When Allies Say Tragedy Is The Only ‘True’ Representation Of Autism

Sarah Kurchak
Mar 2, 2016 · 7 min read

I’m autistic — and abject tragedy is not my truth.

II don’t consider myself a particularly private person by nature or nurture. I’m autistic, which has given me, like a number of people on the spectrum, a set of boundaries that isn’t always in line with those of the average neurotypical. I also grew up in a family filled with people seemingly incapable of sharing the simplest anecdote without a detailed personal backstory, and I still take many of my social and storytelling cues from them.

I was similarly open — bordering on guileless — when I started to write first-person essays and op-eds about autism, so I was surprised at some of the feedback that my work inspired. Some people argued that it was clear from my work and description of my condition that I wasn’t autistic enough to have a valid opinion on the subject. A few went even further and accused me of lying about my diagnosis. Others believed that I was on the spectrum but were angered at the way I represented myself; they felt that I “glamorized” autism and was glossing over the more serious issues that people like me and the people who care for us face.

If these comments were the work of trolls, I could have eventually convinced myself to dismiss them. But the majority of my detractors weren’t anonymous posters or Twitter eggs; they were the parents and relatives of autistic children, professionals who worked with autistic people, and self-proclaimed “autism warriors.” In theory, we were all supposed to be on the same side.

So I did what I have always done when my behavior elicited an unexpected response from neurotypicals: I blamed myself, overanalyzed my actions, and went on a focused hunt for any and all material that could help me understand the situation better.

I was initially furious with myself because I felt like I’d failed the cause in some way. I take the tiny role I play in autism awareness very seriously. I believe that the only way to truly represent the spectrum is to involve as many diverse voices as possible in the discussion, and I wanted my one voice in that movement to be as honest and accurate as possible. It sickened me to think that I’d played into the tired pop culture trope that autism is just quirky and fun, or that I’d inadvertently been flippant and Pollyannaish about something that has, for both better and worse, shaped every single day of my life.

I did what I’ve always done when my behavior elicited an unexpected response from neurotypicals: I blamed myself.

But when I reread my work, I didn’t see careless cheerleading or bragging. Yes, I’d argued that my life had value and meaning — as I genuinely believe all autistic lives do — but I’d also mentioned many of the struggles I face both as a direct and indirect result of my disability, including moments of overwhelming sensory sensitivity, depression, meltdowns, self-harm, and suicidal ideation. I didn’t understand how anyone could believe that I was claiming that autism was cool and no big deal when I’d willingly revealed so much about myself.

In an effort to understand what my ostensible allies wanted from me and people like me, I expanded my usual reading on the subject, mostly a mix of work by other autistic writers and texts recommended to me by my pro-neurodiversity therapist, to include media and discussions dominated by neurotypical people with some personal or professional connection to autism. I was disheartened by a lot of what I found.

While there are some wonderful allies out there who are writing thoughtfully on the topic and listening when actually autistic people have something to communicate through whatever means are available to them, there are still more who want to control the conversation with an incredibly narrow-minded and maybe even exploitative narrative. Sadder still, there are a large number of sympathetic people out there who are completely buying into this narrative because they’ve never been exposed to any other perspectives.

Parents live-tweet and film their autistic children’s meltdowns and are hailed as heroes. A former caregiver writes about the hygiene of an autistic man he worked with, including graphic details about trimming the dingleberries out of his pubic hair, and is praised for his no-holds-barred assessment of the epidemic. I can’t argue that these positions haven’t caused awareness, but I worry about whether that awareness ever really extends to more support or even more compassion for autistic people. And even if it does, I wonder if it’s worth the cost.

When allies buy into the belief that tragedy is the only true representation of autism and feel like they must put the most intimate details of autistic lives on public display in an effort to tell the world what the condition is really like, it violates the privacy of human beings who likely haven’t consented to sharing their stories. Moreover, it makes an already vulnerable population even more open to public scrutiny, attacks, and abuse. When autistic self-advocates are expected to participate in that conversation, it puts our health and well-being at serious risk. In the interest of protecting my own autistic life, I refuse to participate in this discourse.

When allies feel like they must put the most intimate details of autistic lives on public display, it violates the privacy of human beings who likely haven’t consented to sharing their stories.

For one thing, abject tragedy is not my truth. I do struggle with autism on a regular basis, and I would go so far as to say that I often suffer from some of its most common comorbidities, like depression and anxiety. But even on my worst day, it wouldn’t occur to me to define my life by them. Good things happen to me despite and because of autism. Neutral things happen, too, and they’re as much a part of my true story as the rest. And even if they weren’t, what good would it do me to represent my disability entirely in terms of the misery it causes me and the people I love? Everyone deserves to believe that their life is worth living. In fact, this belief is integral to a person’s very survival in this world. Autistic people face enough suicidal ideation without being asked to think of themselves as nothing more than burdens to their loved ones, and I can’t support or contribute to any conversation that increases that risk.

I also have my social and financial well-being to consider. If I write about my the depths of my meltdowns, my hygiene, or any other intensely personal thing that gives some neurotypicals a delicious dose of voyeurism alongside their ostensible compassion, that information is tied to my name forever. It will have an effect on how people treat me in my personal life, and how future employers might see me, and it’s probably not going to be positive. I cannot afford to risk my ability to form and nurture relationships and support myself.

I’ve also learned that trying to prove one’s neurology to an autism warrior is a losing battle. There’s no point at which I have ever convinced one of my detractors that I’m autistic enough for their liking. And I’m not sure that a person who needs to hear about my bathroom habits before they’re willing to afford me any empathy is someone I can ever really trust with my secrets, my cause, or my life, anyway.

Every writer has to weigh what they’re willing to share in their work against how they’re willing to live their lives. For me, that includes balancing work that could help to increase genuine awareness with the consequences of revealing uncomfortable or private information in a world that has not achieved a level of autism acceptance that makes it safe for me to do so.

It’s a challenge to find what works for me, both because of my (over)sharing inclinations and the fact that, like many autistic people, most of my social conditioning leads me to trust other people’s requirements over my own instincts. After all, we don’t say that neurotypical and autistic people have different social cues, we say that autistic people don’t understand neurotypicals’ social cues and have to learn how to read and send them. I have come up with one guiding principle from my experience so far, though: A real ally would never demand that I share more about my life; they would be more interested in working toward a world in which I would feel comfortable sharing those things if and when I wanted to do so.

The Establishment

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Sarah Kurchak

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Autism, pop culture, MMA, fitness/mental health, and Man From U.N.C.L.E.

The Establishment

The conversation is much more interesting when everyone has a voice. Media funded and run by women; new content daily.