Interview between Speaker 1 (Meg) and Speaker 2 (Dr. Devon Price)
Episode 69: Unmasking Autism in Action
[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 to Episode 69 with Dr. Devon Price. Y’all, I absolutely loved this conversation with Devon. We went really deep into some of the more foundational questions around being autistic and neurodiversity, and then we tied it in to the larger systems that we live in. We also dug around inside the concepts of masking and authenticity to explore the pressures on autistic people and how we, as professionals supporting them, can push back. I’ll tell you about our guest, Dr. Devon Price. He is a social psychologist, professor, author, and proudly autistic person. He has written ‘Unmasking Autism’ and ‘Laziness Doesn’t Exist’. His research has appeared in a whole bunch of research journals and his writing has been published extensively including PBS and NPR. Devon lives in Chicago, where he serves as an assistant professor at Loyola University Chicago’s School of Continuing and Professional Studies.
Okay, after this conversation, Devon and I made some plans together. Because Devon, like so many of our guests, has a lot of information that therapists just really need to learn so that we can feel confident we are showing up for our autistic clients in a truly supportive way. At Learn Play Thrive, we’re deep into planning the content for our next continuing education summit, which will take place in January of 2024. Devon Price is going to be one of the speakers for our next summit. We have the whole lineup in place; it is going to be a truly unprecedented learning experience. You can see the details now at learnplaythrive.com/summit. Make sure to fill out the form on that page to join the waiting list, because when the early bird registration tickets go up this summer, they’re gonna go really fast. Here’s the interview with Dr. Devon Price.
Hi, Devon! Welcome to the podcast.
Dr. Devon:
Hi, good afternoon. Thanks for having me.
Meg:
I am thrilled to have you here. And I want to start, if it’s okay with you, by talking about you and your own journey. So, you’re a social psychologist by training. And you’ve written about how your love of research intertwined with your own journey of learning that you were autistic. Can you tell us your story and how you came to do this work and the impact that that’s had on you?
Dr. Devon:
Yeah. So, I think ultimately the whole reason I became a psychologist, and particularly a social psychologist, which, you know, generally we studied social dynamics and how just kind of the pressures of the situation shape how people behave. I think the whole reason I went into that field ultimately was because I was autistic, and I didn’t know it yet. And I had always been an outsider and somebody who questioned society’s rules and also just couldn’t follow a lot of those rules or intuit what they even were. And there were a lot of things I was not good at. I was physically very uncoordinated. I was in special ed gym. I had trouble with people. I was often rude without realizing I was being rude. But one thing that I was good at was academic achievements. And so, I really poured all of myself into that from the time I was in high school through to graduate school. And I went straight through, you know, I took college classes when I was in high school, went straight to graduate school after finishing college, and got my PhD in Social Psychology at the age of 25. And then, I was struck with these really horrible burnouts, really intense physical health symptoms. I had a heart murmur and severe anemia. And these fevers that would last like, months long. I would get them every single night for like nine months, and I was no longer at the capacity to be that kind of high achieving person that I had presented myself as to kind of compensate for how difficult everything else in life was.
And so, around that time, as I was kind of recovering from my burnout, and really moving at a slower pace, and really rethinking my entire career — or career and identity, frankly — a cousin of mine was struggling with the adjustment to college. And he was not having a good time. And he ended up getting assessed for autism. And he pulled me aside at a family gathering and said, “Hey, you’re a psychologist, what do you know about autism?” And I didn’t really know anything, because I didn’t study, you know, clinical psychology, I just knew the most basic stereotypes of what autism was at that time. So, he knew more than me at that point. And so, he was telling me, “You know, I got assessed for this. I think, you know, it’s probably going to come back that I have it and have you ever noticed all of these traits that people in our family have that are pretty autistic? Have you ever noticed, you know, the way that our grandpa info dumps about things and just how rigid everyone in our family is about schedules, and plans, and food, textures, and all these things,” and it was really eye opening to me.
So, from there, I started just inhaling as much information about autism as I could possibly find. I remember one of the early sources of information that I found was Neurowonderful by Myth Schaber, which is a YouTube series. And that was the first time I had seen, like, an adult non-binary person with like, you know, just kind of a soft voice and a very like kind of cutesy, nerdy demeanor talking about being autistic. Like, it was not, you know, of someone who was at the time very much like me, and I just went down this rabbit hole. And it was this years-long journey of getting to meet other autistic people, reading the research on autism, looking at the resources that the autistic community has created for ourselves, you know, being a part of the local community, and just kind of coming into an autistic identity for myself. And after, you know, about four years of that I started writing about it online, and that slowly germinated into some of the work that I do now.
Meg:
I do think it’s interesting that you were able to get that far in your training and not learn about neurodiversity. I had somebody say to me yesterday, “I’ve taken three child psychology classes for my bachelor’s degree and haven’t heard the word ‘neurodiversity’ before and haven’t really learned anything about autistic kids,” which doesn’t really make any sense, especially given what folks like you were saying about what a profound impact it has on your understanding of yourself, to learn that you’re autistic. And this is something that you do some work around, right, like helping people learn that they are autistic outside of this narrow model of what it means to be autistic that we’re often given from the mainstream medical model, to some degree. So, you have this article called ‘My Autism Checklist’ and the subtitle is ‘Autism: It isn’t just for quiet boys who love trains’. I’m wondering if you can give us some of the big takeaways about what it does mean to be autistic. I realize that’s a much longer conversation and our listeners are generally familiar, but it’s nice to go back to the basics. But also, what you would like to see changing about the diagnostic process and how we look at autism?
Dr. Devon:
Yeah, it’s a big question. So, the first way that we’ll start to answer it is by kind of taking a step back to kind of your first observation that it seems so bizarre that we can go through an entire even, you know, PhD program in psychology where I was taking clinical and neuroscience classes, and not encounter the concept of neurodiversity. But I think it actually isn’t that surprising when we kind of question our understanding of what psychiatry and psychology existed to do and the principles that they were founded on. And I think when we look at it through a lens of does this field historically exists to help individual people who are struggling, or does it exist to uphold systems of power? And I think if you look at it from kind of the power framework, stigmatizing groups of people who are inconvenient to deal with is a lot more useful than saying there are a lot of different ways for people to be, and we might need to really restructure society to accommodate the full breadth of what people are capable of and what people want to do with their lives. So, I don’t think it’s coincidental. I think the neurodiversity approach is very threatening to psychiatrist and to clinical psychologists, not as much to counsellors and some social workers. You know, there’s a lot of different ways to do the helping professions. But if you’re coming from a framework of we need to identify what is wrong with a person rather than what is wrong in our society that is excluding so many people, then you’re not going to go down the neurodiversity road, if that’s your framework.
Meg:
I really appreciate you taking us there. And later in the conversation, we’re gonna circle back to systems of power and oppression. I want to put a pin in that and make sure that we come back to that as well, because that’s really important. And I don’t think we’ve explicitly said that on the podcast before. So, thank you for that point. Okay, what does it mean to be autistic? And what could and should we be looking at differently?
Dr. Devon:
Yeah, so, autism is a pretty pervasive disability. It’s classified for the most part as a developmental disability. And what that really means is that autistic people, we do tend to develop certain skills and abilities on a different timeline from what’s considered, you know, neuroconforming, or socially desirable. One great example of this is that a lot of the research shows that autistic people, we continue to develop new social skills far later in life than non-autistic people do. Which is actually kind of an amazing and great thing. I certainly feel as someone who’s in my mid-30s now that I continue to learn new ways to effectively communicate with other people and set boundaries and to understand what I need and what other people that I’m in community with need. And there’s a degree to which neuroconforming people, they actually become stagnant a lot sooner in life. They don’t have to, but often they can because the world speaks their language, basically.
Autism touches every facet of a person’s life, potentially, from sensory issues, to how they learn, to how they move their bodies. And so, sometimes it can be really hard to sum up what all of these different traits are. And the best way of summing up what autism really is that I’ve found, it was kind of first articulated by the Autisticats. They’re on Tumblr, and Instagram, it’s kind of a collective of different autistic activists and writers. And they said, we can really understand autism as having a bottom-up processing style, whereas most non-autistic people process the world in a much more top-down fashion. And this really lines up with the neuroscience on autism too. We know that autistic people don’t filter out sensory information, that is something that, you know, background noise to a neuroconforming person. We take in everything, every individual sound and detail and piece of clutter in the room, and have to kind of intentionally in our minds put that together into a cohesive whole; whereas, a non-autistic person for the most part will just walk into the room and see, you know, a bedroom. And then, they can zoom in on those finer details, but they get the forest before they get to trees.
And so, it’s because of this bottom-up processing style that autistic people need a lot more time to process things and make sense of them and to think about what we think and feel about them. It’s why we need more recovery time after a social interaction, because we’re not following any handy knee-jerk rules of thumb the way that many neuroconforming people can just kind of know what to say and how to act in a given situation. And it’s why we have sensory issues, why we are more sensitive to small, you know, tickling, like tags in the back of our shirts, or, you know, somebody down the street playing their music too loud, because we are picking up every individual piece before we process the whole. Those things can get really disruptive and overwhelming for us and really cognitively taxing. So, that’s autism in a nutshell. But again, it touches so many facets of a person’s life. But there’s other things also worth mentioning, like, you know, on average, having lower muscle tone, on average, having worse reaction times, but not always. I think the bottom up is, you know, if you’re gonna try and summarize something as big and as diverse as autism is, that’s, I think, the handiest way to go about it.
Meg:
It’s really interesting to listen to you describe this in such a value neutral way. You know, I came from being trained by diagnosticians in a very pathologizing way about, you know, ‘Difficulties with central coherence’, ‘Can’t separate the big picture versus the details’, which isn’t inherently a deficit, it is a different way of processing like you’re describing. And you do a really good job of this in all of your work of sort of celebrating the strengths of autistic people, but also not viewing it through rose-colored glasses, painting it as, “Oh, it needs to be some sort of superpower for autistic people to be valued in society.” And also, acknowledging the material realities, especially for autistic people who are multiple marginalized. So, you have this article called ‘How can I teach my autistic students to love their disability?’ We’ll be sure to link to that in the show notes. But you write, and I’m going to quote you here, “Autism is just a way of being that’s different and less accommodated than some other ways of being. It can be positive or negative. But on balance, I think neutrality or ambivalence feels like the right approach.” Can you say a little bit more about why this sort of neutrality matters?
Dr. Devon:
Yeah. I think if we approach autism from a pathological lens, we’re — again, we’re just assuming there’s something wrong with autistic people rather than how we as a society are treating them. I’ve kind of already touched on the big problems that come with that. We really end up not understanding what’s going on under the hood when somebody is struggling and what, you know, what’s missing. And we assume it’s just them not trying hard enough or them being incapable of something. But on the flip side, idealization is another form of dehumanization. If you’re saying that a group of people only deserves acceptance because there’s really good at science, where they see things other people don’t see, they’re BBC Sherlock, they can solve mysteries, that’s really just a way of saying, “Oh, this group of people, we don’t value them as people, we value them as a tool.” And that’s a really troubling trend that I see in a lot of companies now that are starting to embrace neurodiversity, or say that they are. A lot of tech companies, for instance, will actively seek out autistic employees because they have this stereotype in their minds that we’re really hard working, hyperfocused, good at math and science and technical things, and, you know, we won’t complain. And that is a very dehumanizing point of view. That’s not a route to acceptance. That’s using us as an instrument.
You know, I think most of us would not argue that, like, gay people need to be accommodated in society because they’re so great at interior design, you know what I mean? It’s because, yeah, we’re people. And it’s the same thing with Autistics. You know, are there some of us who have, you know, savant-like abilities? Yes. But that’s super rare. Are there some of us who have special interests that happen to be interests that somebody else could profit off of? Yes. But we’re just humans. And the autistic person who wants to spend their life studying My Little Pony lore is just as worthy of a human life as the one who’s an engineer at NASA. And even for those of us who have been high achieving, I think, as my story tells, you know, it’s really draining to be that kind of high-achieving, compensating-for-your-disability autistic. The good little autistic, you know, The Little Engine that Could. I can’t do that forever, you know, like, I’m not going to be capable of being that person for much longer, honestly. And so, does my life still matter when I can’t write books and teach classes anymore? I want to be in a world where it does, you know, and I want to be in a world where people who are never capable of that kind of stuff are not judged in terms of doing something for somebody else’s benefit.
Meg:
I wouldn’t want to be in that world, too. And you’ve written that, you know, okay, if we’re not going to see disability as an asset, what autistic folks need from us is to stop being oppressed, excluded, dehumanized, and robbed of agency, what do you think the role is for therapists and educators in course correcting here?
Dr. Devon:
I think one of the first things to do is to really just be aware of the massive power differential that is in place. Anytime you as a clinician or professional are working with an autistic client or patient, there is just so much kind of threat hanging in the air there. Even if, from where you’re sitting, you know, you’re just there to help and you see yourself as completely harmless. Most of us have been burned in the past by educators, by school administrators, by police, by doctors. And there is still a very real threat for many of us of having our rights and our autonomy taken away. Just as an example, a lot of the of the transphobic legislation that’s passing across the United States and the UK is predicated on this idea that autistic trans people are not competent to start hormones. That is the argument that a lot of transphobic people are making. Autistic people, if you have a formal autism diagnosis, you can’t emigrate to a lot of countries. You can’t immigrate to Australia, or the UK. Autistic refugees from the Ukraine were turned away from being refugees in England. Like, this is a very real and present threat that’s still in the air. And it’s baked into our laws and our systems. And so, if you are interfacing with any of those systems — legal, medical, you know, insurance, what have you — you have to be very aware of how much power you have been given over an autistic person’s life, even if you didn’t want it, even if you don’t agree with it, and being able to communicate with your clients and patients and potentially their families about that stuff.
So, that can be something as simple as you know, if you’re a therapist saying, “Okay, you’re coming to me saying you’re pretty sure you’re autistic. Let’s outline for you all of the risks and benefits that come from getting diagnosed. And do you want to do that,” while still affirming, hey, I trust your self-judgement, I trust your self-identification, we can go however you want to go with this. But you need to be aware that having a piece of paper validating your autistic identity actually can put a legal target on your back. That’s one example of what that looks like for therapists. But when it’s in terms of, you know, occupational therapy, or school psychology, or any kind of support role, just try not to impose an external view of here’s what success for this person has to look like. And that’s really hard. You’re always going to have those biases of here’s where I think I want to get this person to be able to go. But just learn to question that. The goal isn’t going to be for all of us to have full-time jobs and get married and have kids and live independently, whatever that means, even though no human is actually independent, right? So, just learning to question that stuff, and to try to take the lead from the people that you’re serving. And I think that is a lifelong journey. You’re always going to have biases that you’re uncovering, and looking at, and learning to rethink and reformulate. And that’s fine. It’s that journey, and that openness to rethinking these things, and constantly choosing to put yourself on the autistic person’s side. That’s the journey that’s worthwhile.
Meg:
I love that call to action for therapists. And there’s a lot of layers there, right, of being engaged in the process of cultural responsiveness and uncovering our biases, and learning from our clients, and trying to learn to practice in a way that centers self-determination, which is hard, because we weren’t taught it and have never seen it modelled, most of us, but so important. And in a lot of ways people’s lives are on the line. Not to be dramatic, but with suicide rates like they are and the high impact of being asked to constantly mask and not being in control of your life, it’s a very important thing for us to do the work around. I want to tie this all back in. One of the themes that keeps coming up in what you’re talking about is how the system at large benefits from pathologizing autistic people. You mentioned before that neurodiversity poses a threat to psychology, psychiatry, and that this sort of rose-colored glasses ‘Autism as a superpower’ model really ties into productivity. You’re valuable if you produce profit, generally, and capitalism at large. So, we really like to do the work here on the podcast of tying things in to larger systems, especially systems of power and oppression. And you do this so well in your work. I’m just gonna keep quoting you to yourself, Devon, because you’re so quotable. You said, “Autistic people should matter and feel good about themselves no matter what they do or don’t accomplish.” Can you give us the basics of how this is relevant to thinking about how we support autistic people to fully and authentically engage in their lives from diagnostics through goal writing, and what kinds of ways we support our autistic clients?
Dr. Devon:
Yeah. I think one of the most important things for a lot of the autistic clients that many listeners to this podcast will be working with is just empowering them to be able to say ‘No’ to certain things, because we are really robbed of agency and not trusted about our interior experience and our limits, kind of across the board. You know, if you are diagnosed young, you’re usually put on the path line of ABA therapy where you might be asked to — you might be forced to make eye contact. You might be expected to be able to talk, even if it’s really draining and uncomfortable for you and takes years of really painstaking effort, and it’s just never the natural way that you’re going to communicate. And even if you aren’t diagnosed, those of us who grew up not knowing we were autistic were told that we were too sensitive, that we were hearing things that nobody else could hear, that we were missing social cues that everybody else could see. And that life would just be a whole lot better if we would just stop complaining and kind of do what everybody else was doing. Even if we’re not told that explicitly, we hear that message over and over again. So, either route means that a lot of autistic people grow up and grow into adults who do not trust our own experience and have basically our whole life defined by the expectations of the outside world. And so, if you’re working with autistic people, anything that you can do to hear their ‘No’, to see their discomfort, and to actually trust it and honor it is going to be really different from what we’re used to in a really positive way.
And so, I think, and this goes back to the kind of questioning assumptions and goals piece, you know, what can you do to be an advocate for somebody who they can speak verbally, but it’s really painful for them? And a better life for them would be a life where they don’t have to do that, where they’re not expected to perform that, you know. What can you do to kind of just advocate for the humanity of those of us who can’t speak at all and communicate in other methods? If someone knows that certain social expectations are just never are going to work for them and don’t serve them, you know, what can you do to empower them to think about, okay, if living independently and working full-time is never in the cards for me, what does building a community look like? How do I go about meeting other disabled people who will get it, and other autistic people, and building up a support network so that I’ll be able to kind of carry through into the future and have some constancy there, and just an impact in my life that I feel good about? You know, those are some of the things to kind of start thinking about. But it’s tricky. It comes up, these forces kind of come up constantly. But anything you can do to kind of start being a person in autistic people’s lives, who says, “Oh, yeah, I actually believe you that you hear this buzzing in the room,” or, “Oh, actually, it’s fine if you want to sit on the floor instead of in that uncomfortable chair,” and just encouraging us to kind of get in touch with our feelings and to articulate them and to not be afraid. And of course, earning that kind of trust takes a really long time, because we have been burned so much in the past, but it just makes such a huge difference, because it makes it possible for us to access our agency and our autonomy, and our consent, again, because a lot of times we’ve had that quiet all our lives.
Meg:
Yeah, it’s hard to know that you can ask for something that you’ve never had offered or modelled for you. It’s hard for anybody. In a recent interview, Lei Wiley-Mydske said that, “The foundation of teaching self-advocacy is listening to and accepting our clients’ ‘No'”. So, I love to hear that again, because we often start with just sort of this highest level of ‘Tell them what you want, and why you deserve it’. And it’s like, no, there’s a lot of foundational pieces missing before that. I also love this idea that allowing for ‘No’ including from autistic people, including from children, including from non-speaking people, is a radical act. And building community in our world is a radical act. And it’s hard to do. We talk a lot on the podcast about having autistic-only spaces for autistic people and interest-based spaces as an important way of building a feeling of acceptance and inclusion and community; and I’m okay the way I am and right now I don’t have to mask. And so, I love that this is your takeaway of how we can push back against some of the pressures of — I want to say neurotypicality. You say neuroconforming people, is there a counter word to that? Can we say neuro non-conforming?
Dr. Devon:
Yeah, yeah, I think neuro non-conforming is kind of — and part of why I’ve started using the word neuroconforming is because I’m not sure that neurotypical people exist. I don’t think the standard that is being neurotypical really serves anyone. I think almost all of us struggle to meet that ideal. We’re not the perfect portrait of sanity and productivity and good adjustment all our lives. None of us are. And so, I think what really is happening is we just vary in how much we can conform to that ideal. Some people can fake it a little bit better than others. And some people just have to try our best and still kind of flounder at it.
Meg:
Yeah, it goes back to that idea that universal design or inclusivity, that all of this is good for everybody. The way the world is, the way schools are, the way healthcare and mental healthcare — they work for a very small subset of people and they only barely work for them. I think there’s a reason so many people are eagerly listening to this content. It feels right on a human level to say like, yeah, actually things should be different for everyone. I want to circle back to masking. So, your book is called ‘Unmasking Autism’. And you write that, quote, “Refusing to perform neurotypicality is a revolutionary act of disability justice. It’s also a radical act of self-love.” You describe yourself as ‘Proudly autistic’. I’m wondering if you can talk to us a little bit about your own journey towards this position. I don’t know if that’s where you started or if that’s somewhere you arrived. I’m just sort of wondering how we can support our autistic clients on their own journeys given the climate.
Dr. Devon:
Yeah, I think one thing that’s helpful if you’re in kind of a support role is just knowing that coming into this identity and reconciling it in the world seems to come in stages for a lot of people. I think a lot of people have an initial stage of kind of reckoning with an autistic identity that is totally pathology based, right. You discover there’s this thing ‘wrong with you’, quote unquote, and it’s really threatening because it means that maybe some of the things that you’ve struggled with in life, you will always struggle with. That it wasn’t that you weren’t, you know, trying hard enough, it’s that you can’t do it and that you shouldn’t have really, you know, been expected to do it. And first, kind of facing that can feel really bleak. There’s a grieving process for a lot of people are feeling self-stigma that you kind of have to carry and process. And unfortunately, some people never move beyond that. And they only see autism or any neurodivergence or mental illness as just this thing wrong with them. But then, hopefully, if you find community and you find kind of the neurodiversity kind of world and writing and school of thought, you kind of start going through a phase of questioning that and pushing back against that. And this is where you sometimes see, I think, the overly positive view of autism, even among autistic people ourselves. I think it’s an overcorrection. And I think it’s kind of a normal stage of the autistic identity formation process. It’s really similar to when queer people come out. And, you know, our family members say for a couple of years that we make everything about being gay. Like, that we’re just covering everything in rainbows and we’re just making jokes about being gay and just talking about being gay all the time. And part of it is like an overcorrection for being repressed for a long time. And so, I’ve noticed the same thing happens to a lot of autistic people, that they reach a point where they say, “Wait a second, being autistic isn’t bad, it’s good. It’s wonderful. In fact, we’re better than other people. We’re more rational, we’re less biased,” you know, and that isn’t really true. We’re human beings. We’re just as capable of, you know, racism, and saying something oblivious as anybody else. But I think it’s kind of a nice stage in pushing back against that idea that we’re defective that many people have, is that they focus on autism strengths for a while, and how much they love being autistic. And that’s great.
And then, I think, ultimately, you reach a point which I talked about in the book of identity integration, where you take all of the past selves that you’ve been and all of the different ways that autism and stigma have kind of played out for you; all of the sadness, all of the anger, all of the false selves you’ve had to present and pretend to be, and all of the pride. And you kind of see how it all fits together into one life story. That you’re one cohesive person, you’re not this fragment itself. Because often, when people experience a lot of trauma and a lot of exclusion, they have a really fragmented sense of themselves — here’s the person that I am at home, here’s the person that I am at school, here’s the person that I never got, that I really am deep down. So, I think the goal ultimately, you know, for most people, is to kind of go through these stages and to really kind of learn and grow and examine these things. And it only really happens in relation to other people in the community. And it takes a lot of time. But that is definitely a trend that I’ve noticed over and over again both with late-diagnosed or late self-realized Autistics, as well as people who grew up with ABA and special ed and all of that. And it’s fine wherever your clients are in that stage of the process, or if their process looks different, you know, kind of like we were talking about before. It’s okay, if somebody doesn’t feel good about being autistic, it’s okay if they don’t feel proud, it’s okay if even they feel ashamed sometimes. Like, you can talk about that. And then, you can also talk about, okay, can we separate the very real pain that you have, being an autistic person in this world, from, you know, is there something innately wrong with you? Like, recognizing that a lot of this stuff and a lot of our suffering is external. It doesn’t make things better. In fact, it can make you really angry for a while, but it helps you, it gives you insight, and it does help you with your kind of identity development, because then you don’t see yourself as broken anymore.
Meg:
I’m thinking a lot of us work with very young children. And I wonder if their parents or caregivers are going through sort of a parallel process that we can guide them along and help them not get stuck in one particular part of it. Do you have any thoughts on that?
Dr. Devon:
Yeah. I think parents need to meet as many autistic people as they can. Autistic adults, and their kids should meet those autistic adults, too. Like, throw yourself into the community. Sometimes you’re going to annoy people, sometimes you’re going to say the wrong thing. That’s okay. Just move with grace through that and know that you’re entering those pain points for the sake of yourself and your kid. Find autistic adults, find autistic teens, find community events. And I know, I live in a city so I’m a little bit spoiled. Because, you know, I can hop on, meet up, and find all kinds of autism groups, and Facebook as well. But those things are out there for most communities and most towns. And really let your kid and yourself see the variety of different ways that autistic people live and the kinds of people that they grow into. You will have to meet a lot of people and have a lot of conversations and conflicts, healthy conflict, you know, that will help slowly wear down those biases that you have and those fears that you have for your kid. Because if you’re anything like most of us, you grew up with a particular singular image of autism in your mind and it was not a good one. And so, the solution is to see the full neurodiversity, and maybe see a place for yourself in that community, too. A lot of parents end up finding out that they’re somewhere on the spectrum or that they can resonate with a lot of neurodivergent experiences. And that’s great. And I think having just a real sense of the vibrancy of who we are and how our lives look will help give you hope. There isn’t a single roadmap for where your kids gonna go. And as soon as they know that and you know that, too, it’s very freeing for both of you.
Meg:
I think this is a section of the podcast that therapists should just like timestamp on their phones and play for families of newly diagnosed kids. That’s a really nice reframe. And we talk about a lot here that families learned this pathologizing medical model from medical professionals. They didn’t make it up from their deepest parenting intuition. They learned that, and I think that it’s a very healing process to go back to this idea that, like, my child is good. My child is lovable, my child is okay, they don’t need to be fundamentally changed. And we know how dangerous and harmful teaching autistic kids that they are not good, that they are not okay, that they need to mask, that they need to perform neuro-typicality all the time is. And we talk about that a lot on the podcast, but I also know that it can be really insidious. I’m wondering if you can outline some of the pressures to mask or perform neurotypicality that people might not be as aware of, and the impact that can have compared to being authentically yourself?
Dr. Devon:
Oh, gosh. I mean, it’s everything. And it’s from all directions. It can be something as small as everybody in the classroom staring at you because you’re shuffling in place in a way that strikes them as weird. You know, in my book, I have just a litany of examples of just little undercutting comments that classmates made, or that teachers made, teachers telling you to sit normally, or to not talk in that weird voice, and just responses, facial expressions that people give you if you act in a way that registers to them as weird. You’re just bombarded every day as a neurodivergent person with all of this social feedback saying, “You’re wrong, you’re weird, why are you doing that you need to explain why you’re doing, what you’re doing.” And that’s why so many of us grow up into really anxious people pleasers who over-explain everything we do, because we’ve been forced to kind of justify everything. And so, it’s hard to kind of even sum up, you know, what all of those pressures are, because it’s just this, like, this program that’s kind of downloaded into everybody’s brains. And to be clear, the people who are doling out this social judgement, they’re just scared and afraid of ostracism, too, you know. Like, they’re not doing it usually out of malice. They just have a set of rules in their mind of here’s how you are, a normal, appropriate person. And when somebody crosses one of those lines, it freaks them out and confuses them, and they show it. And sometimes they punish it.
So, if you are a parent or you’re working with autistic clients, there is no enshrining them from all of that, unfortunately. I draw the parallels to queerness a lot. And it’s not coincidental, because I think there’s a lot of similarities there. But, you know, you couldn’t protect your queer kid from all the homophobia in the world, either. And so, a lot of times it comes down to noticing it, having conversations with them about it, acknowledging it. And as they grow older, kind of helping them to distinguish between here’s something that’s happening to me that is painful and unfair, that doesn’t mean that it’s right. That doesn’t mean that I have to set who I am as a person by these other people’s examples. And here are the things that I can say and do to advocate for myself. And also, you know, unfortunately, here are the places where I can choose my battles. A lot of Black Autistics, for example, talk about how they teach their kids to mask. They know that their kids need to mask because if you are a misbehaving Black boy, you might get arrested at a very young age, or you might, you know, face violence, or have the cops called on you. Whereas a white autistic kid ‘acting out’, quote unquote, in the same way as might be treated with more sympathy.
And so, there are situations where many of us have to mask for our safety, or to minimize a conflict. And so, again, I think, and this is more of a conversation for kids as they get older and young adults, but learning to see masking as not this thing that I have to do all the time because that’s the only way to be a good person, but here’s a set of tools that you are in control of that you can choose to use in certain situations. and it’s unfair that you have to, but we can talk about it and we can talk about what the cost of it is, and do everything we can to put you in situations where you don’t have to do that as much. Which, again, it all comes back to community for the most part, because when you are around people who get it and who are like you, you don’t have to do that so much.
Meg:
I appreciate your analogy to queerness. Because it’s a little bit — it’s useful to use that because we’re a little bit farther along as a society in terms of acceptance and inclusion with queerness than we are with neurodivergence. And so, I often have therapists say to me, “Yeah, but the autistic child wants friends. So, we need to ask them to meet other people’s standards, or they’re not going to fit in.” Like, please, autistic person, make everybody else comfortable. I promise, it’ll help you meet your own goals. And if you look at that as saying, “Hey, queer child, please don’t be open about being queer in school. Don’t ask queer, because then people will reject you. And I don’t want that for you.” That’s not a caring act. We know better than that by now. And somehow, a lot of folks are still sort of missing that mark with autistic people. I asked this question to my colleague, autistic SLP, Rachel Dorsey, once when I was just updating some of the content I was teaching. The like, “Yeah, but shouldn’t we teach social skills for kids so they can use them when they want them?” And she gave me this caveat of so many of us have been conditioned as such intense people pleasers that if you teach this to us as a way of acceptance and inclusion, we will so quickly and so easily lose sight of who we authentically are, and we’re not going to have satisfying social relationships if we learn to have social relationships through masking. And I just want to make that distinction between that and what you’re saying of, yeah, sometimes you have to put on masking to, you know, get through school, get by with the police, like all of these sorts of requirements. But I believe, and correct me if I’m wrong, that having friends shouldn’t be one of those times. Would you agree with that?
Dr. Devon:
I would absolutely agree. And some of what you’re saying reminds me of this quote that I have in ‘Unmasking Autism’ from a former ABA therapist who left the field because at some point, they had this moment of realization of I’m training these kids to be compliant and agreeable and people pleasing. And what happens when this child is an adult, and somebody wants to have sex with them, and they don’t want to? I’m not giving these kids the tools for navigating consent. And not just sexual consent, right, like body autonomy, period. You know, it’s this poison laced with sugar sometimes that we give kids when we think we’re teaching them this is how the world is. But when we ever whenever we say that to a child, we’re saying this is how the world’s going to continue to be. We remake society every day with our choices, and with how we raise the next generation. And that is a heavy burden. And no parent is perfect. Every parent has to make some, like, some decisions and words come out of their mouths that they never thought they were ever going to say as a parent or as a teacher, or as a therapist, you know, so these things aren’t binary. But yeah, if the idea is I have to make this kid palatable so that they’ll have friends, that is not real friendship. The reality is that many of us are going to struggle to find our people, just like queer people are still a minority in this country. We’re a larger group more and more with every passing year as more people get the courage to come out, which is beautiful, but we’re still in the minority. And so, we have to find one another and really put intention into that. And I think autistic kids would be much better served if the caring adults around them put a lot of energy into helping kids find other kids like them, and finding their home base in that rather than trying to make them fit into the standards of a world that doesn’t speak their language. Of course, you know, will they have some neuroconforming or non-autistic friends? Hopefully. Hopefully, there’s some kids out there who aren’t that judgmental. Kids will surprise you sometimes. Kids only regurgitate some of those biases because we told them that they have to, you know, like we, by training our autistic kids to act more neurotypical, we’re also training the neurotypical kids around them to be catered to, whereas if they had to just grew up around openly autistic kids, they would learn a lot more social skills, like neurotypical kids need to learn autistic social skills. And once both sides are doing that, then we can talk about, you know, in a more equitable way, but right now, all we do is focus on changing the autistic child and that’s not right,
Meg:
Absolutely. I’ll tell you a funny personal story. My kids go to an explicitly neurodiversity-affirming preschool. My kids are not autistic. And I had to explain gestalt language processing to my three-year-old the other day, because she was trying to figure out why one of her classmates said a certain phrase all the time to mean lots of different things. And, you know, she started with, “I don’t like this child, because he always says this, and I don’t like that.” And I, on three-year-old level explained, delayed echolalia and scripting to her. And then, she was like, “Okay, I guess that’s fine. Just misunderstood it.” And she came in the next week and said they were friends now. And I realized that’s a really simplistic example. But, you know, I just made a choice in that moment not to underestimate her ability to process that people are different. So, I love that. And I’m curious if there had been an adult in your school, for example, who had an analysis of neurodiversity and sort of got it. It sounds like one of the things that would have been helpful is access to autistic only spaces where you can be authentic, and by default, to the neuromajority, and included. What else do you wish an adult had been able to do in that space? The answer isn’t ‘Teach you the social skills to not get made fun of’. What could they have done, or what do you wish people would do?
Dr. Devon:
I think, in my case, I definitely wish there’d been adults around who would have helped me kind of cultivate my strengths and special interests more. A lot of things that I was passionate about as a kid that we’re just kind of sidelined as like a weird, quirky thing. Which is fine, you know, it’s certainly better than getting like, bullied or reprimanded for liking strange things, which a lot of autistic kids have to deal with. But, again, I think schools as institutions really force a particular set of life goals and pursuits on every child. And we see, all of us, how much that fails every kid, being forced to conform to those standards. It’s not just a disability-related problem. So, one thing that I think would have been really immense for me is just having more space to do more self-directed learning to be able to really pursue the special interests that I had. I was really — I wanted to be a bat biologist when I was a kid. So, you know, things like just having more time to like study bats or opportunities to go into nature and to, you know, interface with like the park district, or the zoo, or to get to see, and to really put that passion. Because one thing that a lot of autistic people struggle with, for all the reasons we’ve already outlined, is having a lack of agency. We’re not trusted to go after the things that we want; we’re told we were too excited about weird things. So, we live this really like grey, drab half-life where we’re repressing everything about us that is pleasurable and positive, as well as just the neutral things that people have told us make us freaky, and bad, and weird, and awkward. And so, like, I just, when I think about how different life would be for so many autistic kids if they could just be super interested in the things they’re interested in and have more control over how they spend their time and what they do with their bodies and their minds, I think we would see just a lot better adjusted autistic people. And we would not be, you know, repressed people pleasers. A lot of us end up having to go through this journey of kind of almost re-parenting or something in our 20s and 30s and beyond of rediscovering the things that we actually like in life, because we’ve been trying to be a respectable adult person for so long that we think life is supposed to be joyless, which is so sad. It doesn’t have to be that way.
Meg:
That’s such a good call to action, because making space to build from kids’ strengths and interests is something that therapist of all types can do and can create space for our autistic clients at home and in the schools. It takes us back to one of the very first episodes of the podcast when Dr. Kristie Patten reminded us that we don’t build our lives on our deficits, we build our lives on our strengths. And I think I must have quoted her a hundred times since then, because that’s so poignant. I just want to ask if there’s anything that you’d like to add to the conversation that we didn’t touch on or to bring us back to some key points from what we’ve talked about today?
Dr. Devon:
Oh, gosh, I don’t even know.
Meg:
I used to ask for one big takeaway, and I had so many people say this is too hard of a question. So, I keep trying to tweak it. I haven’t landed on the easiest way to ask this. Just anything you want to bring us back to before we wrap up?
Dr. Devon:
Oh, gosh. You know, usually when I am in like an interview situation, I’m just so focused on like being coherent in the moment that I can’t think about — maybe that’s the answer, then. When you’re interacting with autistic people, it’s always good to know that we need like, a lot of time to think through things and that like a real-time interaction is really straining for a lot of us. That’s not true for everybody. Some autistic people are good on their feet. But, you know, if somebody wants to know my thoughts about something, I need to like go sit in a field somewhere for four hours and then I’ll know what the takeaway is.
Meg:
That’s actually a great takeaway, especially for those of us who are assessing people like one question after another, there’s a better way to do that for sure. Tell us what you’re working on now and where we can find all of your work and you online.
Dr. Devon:
So, right now I am finishing up edits on my third book, which is about something called ‘Systemic Shame’ which is just this idea that as a society, we kind of hold individual people kind of morally responsible for solving systemic issues. So, that’s everything from people stressing over their recycling because of — or their compost heap — because of climate change and feeling kind of powerless in the face of such a huge crisis, as well as things like individual marginalized people like Autistics thinking that we need to solve the problem of our own oppression. So, I’m working on that book. It’ll probably be out in early 2024, it looks like. But I also just write about neurodiversity and autism and so many other things all the time on my Medium, which is at Devon Price — D-E-V-O-N-P-R-I-C-E — devonprice.medium.com. And those are all free to read. I just had a piece just come out; I do a little like autistic advice column. And so, I got a question from a young, early-20s autistic lesbian who’s wondering why nobody ever flirts with her, and how can she start, you know, going after people that she’s interested in. And so, I kind of give some little autistic advice for how to go about doing that. So, there’s lots of articles about all kinds of different stuff there that people can check out.
Meg:
I love that. We’ll link to all of your resources in the show notes, and I can’t wait to read your new book next year. Thank you so much for your time, Devon.
Dr. Devon:
Yeah, thank you for having me.
[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.
