Airdate: June 4, 2025
Julie Rose: Can being misunderstood your whole life
prepare you to understand the world more deeply?
Dawn Prince-Hughes: I would've found happiness on a
different level. It's been a rough go. I love my mind, and I could have thrived,
I could have contributed to the world in, in a much greater way, perhaps.
Julie Rose: Hey, it's Julie. Welcome to Uncomfy, a
show about sticking with moments that challenge us even when they're
uncomfortable. And I know you're probably wondering, "Why would anyone
choose to be uncomfortable?" But I know from personal experience, and you
probably do too, that sometimes a little discomfort has benefits if we can stay
open and curious about it. And that is what we are here to
explore, so let's get Uncomfy.
In the United States, around 1 in 30 kids are identified with autism. For adults, it's about 1 in 45. Awareness about autism has come a long way, thanks to better public health outreach, more screening and strong advocacy efforts. But even with all of that, there are still many adults out there who may have autism and have never been identified or were maybe misdiagnosed earlier in life. Well, today I'm joined by Dawn Prince-Hughes. She's an anthropologist, a primatologist and author, and she currently serves as co-chair of the Cultural Autism Studies Program at Yale. She was identified with autism at the age of 36. Dawn, welcome.
Dawn Prince-Hughes: So good to be here, and I love the
concept of getting uncomfortable.
Julie Rose: Well, it's something you know very well, I'm
sure, which we'll dig into. I, I need to start by saying that you wrote a
really beautiful memoir. It's called "Songs of the Gorilla Nation: My
Journey through Autism." You were about 20 when you started working with
gorillas at the Woodland Park Zoo in Seattle. How did that come about?
Dawn Prince-Hughes: Yeah, so I, I had to leave home at
about 15 or 16. The bullying, I, I mean, I don't even like the word bullying.
I, I mean, torture is really, I think what we should start using 'cause that's
what it is. Um, I, I was so weird and so, uh, so different and unapologetically
so that I, I dealt with some actually life threatening situations.
So, I ended up leaving
home, uh, in my mid-teens, and I wandered around. I was homeless off and on for
about five years. Uh, I ended up in Seattle. Um, as you know, and this is still
common, uh, among autistic youth that are homeless, I ended up in the sex
industry to survive. And the, the weight of the city, the lack of nature around
me, the disconnected nature of, of the industry just was sucking my soul. So, I
realized I needed to find nature somewhere and, um, I ended up going to the
zoo, which was really difficult. Uh, for most people, you just hop on a bus,
right? Pay your fare, get there, pay to go in. All, I mean, all that was a
nightmare for me, but it underscores how much I really needed to be around
living things with a primal soul. So, I walked around looking at other animals
and, and then I turned the corner and saw the gorillas, and I just knew
instantly that these were people who would understand me and that I would
understand them, and that started a very long journey.
Julie Rose: You spent so much time there that you, they
ultimately gave you a job to observe and help,
Dawn Prince-Hughes: yeah,
Julie Rose: help the people,
Dawn Prince-Hughes: yes, yes. I mean, to their credit,
I, I pestered them mercilessly and they, they ended up doing the positive
thing. I'll always be grateful.
Julie Rose: Yeah, so what's, what's so fascinating and
really beautiful is how you describe these, gorillas teaching you how to
interact with humans, with other people around you, and sort of helping you
understand things that you had really struggled with. So you mentioned that you
were " weird," I think is the word that you used. What, what were the
challenges that as you started to watch and observe the gorillas that you, you
started to learn from them, what was something that that came through to you that
could be helpful in your own life?
Dawn Prince-Hughes: Well, first I'd like to say that,
early in my career especially, I was criticized for anthropomorphizing, uh,
giving gorillas human tendencies. But in fact, for me, the opposite was true.
I, I had to "gorillamorphize" human beings. There is no difference in
personhood between gorillas. and human beings except that human beings, to a
degree, we, we have more of an ability to make things up and believe them. I do
think gorillas can, can remember and think abstractly, but the ways that
humanity is able to, to make up things that aren't true and believe those
things and use them as tools or weapons for further disconnection is really
singular.
So, the way that I was able to learn how to be a person again
through the gorillas is that they don't weaponize interaction in the same way.
I was telling somebody the other day that etiquette is about the awareness that
people are violent and have to constantly reassure one another that they mean
well. That doesn't seem to be true generally of autistic people, and it
certainly isn't true of gorillas. Uh, there's just a sense that we're in it
together and anything we do, anything we say is taken as, prima facia, being
for the good of the group. And in those conditions, I was able to relax and
learn why people react the way they do to different things. So, I approach my,
uh, interactions with human beings on a very primal level, even still.
Julie Rose: So, when you say you approach people in a
primal way, what was something that you observed some kind of a social
interaction between gorillas that for you was a light bulb and you are able to,
and helped you then to interact with other people? Can you recall a specific
behavior?
Dawn Prince-Hughes: No, it wasn't like that. I, I think,
I think what it was was that I had always had the propensity to interact with
people on a primal level, and the gorillas validated that. So, there were
certainly individual lessons about why people, uh, what's funny. Like, there
has to be some fear there. Humor is based on just this, a tiny bit of fear that
turns out okay, if that makes sense. You know, so I'd, I'd see the, the
gorillas jump out and scare each other to play, for example. And I think,
"Oh, that's, I get more about human humor this way, like, that there's
this underlying fear." So, yeah, little things like that certainly, but
just in a general sense, they, they validated my orientation toward connection.
Julie Rose: Hmm, yeah. There's a beautiful story you
describe where you touched hands, touched fingers with a gorilla. Would you
tell us about that and why that was so meaningful to you?
Dawn Prince-Hughes: Oh yes, Congo, who is, to this day,
uh, the person I've been closest to in this life, a 500-pound Silverback man. I
was laying strawberries out for him along the windowsill, and he was sort of
reaching through the grating there, flicking the strawberries into his mouth
with this ginormous finger. And, um, and he could eat faster than I could put
them down, so, at one point, our fingers touched, and it was one of the most
spiritual moments in my life because I, I literally felt the 5 million years
between us sort of telescope, almost like, um, an event horizon. If I can use,
if I can use physics to describe it. We were suddenly connected in space and
time in a way that completely opened my perceptions on my heart, and I know he
felt it, too. You know, they say you're not supposed to look in gorilla's eyes,
but I do it frequently because they see me. There's nothing there to hide,
there's no aggression there. I'm an open book, and in that moment we were
looking at each other's eyes and it was a mutual experience.
Julie Rose: Dawn, you were, um, as I mentioned, you were
36 when you were finally able to sort of identify, "Oh, I'm
autistic," and, and to sort of, and to get a psychiatrist to validate for
you that we'll talk in a moment about what that process took for you, but prior
to that point, you struggled with, um, reading social cues. You, you describe
also struggling with a lot of sensory overload and having, may, may, just
describe a little bit more now in hindsight, sort of what you recognize as the
markers of autism that made it challenging for you to exist in the world.
Dawn Prince-Hughes: Sure. Okay, so here's the Uncomfy part
is that people, human beings just do not know how to tell the truth. I remember
the first time I saw those icons that they try to use to teach autistic kids
happy face, sad face, mad face. And so, you're supposed to believe that when
someone has that on their face, but you feel that that's a lie. And so, it's
very confusing because you get taught you're supposed to support the lie. If
someone is smiling, you're supposed to proceed as if they aren't dying inside.
If someone's angry, you're supposed to pretend that they're not afraid. It just
doesn't work. It doesn't work, so I don't think that the problem was so much
with me or other autistic people. The problem is in the level of masking and
I'll, I'll be generous and say unconscious deception in humanity.
Julie Rose: And this is what, this is what you didn't
see in the gorillas. They, they weren't hiding, they were being transparent,
and, and that's part of why they made so much sense to you.
Dawn Prince-Hughes: That's right.
Julie Rose: Interesting. Okay, so let's talk about then,
um, coming to be identified as autistic. Why didn't it happen earlier? Why were
you, why had you not seen a psychiatrist, for example, as a child?
Dawn Prince-Hughes: So, I was surrounded by a lot of
people who themselves were weird, and I use that in the original form, kind of
magical. Um, being around those people, we just cut each other a lot of slack
for one thing, and so when I started going to school, I had some people feel
like, you know, when I got to college that I was odd, but it was attributed to
my intelligence, so then I was again able to go under the wire. But then when I
met my partner, uh, it was really clear there were other things going on, and
even then I, I sort of limped along. But after Congo died, I kind of fell apart
and started having a lot of meltdowns, and so my partner threatened to leave me
unless I figured out what was going on, and with autistic alacrity, I set
myself to the task. I learned, learned all about it, got files together,
interviewed everyone I ever knew. By the time I actually called a
diagnostician, I had a sheaf of papers about an inch and a half thick that was
irrefutable, right? So, she laughed about that because I was basically doing
her job for her. She's like, "I could have told you you're autistic
because you did that." She's like, "That's such an autistic thing to
do in the first place."
Julie Rose: And how did it feel to have that
identification?
Dawn Prince-Hughes: I was overjoyed at first, and this
is a common pattern, actually. At my cultural program, we've figured this out
that people's first, uh, reaction is a sense of great relief, validation, a
sense of peace. Like, "Oh, of course." Uh, and then you start going
through the grief process because you realize people have been mean to you your
whole life over something you couldn't help, something you shouldn't have had
to help because it wasn't really a problem. It was a problem of context, not of
self. So, you go through anger, and you go through, you know, especially those
of us who are identified later in life have an enormous amount of grief about
lost opportunities, CPTSD, and you know you're never gonna get it back. You
know you're never going to get it back, and that's a difficult thing to
surmount emotionally. Uh, but what's been healing that, and I'm sure we'll get
to it, is, um, this sense of cultural belonging together.
Julie Rose: I do wanna talk about that. Um, would you
mind sharing something, Dr. Prince-Hughes, that you think would have been
different? What might have played out differently? Is there something that you
think back on in your childhood or young adulthood where, "Oh, if only I'd
had that autism identification earlier, I wouldn't have gone through
that?"
Dawn Prince-Hughes: Sure. I think it runs from the
simple to the profound. I simply would've been happy. I would've found
happiness on a different level. It's been a rough go. I mean, I'm not just
speaking for myself. It's torturous. As we said earlier, the, the bullying, the
ostracizing, the self-doubt sometimes. So, there's just simple, the simple
happiness factor all the way to, I love my mind, and I could have thrived, I
could have contributed to the world in, in a much greater way, perhaps.
Julie Rose: Simply if you had understood? So, so just
knowing that this, that you were programmed differently, that it wasn't a
defect of some sort, that that would've allowed you to sort of be more
comfortable in your, in your skin and in the way of being that you were?
Dawn Prince-Hughes: Yes. No one can survive or thrive as
a culture of one. This is the power of culture. But, you know, there's this
pervasive myth that autistic people have a difficult time with social cues or
connecting, and that is so, so, so wrong. If I could get people to take one
thing away today, it's that we thrive together. And it's so interesting from a,
an anthropological perspective because whether someone's from Kenya or Portugal
or Brazil, we get online and we understand each other past our parent cultures.
Julie Rose: There's this sort of, uh, unspoken awareness
that we're in it together. It's this, um, non-hierarchical, egalitarian,
connected sense that we are larger than the sum of the parts, that we together
make up this larger mind in the ether,
Dawn Prince-Hughes: and that we want to know the truth.
We wanna know the truth at any cost. We wanna know the truth about ourselves.
We wanna know the truth about how the world works. Uh, we wanna know the truth
about how to be better and, and how to pursue justice. And that takes an
obliteration of Ego to a certain extent. Not that you lose, totally lose
yourself, but it's an expansion into something greater that's alive, and
everybody gets that. It's a beautiful thing.
Julie Rose: So, what kind of change societal or
political or otherwise would allow for more autistic individuals to find their
people to, to learn of their identity, to be identified as autistic and to be
able to thrive in an autistic culture?
Dawn Prince-Hughes: We need autistic involvement.
Obviously, nothing about us without us. I'd love to see panels of autistic
people really, you know, be in charge, or at least in cooperation with
diagnosticians who don't understand it from the inside out. Secondly, and this
is the Uncomfy part again, we are at the end of the line. Everyone feels
it. We can get mad about politics; we can try to make it about world events.
Yes, and underneath that is this awareness that the earth itself is dying. We
have got to readjust as a whole with everyone to reassessing how we think of
animals and the living environment and our problems, really just everything.
We've got to rethink everything. And through history, this is what autistic
people, I think, have been good at. Whether that shows up in the inventors,
the, you know, the philosophers, the deep thinkers that, that autistic people
can be. We have, many of us, skills to help everyone. That's our goal. That's
why we're, so many of us are obsessed with justice because we feel it all as
ourselves and we want other people to feel that, too, and once that happens,
the whole way we look at problems is gonna shift.
Julie Rose: Dawn Prince-Hughes is an anthropologist, a
primatologist. I highly recommend her memoir, "Songs of the Gorilla
Nation: My Journey Through Autism." She's currently co-chair of the Cultural
Autism Studies Program at Yale. Dr. Prince-Hughes, thank you so much for
sharing your story and for your work.
Dawn Prince-Hughes: Thank you. It's been a real
pleasure.
Julie Rose: And thank you for getting Uncomfy with
us today. I would love to hear how this conversation resonated with you. Have
you ever found clarity through a period of confusion or isolation? Have you
come to understand yourself more deeply by embracing discomfort instead of
avoiding it? Share your story with us. Email uncomfy@byu.edu or connect
on social media.
Uncomfy is a BYUradio podcast. Samuel Benson produces it, and the team includes Hyobin Kim and Sam Payne. Our theme music was composed by Kelsey Nay. I'm Julie Rose. Can't wait to get Uncomfy with you again next week.
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