How Autism Awareness Goes Wrong

Sarah Kurchak
Apr 18, 2016 · 10 min read
The word NO written in capital letters from a pile of blue and orange jigsaw puzzle pieces with a gray cardboard back. Pictured separated on a white background. Can also be turned upside down to spell ON. (Credit: flickr/Horia Varlan)

The kind of autism awareness that is currently celebrated today was never made for people like me.

Friends, I want to talk to you about autism awareness awareness. We are, I fear, on the verge of an autism awareness epidemic, a veritable tsunami of awareness. Once a relatively rare phenomenon, the ailment, which is most commonly characterized by non-autistic people engaging in public handwringing about autism and/or feeling inspired by those tragically touched by neurodevelopmental disorders, has become increasingly common over the past decade. Some speculate that, within the next few years, as many as 1 in 2 people could have an awareness of autism.

In theory, more people knowing more about autism spectrum disorder would be a good thing. Autistic people, like me, could certainly benefit from the general public having a greater understanding of what our lives are like, and maybe even some genuine acceptance of those lives in whatever form they take. Increased awareness would be an excellent first step toward those goals. But the kind of autism awareness that is currently celebrated in day (April 2) and month (the rest of April) form was never made for people like me. I’d argue that it was never really made with anyone on the spectrum in mind at all.

The most nefarious incarnation of autism awareness is the kind espoused by Autism Speaks, which treats autistic people as little more than props in its various campaigns. The prominent charity’s simple and dishearteningly effective message — autism is bad and it must be stopped — misrepresents a complex condition and identity as a sinister looming specter that can and should be cured. It reduces the people who have autism to damaged, voiceless zombies bringing suffering to everyone who loves them, when in fact we are disabled human beings who might require treatments and accommodations unique to our circumstances. And Autism Speaks’ ends might actually be worse than its means, given that so little of its budget goes toward helping autistic people and their families.

But even when people mean well, or at least better than Autism Speaks, their awareness can actually make life harder for autistics. Although we have a number of allies who do excellent work (and who support autistic voices, who are doing even more excellent work), there are also a lot of allies who want to help but just haven’t figured out where to start. Our societal narrative about disability still tells allistic people — people without autism — that they’re essentially the Mary Sues of life, and everyone else is a Dickensian urchin facing misery and privation because they’re not “normal.” Unfortunately, misreading social cues and unintentionally causing offense are not the sole provenance of autistics, which leads to some terribly unfortunate gestures and stunts. And that, in turn, leads to all sorts of situations in which autistic people — people whose disability is often characterized by social difficulties — must try to explain why said stunts are silly or offensive, with a level of grace and performed empathy that even the most socially gifted person would struggle to get right.

Apart from Autism Speaks and its ilk, I do believe that the offenders genuinely want to help. I think they’d probably be quite sad to realize that their efforts at awareness have turned into a monstrosity of a month that autistic people actively dread, one that we can’t bear to face without the help of detailed self-care plans and brilliantly scathing satire.

This is why I think it’s time to start raising autism awareness awareness. I’ve assembled some of the most painful examples of public awareness campaigns gone awry to talk about why they hurt, what might have gone wrong, and what we can all do better in the future if we really want to advance the cause of autism acceptance.

The Puzzle Piece

The puzzle piece has been a symbol of autism awareness since the 1960s, and the official autism awareness ribbon is adorned with brightly-colored puzzle pieces. I can see where the creators of the ribbon were trying to go with the idea — autistic people are puzzling, we are seeking the missing piece that allows connection, yada yada — but, like many autistic people, I just can’t get on board with the results. Autism can be very confusing and we still know so little about the condition, so piecing together the information and trying to figure out how best to help us survive and potentially thrive might be akin to putting together a challenging puzzle. But it’s presumptuous to imply that anyone has missing pieces just because they’re not like other people, and it’s not kind to choose inscrutability as the defining trait of a population that is often working its ass off to be better understood. And while it’s nice that someone tried to use an array of colors in the ribbon to represent that autism is a spectrum, and all of us who are on it are unique individuals, the end result can be downright painful to look at when you have sensory issues, as many autistics do.

It would make a great autism awareness awareness ribbon, though. As a symbol of autism itself, the puzzle piece has issues, but as a symbol of the problems that arise when you don’t include the object of your charity and attention in your efforts, it’s ideal.

Autism Simulations

I’ve seen an increasing number of videos that try to recreate sensory overload, and I do think it’s admirable that allistic people are trying to find ways to experience what it feels like to be autistic. I’ve yet to find a simulation that really gets it right, but I think there’s enough realism in a lot of them to help other people try to imagine what sensory and social issues might feel like. Done properly, this approach will help people develop some true empathy for us. It has to be done with care, though, and done in a way that doesn’t descend into voyeurism, patronization, or borderline-meaningless weirdness.

Take the Center For Pediatric Therapies’ World Autism Awareness Day celebrations at the Danville Science Center in Virginia this year. The center put together a number of activities to help other people gain a better understanding of autism through personal experience, including a tasting station that “allow[ed] someone to experience a variety of tastes that typical individuals may be able to tolerate, but for a child with autism it will be very noxious.”

At worst, enjoying a bunch of foods that might trigger serious issues in an autistic person (autism doesn’t disappear when we’re no longer children) kind of feels like rubbing it in to me. “Hey, check out this shit you can’t do!” is not particularly compassionate awareness-building. At best, doing something that an autistic person would struggle with is called just continuing to live your non-autistic life, and I have no clue what that teaches anyone. If you hopped on public transit and didn’t have a panic attack because you didn’t notice that someone was chewing gum 10 seats away from you and you weren’t terrified that you were misreading at least 16 different arcane and unwritten rules of using a bus or subway, you would be doing something that I can’t do, but what would that actually tell you about my life? And how would that benefit either of us going forward?

Until we come up with an autistic equivalent to that pregnancy-simulator belt, the best way to try to understand autistic people is to learn about us. Read about us — and, most importantly, read our own work — from as many sources as possible. Challenge your preconceptions of what constitutes a tragedy in our lives and what doesn’t. Believe us when we try to explain to you what will and won’t help us live in your world.

Locked In For Autism

An initiative of Cauldwell Children, a UK-based organization that helps disabled children and their families, Locked In For Autism involves a volunteer hanging out in a custom-made glass box for 50 hours while people gawk at them and share messages of inspiration. For autism.

“Many parents of autistic children have confirmed that the box is a metaphor for autism,” the official site for the event explains. “The isolation, difficulties with communication, feeling of ‘being trapped’ and being misunderstood are all often associated with the condition.”

It’s telling that the organization explicitly states that parents agreed with the metaphor, because I can’t imagine that many autistic people themselves would be on board with this representation. Autism often comes with the aforementioned issues, but how does the world’s weakest David Blaine tribute act call attention to that? And why do non-autistics keep insisting on describing autism in terms of what we’re trapped in — be it our own bodies or a metaphorical box — when we so rarely if ever describe our own lived experiences that way?

Stunts like this could be easily avoided by including autistic people in whatever conversation goes into developing them. But if you really want to do some questionable performance art in the name of awareness, I suggest standing outside of a Locked In For Autism box and staring at it for 50 hours. That’s a far more effective metaphor for autism: watching other people do inexplicable things, wondering if and how we should respond, and also wondering how it is that other people like that are considered the normal ones.

Jail 4 Bail for Autism

Getting mock-arrested and not leaving your fictional cell until you’ve raised a certain amount of autism charity money in “bail,” as Executive Director of Autism Western Cape Gerhard Pieterse did in 2008, has all of the downsides of Locked In For Autism with one terrible, ignorant bonus: It doesn’t take into account that the legal system can be quite dangerous for a population whose behavior is often misread as non-compliance. Given that autistic children and adults, particularly autistic people of color, often face arrest, imprisonment, and even death for being autistic in public, a jokey bail fundraiser is in incredibly bad taste. If you ever find yourself wanting to do something like this, just stop. Throw that energy into bringing awareness to the serious danger autistic people face in the legal system, and supporting activists who are trying to educate people in positions of authority to help keep autistic people safe.

Television Appearances

It’s wonderful when popular kids want to help out autistic kids and protect them from being bullied, but when other people start to praise the popular kid for their incredible efforts, the pain of that recognition can almost be as painful as the bullying itself. As a formerly bullied kid, I can tell you that one of my greatest fears was that people were only pretending to like me for reasons I couldn’t work figure out or understand, and that I would eventually be humiliated when their true motives were revealed. If someone I thought I could trust was then praised for talking to me — as if there was no possible way that they could like me for me, as if they were simply committing a massive act of charity — it would have destroyed me. It would still destroy me if it happened today.

That’s exactly what happened to a young boy named Graham when his older, popular friend’s mom wrote a letter to the Today Show all about how great her son was for deigning to befriend an autistic kid. Kathie Lee Gifford fawned over the non-autistic boy. Someone sang a song about how tragic Graham was and how great his buddy Zach was for looking past that. And, as Graham sat there and watched this nightmare, he began to cry.

It’s unlikely that anyone involved in the production wanted to make an autistic kid break down on national television, but it’s obvious that they never once stopped to consider his feelings, either, other than to assume that he must be grateful for any attention whatsoever. Even when that attention came in the form of a segment so clueless that it feels like a Mr. Show skit.

Ellen DeGeneres struck a much better tone when she had Sam, the autistic barista who became the star of a viral video earlier this year, and his boss as guests on her show. Although it’s not a perfect segment, DeGeneres does a really impressive job of treating Sam like the human he is, giving both men props, and presenting their relationship in a way that neither diminishes nor unfairly deifies either of them. It’s such a refreshing and promising way to present a story about autism in pop culture, and I really hope that we see more of this kind of work in the future.

I still believe in the potential of autism awareness as a concept, but before allistic people can focus on raising awareness, they need to focus on experiencing it. You have to contemplate and integrate that understanding before you try to pass it on to anyone else. So listen to autistic people before you start any initiatives. Listen again if we’re uncomfortable with the things you’ve already done, and don’t ask us to watch our tone or try to blame our autism when we do so. We’re honestly doing our best to explain how you’ve hurt us, and we’re allowed to be exhausted and exasperated given how often it has happened in the past.

I would love to live in a world where allistics and autistics can come to some sort of understanding on the ways in which we behave and experience the world differently, and we can all live safer and happier lives as a result. I still think that autism awareness has some potential to help make that happen. In the meantime, though, I’m quite happy to start by trying to create a world in which autistic people are treated with the same patience, respect, and benefit of the doubt that we’re supposed to afford to people who sit in boxes, make us cry, and then expect us to be grateful.

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.

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