TPGA is observing Autism Acceptance Month by featuring accounts from autistic people about the differences accommodations (or lack thereof) make in their lives.
Today we’re interviewing autistic author Corinne Duyvis about her new science fiction novel On The Edge of Gone, in which a biracial, autistic, cat-loving teen girl is forced to fight for the accommodations she needs during a post-comet strike apocalypse — and if she’s going to make it on one of the spaceships that may be humanity’s only hopes for survival.
|[image description: Book Cover: Teen girl with her
back to the camera, in front of an urban landscape
with departing spaceships. Superimposed text
reads “On The Edge of Gone, Corinne Duyvis.”]
Thinking Person’s Guide to Autism (TPGA): On The Edge of Gone’s main character is
Denise, a Dutch autistic teen girl trying to survive what very well may be the
end of the world. Dystopian narratives and generation ship stories rarely
overtly include autistic protagonists; was having Denise be autistic a disability
politics-charged choice, you grabbing the opportunity to write what you wanted
to read, or both?
Corinne Duyvis: Both, definitely.
I had wanted to write a novel with an autistic protagonist
for a while, but was never sure in what kind of story. I had also been itching
to write a novel with a (post-)apocalyptic setting that explored the role of
disabled people in these narratives. It seemed like an interesting topic to
explore in fiction; it wasn’t purposefully political, although no doubt my work
in disability politics played a part in that interest.
Eventually, I had a third, unrelated spark of an idea about
the in-between stories of the apocalypse. After all, when we see
destroyed worlds, we usually see only the aftermath. When we see future
societies, they’re often centuries away and dystopian in nature. When we see generation
ships, they’re typically set so long after the ship has left Earth that the
planet has become almost mythical.
I wanted to ask: what about before all that? What about the
destruction itself, about futures that aren’t dystopian, and aren’t utopian, but
simply our world a couple of years onward? How did these generation ships ever
reach lift-off, given the chaos on the planet? Who gets on the ships, and who
makes those decisions? What kinds of preparations would you need to make? What
kinds of problems could you run into?
And what might be happening on the rest of the planet while
all this goes down?
These topics are touched on in sci-fi, but not very often,
and I was interested in giving my own spin on them.
This idea fit perfectly with the other elements I’d been
wanting to incorporate into my novels. And tah dah: On the Edge of Gone was born.
TPGA: Denise’s mother is
white, while her father is Surinamese. You note at one point that it’s amazing
Denise was even diagnosed, given that she’s biracial and a girl. Why did you
feel it was important to point out these specific areas of under-diagnoses?
Duyvis: If I was going to have a biracial autistic girl as the main
character, I needed to be honest about her experiences. I can’t just write my
own experiences as a white autistic girl and pretend that those experiences
will apply to everyone.
Too often, the typical image of autism is “young white boy,”
which leaves others — who are just as autistic but who may present or be
perceived differently due to cultural and other factors — to be overlooked or
misdiagnosed. For example, girls are often expected to perform better in social
situations, and thus often manage to learn certain social skills or methods of
blending in. Meanwhile, autistic
kids of color face all kinds of challenges, often having their problems
swept aside, misdiagnosed, or labeled as misbehavior. An autistic girl of color
like Denise gets a double whammy of difficulty.
Don’t get me wrong: I don’t think it’s my place to write
about The Black Autistic Experience™. That’s not my story, and I don’t want my
privileged position to shout out the voices that need to be heard more. At the
same time, I don’t want to contribute to the perception of autism as a white
condition only, or write a book about how certain people’s lives are devalued
and pretend disability is the only axis that kind of oppression happens on.
TPGA: At one point Denise’s sister Iris declares that Denise’s role is to organize info, and Denise is delighted to have
her skill both recognized and called out. Is this something that’s happened to
you personally, or a comment on non-autistic people’s general tendency to
underestimate autistic abilities?
Duyvis: It certainly has happened to me; I don’t know if it was
necessarily related to my being autistic, but I can one hundred percent relate
to that feeling of delight. When you’re insecure, it can mean the world to have
someone so casually mention your talent — like it’s not even surprising to them,
but a given.
Although Denise is aware of her strengths, she’s also so uncertain
and self-deprecating that she sees her weaknesses amplified. This is especially
highlighted in a situation like the one in On
the Edge of Gone, with people literally judging her by her abilities and
As a result, she’s starved for approval. A compliment means
a lot to her, even if she isn’t always sure whether she trusts it or how she
should respond. And a compliment from Iris — Iris, who Denise looks up to, who
Denise thinks sees her only as her needy little sister — that means even more.
I tried to be conscious throughout of how I approached
Denise’s character. There’s the tendency to underestimate autistic abilities,
which I wanted to both acknowledge and criticize, especially as it has led to
Denise doubting her own judgment and blaming her autism, even in cases where
she’s in the right. There’s also the opposite tendency, which is to believe
that all autistic people are automatic geniuses.
I didn’t want to write Denise
in a way that played into either of those assumptions. She doesn’t need to. She
can just be human. Her skills and weaknesses don’t cancel each other out; they round each other out.
TPGA: There are a few people throughout the
book who recognize that Denise just needs space and to do things the way that
works for her, whether or not they openly recognize her as autistic. How much
of a difference does giving space make for you, both now and when you were
Duyvis: A lot. I rarely had space growing up; I was constantly under
external pressure to do absurd amounts of schoolwork — and internal pressure to
be good at it, too. That did a number on my mental health. I ended up leaving
high school at the age of fourteen, and enrolling in a private art school
(technically adults-only) instead.
I was good at most of the classes. I learned how to
manipulate charcoal like a pro. I could also work with ink, soft pastels, pen,
a computer tablet, pencils…
The materials that gave me trouble were clay and paint.
When I couldn’t take it anymore and felt myself slipping
back to the way I’d felt in high school, I reached out to the teachers and
principal. I didn’t know what kind of solution there could be, but I needed to
do something. I was prepared to plea and
to invite my mother to the school. She could vouch for me. I felt too
self-conscious and guilty to talk about the problems I was having, especially
as a teenage girl who surely nobody would take seriously. It felt like I was
failing yet again, or making things up. Having my mom there to back me up would
prove — to both others and myself — that I wasn’t just being difficult.
“Oh, no need to invite her,” the principal said after I
offered. “You’re doing a good job of explaining the situation yourself. Go on.”
He simply listened. He believed me.
And instead of sculpting, I switched to a life drawing
Instead of working with paint, I worked with soft pastels.
Instead of the art history homework that I struggled with, I
got to write an essay on a related topic of my own choice.
Instead of vague, unclear summer assignments, I got a
clearly structured one: one self-portrait and one still life per week.
I changed wildly over the course of those years. Having
space to recover from my high school trauma, to pursue what I loved, and to
develop myself, was vital.
Now that I’m an adult, no longer in school, and living by
myself, the challenge is for me to
keep giving myself space. As a
perfectionist with a zillion ambitious ideas at a time, that isn’t always easy,
but I’m learning. Bit by bit.
[image description: author photo of a young white woman
wearing black-rimmed glasses, with short magenta hair.]
TPGA: During one tense exchange, a
generation ship passenger accuses Denise of “not really being autistic,”
because she has useful skills and can hold conversations. What do you think is
a reasonable response to such accusations?
Duyvis: Well, my response as a teenager was to run out of class and
have a minor panic attack. I’m not sure I would recommend that approach.
I face disbelief and surprise on a semi-regular basis, as I
can pass as neurotypical on the surface. After years of online autism activism,
I suppose this would be my ideal response: “Actually, autism can manifest in a
lot of different ways. Not all autistic people struggle with [insert skill
here], although you wouldn’t believe it from the way TV tends to portray us.”
If they push: “Well, I’d rather take the word of my psychiatrist on this.”
Just because it’s my ideal response doesn’t mean I always
succeed at saying it, though.
Typically, my initial urge is to start listing symptoms in
the hopes of proving myself to a complete stranger, but I’m working on
squishing that urge. It’s not about convincing them that I fit their limited
definition of what autistic people are like. Correcting that definition is much
That said, we can’t always be helpful. Sometimes, walking
away instead of getting embroiled in an argument or Autism 101 is the healthier
TPGA: Changing circumstances and trust
breaching throughout the book lead to Denise having to constantly revisit
life-altering decisions, and the stress eventually leads to her shutting down.
How did you balance portraying her shutdown accurately, while still maintaining
apocalyptic urgency around her?
Duyvis: This was very tricky throughout.
One thing that I found as a both a teenager and adult is
that stress, mental illness, autism, and trauma can make a person very
self-absorbed. I don’t mean that in a judgmental way; it’s simply hard to be
invested in your surroundings when so much of your mental energy is used up by
other things. Your brain is
constantly nagging at you, dragging you down, going in circles, dragging you
back to places you don’t want to go.
Portraying that in fiction without making a character seem
completely self-absorbed is difficult.
In a setting where the world is literally ending? That makes it even harder.
Throughout, I tried to balance Denise’s increasingly fragile
emotional state with the external destruction and drama, which worked mostly
because they’re so closely related. But when she reaches a certain point and
can’t handle it anymore, she needs to withdraw. She curls up. She shuts down.
At that point, she won’t be the most perceptive person around. The best thing I
could do was make sure that I had thoroughly established her world and the
situation, so that when the narrative shifted its focus, readers could fill in
the blanks with only minor prompts on my behalf.
TPGA: Denise’s mother is a complicated figure, and not a person Denise can rely
on. Was it important to have Denise need to depend on herself, and herself
That’s not the reason I wrote her mother the way I did, but
it’s why there aren’t other adult relatives around to help.
Denise has been troubled in one way or another her whole
life; as a result, she has turned inwards. Most of her energy simply goes
towards guarding herself and surviving school. She builds up walls and fights to
maintain those walls every day so that she won’t crack, while others care of
her and handle the daily obligations and emotional labor. After all, she’s
sixteen, she’s the youngest, and she’s autistic; in her family, her role is to
be The One Who Needs Help.
The comet changes all that. Their lives are disrupted, and Denise
knows she won’t be able to rely on her family. As complicated as her world can
be, the comet simplifies it: if she wants to survive, she needs to (a) break
out of that role and (b) take action.
If her mother had been present and reliable, she wouldn’t
have felt that urgency and certainty, and she wouldn’t have done half the
things she does in the book. As it is, she’s on her own. Her mother can’t protect
her or talk sense into her. Her father is halfway across the world. Her sister
is missing. And no one on this ship would value a girl like her.
She changes because she sees no other way, but that doesn’t
mean it’s easy — or healthy.
TPGA: Oh, the kitties.
Denise connects with them so beautifully. Is this kind of deep connection
something you’ve personally experienced?
Duyvis: I’ve grown up with cats, and when I moved out onto my own, I
was over-the-moon excited to select my very own cat for the first time. I went
to the shelter and asked for a “project,” since I knew I could
provide a good home for a troubled cat. What I got was Terra: traumatized and
terrified. She snaps awake when the neighbor’s key enters the lock. She spent a
week hiding under a blanket after a repair guy had to do work in the bathroom. She
completely lost it when my mother tried to put her in a cat carrier, biting
both her hands, which led to a serious month-long infection.
This fear is such second nature to her that even after three
years with me, she can’t simply walk past me. She has to dart past or give me a
wide berth. When we’re in the hallway together she’ll scramble to escape into
the living room because the hall is too confined.
But when I approach her — calmly, letting her know I’m
coming — she’ll do that slow cat-love-blink and curl up to expose her belly. When
I sit on the couch, she’s on my lap and fully settled in .2 seconds flat. When
I pick her up, she puts her head on my shoulder and purrs.
It’s both intimidating and amazing to know I’m the only
person in the entire world she trusts.
And when you’re young, scared, unsure of anyone, and feel
like you’re about to crack, sometimes an animal is the only one you can trust,