelling clinical problem-solving and reasoning as applied to social communication. And we’re doing that with fictional yet highly realistic case studies that span from, I think, first grade to high school.
Meg:
V, can you add to that a little bit? How do you address intersectionality, the sort of complexity of daily life, all the factors that are often sanitized out of case studies in continuing education? How does your course address that?
- Tisi:
So, using this sort of guideline that we’ve created, that lens I mentioned earlier about pathologizing Autistic traits, right, what I hope that this helps people do is using our framework or guidelines, our process, whatever you want to call it, to fine tune that lens that we’ve been building that pathologizes, right, because that’s how we categorize things. We do things that we know, and new things, and we want to make it more flexible. That way, we can look at any given situation. And instead of just seeing everything as like a binary — it is Autistic, or it isn’t — you know, the kid who’s reading a book by themselves during recess is a problem, or it’s not, we want to look at it as like, well, how much of this is related to autism at all? Is it an Autistic trait, or is it not? And how much of it that isn’t also gets layered on with Autistic traits to perhaps exacerbate it for the person themselves to experience, or from the outside world to look at that. Because, Meg, you mentioned intersectionality, right. Like, the world does not treat people equitably. And also, for the individual looking out and to experiencing things with how the world treats us, it’s going to make it so each person reacts to something slightly different.
I hope that with the UNMASC course, and these guideline questions, and how this is modeled for everyone with Rachel and I running through these case studies with you, that everyone’s also able to use those same questions individually when they have a client in front of them themselves, as well as when they’re working on teams with their colleagues to try to figure out how to help the student or client in front of them. It’s not — we’re trying to move away from a rigid idea of like a social skills curriculum. Because we’re not talking about Autistic socializing as a problem. We are talking about this is our Autistic kid, this is the situation that’s causing problems for them or causing problems for other people, and that person is totally fine with it, right, and how does that intersect with their Autistic selves? How does it intersect with other parts of them that we can now think about? In my mind, I picture it more spherical. Of everything kind of like as a spherical spectrum that’s intersecting with everything all at once, in that very moment, for that individual. How do we tease it apart? And then, how do we support all of the pieces, and recognize all the pieces rather than just seeing a very rigid, “This kid is Autistic and shouldn’t be sitting by themselves reading a book at recess,” versus, “This kid isn’t. And so, they are totally okay reading a book at recess under the tree.” Yeah, I think I answered that.
Meg:
Yeah. Thank you. Rachel, anything you want to add about the impact you hope this course will have on folks who take it?
Rachel:
Yeah. Well, goodness. I’m really excited, actually, for clinicians to feel — I guess the word that comes to mind is hopefully kind of refreshed. And see us modeling, like, these are real clinical discussions. We didn’t know the answers that we are going to arrive at, at the end of our conversations. And the answers that we’ve arrived at for these fictional clients, they, in real life, we would have to go back and kind of go through questions again and find two things. And we keep on saying the word ‘iterative’ in the course. But yeah, it’s an iterative process. I guess I’m really excited for clinicians to know that, like, they have permission to not get things right the first time. There isn’t really a right or a right answer. We’re just doing the best we can. But now, we have some guiding questions to help point us in a direction that we should think about more carefully.
Meg:
Thank you. I’m very, very excited to share this course. It feels like a rare privilege to sit there and listen to y’all discuss these case studies with the guidance you provide. And it’s a really, really different way to approach our work. And I think, I think a lot of us need to feel refreshed and more confident and more excited and like we know how to better align our work with our values. So, I’m glad, really grateful for all the work that you two did to create this course. If folks are interested, it’s at learnplaythrive.com/unmasc, U-N-M-A-S-C. It’s on presale until July 6th, where it’s $50 off of the full price until it launches officially in early July, which will be really exciting. It’s on demand, self-paced. If folks have questions about it, they can ask in the comments if you’re here live. I’m gonna go to some of the Q&A questions. Katrina says, “As a newer SLP in an elementary school, how do you suggest we start teaching kids about Autistic social communication styles, social preferences, and begin to normalize these differences for the next generation of kids? All the kids, not just the ones on our caseloads.” Katrina says, “At times, it feels like kids are given different messages if they’re comfortable and learning about social preferences in the therapy room, but then they aren’t accepted or acknowledged in other environments, or with their peers and family.” Have any advice for Katrina?
- Tisi:
I hear you, Katrina. Thanks so much for sending that question. This is my jam. I love this. So, you bring up something very important. We can try to work on it inside of our own speech therapy, or occupational therapy, or mental health therapy, or whatever office space, right? If it doesn’t translate to the outside world, the kids just going to be conflicted. But at the same time, it doesn’t mean we don’t do it. We still have to teach them. But also tell them, “Hey, you know, people might not be fair, and that’s okay to question that.” Teach them the same exact skills that it requires for any other bias that exists out there in the outside world. You mentioning that, though, just points out how important it is for us to have those scary, difficult, uncomfortable conversations with our teams that we work on. If a general education teacher is perhaps leading a more rigid social skills curriculum because it is the program your school chose to use, and it’s prepackaged, easy to use, because who on earth has time to recreate the wheel, right. And easy, prepackaged, brand-named with a bow, curriculums are shiny and have marketing teams and have really pretty cartoons that are premade, versus when I’m sitting there using my white erase marker and drawing little ugly, can’t even call it drawing, they’re like scribble scratches, to try to explain concepts. But that’s okay. Kids can function off of scribbles. They can totally understand abstract things if you make it concrete with, you know, it doesn’t have to be cutesy. In fact, half the time the really cutesy things are really hard to interpret if the font is a particular font that’s difficult to read. Really popular stuff that we find all the time on Teachers Pay Teachers. So, you’re mentioning something. So, I want to acknowledge, yes, that is really real. It’s very frustrating. And I hear you. And I hope that the feeling validated as a professional yourself is not, you know, that doesn’t solve your situation. But I hope that all of us can start to have harder conversations with our teams, having harder conversations with our leadership before they start purchasing these prepackaged curriculums, right. Having conversation with our leadership in the hiring process to start to think about the questions we ask when we have new people join our teams in order to find people aligned with the mission that you as a team are trying to look for in order to support your clients, students. Clients/students, those words are interchangeable for me, sorry.
In terms of how to teach littles about Autistic communication, a lot of Autistic communication isn’t necessarily just for Autistic people, it just might not be as common for allistic children. So, I think from the general education classroom standpoint, we need to start validating all differences. Some people need it to be quiet to learn. Some people need to make noise. How does, how do you learn? Do you like it quiet? Do you feel like loud noises or other people talking around you is overwhelming? Or do you like to hum and make noises yourself? Do you need to listen to music to help you get the energy to do your work? Some people need to sit at tables, other people need to kick their legs, and they might need to sit at a high top that has leg kicky thingies. Other kids need to lay down on the floor. And you might need to do all three of them! Normalizing that all of this is acceptable. It’s normal. And it’s fluid, and it’s dynamic. Communication. Some people like to listen and will just say, “Mm-hmm. Oh, wow,” and ask a couple questions without sharing about their experiences. Other people will interject and interrupt you to tell you about how excited they are to find out that you experienced something similar to that. If you don’t like to be interrupted, you can say, “Hang on, let me finish this,” and that’s okay. And teaching them ways to self-advocate as well as teach the other person they’re communicating with to accommodate for themselves, to accommodate both ways, right. Their needs is okay. And my needs are okay. And together, we’re going to accommodate each other. It doesn’t have to do with autism. It has to do with just all of them for all of their traits, being accepting of everything. In particular to autism, though, you know, I know that especially we’re on April Autism Acceptance Month, right. There’s a lot of like, themed approaches to exposing children to what autism is, similarly to how we have other months for other causes and themes.
So, something I’ve done last year, two years ago, was I went into a joined second and third grade — no, third and fourth grade classroom. And I went in there, I read a book with an Autistic character in it, I kind of introduced them to what autism is, talked about myself as an Autistic person. I brought up a couple Autistic traits that are commonly shared. And I asked them if they also experienced it, and I let them know you don’t have to be Autistic to experience this. And we had all of the children in their classroom, as a normalized experience with our therapy teachers, you know, they do the sign for same if they relate to something because then they’re not all, “Oh, oh, me too,” right, at the same time. And I got to see the students actually relate to a lot of the things that I was talking about, even though I’m guessing a lot of them were not Autistic, and are, you know, are not currently presently ever, you know. But it just, it normalized it all. And we had a couple of students after with a Q&A, like, type moment where some of them shared that they have Autistic family members. And I asked them questions, right. Like, oh, well, you know, like what’s your favorite thing to do with them? Not, you know, we’re not asking children, like, “What’s an Autistic trait that they have? And how does it bother you? And how have you fixed it?” We’re trying to normalize that this is okay. I even had one kid who said that their parent was, and that was very interesting. I’m always careful around that too. Because it is like identifying medical information when it is diagnostic. But so, I’m not out there fishing for this type of information. It’s just based off of what they’re sharing and responding in a way that’s very neutral. Very non — like, you’re not going, “Oh, I’m so sorry that your mom’s Autistic,” right? Or like, “Wow, how do you need to accommodate her? Like, what do you have to do that’s special?” No, it’s just, “Oh, that’s super cool. Like, I’m glad that she knows that she is. I’m glad that you know that she is,” that type of stuff. Just making it neutral, introducing the topic, normalizing the topic, as well as every other good topic out there that we need to teach our little learners to normalize.
Meg:
That’s so helpful. There’s a lot of enthusiasm in the comments about your ideas and I appreciate you tying it back into we treat this just like we would any other bias that people hold. I think that provides a lot of clarity, right. Like, if I’m the only woman in a setting and people are treating me badly because I don’t act like them, the solution isn’t to teach me not to act so feminine, right. Like, the solution is going to be multi-fold. But it’s so obvious when we look at acceptable ways of being. And somehow, the water gets muddy when we look at being Autistic, which is generally still not an acceptable way of being. So, thanks for bringing it back to this is a bias, so how do we support culture change around it, and self-advocacy, and a climate of understanding and acceptance. Lisa said, “It gets back to your original point around pathologizing these traits in Autistic students rather than just honoring the humanity of all of our learners and not marginalizing kids because they’re Autistic or neurodivergent.” I am monitoring the comments here. And there’s just so much enthusiasm for your ideas and everything that you’re saying today. And I want to thank the people who came live, almost all of them came, and stayed, and listened the whole time. It gives me a lot of hope that there are these folks out there who care a lot, who want to show up, want to learn, want to figure out how to do things differently. And I’m so, so grateful to you, V and Rachel, for your time and sharing everything that you have with us. Thank you.
Rachel:
Thank you. Thank you so much, Meg.
- Tisi:
Thank you.
[Ending music]
Thanks for listening to the Two Sides of the Spectrum podcast. Visit learnplaythrive.com/podcast/ for show notes, a transcript of the episode, and more. And if you learned something today, please share the episode with a friend or post it on your social media pages. Join me next time, where we will keep diving deep into autism.
