Sarah Kurchak has wanted to be an author since she was in kindergarten. In Grade One, she attempted to write her first novel and, while she only made it through a single chapter, trying to string words, sentences, paragraphs together has always brought Kurchak comfort—and took her to a place where she could be understood. Her characters were always different, outsiders, trying to figure themselves out—much like herself.
When she was diagnosed as autistic, at 27, Kurchak was already nine years into her career. Despite her roots in fiction writing, she found herself writing for Chart Magazine—a music publication—straight out of high school, and has been writing for various publications ever since. Kurchak has bylines in Hazlitt, Catapult, CBC and Medium, among others, and her first book—a collection of essays from herself and various fellow autists—is set to be released in Spring 2020 by Douglas & McIntyre.
In light of Kurchak’s previous work, as well as the Ontario government’s proposed changes to autism support and treatment, the Review spoke to Kurchak about how to be a good ally, diversity within the autistic community, support systems, and what it’s like to work as a journalist while autistic.
First things first: autistic person or person with autism?
I prefer the identity–first language because it just makes sense to me. It’s more stylistic than ideological because “person with autism” is clunky; it feels [like] pandering to me, and it’s just bad prose. I’m not a person with blonde hair; I’m not a person with Canada. It’s just blonde, autistic, Canadian. Some people prefer person-first language and I do respect their wishes, but it’s mostly parents who are not as embracing of autism who want to separate the identity from the person.
It’s a hard [question] for journalists. I’ve been through it with CBC a few times. “Day 6” [a news magazine show on CBC Radio] has been the most positive experience I’ve had across the board where they’ve been very open about saying, “This is what’s in our stylebook, but we have brought you on here specifically because we want to talk to you about autism, and we’re going to respect your wishes.” It’s a rough place to be in and we’re starting to move away from delicate language because delicacy doesn’t always mean equality.
When you were at CBC, you said they brought you on specifically to talk about autism. Did it ever feel like you were being pigeonholed? Did you want to write about other topics?
I was diagnosed nine years into my career, so even though I was never really successful, I have a substantial number of clips that were done before I thought I was even qualified to say anything about autism. For most of my adult life I suspected that I was, but I personally felt like I needed a professional diagnosis before I was allowed to say anything and it was only after that journey that I felt like this is something that I could talk about and wanted to talk about. I was sort of in a rare place for a marginalized writer in that I had clippings in areas of expertise and things that I could take to new publications that weren’t just the autism beat.
Is it particularly unusual that you were diagnosed later in life?
[It isn’t unusual] for my generation and older, especially for women. It seems like really obvious stuff to me now based on what we know but was not in any way what people understood [when I was younger], which was Rain Man, which was, you know, cisgender, white, heterosexual boys who like trains. To this day I actually think, in terms of race and gender, there’s still a disparity in diagnosis.
One of the trademarks of autism is difficulty picking up on social cues. How do you navigate that as a journalist who has to interview people as part of your job?
It’s something I struggle with. I’m not trained as a journalist, I’m trained as a fiction writer that just sort of fell into journalism. I have started to move away from hard journalism because I don’t trust my instincts. I want to be clear that that’s a personal thing because I do know autistic journalists who are great at their jobs, who are able to use their clear analytical thinking to approach an interview and even if they can’t necessarily pick up the cues of someone naturally, they have learned to hone in on them.
I can do a fun interview. Right now I’m setting up interviews around this toy horse contraption that you gamble on in Las Vegas. [I can do that] because there’s no hidden agenda there. There’s nothing anyone wants to hide, everyone that I interview is going to be pretty open about it. I don’t really trust myself to go for anything harder, and that’s just where I’m at as a writer, but also where I am with my own symptoms. It’s just not my strength.
What was it like growing up, knowing you were different, but not really knowing why?
I think part of the reason I gravitated towards [writing] was because it was the one place I had any hope of being understood. I could take time and meticulously express something that was going to come out wrong if I said it. But it’s also left me with no real sense of self, because I grew up thinking that everyone else was right when I made a mistake and I was always wrong, which has been bad for my instincts as a writer. I can never just trust that anything I do is okay so I’m always writing with the anticipation of any imaginary audience I might have. You should be aware of the audience, but I give it too much credence and I think it is to the detriment of my work.
There are plenty of resources for autistic children and their parents, but once those children age out of the system there is a lot less support. What has your experience been like and what needs to be done to better support autistic adults?
The services are non-existent. I don’t think I would have waited until I was 27 if there were a clear way via OHIP that I could have had testing covered, but I had to pay for private testing and I mean, I’m a freelance writer. I could not afford it, so I was like, “Whatever, I’m fine. Obviously if I had autism,” because this is how little I knew at the time, “it’s cured or it’s not a problem now.”
Then I hit a point where it obviously was a problem and my parents decided, “Okay, we have to go pay for testing so we at least know what’s happening.” The services are so bad and there’s so little you get other than [proof of diagnosis]. We’ve put so much effort into how we break these kids down to function in real life and how we alleviate the burden they place on their parents, that we never stop to think that they will still be autistic when they’re adults. Just because they’ve blended in doesn’t mean they’re not going to have their own issues as they grow up.
You have written about portrayals of autism in fiction before. Netflix’s Atypical is a fairly recent example that comes to mind. What do you have to say about the way autistic stories are presented in the media?
More than anything, it’s that we’re still treated as this cool, creative exercise for everyone involved. What we’re seeing is the fantasy of what fairly privileged people think would happen if they didn’t have to worry about being nice, and it’s turned into all these super-geniuses, The Good Doctor, Sherlock, and even the kid from Atypical.
There’s this whole middle to autism that’s not savant, nor non-responsive. Most of us exist somewhere in the middle. I get that neutral doesn’t do well on television. It’s not great for drama or comedy, but you could tell a more complex or a funnier story that’s not just, “Look at this quirky guy that can’t get laid! Look how hard it is for his family!”
I’d also argue that if your life doesn’t include [autistic people,] then why are you wanting to write this? You don’t interact with us as human beings, so what is your motivation?
How can we change the current conversation in order to allow autistic people to be their own advocates?
Like any disability issue, if you’re abled, you have a sense of arrogance that’s put into you. The idea that autism is a tragedy and hard on families is an easy one to embrace and grasp that doesn’t really challenge any sensibilities.
I can’t speak for anyone else who’s doing a better job [with advocacy] because I’m mostly at the stage where all I can do is tell stories from my own perspective, try to quote the right sources, make sure people are as well represented as possible, and just hope that it gets through one person at a time. It seems kind of insurmountable to me right now, to fight against that message.
And as far as the issue of “high-functioning” and “low-functioning,” are those terms that you like to use, or not so much?
I’m not a fan of them. I used to use them because I was under the very misguided perspective that I was acknowledging some sort of high-functioning privilege by acknowledging that I might have certain advantages.
But I [later found out I had been hurtful to people reading my blog]. It was a real shock to my system, so I started reading up on it. The only thing high versus low-functioning really does is tell an uneducated audience whether they should pity someone or dismiss them.
What advice do you have for journalists covering autism?
Make sure you’re talking to at least one autistic source. This is probably going against a lot of what [journalists] have been taught because we’re so often portrayed as not being the experts or authors of our own lives. To do a serious story, I think a lot of people still have the instinct that you go to the “experts” and then you go to the parents because you assume they’re either not able to speak for themselves or that if they can, they’re not that autistic. That removes all autistic voices from being authorities in stories about themselves.
There are certain accommodations that can be taken into account. We all understand that an actual discussion is the ideal form of interview, but it’s not possible for all autistic people. If you can be more flexible about interviews through email, interviews through direct messaging, at least consider that. There’s a whole segment of our population that has so much to say but they can’t in spoken-form or they can, but it’s not going to come out right. You’ll end up with quotes that will do a disservice to both of you that would be better done through ways don’t heighten the challenges and anxieties of autism.
You’ve recently sold your book, so what is that about?
It’s a collection of essays. There was some talk of doing a more straightforward memoir, but I just felt that I kind of suck at doing that. But also, why does anyone need another white girl’s story right now without some purpose to it? Especially in autism, where it’s still such a white portrayal, how can I tell my story without taking up too much space?
We need to look at the things I did wrong because I didn’t have any understanding or any support and learn from them. I want the essays to have a little bit of context for how these issues affect other autistic people so it’s not just all me, me, me. As much as I think first-person is absolutely necessary right now, I don’t want to take up all the space.
This interview has been edited and condensed for clarity.