Friday, April 8, 2016

On The Edge of Gone: Corinne Duyvis on Post-Apocalyptic Autism Accommodations

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 usefulness.

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 growing up?

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 class.

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.

Corinne Duyvis
[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 more helpful.

That said, we can’t always be helpful. Sometimes, walking away instead of getting embroiled in an argument or Autism 101 is the healthier choice.

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 only?

Duyvis: Absolutely.

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, as well.