Interview between Speaker 1 (Meg Ferrell) and Speaker 2 (Dr. Devon Price)
Episode 112: Five Core Skills to Help Your Autistic Clients to Unmask for Life
Meg:
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[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 Ferrell from learnplaythrive.com, broadcasting to you today from unceded Tsalagi territory.
Meg:
Welcome to Episode 112 with Dr. Devon Price. I grabbed Devon’s new book, ‘Unmasking for Life: The Autistic Person’s Guide to Connecting, Loving, and Living Authentically’. And I kid you not, I read it in one sitting. This book blends trauma work for Autistic people with other skills like learning about yourself and your preferences and separating those out from social norms, building resiliency, cultivating distress tolerance, and figuring out how to shape your life in every big and small way.
In this interview, Devon talks us through the impact of trauma on Autistic people, as well as the five core skills for unmasking. Dr. Devon Price is a social psychologist, clinical associate professor at Loyola University Chicago, and an Autistic person. Devon’s books include ‘Laziness Does Not Exist’, ‘Unlearning Shame’, ‘Unmasking Autism’, as well as this latest book, ‘Unmasking for Life’. Devon writes regularly at drdevonprice.substack.com and publishes video versions of all of his essays on YouTube at @drdevonprice. Here is the interview.
Hey, Devon. Welcome back to the podcast.
Dr. Devon:
Hi, Meg. Thank you for having me again. It’s good to be back.
Meg:
I just read your book and I’m really excited to talk to you. So, your new book is ‘Unmasking for Life: The Autistic Person’s Guide to Connecting, Loving, and Living Authentically’. All right. So, I wanna talk about everything in this book, but I wanna start with your personal story, which you share a little bit of in the opening chapter of your book. Can you tell us, as we start this conversation, just a little bit about how your own journey of learning you’re Autistic unfolded and how it led to writing this book?
Dr. Devon:
Yeah, so it followed a pretty severe period of burnout that I think could also classify as Autistic burnout. The overlap on those things are so similar, but I had finished graduate school in social psychology, which had included some clinical psychology classes and supposedly learning about autism, but just only the most basic kind of myths about autism, the most narrow stereotypes of it’s for white boys who are obsessed with trains, and who you can tell right away that they’re disabled in a particular way.
But so, I finished graduate school and I immediately got really sick. I was really having a hard time adjusting to figuring out what I was gonna do in the world as a person looking for a job and considering all of those big life questions of what’s next. Because I was 25 and I had been on a path up to that point that was very contained within academic institutions and following what everybody wanted me to do if you’re good at school. And I had reached this point where I was too sick to go out and try and be a tenure track professor, the thing everybody wanted me to do. And so, I was grappling with how am I gonna be a person in the world? And I was also really sick at the time, really bad fevers, and anemia, and a heart murmur for months and months.
And that summer, I was at a family vacation. And a cousin of mine who was 19 and was also struggling with the transition to college himself pulled me aside and said, “Hey, I’m getting assessed for autism. You know, you have this psychology background, what do you know about it?” And I was like, I really actually don’t know that much. Just here’s the few things I know. And he knew more about it than me already at that point. And he said to me, “Have you ever noticed that kind of everyone in our family seems mega Autistic?” Just the info dumping, the very narrow palette of foods people would eat, even the fact that we did the same vacation every year for 30 years with the exact same agenda every time, in a place that was like an hour away from our homes, you know, very contained and very Autistic.
And that really opened up the door for me into looking online, going to Autistic community spaces, Autistic self-advocacy spaces, and relearning the diversity of what autism really was and recognizing so much of myself and what I had always been struggling with socially in terms of sensory needs, being pissed off in public all the time, overwhelmed in public all the time. And that set into motion delving into the research and eventually saying, hey, there’s really a whole side to autism that at that point had not been spoken about very much.
Now, we’re in a completely different era where people are talking about masked autism, autism and trans people, women, people of color, et cetera. But at that time it was — we were just entering that era of thinking about those things. And so, for the next 10 years or so, I really just embarked on getting to know myself as an Autistic person, and getting to accept those things about me, and thinking about that same question of ‘What is my life going to look like if I am disabled?’ but with that new knowledge of, okay, there are certain things that maybe I can’t do or I need to do in a different way.
And I think most importantly, and this is really what the book is all about, the roadmap that we have been given for what your life is supposed to look like is based on this individualistic ableist norm that does not fit us. It doesn’t really fit anyone. And we have to think about constructing a life instead that goes outside of that and has different values behind it.
Meg:
Thank you so much for sharing. Yeah. Before you said ‘doesn’t fit anyone’, I was thinking like, who and what does this serve? I don’t think it’s helping any of us be our most whole selves. So, I wanna get into your content. Before that, just foundationally, I think most folks listening at this point have a really solid critique of how teaching Autistic people to mask in order to gain social acceptance is harmful. But just in case someone is totally new, can you explain what masking means, and some of the ways it can be harmful?
Dr. Devon:
Yeah. So, masking is taking steps to either hide or compensate for the fact that you have a disability to make up for the fact that the world is not accommodating you and not accepting to you. So, there’s a lot of camouflage that people do; faking facial expressions, literally hiding away from other people because if people see how I live day-to-day, they’re gonna see that my house and my life is a ‘wreck’, quote unquote, and that I’m not functioning.
Things like stitching together conversational cues from imitating TV or conversations that you’ve observed from other people. Things like drinking to get through the workday because you’re under fluorescent lights and you’re in a customer service role and it’s too painful to do that stuff sober. There’s all kinds of different strategies that Autistic people and other disabled people utilize to try and hold it together and to pass as at least more, let’s say, neuro-conforming — getting closer to the ideals that we’re all held to, that are really impossible for a lot of people.
And we know from just lots and lots of research at this point that people who mask have lower quality friendships, they feel less close to the people around them because they don’t feel safe being authentic, they have a heightened risk of suicide because they aren’t living a life that’s their own and it’s incredibly exhausting.
And there’s all kinds of other really negative consequences. Even things like being more susceptible to domestic abuse because, for a lot of people, masking means making yourself as agreeable as possible and getting in the way of other people as little as possible, and so that just makes you really, really easy to exploit.
Meg:
Thank you. Yeah, there’s really a lot on the line, and there’s also a lot of barriers. I think it’s a really interesting lens that you have as a social psychologist because the book isn’t just about teaching Autistic people self-advocacy skills and helping them make aligned and authentic choices, but it’s also — in the way I read it — about helping Autistic people access the capacity for these things through really well-tailored trauma therapy. Can you talk about trauma and how it shows up for many Autistic people?
Dr. Devon:
Yeah, so I am far from the first to say this. Many people have said that we’ve never seen a non-traumatized, Autistic person. But even if you just look at kind of the clinical criteria or how people talk about how Autistic people cope in any kind of clinical or therapeutic setting, you’re really talking about somebody who’s been told all their life that they are missing cues, that they are in the way. They’re being subjected to sensory overwhelm on an almost constant basis, which that cumulatively can itself be very traumatic, even if you’ve never been directly abused or anything as clear cut as that.
If you are being pushed into a physically uncomfortable environment and your body is in fight-or-flight mode literally every day that you’re at school, that is cumulatively gonna give you a major trauma response. And we see trauma all over both how easily activated and stressed Autistic people are in things like our lower life expectancy, and some of the health issues that we tend to develop later in life are very commonly associated with people who have enduring long-term trauma, and also in how we relate to people.
As I already mentioned, the domestic violence risk is a piece of it. Having no confidence in one’s own boundaries because you’ve never been allowed to have them. Having an orientation towards other people that is basically ‘I need to just make sure that nobody’s mad at me’ all the time, and providing no room to check in with yourself about whether you actually like, or respect, or feel safe around the person that you’re interacting with, right?
If your goal is only ‘I need to seem normal, I need to seem socially acceptable and conforming, and I need no one to yell at me or tell me I’m being weird’, that means that you don’t have any ability in that moment to touch in with your own value system beliefs to say ‘No’, to disagree, to stand up. And that’s something that’s really a common problem for a lot of Autistic folks.
So, in this book, I was really looking at what are some of the areas of life where even if an Autistic person is on board with the idea of wanting to accept themselves and unmask, really wanting to have a more Autistic life, what are some of the areas in life where we really, really struggle, and where do I get questions from people about these areas over and over again? And it’s things like, how do I make friends if my entire life, the only way I’ve socialized is just telling people what they wanna hear or making myself as small as possible? Or what does family or some kind of enduring, lifelong connection look like if the people that I’ve historically called my family are always telling me that I’m broken, and inappropriate, and they have all these disabilities in themselves that they’re not accepting? If I can’t work a full-time job, how am I going to live?
And all of these things, really start with pushing past some of the cloud of all of that trauma, hypervigilance, fear, self-loathing that comes from most Autistic people’s lived experience, and getting to check in and say, okay, instead of thinking about what I should be doing, what other people are thinking, or how they’re going to react, what is actually possible for me? What would I actually be able to admit that I need if I didn’t immediately have that meta-emotion of shame and needing to hide that is what you need or what you’re not capable of?
And so, every chapter, I think, pretty much starts with: Before we can even talk about what work might look like for you as an Autistic person who’s trying to unmask, let’s talk about how traumatized you have been by the expectation that you work. Or if you are trying to make friends or have a fulfilling, romantic or sexual life, let’s first talk about all the ways in which your boundaries have probably been violated, and you have been trained to violate your own boundaries because we have to get over that before you can live a life that’s actually yours.
Meg:
Thank you. What I hope this is bringing up for those of us who aren’t mental health providers is the importance of having folks on our Autistic clients teams who can do this work. ‘Cause as an OT or an SLP, we can be skilled at addressing routines, at addressing skills, at addressing the access, but we aren’t really trained to do trauma work in the same way as a mental health provider. We recently had Seth Rowles, an AuDHD trauma therapist and mental health provider, on our Patreon episodes talking about the work he does. And it was really, really different than the work I would do as an OT, and they dovetail together so well. So, I hope folks’ takeaway isn’t, “Oh, I’m an OT or an SLP and need to get trained as a trauma therapist,” ’cause some of these things are a little bit outside of our scope, but it’s that some of our clients need affirming and well-trained mental health providers on their team, too.
Dr. Devon:
Yeah, absolutely. And I think I would also say that if you are in those kinds of roles — OT, PT, things like that — it just helps to have a context for when you have a person you’re working with who’s having an absolute meltdown at what might feel to you like the smallest thing, right? I see this all the time. I’m taking singing lessons right now and anytime I’m bad at something — which is part of the process of learning — I have a complete meltdown. And thankfully, my singing instructor is someone who is very, you know, trauma informed and understands this stuff. And we’re friends outside of that context, so she can go, “Oh, I can see this is you still operating out of that lens that you think you have to be perfect at everything before you show it to people.”
This masking impulse of I would rehearse every conversation I was ever going to have before I had it, any skill that I was gonna have to show — in a classroom, or a job interview, or a social situation like dancing at a bar, I would practice that at home and make sure I had it perfect and looked normal, perfectly normal, before I would do it. And that’s something I think that kind of impulse comes up in a lot of traumatized Autistic people and neurodivergent people, if you’re working with them in any kind of occupational/physical therapy where there are things that might not feel natural to us in our bodies that we’ve been told that we’re doing wrong or that we are pathetic, childish, embarrassing, a failure for not being able to do. And no matter how supportive you’re being in that room, if you’re operating out of the standard timeline for how long it’s supposed to take someone to work on this, that’s gonna create some friction, I think, with your average traumatized neurodivergent client.
Because, like, you need to just do what’s safely within their challenge zone where they’re not completely freaking out and hating themselves and having this resurgence of shame. And then, you have to take a little step forward, take a step back and go back to a comfortable place. I’m sure, you know, like, me having been walked through that particular dance myself in physical therapy, in singing lessons, I know how delicate it is. And so, it is trauma work that you end up having to do. Even though it’s not your job to help somebody recover from the trauma, I think modifying your pace and understanding why things are so touchy for people in our community really means the world, and that is so healing, just to have that patience and flexibility.
Meg:
Thank you so much. Yeah. Modifying our pace, accepting and showing up with what’s happening, giving our clients control over the pacing and plenty of easily accessible ways to say, “No,” or, “Stop,” or, “Slow down,” or, “I don’t want to.” All of these are trauma-informed strategies for all of us. Thank you. Devon, in ‘Unmasking for Life’, you identify these five core skills for unmasking, and I wanna talk about each of them one at a time. Can you introduce us to the first skill, which is ‘Acceptance of change, loss and uncertainty’?
Dr. Devon:
Yes. So, acceptance of change, loss and uncertainty. This is something that Autistic people are said to struggle with a lot. And I do think it is true, even in the most, like, kind of neurotypical-minded, like, writing about autism. The idea that we struggle with change is said and I think it is true. But where it comes from, I think, is part of our processing style being very different from other people’s. We tend to be bottom-up processors, so we don’t process things in a really quick knee-jerk, “Oh, I recognize this situation and I know how to behave,” kind of way. We’re collecting all of the data and trying to put it together in an effortful way to get a sense of, okay, here’s the space, here’s the rules of the space, here’s how I do this task.
And because that is such an effortful process for us, that means every new or unfamiliar thing we do is more draining, and difficult, and even potentially threatening than a new or unfamiliar situation for somebody who is more of what we would call a top-down processor, somebody who can go with their gut-recognized patterns intuitively rather than effortfully. And so, I think that’s a piece of the puzzle that I think is just useful for people to know for context. But it is true that because every situation that’s unfamiliar is so draining for us to process, we really like routine. A lot of us, same foods, eating the same foods all of the time, knowing where things are, knowing what a particular piece of packaging looks like for a familiar grocery item, and so on.
And unfortunately, the fact is that the world is full of change. So, there is a little bit of a dialectic here where we wanna both honor the fact that it’s coming from a real need of accommodating a difference in how we process, that most of us don’t like change and disruption, and making as much room for that as possible; while also, as Autistic people who are working on a masking, building up the ability to try things that are new when those new things align with our goals for our life.
So, a big example of that in the book is making new friends. We know that a lot of Autistic people are very, very lonely. We struggle with social alienation, and struggle with not having faith in ourselves being able to socialize. So, one area where I talk a lot about acceptance of change is thinking about how people have come in and out of your life, and how that felt, and how difficult that is, but how you have been able to survive that. And also, making a plan for if you are struggling with friendships or social connections, introducing a little bit of unfamiliarity into your life on a regular basis so that you can get comfortable with it, you have faith in your own ability to handle it, it actually becomes a familiar thing once you start trying. “I’m gonna go to this meetup; I’m gonna go to this book club. I’m gonna do it at least three times and get a little bit used to that feeling of uncertainty.” And then, suddenly it isn’t unfamiliar anymore, and suddenly you are able to do that work of talking to new people and making some of those connections that might be really important to you.
And I use the example of friendship, but you can apply it to anything in the Autistic person’s life where they’re saying something is lacking here, and I really do want to be able to make a change in what I can do or widen my zone of what I can handle in the world, but I need to do it in a way that feels safe to me, rather than just being forced to deal with all this unpredictability. That’s really exhausting to process.
Meg:
You have this chart in the book, sort of a flow chart, showing movement between the steps that I like so much. I have it in front of me. It says, “Try something new. Acknowledge discomfort. Stay in this situation anyway. Become more familiar. Build life experience. Grow more confident in your ability to handle change.” I love that. And because of the conversation we’ve been having, I was just reminded as I read that, to have a trauma lens on this, just like anything else, right? I think as an OT, it could be easy to see this as a sequential process that we should be moving folks through and miss the part that someone’s trauma might get triggered — is likely to get triggered — as they move through this process. And they need resources and space for that as well, right?
Dr. Devon:
Absolutely. And really going at a really slow pace. You really might be just sitting in that ‘I’m uncomfortable, but I’m still gonna try doing this thing every once in a while’ place. Well, that’s the work of life in general, right? You’re always going back to that place. But for example, with the friendship piece, I really, in that chapter, suggest to people at first just start with just researching events in your area, or events online if you are immunocompromised and you can’t leave the house, that’s also completely legitimate. Just start by getting on Eventbrite, getting on Meetup, getting on local groups, and just finding things that you might wanna try to do and putting them into your calendar as like an offering to yourself of a possibility, a social possibility.
And that takes work. That is scary for a lot of people. And so, it’s okay if the first thing that you do for a really long time is just set aside an hour per week, an hour every two weeks, whatever your pace is to look at and imagine for yourself going out into new spaces and meeting new people. That is still doing psychological work of preparing yourself for the thing. And we know that, especially in Autistic people, we do a lot of mental preparation for something before we try it. And sometimes, how we get used to something looks differently from how other people get used to something.
Sometimes we see this even with like Autistic people not speaking for a long time. Sometimes, young Autistic kids will not speak for 10 years and then all of a sudden they will be mentally prepared and decide that they personally want to speak and they can do it. And the same thing is true with a lot of different skills that some of us might want to acquire if we want to acquire it, right? And moving slowly through that and knowing that even just thinking about it, planning for it, talking around it is part of the work, I think, is also really helpful for providers and professionals to know.
Meg:
Thank you. Thank you. I love this shift in thinking of thinking about it as perhaps the first step. Your next core skill is ‘Engaging conflict, discussion, and disagreement’. Talk to us about that please.
Dr. Devon:
Yes, so this is a big trauma one. A lot of Autistic people, we are famously said to be bad at social initiation. And, again, there’s a root in truth there. Some of that comes down to reading social cues differently than other people, reading emotions on other people differently. And so, not trusting our own ability to say, is this an invitation to walk up to someone? Is this person willing to have a conversation? So, that’s one thing we struggle with. But also, more generally, we really struggle with engaging with other people in any really assertive way that could introduce, again, that friction between us and another person.
So, things like expressing disagreement, asking for something, planning an event, anything that really is demanding attention and time from another person and potentially saying ‘I am not a perfect mirror of exactly what you want me to be’, because that’s a coping strategy for a lot of us. A lot of us learn to mask by just mirroring and imitating the people around us, and making ourselves as small as possible because then we won’t be singled out. And so, and that opens us up for so much mistreatment and not getting our needs met.
So, the skill of engagement is all about learning to be able to actually say, “I’m uncomfortable. Can we lower the thermostat in this room? Hey, I’ve seen you at this book club and we’ve had some good conversations. Would you like to get coffee sometime?” Being in a relationship and saying, “This setup of domestic duty division isn’t working for me. Can we please sit down and redraw how we handle chores?” All of these things are the skill of engagement because you are introducing yourself — warts and all, needs and all, inconvenience and all — into the interpersonal relationship and giving the other person an opportunity to actually engage back with you.
And it’s, again, very frightening. There’s a very high bar to clear for a lot of Autistic people, it often feels like. And so, one of the ways that I encourage people to start warming up that skill is to think about ways that you can bring something up to someone that aren’t that bold, assertive, ‘I’m gonna walk right up to them and say the thing perfectly and make them listen to me’, because that’s not always how it works. Even if it’s something like sending a text weeks after the fact and telling a friend, “Hey. This thing you did rubbed me the wrong way. Can we please handle it differently in the future?” That is a fabulous starting place because you are expressing your needs and you are opening the conversation.
It is okay if it happens via writing, via text, via email. It’s okay if you do it on your own timeline and in your own Autistic way. And maybe over time that walking up to someone assertively will get easier. But the most important thing is to just express the need in some way, honor yourself in that way. And for a lot of people, that begins with even just noticing that you are a different person from the people around you, and that you can want and need and feel different things.
Meg:
Thank you. You have these steps listed out in your book, moving from noticing what’s wrong or lacking, to naming what you need, identifying conflicting perspectives, and asking questions about others’ perspectives. And in the asking questions section you say, “Masked Autistics are frequently discouraged from asking questions because many allistics communicate in covert symbolic ways and expect us to do the same. But you deserve to understand the situation you are in.” I thought that was very poignant description of allistic communication there as something we don’t usually name, but is a real barrier.
Dr. Devon:
Yeah. There is so much that’s left unsaid. And I think even if you are afraid to assert yourself in a really combative feeling way of expressing disagreement and stuff like that, you can start by saying things like, “What did you mean by that?” or, “Can you please give me more information?”, “Can you please explain this again?”, “How does this thing work?” Or even just as a way of expressing enthusiasm about things, engage with other people by just saying like, “Oh, that’s so interesting what you’re doing. Can you tell me about how to knit or like how you got into playing this instrument?” Like, that is also an engagement skill.
And so, it’s not all just guns blazing, starting conflicts with people, too. It’s also just learning to say, oh, I am a participant in the world and I can customize my life experience, and go after the things that interest me. And that means I have the power to actually start conversations with people about stuff that interests me. And the world feels a lot less menacing, and you feel a lot more powerful in yourself once you start to even do just a little bit of that.
Meg:
Oh, I love that; reclaiming of agency. And this next one I really like. It’s ‘Transgression of rules, demands and social expectations’. Okay, I’m gonna quote you. You say in the book, “When we collectively refuse to follow unjust rules, our revolutionary potential is nearly limitless and we help free other non-Autistic people to live as they desire to as well. But standing firm in our uniqueness is a skill that must be developed as many of us have winnowed away our capacity to be socially challenging because we fear the consequences of being too odd. This is where the skill of transgression comes in.” Can you talk about this?
Dr. Devon:
Yeah. Autistic people, we are weirdos, and I mean that in the most complimentary sense.
We are neuro non-conforming. We have interests that are different from what people expect for our backgrounds, our ages. We are more emotional than some people expect us to be; sometimes we are less emotionally expressive than people expect us to be. And we get all this pressure to neuro conform, right, to just blend in and mimic people. And when we step out of line, especially when we’re young and we don’t have any power in our own lives because children are so disenfranchised, we get punished for every little thing that we do that strikes the adults around us or even the other kids around us as just slightly unusual, even if it’s completely benign and non-distracting to anyone.
And so, we lose that beautiful ability to express our uniqueness and our unique perspective on the world, but we can get it back. And so, the skill of transgression is all about being able to notice these are kind of puppet strings that are pulling at all of us, right? Social norms. Don’t do this. Don’t say that. Don’t acknowledge this awkward thing that just happened. In the book, I talk about the example of it being a social norm in most of America, at least if that — if you see a parent mistreating their child, you’re supposed to look the other way and not say something, right? Just as an example of a really damaging norm. But most people follow that norm. They look the other way, and they stay polite.
So, the skill of transgression would say, you can notice that this is happening again. You can articulate to yourself: This is a norm. Maybe I’ve been taught or even told this in the past that I am not supposed to intervene or say anything or stare. And then, asking yourself: Where did this norm come from? And who does this norm serve? Do I actually agree with it? Even if most of society says that this is the right thing to do, do I actually agree with that? And if I don’t, what do I wanna do instead? What am I safe and able to do instead?
And sometimes you’re not gonna be able to jump in and save the day. That’s not how these kinds of scenarios always work. But you can say to yourself: This isn’t fair. I’m not gonna laugh at this racist joke. I’m not going to look away while this wrong thing is happening. I’m not gonna laugh it off. And maybe I am gonna say something, maybe I’m gonna do something; it depends on the situation. But at the very least, I am able to separate myself from what society says is correct.
And then, that means I have the freedom to make choices. And that can be things like: I’m never going to work a full-time job. And I’m going to decide that as much as society says a person’s value is wrapped up in that, I don’t believe that, and I’m gonna figure out my own ways to make a meaningful life. It can be things like being in a married, monogamous relationship and having children that I physically gestate is not important to me. My whole family expects that from me, but I don’t wanna do that. What do I wanna do? Do I wanna be polyamorous? Am I asexual and aromantic, and I don’t wanna have those kinds of connections? Does being involved in children’s lives look different for me in some way? Do I wanna be more of an auntie or a foster parent type figure? It’s deciding that you get to decide and stepping aside from what everyone around you seems to think is right, and that ability to question is really where it starts.
Meg:
Thank you. Yeah. And some of your other examples in the book are very seemingly small, but important and personal, right? I’m going to dress this way ’cause this is how I feel comfortable. I’m going to stim in this way because that’s how I regulate. I’m gonna sit in this way ’cause why does somebody else get to decide and control how I sit? You have so many good examples there. I wanna move to your last one, which is ‘Tolerating distress, disagreement, and being disliked’.
I’m gonna quote you again, Devon, because you opened this chapter with this incredibly compelling paragraph: “Masking turns Autistic people into inveterate people pleasers who scan every social interaction meticulously for any sign of looming social threat. Some of this hypervigilance is born out of the trauma of repeated social rejections. Many Autistics who describe themselves as empaths or highly sensitive persons believe they have this almost magical seeming intuition for how other people are feeling and what they might need. In reality, we’ve just taken on the cognitive load of thinking about everybody else’s motivations long before we even consider our own. Though it’s sometimes framed as an Autistic superpower, it’s really an immense burden that can lead us to having unbalanced, exploitative relationships and no true sense of self. It also conditions us to view others’ negative emotions as our personal failure, even though varied reactions from other people are inevitable in life and are neither good nor bad.”
This was a really big reframing for me of empathy in Autistic folks as sometimes maybe a perpetual fawn response or a conditioned people pleasing. Can you talk about distress, disagreement, and being disliked?
Dr. Devon:
Yeah. Yeah. I love the way that you just described that because I think we talk a lot about empathy and Autistic people a lot of times in this way that can be a little bit trying to, like, redeem or make respectable Autistic people by making us sound more like neurotypicals. Like, a lot of people, even in our community will say, “Oh, Autistic people don’t lack empathy. They actually have too much empathy. They care about people too much.” And for some people, that names their experience and how it feels pretty well. But where it comes from, as you just said, is this fawning response and this hypervigilance where we are not okay unless everyone around us is placated.
So, we are tuning in to others’ emotions and social norms and expectations to such a high degree, again, that we don’t exist, basically. Our feelings are not in the room anymore. And sometimes, quite literally, we cannot tell what we are feeling when there are other people in the room because we’re taking up so much of their feedback or what we think is their feedback, trying to guess at it. And so, we have to get past that, learn to let go, learn to close that channel sometimes.
So, whereas the skills of engagement and transgression are a little bit more in your face, they’re a little bit ‘I’m gonna stim around people even if they don’t like it’, and engagement is ‘I’m gonna say the thing, even if it’s unpopular’, this skill is a little bit more about just letting go of that constant worrying about other people’s perspectives and understanding that sometimes people are going to dislike me even if I engage with them in this perfect assertive way, even if I articulate what my values are and transgress norms perfectly, sometimes people are going to just not like you, and sometimes people are going to be wrong about you, and you can’t manage that. You can’t self-advocacy your way into making them treat you better. All you can do is disengage.
And so, that can be things like deciding my family doesn’t approve of me. I’ve tried explaining to them. I’ve tried to reach them. They’ve never shown really the ability to listen to me, so I am gonna modify that relationship in some way so that it hurts me less and gives them less access to me. Doesn’t have to mean cutting them off entirely, but deciding for yourself, how much information can I trust them with? How much time do I actually want to spend around them? Things like that. It can be being okay not being the popular one in a situation. Coming to terms with the fact that there might be a lot of people in this world who have values that are completely different from mine, values that are, let’s say, very racist or transphobic, and saying, I actually don’t want the approval of people who are completely reprehensible to me in terms of their values. And so, it’s okay for me to be a weirdo and a freak to them.
Learning to tolerate that discomfort is about not feeling like your world is gonna end every single time somebody’s looking at you askance or is wrong about you. Or even if you feel like your world is gonna end, doing the thing anyway, because it’s about widening that window of sitting with that feeling and saying, okay, that feeling comes from a place again of trauma. It’s my body trying to tell me ‘Oh, if you make the wrong step, you could be socially disposed of’. But then, telling yourself: I’m safe now. I do have people around me who care about me, who are values-aligned, and so it is okay that some people hate me. It’s actually completely fine. That might even be the right outcome, sometimes. That means you’re really being yourself if some people hate you.
Meg:
Thank you. Such an important and subtle skill. And in the book you talk about how folks can learn to separate their perspective from someone else’s, disregard opinions that they don’t respect, check in with their own values and feelings, and then self-soothe and regulate their own anxiety. I love those steps. Finally, can you talk to us about ‘Creating accommodations, relationship structures, and ways of living’? And I’ll just name, this is a really long chapter in the book and it’s really nuanced and meaningful. So, if folks wanna go deep onto this one, they really should read the book. But just for a broad overview of this, for us.
Dr. Devon:
Yeah, so I think a lot of the self-advocacy skills that we’ve talked about so far are about saying ‘No’ in a lot of different ways, letting go of a lot of norms; whereas the final skill creation is a little bit more positive and empowering. It’s about utilizing how divergently we see the world, and how unique our needs and skill sets are, and what we’re bringing to the table to invent our own solutions to problems and lacks in our lives. Of course, it’s terrible that we have to do a lot of this on our own because there is such a lack of resources and supports for neurodivergent people. However, we also, especially collectively, have the power to really envision different ways of organizing and leading our lives.
So, to go back to that family example that I just talked about, if you have decided for yourself, “I am going to transgress expectations. I’m not gonna get married. I don’t wanna have kids in the nuclear family sense,” then you get to write for yourself, what does a family mean to me? And in the book for that chapter, I really go through here are all of the things that I could think of that people typically mean when they say ‘family’. Things like sharing holiday traditions, having some plan for elder care as you age, and ways of sharing childcare, conversations about sharing healthcare, or passing on resources and money when you die, being someone that a person can always call. These are all a bunch of different things that kind of get thrown under the bucket of ‘family’.
And you can really sit down and ask for yourself, okay, which of these are really important to me, and which ones do I have figured out, and which ones don’t I? And who do I want in my life? Where I can share those kinds of connections and form my own family thing? And maybe ‘family’ isn’t even the word that you wanna use at all ’cause it has too much baggage. We can create our own ways of living. And I profile in the book Autistic people who have stitched together a life that because they can’t work, they have a combination of maybe they do some sex work or freelance, maybe they do — they’re on government benefits that they can get. Maybe they’re doing childcare or petcare for loved ones and they’re living communally in some kind of way that helps keep their kind of footprint financially smaller.
Again, it’s not fair that we have to do this stuff, but it is possible for us to envision a different way of organizing the world. And though it might start really small with us just making these decisions for our own personal lives of, like, how am I gonna survive? Who do I want around me? That also opens up the door for saying the whole way that we have structured this world is open to debate. We don’t need to be as car-reliant as we are. We don’t need to be defining human life by working a full-time job, right?
We can think about rearing and educating children outside of the institutions that we typically do in the United States. Like, the more that we push up against these norms and build our own networks of support that are our more autonomous, the more we’re able to reshape society instead of being controlled by these institutions and legal frameworks and stuff. And so, there’s really a lot of, on the macro scale, a lot of revolutionary potential there. Though kind of my focus in the book is just saying, okay, like, what does a life look like for you that you’re gonna actually survive and enjoy? Because there are Autistic people doing that and you can do it. You just need to find your people and find yourself.
Meg:
Yes. Thank you. I love tracing this from small and slow to the big picture of someone’s life. So, your book, ‘Unmasking for Life’ has a lot of exercises and activities and goes so much more into depth in to everything than we could possibly do in this podcast interview. And I really do hope folks will go out and read it. And many of the providers who listen to this podcast work with Autistic children. Can you talk about how these ideas apply in childhood, not just adulthood?
Dr. Devon:
Yeah, I think it’s all about throwing away your assumptions about what the end goal for that child’s life is. Again, that roadmap of they need to be able to sit in a classroom for eight-hours per day, because then they need to go to college, because they need to get a job. What does a meaningful life look like for a disabled person? And obviously, if you’re working with disabled populations, you’ve already brushed up against that and question a lot of those things. But I think we always still have more work to do in terms of our priorities and really orienting back towards how can I empower this child to say what works for them, how they feel in their body, and what’s important to them?
They might not be in a place yet where they can design the roadmap for their whole life by any means. And of course, there is a role of us as safe adults in their life to help give them tools and help them build certain resiliences. But also, I think we still almost always have that baggage of it’s better for the child to talk than to not talk. It’s better for the child to be able to hold a cup on their own than to not. It’s better for them to be able to sit through these situations that we typically subject children to in our current educational institutions, even though there’s lots of other ways to raise kids, to educate kids, other than making them sit at a desk for, again, eight hours per day.
So, really just keying into when you have those reactions in yourself. Just noticing those biases of, I’m trying to make this kid fit the world rather than empowering this kid to say, “This is what I need out of the world, and this is who I am.” We do so much societally to take power away from children, power over their bodies, power over their opinions and beliefs. Anything you can do to key back into making them confident in their own voice and feeling able to do what is important for them to do, whatever skills that they wanna develop, I think that is so, so important and lasting. I think it makes us a less conformist society, a less authoritarian society, person by person when we do that stuff.
So, really meeting the kid where they’re at and treating them as a whole person. They’re not a person in the making. They are a person now, and what does that person value? And that doesn’t mean throwing away your responsibility to them or that there are things that they can’t do and don’t know, but seeing them as complete. I think that is the project of disabled liberation in general, right? A person is a person no matter what they’re capable of and where they’re at. And that starts the second you meet that person when they enter into the world.
Meg:
Thank you. Yeah, I’ve said this before on the podcast, but so often we tell kids, “Perform, adapt, perform, perform,” their whole childhood, and then they become adults. And we say, “Self-advocate!” and they can’t even feel into themselves or know what they would potentially advocate for. And this is very radically different from that. And if folks were listening to you talk about how we envision a disabled child’s future, I wanna redirect you back to the episode ‘Reclaiming Disabled Kids’ Futures: A Planning and Visioning Process for Every Provider’ with Joyner Emerick. If you missed that, it’s a really good conversation to go back to for thinking about how we envision and plan for futures for our disabled clients. Devon, before we wrap up, is there anything you want to add or bring us back to?
Dr. Devon:
Oh, goodness. It’s all about agency for me, and I think it starts with ourselves, too. Even if you’re just in the provider side of things, like, getting better for yourself at stepping outside of society’s lines and saying, “This policy doesn’t seem fair. This aspect of how the world works is oppressive. I don’t agree with this thing. I don’t like this thing.” The more we can just get into that muck in ourselves and with each other, the more robust our communities are and the stronger we are, and the more likely we are to be comfortable when a person around us says, “I need this thing. I disagree with you. I’m gonna do things my own way.” We need to all do things our own way as much as we can, and that actually collectively helps empower all of us to be freer together, I think.
Meg:
I love this. Just one more way we can all bring our whole humanity into the room and into our communities as well, just harping back to our recent episode with Chenai Mupotsa-Russell, talking about showing up with our whole humanity. Thank you, Devon. Where can we find you and your work online, or in print?
Dr. Devon:
Yeah. Yeah. So, my books are everywhere books are sold or pirated from, get them however you want them. And I write regularly about a bunch of different stuff — neurodiversity, queer topics, culture, et cetera — at drdevonprice.substack.com, and that is free. And also, on YouTube I do video versions of my essays, so it’s @drdevonprice on YouTube.
Meg:
Thank you. I’ll link to everything in the show notes. Thank you so much.
Dr. Devon:
Yeah. Thank you for having me. This was great.
[Ending music]
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