November 19, 2024 • 36 mins
Dr. Devon Price talks with NK about 2022’s Unmasking Autism: Discovering the New Faces of Neurodiversity. Masking is a coping strategy, a way that neurodivergent people (especially autistic people) learn to fit into neurotypical society, with uneven success. But like many coping strategies, masking can do more harm than good in the long run – and the act of unmasking is a small act of resistance against conformity.
This episode also includes some clips from Autistic Masking & Unmasking, The 4 Types of Autistic Masking, Twice as Hard: Masking Neurodiversity as Black Women, Discover your neurodivergent masks, and Black and Autistic! The Struggle is Real…
Plus Devon Price recommends Amythest Schaber’s Ask An Autistic series, The Secret Life of a Black Aspie: A Memoir by Anand Prahlad, and Uncomfortable Labels: My Life as a Gay Autistic Trans Woman by Laura Kate Dale.
See omnystudio.com/listener for privacy information.
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Episode Transcript
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Speaker 1 (00:00):
Hey, it's enkay Baska. Case gets into some heavy topics
about mental health. But keep in mind that I'm not
a mental health professional. So in the description of this
and every episode, I'll leave you a list of relevant
resources and links to the things I'm reading, And while
you're listening, take care that you got a little over
(00:44):
a year ago, I finally left Los Angeles, where I
had been living for fifteen years. I now live in
Mexico City, and for me, the paradox being conspicuously foreign
is that sometimes I actually feel like I'm invisible, or
(01:07):
like I have the power to be invisible when I
want to. It's sort of easy to hide in plain sight,
and I actually like that feeling. At least now there's
a reason that I feel out of sync with the
cultural norms or social expectations of a particular space. But
at the same time, I am making a conscious choice
(01:27):
to assimilate. I want to be part of the culture.
It's one of the reasons I moved here, and so
when I'm talking to other people who aren't from here
and who share that goal, it's normal for us to
talk about assimilating as a deliberate process. I've learned that
it takes more than just being here to learn the
social norms. It does take intention. In my opinion, it
(01:48):
requires study. It requires data and preparation, observation, diligent note taking,
and practice. And I know that because even when I'm
at home in the US, socializing, the mere human act
of being perceived, is something I have to think about
and prepare.
Speaker 2 (02:07):
For a lot. I've been writing down rules for myself,
do this, don't do this, rules for socializing based on
trial and error for most of my adult life, because
there are lots of ways.
Speaker 1 (02:21):
To learn that you aren't okay, that you aren't acceptable,
and then you learn that there are lots of ways
to be punished in the interest of conformity. For a
lot of my life, I've needed a strategy for surviving whiteness. Whiteness,
white people, white teachers, white workplaces, white shit, you name it.
And the strategy I learned for navigating whiteness is what
I would call respectability. Because of the politics of respectability,
(02:45):
I internalize the expectation that it's my responsibility to uphold
an exemplary standard of excellence, and that I should be
always conscious not to bring embarrassment on myself or other
people who look like me, and that instead my behavior
should always reflect positively on the community that I belonged to,
and that is something that I later had to unlearn,
(03:06):
but I recognize that at its core, respectability politics is
a kind of shield against dehumanization. That's why I called
it a strategy. When we conform, even when we aren't
doing it consciously, we're responding to a human need for
inclusion and safety, for belonging in community. And sometimes that
need for safety can feel at odds with the other
(03:28):
very real need for authentic expression. And for me, the
way that being my authentic self seemed to threaten an
always precarious sense of belonging produced in me a primal fear,
a fear that persists to this day as social anxiety
just won't quit, which is why the concept of masking
and the invitation to unmask unlocked something inside of me.
Speaker 3 (03:53):
Hey YouTube, it's Kofi and I'm back with another video
about being black and autistic.
Speaker 4 (04:00):
I want to talk to you about masking.
Speaker 5 (04:02):
So how do you know if you're masking or not.
Let's talk like an autistic But then I'm going out
into the world and pretending I'm not autistic.
Speaker 4 (04:09):
Because as an autistic adhder of the journey to unmasking
is certainly every day.
Speaker 5 (04:14):
It's like a really difficult concept to get your head around.
It's really abstract. Do I feel uncomfortable in social situations?
Speaker 4 (04:22):
If you've been diagnosed with autism or ADHD?
Speaker 5 (04:25):
Do I feel dreamed after a social situation and you may.
Speaker 4 (04:28):
Have engaged in a commonly used technique of hiding your
true self in order to fit in and feel excessive.
Speaker 5 (04:34):
It is a very real thing, and it's even mentioned
in the DSM five diagnostic criteria. Do I avoid social situations?
Speaker 3 (04:41):
The standards are just tightened when you're a black person.
The way we navigate society, we already have to mask.
We already have to think about the way we're being
perceived by other people.
Speaker 5 (04:52):
An autistic person who is more different than the average
person because may need to put more effort into this
mask in order to ma.
Speaker 3 (05:00):
Our parents were like, okay, wait, now you got to
be twice as hard, so we can't be having none
of that.
Speaker 1 (05:05):
But it makes me wonder how many of us go
undiagnosed at you right.
Speaker 3 (05:09):
Because trying to escape the stereotypes constantly and trying to
understand what the world expects from you constantly as a
black person can be very confusing.
Speaker 1 (05:20):
Yeah, you're speaking to conformity, right, the fact that we
need to conform in so many ways.
Speaker 6 (05:26):
And show up in the world in a particular way.
Speaker 4 (05:29):
You know.
Speaker 6 (05:30):
We talked about this in another.
Speaker 1 (05:31):
The act of masking is unconscious social performance, something that
neurodiversion and in particular people on the autism spectrum learn
to do in order to fit into neurotypical society.
Speaker 7 (05:42):
A lot of times autistic people mask without even realizing
they're doing it, because if you don't know that you're autistic,
all that you know is people are telling you you're
overreacting to things all of the time. And so you
learn to just not trust your feelings or your needs
and to become very compliant or agreeable or to take
on kind of a class clown persona to find some
(06:02):
way to kind of hide what you're finding difficult in life.
Speaker 1 (06:05):
That's Doctor Devin Price a writer, social psychologist, and author
focusing on autism, and he's also an autistic person. He's
the author of Laziness Does Not Exist, and this year
he also published a Learning Shame, How rejecting self blame
culture gives us real power. You can also follow devon
On and Stuff for some spicy contributions to the neurodiversity discourse.
(06:25):
But the work doctor Devin Price might most be known
for is twenty twenty two's Unmasking Autism, which is a
really helpful explanation of what masking is and it's also
a call to action. It's about the ways that for
people with overlapping marginalized identities, masking is a strategy for survival,
but like many other survival strategies and trauma responses, it's
(06:45):
a coping mechanism that over time, often causes more harm
than good in the long run. So the act of
unmasking is an act of self love. It's also an
active disobedience. One of my biggest takeaways from reading the
book was in the world words of the poet Mary Oliver,
you do not have to be good. This is basket case.
(07:06):
I'm nka with your weekly reminder that bad bitches have anxiety.
And my conversation with doctor Devin Price is happening after
this break.
Speaker 2 (07:16):
Person's gonna want person's gonna walk wah, Person's gonna want.
Speaker 5 (07:21):
Me when I have to president anxiety?
Speaker 6 (07:26):
M M M m mmmm, we are recording.
Speaker 1 (07:40):
Yeah, no problem, so I'll begin. I'll just restate my
question now that we are actually recording. So it's by
the way, I forgot to record the first five minutes
of my conversation with Devin, during which he told me
I could call him Devon, which is why we're just
getting into it. Here's the interview. Okay, So when I
first learned about masking, I definitely went down a YouTube
(08:00):
rabbit hole trying to understand what people were talking about,
what the autistic and nerd diversion people that I follow
on Twitter were describing. There was a lot of discussion
about unmasking, not a lot of explanation of what the
mask experience actually was, and so I think reading Unmasking
Autism was definitely one of the first times that I
(08:21):
encountered a really coherent explanation of the process of masking
or its component parts or its component actions in a
way that made it really easy to understand, like the
ways in which autistic people are disabled on a daily basis,
or one of the ways in which autistic people can
be disabled. And also it's written in a way that
is really relatable. So I wonder if you could just
(08:43):
start by defining what people are talking about, what people
mean when they say that they're masking.
Speaker 7 (08:49):
Yeah, so masking is taking steps to either camouflage your
disability or to compensate for what's difficult for you as
a disabled person so that people don't detect you as disabled.
And lots of autistic people do it, especially autistic women
and people of color and people in poverty and other
marginalized groups. They do it because there is almost no
(09:10):
social permission for them to find something difficult, to ask
for the lights to be dimmed, or to ask to
leave the classroom because it's way too noisy and it's
making them feel fight or flight mode roaring inside of
their bodies, and so instead they have to learn to
kind of grin and bear it and act like they're
not in pain all of the time.
Speaker 1 (09:29):
How is masking different than code switching?
Speaker 7 (09:33):
Yeah, I definitely thought about code switching as a parallel
in some ways to masking. But when you really talk
to people of color about code switching, some people consider
it this compulsory thing that's really damaging for them to
have to do and really exhausting to have to do.
But other people talk about it as a form of
cultural fluency that they really value and are proud of
(09:53):
about themselves. I would say that masking is more like
being closeted as a queer person, where you're trying to
suppress all of your tells of who you are, and
that is pretty innately damaging. I think for people, code
switching absolutely can be as well. But I just from
the outside, I just don't want to paint that with
too broad of a brushstroke and say that it's inherently negative,
(10:15):
because I've heard so many people say, look, this is
almost a cultural superpower that we've had to develop. Another
way to kind of articulate it is like when people
are code switching, usually they're very conscious that they're doing it,
whereas if you're closeted or you're masking, you aren't even
aware of yourself of who you would like to be.
So that kind of state of alienation is It means
(10:35):
that you can't consciously make choices about do I need
to do this right now to be safe? Am I
okay with doing this? What's the cost of doing this?
You're just like bearing the toll of it all the
time without even knowing that you're doing it.
Speaker 1 (10:46):
Yeah, totally. Can you say more about the toll that.
Speaker 7 (10:49):
It takes, Just that we see that masking is really
strongly linked in autistic people to a heightened risk of
self harm, substance addiction. There's a really prone denounced risk
of suicide. Ideation and attempts for people who mask depression
and anxiety obviously undergirding that as well. That it's good
(11:09):
for people to know that it's not as simple as
just plastering a smile on your face when you go
into work every morning, though that itself can be super
exhausting and really take a toll. It's this really existential
disconnection between who you are and the person you are
demanded to be, and that takes a really heavy toll.
And again that everybody has to do it. Everybody is
(11:31):
pushed to hide parts of themselves under the economic system
that we are all living in, and so everybody benefits
when we unmask a little bit more, when we can
be a little bit messier and more vulnerable and not
have to rain in everything about us that makes us
seem strange or non compliant or whatever else.
Speaker 1 (11:49):
Can you talk about some of the reasons that you
found it necessary to write this book.
Speaker 7 (11:54):
I wrote Unmasking Autism because there was a really large
gap in the literature on autism and in the public
consciousness on it. I was in the right position at
the right time, in that I had some psychological expertise
and research expertise, and I was grappling with finding out
I was autistic in my late twenties, and I wrote
(12:16):
the book that I wished had existed at that time
in my life. Even though I had a PhD in
psychology when I found out I was autistic, I still
knew very, very little about what autism really was. I
really didn't know how all the different ways that sensory
issues could present. I didn't know that much about how
masking could really psychologically tax you. I hadn't met a
(12:38):
whole diverse array of different autistic people who like me,
were queer and were marginalized and struggling with all of
these things. And so slowly digesting these facts and meeting
people out in the autistic community and realizing how much
even psychological experts were missing about the story of what
autism is really put me in a position to say, Okay,
(13:00):
somebody needs to fix this.
Speaker 1 (13:02):
So just to clarify it, it's not that your particular
academic path didn't include studying autism. It's just that what
you studied or what you were taught wasn't comprehensive.
Speaker 7 (13:10):
What I was taught about autism in graduate school was
the same tired old stereotypes that people have been believing
for decades. So things like autistic people have no desire
to have friends, they don't ever experience any compassion or
empathy for other people. Like that kind of stuff that
might seem even now a few years out, just so
(13:31):
blatantly wrong on its face, that was still the common
knowledge even for a lot of professionals in like twenty fourteen,
twenty thirteen, when I was in school, And so with
Unmasking Autism, I was really seeking to bring together all
of the research and personal narratives of all of the
people that don't meet that stereotype of how autism looks.
People of color, trans people, women, older adults, all kinds
(13:55):
of groups that have eluded diagnosis, not because their autism
is milder, but because society doesn't take care of them.
To the same extent, everyone was hyper aware of a
stereotypical portrait of autism, the type of autism that gets
diagnosed young in typically white cisgender boys with kind of
stereotypically masculine interests, which is really limiting and it excludes
(14:20):
a majority of autistic people. And there was also some
scholarship out there talking about this idea of quote unquote
female autism, which was this idea that autism in girls
is quieter and subtler, and that they're more socially appropriate
for some reason, and the literature didn't really actually bear
(14:41):
that out. There wasn't any kind of biological reason why
girls or other groups such as people of color were
getting overlooked and getting diagnosed at later ages. It was
really just because they're suffering wasn't taken as seriously as
that of white cisgender boys. There's a lot of autistic
people online who were finding each other and educating each
(15:02):
other about what we need and what works for us,
but none of that work is really getting amplified or
being treated as legitimate. And so I was really lucky
that I could kind of trade in my official psychological
credentials as a way of uplifting all of this great
work that autistic self advocates were already doing and saying, hey,
we have a pretty good sense of who we are
(15:23):
when you really look at all of our experiences together,
and who we are has been really overlooked by the
science up to this point.
Speaker 1 (15:30):
Right, Well, what does the book do and what doesn't
it do? And I think contained in that question is
also like who is it speaking to or about? Who
is it speaking less about?
Speaker 7 (15:39):
Yeah, so the book is mostly speaking to people who
find out that they're autistic relatively later in life. People
who they find out they're autistic after their child was diagnosed,
or they find out that they were autistic after they
had a major burnout at work, because they've been masking
their autism. They've been hiding their disability for decades of
their life, and they've often had to do that masking
(16:00):
because of things like racism or because of things like
sexism that really give you a lot less latitude to
struggle if you are not a white cisgender guy. And
so those are the people that are really centered in
the book. I've gotten some criticisms sometimes for not talking
about white men enough in the book, which is funny.
Being the author of the book and being a white man,
(16:22):
I would think that there's already plenty of me in there,
But that's definitely who the book is for.
Speaker 1 (16:27):
After the break, Devin and I get into the politics
of neurodiversity. So I think I mentioned, you know, I
heard the term masking for the first time in the
context of autism pretty recently, like only in the last
three or four years. Maybe it kind of bubbled up
into my consciousness through online discourse about the decision to unmask.
(16:51):
But when did you first encounter masking as a phenomenon
or experience that is unique to autistic people that people
were having or talking about.
Speaker 7 (17:03):
Yeah, I've tried to track down the origins of masking
as a term related to autism, and it seems to
originate on some forums in like the early twenty tens.
So it existed from autistic people talking amongst themselves about
the steps they take to survive or the alien nation
that they felt before they knew they were autistic. And
then it was later that the research literature caught on
(17:25):
and started studying, Okay, what strategies do autistic people use
to mask? What does that look like, what's the toll
of masking and all of those things. But there really
is a much more robust literature, if you will, just
in autistic people's vlogs and blogs and how they talk
about this stuff in support groups and things like that.
(17:47):
The term itself originated on forums in the late aughts
early twenty tens. That is where that has really originated,
And even just researching my book, that's kind of the
first place you have to turn to for understanding what
masking is because from the outside, basically psychiatry looked at
people who were masking and they said, oh, they're not autistic.
We don't need to worry about.
Speaker 1 (18:06):
That, right, I hate got it. So it's sort of
like a common narrative that you saw was that people,
once diagnosed, we're kind of able to see the ways
in which they had been doing that performance right exactly.
Speaker 7 (18:17):
Often it was kind of recognizing a more visibly autistic
trait in a family member, like a sibling having a
clear meltdown and realizing, oh, hey, wait a second, I
go into the bathroom to beat myself up when I'm
losing it because I don't want people to see. But
that's not that different from my son who's like banging
his head against the wall when a siren goes roun.
Speaker 1 (18:36):
Oh, I got it. Yeah, that's really interesting. Were those
conversations political in your opinion.
Speaker 7 (18:41):
Yeah, unmasking is definitely closely tied to the neurodiversity movement
in general, which is a political movement that started more
in the early nineties, saying there are a variety of
different ways that brains function, there's a bunch of different
neurotypes that kind of correspond to different disabilities or mental
illness labels people have, and really we're all different from
each other as well, and what society really needs is
(19:03):
to accommodate all of those differences rather than treating them
like an illness to be cured. And so that was
always a really deeply political idea, and the neurodiversity movement
is a political movement, and so yeah, I think there's
a pretty clear through line between that and unmasking as
a small scale, active kind of political resistance against conformity,
(19:26):
because the circumstances that force autistic people to mask is
political repression. The idea of here is how a normal
person quote unquote is supposed to act and sit in
their body, how they're supposed to dress, how they're supposed
to speak. All of those things influence autistic people being
(19:46):
excluded from public life. That's why you know, eighty five
percent of us roughly are unemployed and are at risk
of interpersonal and relational abuse and all of these other things.
And so it is because of that really really intense
caarity that we face for seeming at all different, that
we feel that we have to pretend to be the
(20:06):
neurotypical ideal of what a person is, and so rejecting
that I think is a small scale, active political rebellion in.
Speaker 1 (20:16):
A clinical sense. Do you see autism as distinct from
mental illness?
Speaker 7 (20:22):
I personally don't, because when I look at mental illness
labels and mental disability labels like autism or ADHD, I
see people being stigmatized for how they think and feel
and behave, and that that stigma creates so much of
the suffering for them, over and above whatever actual pain
(20:42):
the quote unquote condition itself causes. And sometimes it is
both of those things. But we are both really politically
repressed groups. We're both groups that are created by neuroconformity.
And I've certainly been seen as mad before, right like
lots of autistic people have been given mental illness labels
or seen as unquote crazy. So I think we are
in the same boat.
Speaker 1 (21:04):
What would be your argument for erasing autism spectrum disorder
from the DSM.
Speaker 7 (21:08):
I would say that if you really believe in the
neurodiversity model, which kind of says that we all have
different ways of thinking and experiencing the world, and they
all deserve acceptance and accommodation, not being eradicated or cured
out of a person. If you really believe that, then
you can't really see autism as a pathology. Rather, it's
(21:31):
more of a social identity that people should be able
to claim. And we're already heading in that direction, with
more and more people self realizing or self diagnosing instead
of seeking out formal diagnosis. And there's a lot of
reasons why a person might do that, either because they
can't afford it, or because they don't want to be
marked as other in the system and lose a lot
(21:52):
of rights if they are marked as having this disability.
So there's a big trend in autism spaces to really
embrace us defining for ourselves who we are rather than
having psychiatry define it for us. And there's also a
really rich historical legacy of that when you look at
how queer people have gotten homosexuality taken out of the
(22:12):
DSM or gender identity disorders taken out of the DSM,
saying basically, hey, we are just a naturally occurring part
of humanity. We're not sick for being gay, We're not
sick for being trans, we're not sick for being autistic.
We get to define who we are as a community.
We don't need a rubber stamp from a professional to
say that we are who we are.
Speaker 1 (22:34):
I'll just like say the thoughts of having I thought
the same thing about homosexuality once being like a diagnosed disorder,
and then also, yeah, like gener identity disorder. I guess
my understanding of that is it's serving a slightly different
purpose because at one time you needed the diagnosis to
receive certain kinds of a transforming care or gender affirming care.
And so I think that I'm having a similar thought
about in the world in which we didn't see autism
(22:56):
as a disordered, how people would access care, people who
need maybe like more supports than you or I might need.
I'm not sure I said a question.
Speaker 7 (23:06):
But yeah, no, yeah, So I think one of the
first things to think about there is just looking at
what accessing care as a diagnosed autistic person even looks
like now, and for most autistic people, that is applied
behavioral analysis therapy, which is really traumatic. It isn't effective
quote unquote in terms of improving the autistic person's mental
(23:27):
health or susceptibility to abuse or coping. In fact, it
makes all of those things worse. It's really strongly linked
to PTSD. The one thing that it is quote unquote
effective at and really evidence based at doing, is conditioning
an autistic person to be less of a bother to
the non autistic people around them, to sit still and
not make noise, and to follow a conversational script. And
(23:51):
a lot of times, unfortunately, those are the kinds of
services that a diagnosis right now of autism unlocks. It
gets to you segregated from schooling institutions, It gets you
treated as if you're less competent than your peers. It
can lead to you being removed from organ donor lists
because your body isn't viewed as worth saving. It can
even make you incapable of immigrating to other countries if
(24:14):
you have an autism diagnosis. So there's a lot of
risks that come right now with a diagnosis. In addition
to some of the benefits, which can be things like
getting extra test time at school and things like that.
So I think there is a big problem with our
existing paradigm right now we only disabled people as deserving
of support if we also think that they need to
(24:38):
have their rights taken away, and those two things need
to really be disentangled. And again that's a pretty large
political project, But I would really like to see the
day where people could get extra test time in college
for a variety of different reasons. Maybe we would have
workplaces in schools that were a little bit more flexible
(25:00):
to the differences in how everybody works and functions, instead
of only being gracious to people if they had again
like a rubber stamp on them saying there's something quote
unquote wrong with you and that's why you deserve support,
which is unfortunately how we're living today.
Speaker 1 (25:16):
Yeah, yeah, I hear contained in your answer. I heard
a distinction between treatment, which I think does reinforce that
disorder pathology, et cetera versus support versus care implies a
deeper relationship.
Speaker 5 (25:28):
You know.
Speaker 1 (25:29):
I'm thinking of like in a school environment, and support
is one thing I don't care may or may not
be present. I guess I want to touch a little
bit on the aspect of relationships that you highlight in
your book, and you mentioned your own experience going to
a gender career support group where you also met a
lot of narrative version people. Can you just like talk
a little bit about that experience and why it was
significant for you.
Speaker 7 (25:50):
Yeah, So in the book, I talk about a few
spaces where I first started being physically around a lot
of other autistic people and how integral that was for
my unmasking. So I went to this gender queer discussion
group at the LGBTQ Center in my city, and because
a lot of autistic people are out as trans and
vice versa, there were a lot of autistic people there
(26:11):
and it was built into how the group functioned, so
the lights were really dim. We would build blanket forts
once a month to like hide in while we were talking.
We had like very clear cut rules about how you
could know when it was your time to talk. Because
a lot of us autistic people, we don't read non
verbals easily, and so it's hard to kind of tell
when you're supposed to jump into a conversation versus when
(26:33):
you're supposed to wait. People were just kind of playing
with stem toys, so fidget toys and things like that.
It was just really built in and normalized how our
bodies and minds really work. And it helps me feel
a lot less embarrassed about the sides of myself that
I was constantly worrying made me look childish or weird
to other people. And when it comes to the subject
(26:54):
of treating autism or getting autistic people's support, one thing
that I always want to send home to parents and
advocates who are worried about the autistic people in their
lives is so much of the time, what we don't
need is any kind of treatment. We just need to
be around a lot of people like us. That itself
is so restorative and healing. We don't need to learn
(27:15):
to behave more like neurotypical kids when we're children, for example.
We just need to see, oh wow, I'm not the
only person who's like this. That is so empowering. It's
so good for our psychological health. And you know, for me,
it didn't come until I was in my late twenties
early thirties, but I'm so glad that it finally did.
Speaker 1 (27:30):
Yeah wow. Sometimes a lot of times, actually, when I
have these conversations. It's like there's a lot of things
that are coming up that are just like really personal
to me. And so yeah, I really I just really like,
I really love that anecdote. Do you find it useful
when people say everyone's a little autistic or what do
you think of that?
Speaker 7 (27:45):
So a lot of autistic people really hate phrases like
everyone's a little autistic because it's usually trotted out to
kind of diminish our experience, Right, Like, if you complain
that the environment you're in is too noisy, somebody might say, well,
everybody's a little bit sens so, and the implication there is,
so you need to stop complaining. We all have to
put up with this kind.
Speaker 1 (28:04):
You don't need special accommodations.
Speaker 7 (28:05):
Yeah, Right, So when people say things like that, they're
usually meaning it in a dismissive way, but I think
they are actually without realizing it onto something. Every autistic
trait exists on a spectrum in the human population. Right
There are people who are not autistic who have sensory sensitivities,
or who have social anxiety and hate making eye contact,
or who have you know, low muscle development that's pretty
(28:27):
common in autism. Like they still sometimes struggle to fit
in or struggle to get by in a world that
is really discriminatory towards autistic people and so non autistic people.
They have more in common with us than they realize,
And I just wish that they would take that as
an occasion to have compassion for us and to see
a need for accommodations for everyone, instead of using it
(28:49):
as this like dismissive statement of oh, just deal with it.
We all have to deal with it.
Speaker 1 (28:53):
Yeah, Okay, I'm glad I asked the question because I
was I really could answer. Yeah, the neurodiversity of it
all is part of what I was about.
Speaker 7 (29:00):
Yeah. So, when Judy Singer introduced neurodiversity as a term,
she was talking about how herself and her daughter, who
had different disabilities, one of them was autistic, one of
them had ADHD still struggled from exclusion in a lot
of the same ways, and her real idea there was
that everybody is potentially neurodiverse in some way, that we
(29:22):
all have unique needs and abilities and limitations. A lot
of people started adopting a neurodivergent label or an autistic
label and taking a lot of pride in it and
recognizing that they had been excluded in some way. I
think it morphed into this binary identity because of social media,
(29:42):
or social media at least facilitated it, where a lot
of people started finding each other online. That's at least
what I've noticed, and I think, unfortunately it leads to
them trying to draw a hard line between I'm a
neurodivergent person and I'm oppressed and everybody else around me
is like a boring neurotypical and I'm not a fan
of that idea. There is a physician, Dave Saunders, who
(30:06):
came up with the neuroconformity model of autism, which I
like a lot better. Yeah, which says that basically, we
all vary in how much we can neuro conform to
the social ideal, but nobody is actually like the perfect
quote unquote neurotypical person. Like, what is that? That's just
a standard to aspire to, and it hurts all of
(30:27):
us when we aspire to it.
Speaker 1 (30:29):
What is your vision for a neurodiverse world and what
does justice for neurodiversion people look like to you?
Speaker 7 (30:36):
Yeah, if we really want a neurodiverse world, there are
a lot of things that need to change. I really
believe that we need prison abolition and police abolition because
they terrorize neurodiversion people, especially neurodivision people of color, to
such extreme degrees. There's such a huge overlap between people
who are victims of police violence and people who are disabled.
We need to have a way more robust social wealth
(31:00):
fair system or a safety net because if we really
want to embrace disabled people, no matter how they function
or don't function, I think we need people to be
able to live in comfort, even if they can never
work a single day of their lives. That's going to
be a lot of autistic people, including a lot of
people who mask today at great personal cost. And I
(31:21):
think we need to do a lot to deinstitutionalize how
our schools work, how our workplaces work, so that there
is a lot more flexibility for everyone's freedom of movement,
freedom to learn the way that they learn, to study
what's inspiring passion, for them to be able to leave
the room when they're uncomfortable, to be able to sit
or stand. However, they need to to focus on the
(31:44):
things that matter to them. We really live in a
repressive environment, and it's not just autistic people who suffer
from that, it's every single one of us. And so
the good news is, even if this sounds like very
utopian of a vision, when we blow a lot of
these things up, imagine new ways of learning, of imagining childcare,
of imagining work together, it is going to make a
(32:07):
lot of people a lot more comfortable and happy and healthy,
not just the relatively smaller subset of the population that
is autistic or ADHD or any other like that.
Speaker 5 (32:17):
Yeah.
Speaker 1 (32:18):
I'm like, I'm nodding so emphatically. Yeah, Okay, So you
have written three books Laziness does Not Exist, I'm Asking Autism,
and then you have a new book about Shame. What
are the links between those three works?
Speaker 7 (32:31):
Yeah, all three of those books are about the pressure
marginalized people face in society to be something that they're
not and how self destructive that is. Laziness does Not
Exist is all about the demand that we just constantly
work all of the time, when nobody's body and mind
is built for that, but especially not if you're disabled
or if you have some other marginalization. I'm Asking Autism
(32:54):
is obviously about the disconnect between having a neurotype that
marks you as other and the demands of a world
that says you have to cover that otherness up. And
both of those experiences, masking and chasing after productivity are
really shame fueled experiences, and so unlearning shame is really
about how all marginalized people we internalize a lot of
(33:15):
the stigmas that are put on us, and we do
a lot to close ourselves off from building community and
building stronger networks of power that will tear these systems
of oppression down because we've decided, instead of the systems
of oppression being the bad guy, that it's our fault
for not being a good enough queer person, a hard
enough working autistic person, somebody who's overcoming their disability or
(33:37):
whatever it is.
Speaker 1 (33:39):
Okay, well, thank you so much for speaking with me,
and thank you so much for reminding me to record
the interview.
Speaker 6 (33:44):
That would have been terrible, could.
Speaker 1 (33:47):
Not be me doing a live thing.
Speaker 7 (33:50):
We got it, We did it.
Speaker 1 (33:51):
I really appreciate you making the times Yeah you too.
Woven throughout unmasking Auto Devin references and exercise of values
based integration process. It's an exercise developed by a specialist
named Heather R. Morgan. One part of the integration exercise
as a prompt to recall times in your life when
(34:13):
you felt truly alive. Remembering these moments is supposed to
help you find your why why unmask It's to help
you locate your personal core values so that you can
be guided by them instead of beholden to the values
and expectations the often arbitrary rules that we sometimes inherit
without choice. If masking is a kind of alienation, the
(34:34):
state of being hidden even to yourself, then integration is
the opposite of that. Whether you are autistic or neurodivergent
or mad, unmasking and integration are both useful frameworks. And
maybe you're already practicing unmasking.
Speaker 2 (34:49):
So now what?
Speaker 1 (34:51):
Since we had this conversation in early summer, devn Price
has announced a sqel to unmasking autism called Unmasking for Life,
a book about what happens after you realize as your
neurodivergent and need to organize your life accordingly. I also
asked Devan what books has fired his own unmasking journey.
A link to all of this as always and the
show notes. Basketcase is a production of molten Heart and
(35:21):
iHeart podcasts. This series was created and is executive produced
by Jasmine j T. Green and it is hosted, produced
and sound designed by me n K Nicole Kelly. Special
thanks to doctor Devon Price, whose work informed obviously this
episode and also our previous episode on neurodiversity. Production support
by Siona Petros and Ammani Leonard. Adrian Lilly is our
(35:44):
mixed engineer. Our theme is blue and orange by Command Jasmine.
Our show art is by Sinay Rolson, fact checking by
Serena Sold. The legal services provided by Rowan, Maren and File.
Our executive producer from My Heart podcast is Lindsay Hoffmann
Hey, it's enkay Baska. Case gets into some heavy topics
about mental health. But keep in mind that I'm not
a mental health professional. So in the description of this
and every episode, I'll leave you a list of relevant
resources and links to the things I'm reading, And while
you're listening, take care that you got a little over
(00:44):
a year ago, I finally left Los Angeles, where I
had been living for fifteen years. I now live in
Mexico City, and for me, the paradox being conspicuously foreign
is that sometimes I actually feel like I'm invisible, or
(01:07):
like I have the power to be invisible when I
want to. It's sort of easy to hide in plain sight,
and I actually like that feeling. At least now there's
a reason that I feel out of sync with the
cultural norms or social expectations of a particular space. But
at the same time, I am making a conscious choice
(01:27):
to assimilate. I want to be part of the culture.
It's one of the reasons I moved here, and so
when I'm talking to other people who aren't from here
and who share that goal, it's normal for us to
talk about assimilating as a deliberate process. I've learned that
it takes more than just being here to learn the
social norms. It does take intention. In my opinion, it
(01:48):
requires study. It requires data and preparation, observation, diligent note taking,
and practice. And I know that because even when I'm
at home in the US, socializing, the mere human act
of being perceived, is something I have to think about
and prepare.
Speaker 2 (02:07):
For a lot. I've been writing down rules for myself,
do this, don't do this, rules for socializing based on
trial and error for most of my adult life, because
there are lots of ways.
Speaker 1 (02:21):
To learn that you aren't okay, that you aren't acceptable,
and then you learn that there are lots of ways
to be punished in the interest of conformity. For a
lot of my life, I've needed a strategy for surviving whiteness. Whiteness,
white people, white teachers, white workplaces, white shit, you name it.
And the strategy I learned for navigating whiteness is what
I would call respectability. Because of the politics of respectability,
(02:45):
I internalize the expectation that it's my responsibility to uphold
an exemplary standard of excellence, and that I should be
always conscious not to bring embarrassment on myself or other
people who look like me, and that instead my behavior
should always reflect positively on the community that I belonged to,
and that is something that I later had to unlearn,
(03:06):
but I recognize that at its core, respectability politics is
a kind of shield against dehumanization. That's why I called
it a strategy. When we conform, even when we aren't
doing it consciously, we're responding to a human need for
inclusion and safety, for belonging in community. And sometimes that
need for safety can feel at odds with the other
(03:28):
very real need for authentic expression. And for me, the
way that being my authentic self seemed to threaten an
always precarious sense of belonging produced in me a primal fear,
a fear that persists to this day as social anxiety
just won't quit, which is why the concept of masking
and the invitation to unmask unlocked something inside of me.
Speaker 3 (03:53):
Hey YouTube, it's Kofi and I'm back with another video
about being black and autistic.
Speaker 4 (04:00):
I want to talk to you about masking.
Speaker 5 (04:02):
So how do you know if you're masking or not.
Let's talk like an autistic But then I'm going out
into the world and pretending I'm not autistic.
Speaker 4 (04:09):
Because as an autistic adhder of the journey to unmasking
is certainly every day.
Speaker 5 (04:14):
It's like a really difficult concept to get your head around.
It's really abstract. Do I feel uncomfortable in social situations?
Speaker 4 (04:22):
If you've been diagnosed with autism or ADHD?
Speaker 5 (04:25):
Do I feel dreamed after a social situation and you may.
Speaker 4 (04:28):
Have engaged in a commonly used technique of hiding your
true self in order to fit in and feel excessive.
Speaker 5 (04:34):
It is a very real thing, and it's even mentioned
in the DSM five diagnostic criteria. Do I avoid social situations?
Speaker 3 (04:41):
The standards are just tightened when you're a black person.
The way we navigate society, we already have to mask.
We already have to think about the way we're being
perceived by other people.
Speaker 5 (04:52):
An autistic person who is more different than the average
person because may need to put more effort into this
mask in order to ma.
Speaker 3 (05:00):
Our parents were like, okay, wait, now you got to
be twice as hard, so we can't be having none
of that.
Speaker 1 (05:05):
But it makes me wonder how many of us go
undiagnosed at you right.
Speaker 3 (05:09):
Because trying to escape the stereotypes constantly and trying to
understand what the world expects from you constantly as a
black person can be very confusing.
Speaker 1 (05:20):
Yeah, you're speaking to conformity, right, the fact that we
need to conform in so many ways.
Speaker 6 (05:26):
And show up in the world in a particular way.
Speaker 4 (05:29):
You know.
Speaker 6 (05:30):
We talked about this in another.
Speaker 1 (05:31):
The act of masking is unconscious social performance, something that
neurodiversion and in particular people on the autism spectrum learn
to do in order to fit into neurotypical society.
Speaker 7 (05:42):
A lot of times autistic people mask without even realizing
they're doing it, because if you don't know that you're autistic,
all that you know is people are telling you you're
overreacting to things all of the time. And so you
learn to just not trust your feelings or your needs
and to become very compliant or agreeable or to take
on kind of a class clown persona to find some
(06:02):
way to kind of hide what you're finding difficult in life.
Speaker 1 (06:05):
That's Doctor Devin Price a writer, social psychologist, and author
focusing on autism, and he's also an autistic person. He's
the author of Laziness Does Not Exist, and this year
he also published a Learning Shame, How rejecting self blame
culture gives us real power. You can also follow devon
On and Stuff for some spicy contributions to the neurodiversity discourse.
(06:25):
But the work doctor Devin Price might most be known
for is twenty twenty two's Unmasking Autism, which is a
really helpful explanation of what masking is and it's also
a call to action. It's about the ways that for
people with overlapping marginalized identities, masking is a strategy for survival,
but like many other survival strategies and trauma responses, it's
(06:45):
a coping mechanism that over time, often causes more harm
than good in the long run. So the act of
unmasking is an act of self love. It's also an
active disobedience. One of my biggest takeaways from reading the
book was in the world words of the poet Mary Oliver,
you do not have to be good. This is basket case.
(07:06):
I'm nka with your weekly reminder that bad bitches have anxiety.
And my conversation with doctor Devin Price is happening after
this break.
Speaker 2 (07:16):
Person's gonna want person's gonna walk wah, Person's gonna want.
Speaker 5 (07:21):
Me when I have to president anxiety?
Speaker 6 (07:26):
M M M m mmmm, we are recording.
Speaker 1 (07:40):
Yeah, no problem, so I'll begin. I'll just restate my
question now that we are actually recording. So it's by
the way, I forgot to record the first five minutes
of my conversation with Devin, during which he told me
I could call him Devon, which is why we're just
getting into it. Here's the interview. Okay, So when I
first learned about masking, I definitely went down a YouTube
(08:00):
rabbit hole trying to understand what people were talking about,
what the autistic and nerd diversion people that I follow
on Twitter were describing. There was a lot of discussion
about unmasking, not a lot of explanation of what the
mask experience actually was, and so I think reading Unmasking
Autism was definitely one of the first times that I
(08:21):
encountered a really coherent explanation of the process of masking
or its component parts or its component actions in a
way that made it really easy to understand, like the
ways in which autistic people are disabled on a daily basis,
or one of the ways in which autistic people can
be disabled. And also it's written in a way that
is really relatable. So I wonder if you could just
(08:43):
start by defining what people are talking about, what people
mean when they say that they're masking.
Speaker 7 (08:49):
Yeah, so masking is taking steps to either camouflage your
disability or to compensate for what's difficult for you as
a disabled person so that people don't detect you as disabled.
And lots of autistic people do it, especially autistic women
and people of color and people in poverty and other
marginalized groups. They do it because there is almost no
(09:10):
social permission for them to find something difficult, to ask
for the lights to be dimmed, or to ask to
leave the classroom because it's way too noisy and it's
making them feel fight or flight mode roaring inside of
their bodies, and so instead they have to learn to
kind of grin and bear it and act like they're
not in pain all of the time.
Speaker 1 (09:29):
How is masking different than code switching?
Speaker 7 (09:33):
Yeah, I definitely thought about code switching as a parallel
in some ways to masking. But when you really talk
to people of color about code switching, some people consider
it this compulsory thing that's really damaging for them to
have to do and really exhausting to have to do.
But other people talk about it as a form of
cultural fluency that they really value and are proud of
(09:53):
about themselves. I would say that masking is more like
being closeted as a queer person, where you're trying to
suppress all of your tells of who you are, and
that is pretty innately damaging. I think for people, code
switching absolutely can be as well. But I just from
the outside, I just don't want to paint that with
too broad of a brushstroke and say that it's inherently negative,
(10:15):
because I've heard so many people say, look, this is
almost a cultural superpower that we've had to develop. Another
way to kind of articulate it is like when people
are code switching, usually they're very conscious that they're doing it,
whereas if you're closeted or you're masking, you aren't even
aware of yourself of who you would like to be.
So that kind of state of alienation is It means
(10:35):
that you can't consciously make choices about do I need
to do this right now to be safe? Am I
okay with doing this? What's the cost of doing this?
You're just like bearing the toll of it all the
time without even knowing that you're doing it.
Speaker 1 (10:46):
Yeah, totally. Can you say more about the toll that.
Speaker 7 (10:49):
It takes, Just that we see that masking is really
strongly linked in autistic people to a heightened risk of
self harm, substance addiction. There's a really prone denounced risk
of suicide. Ideation and attempts for people who mask depression
and anxiety obviously undergirding that as well. That it's good
(11:09):
for people to know that it's not as simple as
just plastering a smile on your face when you go
into work every morning, though that itself can be super
exhausting and really take a toll. It's this really existential
disconnection between who you are and the person you are
demanded to be, and that takes a really heavy toll.
And again that everybody has to do it. Everybody is
(11:31):
pushed to hide parts of themselves under the economic system
that we are all living in, and so everybody benefits
when we unmask a little bit more, when we can
be a little bit messier and more vulnerable and not
have to rain in everything about us that makes us
seem strange or non compliant or whatever else.
Speaker 1 (11:49):
Can you talk about some of the reasons that you
found it necessary to write this book.
Speaker 7 (11:54):
I wrote Unmasking Autism because there was a really large
gap in the literature on autism and in the public
consciousness on it. I was in the right position at
the right time, in that I had some psychological expertise
and research expertise, and I was grappling with finding out
I was autistic in my late twenties, and I wrote
(12:16):
the book that I wished had existed at that time
in my life. Even though I had a PhD in
psychology when I found out I was autistic, I still
knew very, very little about what autism really was. I
really didn't know how all the different ways that sensory
issues could present. I didn't know that much about how
masking could really psychologically tax you. I hadn't met a
(12:38):
whole diverse array of different autistic people who like me,
were queer and were marginalized and struggling with all of
these things. And so slowly digesting these facts and meeting
people out in the autistic community and realizing how much
even psychological experts were missing about the story of what
autism is really put me in a position to say, Okay,
(13:00):
somebody needs to fix this.
Speaker 1 (13:02):
So just to clarify it, it's not that your particular
academic path didn't include studying autism. It's just that what
you studied or what you were taught wasn't comprehensive.
Speaker 7 (13:10):
What I was taught about autism in graduate school was
the same tired old stereotypes that people have been believing
for decades. So things like autistic people have no desire
to have friends, they don't ever experience any compassion or
empathy for other people. Like that kind of stuff that
might seem even now a few years out, just so
(13:31):
blatantly wrong on its face, that was still the common
knowledge even for a lot of professionals in like twenty fourteen,
twenty thirteen, when I was in school, And so with
Unmasking Autism, I was really seeking to bring together all
of the research and personal narratives of all of the
people that don't meet that stereotype of how autism looks.
People of color, trans people, women, older adults, all kinds
(13:55):
of groups that have eluded diagnosis, not because their autism
is milder, but because society doesn't take care of them.
To the same extent, everyone was hyper aware of a
stereotypical portrait of autism, the type of autism that gets
diagnosed young in typically white cisgender boys with kind of
stereotypically masculine interests, which is really limiting and it excludes
(14:20):
a majority of autistic people. And there was also some
scholarship out there talking about this idea of quote unquote
female autism, which was this idea that autism in girls
is quieter and subtler, and that they're more socially appropriate
for some reason, and the literature didn't really actually bear
(14:41):
that out. There wasn't any kind of biological reason why
girls or other groups such as people of color were
getting overlooked and getting diagnosed at later ages. It was
really just because they're suffering wasn't taken as seriously as
that of white cisgender boys. There's a lot of autistic
people online who were finding each other and educating each
(15:02):
other about what we need and what works for us,
but none of that work is really getting amplified or
being treated as legitimate. And so I was really lucky
that I could kind of trade in my official psychological
credentials as a way of uplifting all of this great
work that autistic self advocates were already doing and saying, hey,
we have a pretty good sense of who we are
(15:23):
when you really look at all of our experiences together,
and who we are has been really overlooked by the
science up to this point.
Speaker 1 (15:30):
Right, Well, what does the book do and what doesn't
it do? And I think contained in that question is
also like who is it speaking to or about? Who
is it speaking less about?
Speaker 7 (15:39):
Yeah, so the book is mostly speaking to people who
find out that they're autistic relatively later in life. People
who they find out they're autistic after their child was diagnosed,
or they find out that they were autistic after they
had a major burnout at work, because they've been masking
their autism. They've been hiding their disability for decades of
their life, and they've often had to do that masking
(16:00):
because of things like racism or because of things like
sexism that really give you a lot less latitude to
struggle if you are not a white cisgender guy. And
so those are the people that are really centered in
the book. I've gotten some criticisms sometimes for not talking
about white men enough in the book, which is funny.
Being the author of the book and being a white man,
(16:22):
I would think that there's already plenty of me in there,
But that's definitely who the book is for.
Speaker 1 (16:27):
After the break, Devin and I get into the politics
of neurodiversity. So I think I mentioned, you know, I
heard the term masking for the first time in the
context of autism pretty recently, like only in the last
three or four years. Maybe it kind of bubbled up
into my consciousness through online discourse about the decision to unmask.
(16:51):
But when did you first encounter masking as a phenomenon
or experience that is unique to autistic people that people
were having or talking about.
Speaker 7 (17:03):
Yeah, I've tried to track down the origins of masking
as a term related to autism, and it seems to
originate on some forums in like the early twenty tens.
So it existed from autistic people talking amongst themselves about
the steps they take to survive or the alien nation
that they felt before they knew they were autistic. And
then it was later that the research literature caught on
(17:25):
and started studying, Okay, what strategies do autistic people use
to mask? What does that look like, what's the toll
of masking and all of those things. But there really
is a much more robust literature, if you will, just
in autistic people's vlogs and blogs and how they talk
about this stuff in support groups and things like that.
(17:47):
The term itself originated on forums in the late aughts
early twenty tens. That is where that has really originated,
And even just researching my book, that's kind of the
first place you have to turn to for understanding what
masking is because from the outside, basically psychiatry looked at
people who were masking and they said, oh, they're not autistic.
We don't need to worry about.
Speaker 1 (18:06):
That, right, I hate got it. So it's sort of
like a common narrative that you saw was that people,
once diagnosed, we're kind of able to see the ways
in which they had been doing that performance right exactly.
Speaker 7 (18:17):
Often it was kind of recognizing a more visibly autistic
trait in a family member, like a sibling having a
clear meltdown and realizing, oh, hey, wait a second, I
go into the bathroom to beat myself up when I'm
losing it because I don't want people to see. But
that's not that different from my son who's like banging
his head against the wall when a siren goes roun.
Speaker 1 (18:36):
Oh, I got it. Yeah, that's really interesting. Were those
conversations political in your opinion.
Speaker 7 (18:41):
Yeah, unmasking is definitely closely tied to the neurodiversity movement
in general, which is a political movement that started more
in the early nineties, saying there are a variety of
different ways that brains function, there's a bunch of different
neurotypes that kind of correspond to different disabilities or mental
illness labels people have, and really we're all different from
each other as well, and what society really needs is
(19:03):
to accommodate all of those differences rather than treating them
like an illness to be cured. And so that was
always a really deeply political idea, and the neurodiversity movement
is a political movement, and so yeah, I think there's
a pretty clear through line between that and unmasking as
a small scale, active kind of political resistance against conformity,
(19:26):
because the circumstances that force autistic people to mask is
political repression. The idea of here is how a normal
person quote unquote is supposed to act and sit in
their body, how they're supposed to dress, how they're supposed
to speak. All of those things influence autistic people being
(19:46):
excluded from public life. That's why you know, eighty five
percent of us roughly are unemployed and are at risk
of interpersonal and relational abuse and all of these other things.
And so it is because of that really really intense
caarity that we face for seeming at all different, that
we feel that we have to pretend to be the
(20:06):
neurotypical ideal of what a person is, and so rejecting
that I think is a small scale, active political rebellion in.
Speaker 1 (20:16):
A clinical sense. Do you see autism as distinct from
mental illness?
Speaker 7 (20:22):
I personally don't, because when I look at mental illness
labels and mental disability labels like autism or ADHD, I
see people being stigmatized for how they think and feel
and behave, and that that stigma creates so much of
the suffering for them, over and above whatever actual pain
(20:42):
the quote unquote condition itself causes. And sometimes it is
both of those things. But we are both really politically
repressed groups. We're both groups that are created by neuroconformity.
And I've certainly been seen as mad before, right like
lots of autistic people have been given mental illness labels
or seen as unquote crazy. So I think we are
in the same boat.
Speaker 1 (21:04):
What would be your argument for erasing autism spectrum disorder
from the DSM.
Speaker 7 (21:08):
I would say that if you really believe in the
neurodiversity model, which kind of says that we all have
different ways of thinking and experiencing the world, and they
all deserve acceptance and accommodation, not being eradicated or cured
out of a person. If you really believe that, then
you can't really see autism as a pathology. Rather, it's
(21:31):
more of a social identity that people should be able
to claim. And we're already heading in that direction, with
more and more people self realizing or self diagnosing instead
of seeking out formal diagnosis. And there's a lot of
reasons why a person might do that, either because they
can't afford it, or because they don't want to be
marked as other in the system and lose a lot
(21:52):
of rights if they are marked as having this disability.
So there's a big trend in autism spaces to really
embrace us defining for ourselves who we are rather than
having psychiatry define it for us. And there's also a
really rich historical legacy of that when you look at
how queer people have gotten homosexuality taken out of the
(22:12):
DSM or gender identity disorders taken out of the DSM,
saying basically, hey, we are just a naturally occurring part
of humanity. We're not sick for being gay, We're not
sick for being trans, we're not sick for being autistic.
We get to define who we are as a community.
We don't need a rubber stamp from a professional to
say that we are who we are.
Speaker 1 (22:34):
I'll just like say the thoughts of having I thought
the same thing about homosexuality once being like a diagnosed disorder,
and then also, yeah, like gener identity disorder. I guess
my understanding of that is it's serving a slightly different
purpose because at one time you needed the diagnosis to
receive certain kinds of a transforming care or gender affirming care.
And so I think that I'm having a similar thought
about in the world in which we didn't see autism
(22:56):
as a disordered, how people would access care, people who
need maybe like more supports than you or I might need.
I'm not sure I said a question.
Speaker 7 (23:06):
But yeah, no, yeah, So I think one of the
first things to think about there is just looking at
what accessing care as a diagnosed autistic person even looks
like now, and for most autistic people, that is applied
behavioral analysis therapy, which is really traumatic. It isn't effective
quote unquote in terms of improving the autistic person's mental
(23:27):
health or susceptibility to abuse or coping. In fact, it
makes all of those things worse. It's really strongly linked
to PTSD. The one thing that it is quote unquote
effective at and really evidence based at doing, is conditioning
an autistic person to be less of a bother to
the non autistic people around them, to sit still and
not make noise, and to follow a conversational script. And
(23:51):
a lot of times, unfortunately, those are the kinds of
services that a diagnosis right now of autism unlocks. It
gets to you segregated from schooling institutions, It gets you
treated as if you're less competent than your peers. It
can lead to you being removed from organ donor lists
because your body isn't viewed as worth saving. It can
even make you incapable of immigrating to other countries if
(24:14):
you have an autism diagnosis. So there's a lot of
risks that come right now with a diagnosis. In addition
to some of the benefits, which can be things like
getting extra test time at school and things like that.
So I think there is a big problem with our
existing paradigm right now we only disabled people as deserving
of support if we also think that they need to
(24:38):
have their rights taken away, and those two things need
to really be disentangled. And again that's a pretty large
political project, But I would really like to see the
day where people could get extra test time in college
for a variety of different reasons. Maybe we would have
workplaces in schools that were a little bit more flexible
(25:00):
to the differences in how everybody works and functions, instead
of only being gracious to people if they had again
like a rubber stamp on them saying there's something quote
unquote wrong with you and that's why you deserve support,
which is unfortunately how we're living today.
Speaker 1 (25:16):
Yeah, yeah, I hear contained in your answer. I heard
a distinction between treatment, which I think does reinforce that
disorder pathology, et cetera versus support versus care implies a
deeper relationship.
Speaker 5 (25:28):
You know.
Speaker 1 (25:29):
I'm thinking of like in a school environment, and support
is one thing I don't care may or may not
be present. I guess I want to touch a little
bit on the aspect of relationships that you highlight in
your book, and you mentioned your own experience going to
a gender career support group where you also met a
lot of narrative version people. Can you just like talk
a little bit about that experience and why it was
significant for you.
Speaker 7 (25:50):
Yeah, So in the book, I talk about a few
spaces where I first started being physically around a lot
of other autistic people and how integral that was for
my unmasking. So I went to this gender queer discussion
group at the LGBTQ Center in my city, and because
a lot of autistic people are out as trans and
vice versa, there were a lot of autistic people there
(26:11):
and it was built into how the group functioned, so
the lights were really dim. We would build blanket forts
once a month to like hide in while we were talking.
We had like very clear cut rules about how you
could know when it was your time to talk. Because
a lot of us autistic people, we don't read non
verbals easily, and so it's hard to kind of tell
when you're supposed to jump into a conversation versus when
(26:33):
you're supposed to wait. People were just kind of playing
with stem toys, so fidget toys and things like that.
It was just really built in and normalized how our
bodies and minds really work. And it helps me feel
a lot less embarrassed about the sides of myself that
I was constantly worrying made me look childish or weird
to other people. And when it comes to the subject
(26:54):
of treating autism or getting autistic people's support, one thing
that I always want to send home to parents and
advocates who are worried about the autistic people in their
lives is so much of the time, what we don't
need is any kind of treatment. We just need to
be around a lot of people like us. That itself
is so restorative and healing. We don't need to learn
(27:15):
to behave more like neurotypical kids when we're children, for example.
We just need to see, oh wow, I'm not the
only person who's like this. That is so empowering. It's
so good for our psychological health. And you know, for me,
it didn't come until I was in my late twenties
early thirties, but I'm so glad that it finally did.
Speaker 1 (27:30):
Yeah wow. Sometimes a lot of times, actually, when I
have these conversations. It's like there's a lot of things
that are coming up that are just like really personal
to me. And so yeah, I really I just really like,
I really love that anecdote. Do you find it useful
when people say everyone's a little autistic or what do
you think of that?
Speaker 7 (27:45):
So a lot of autistic people really hate phrases like
everyone's a little autistic because it's usually trotted out to
kind of diminish our experience, Right, Like, if you complain
that the environment you're in is too noisy, somebody might say, well,
everybody's a little bit sens so, and the implication there is,
so you need to stop complaining. We all have to
put up with this kind.
Speaker 1 (28:04):
You don't need special accommodations.
Speaker 7 (28:05):
Yeah, Right, So when people say things like that, they're
usually meaning it in a dismissive way, but I think
they are actually without realizing it onto something. Every autistic
trait exists on a spectrum in the human population. Right
There are people who are not autistic who have sensory sensitivities,
or who have social anxiety and hate making eye contact,
or who have you know, low muscle development that's pretty
(28:27):
common in autism. Like they still sometimes struggle to fit
in or struggle to get by in a world that
is really discriminatory towards autistic people and so non autistic people.
They have more in common with us than they realize,
And I just wish that they would take that as
an occasion to have compassion for us and to see
a need for accommodations for everyone, instead of using it
(28:49):
as this like dismissive statement of oh, just deal with it.
We all have to deal with it.
Speaker 1 (28:53):
Yeah, Okay, I'm glad I asked the question because I
was I really could answer. Yeah, the neurodiversity of it
all is part of what I was about.
Speaker 7 (29:00):
Yeah. So, when Judy Singer introduced neurodiversity as a term,
she was talking about how herself and her daughter, who
had different disabilities, one of them was autistic, one of
them had ADHD still struggled from exclusion in a lot
of the same ways, and her real idea there was
that everybody is potentially neurodiverse in some way, that we
(29:22):
all have unique needs and abilities and limitations. A lot
of people started adopting a neurodivergent label or an autistic
label and taking a lot of pride in it and
recognizing that they had been excluded in some way. I
think it morphed into this binary identity because of social media,
(29:42):
or social media at least facilitated it, where a lot
of people started finding each other online. That's at least
what I've noticed, and I think, unfortunately it leads to
them trying to draw a hard line between I'm a
neurodivergent person and I'm oppressed and everybody else around me
is like a boring neurotypical and I'm not a fan
of that idea. There is a physician, Dave Saunders, who
(30:06):
came up with the neuroconformity model of autism, which I
like a lot better. Yeah, which says that basically, we
all vary in how much we can neuro conform to
the social ideal, but nobody is actually like the perfect
quote unquote neurotypical person. Like, what is that? That's just
a standard to aspire to, and it hurts all of
(30:27):
us when we aspire to it.
Speaker 1 (30:29):
What is your vision for a neurodiverse world and what
does justice for neurodiversion people look like to you?
Speaker 7 (30:36):
Yeah, if we really want a neurodiverse world, there are
a lot of things that need to change. I really
believe that we need prison abolition and police abolition because
they terrorize neurodiversion people, especially neurodivision people of color, to
such extreme degrees. There's such a huge overlap between people
who are victims of police violence and people who are disabled.
We need to have a way more robust social wealth
(31:00):
fair system or a safety net because if we really
want to embrace disabled people, no matter how they function
or don't function, I think we need people to be
able to live in comfort, even if they can never
work a single day of their lives. That's going to
be a lot of autistic people, including a lot of
people who mask today at great personal cost. And I
(31:21):
think we need to do a lot to deinstitutionalize how
our schools work, how our workplaces work, so that there
is a lot more flexibility for everyone's freedom of movement,
freedom to learn the way that they learn, to study
what's inspiring passion, for them to be able to leave
the room when they're uncomfortable, to be able to sit
or stand. However, they need to to focus on the
(31:44):
things that matter to them. We really live in a
repressive environment, and it's not just autistic people who suffer
from that, it's every single one of us. And so
the good news is, even if this sounds like very
utopian of a vision, when we blow a lot of
these things up, imagine new ways of learning, of imagining childcare,
of imagining work together, it is going to make a
(32:07):
lot of people a lot more comfortable and happy and healthy,
not just the relatively smaller subset of the population that
is autistic or ADHD or any other like that.
Speaker 5 (32:17):
Yeah.
Speaker 1 (32:18):
I'm like, I'm nodding so emphatically. Yeah, Okay, So you
have written three books Laziness does Not Exist, I'm Asking Autism,
and then you have a new book about Shame. What
are the links between those three works?
Speaker 7 (32:31):
Yeah, all three of those books are about the pressure
marginalized people face in society to be something that they're
not and how self destructive that is. Laziness does Not
Exist is all about the demand that we just constantly
work all of the time, when nobody's body and mind
is built for that, but especially not if you're disabled
or if you have some other marginalization. I'm Asking Autism
(32:54):
is obviously about the disconnect between having a neurotype that
marks you as other and the demands of a world
that says you have to cover that otherness up. And
both of those experiences, masking and chasing after productivity are
really shame fueled experiences, and so unlearning shame is really
about how all marginalized people we internalize a lot of
(33:15):
the stigmas that are put on us, and we do
a lot to close ourselves off from building community and
building stronger networks of power that will tear these systems
of oppression down because we've decided, instead of the systems
of oppression being the bad guy, that it's our fault
for not being a good enough queer person, a hard
enough working autistic person, somebody who's overcoming their disability or
(33:37):
whatever it is.
Speaker 1 (33:39):
Okay, well, thank you so much for speaking with me,
and thank you so much for reminding me to record
the interview.
Speaker 6 (33:44):
That would have been terrible, could.
Speaker 1 (33:47):
Not be me doing a live thing.
Speaker 7 (33:50):
We got it, We did it.
Speaker 1 (33:51):
I really appreciate you making the times Yeah you too.
Woven throughout unmasking Auto Devin references and exercise of values
based integration process. It's an exercise developed by a specialist
named Heather R. Morgan. One part of the integration exercise
as a prompt to recall times in your life when
(34:13):
you felt truly alive. Remembering these moments is supposed to
help you find your why why unmask It's to help
you locate your personal core values so that you can
be guided by them instead of beholden to the values
and expectations the often arbitrary rules that we sometimes inherit
without choice. If masking is a kind of alienation, the
(34:34):
state of being hidden even to yourself, then integration is
the opposite of that. Whether you are autistic or neurodivergent
or mad, unmasking and integration are both useful frameworks. And
maybe you're already practicing unmasking.
Speaker 2 (34:49):
So now what?
Speaker 1 (34:51):
Since we had this conversation in early summer, devn Price
has announced a sqel to unmasking autism called Unmasking for Life,
a book about what happens after you realize as your
neurodivergent and need to organize your life accordingly. I also
asked Devan what books has fired his own unmasking journey.
A link to all of this as always and the
show notes. Basketcase is a production of molten Heart and
(35:21):
iHeart podcasts. This series was created and is executive produced
by Jasmine j T. Green and it is hosted, produced
and sound designed by me n K Nicole Kelly. Special
thanks to doctor Devon Price, whose work informed obviously this
episode and also our previous episode on neurodiversity. Production support
by Siona Petros and Ammani Leonard. Adrian Lilly is our
(35:44):
mixed engineer. Our theme is blue and orange by Command Jasmine.
Our show art is by Sinay Rolson, fact checking by
Serena Sold. The legal services provided by Rowan, Maren and File.
Our executive producer from My Heart podcast is Lindsay Hoffmann
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