by Bobbi Duncan-Ishcomer from This Sort of Life
The Purgatory of Passing: I AM Like Your Child
Who is that girl reflected in the shop-front window glass?
It can’t be me.
That girl is standing still; arms to her side, hands not flapping, fingers not fluttering. She doesn’t make noise for noise-making sake. She is coordinated. When I smile, she smiles back. She even looks me in the eye.
That girl can’t be me.
My mind races with a thousand anxious thoughts that flow out through my fingertips as they drum against my leg. I’m the girl who shrinks when noises are too loud and lights are too bright. I’m the girl who isn’t quite sure whether the words coming out of my mouth are an appropriate response to your question, or whether they’re just all I have to say.
I’m a girl who doesn’t fit in the world. A Native American girl. A lesbian girl. A disabled girl. An autistic girl.
That white, straight, physically able, normal looking girl— she just can’t be me.
But here I am, even if I don’t recognize myself. Even if nobody else recognizes me for who I actually am. Even if nobody sees me, because I look just like everybody else. I am the girl who passes, and that makes me invisible.
What does it look like to be autistic?
Ask any neurotypical person, and I guarantee you’ll get an answer that sounds something like “My friend’s/cousin’s/sister’s/great aunt Hilda’s daughter’s college roommate has a four-year-old son with autism. He doesn’t talk at all, doesn’t like to be touched, and is locked in his own world. He’ll never be able to go to college or get married. Sometimes he screams and runs around for no reason. He never, ever looks you in the eye.”
This is the prevailing image of autism: an out-of-control male child, hitting himself and rocking in the corner. It’s a stereotype. It’s wrong. It’s damaging.
It’s not what I look like. And I am definitely autistic.
Like so many autistic adults, I pass for neurotypical. Sure, if you met me and didn’t know anything about me, you might think I was a bit eccentric. You might label me quirky or odd or, like my eighth grade class, “most individual.” We all know that “most individual” is eighth grade euphemism for “weird little freak,” but even if they’d been honest about what they thought of me, they wouldn’t have ever said I was autistic. In fact, no one ever thinks I’m autistic, even when I flat out tell them.
“But you went to college!”
“But you feel empathy!”
“But you’re married!”
All of those things are true. I went to college, where I had extensive disability accommodations and still had to withdraw for a semester. I feel emotions so intensely that I shut down and can’t talk. And as for being married?
Just ask my wife whether or not I’m autistic, and she’ll be happy to tell you about the time when I interrupted our pillow talk to have a lengthy discussion about grammar, without realizing that it wasn’t an appropriate time to discuss parts of speech. (I’m a linguist. Is there ever a bad time to discuss parts of speech?)
Joking aside, here’s the thing. Unless you get to know me well, you’ll never see that side of me. I’ve learned how to hide it.
As autistic children, most of us were told that we needed to learn how to be like everyone else. Some of us were forced into compliance training or ABA, where we were punished for failing to act neurotypical and rewarded for figuring out how to look “normal.” We were taught that if we didn’t fit in, we would be teased and bullied by both our peers and adults. We learned that it wasn’t safe to be ourselves. At best, they’d just laugh at us. At worst, they’d label us as broken and try to fix us. And rather than having more damage inflicted on us by others because we weren’t living up to their arbitrary expectations, like making meaningless small talk, allowing others to touch us without permission, or being still and quiet, we learned that it was the lesser of two evils to inflict damage on ourselves by stifling our own preferences and instincts, burning through mental and emotional energy to act as expected whenever we were around other people.
Now that we’re adults, with these lessons ingrained, those same people tell us that we aren’t autistic at all. In what feels like the world’s most systematic example of population gaslighting, they taught us how to pass and then told us that we never were autistic (and thus never needed to pass) in the first place.
My wife, who is also a light-skinned Native American, has a name for this. She calls it the Purgatory of Passing. She says that when you look like everyone else, they treat you just like everyone else. You get passing privilege, but it comes at the expense of your identity and community.
What this means for autistic people is that, when we pass, people don’t automatically assume we’re incapable because of how we look or how we’re acting. Passing means that our competence is presumed—something that those who don’t pass as abled must constantly struggle with. When we pass, society doesn’t see us and automatically want to make us go away. When we pass, we’re less likely to be targeted as victims of bullying and abuse than those who don’t.
That’s the passing privilege.
The trade off is this: when we pass, people don’t believe us when we say we’re autistic. We aren’t accommodated. If we fail, it’s assumed that we aren’t trying. When we don’t understand social cues, we’re labeled as assholes. Neurotypical parents of autistic children tell us that we’re not like their children at all and that we couldn’t possibly understand what it’s like to be autistic. To be who we are. When we pass, we’re silenced; presumed ignorant of our own neurology.
Passing truly is a purgatory. It’s living in a place between. Neurotypical people think we’re just like them, so they treat us like we are— but we never really fit into that paradigm, because (shocker) we were never just like them in the first place. If they take the time to get to know us more than superficially, when passing starts to break down, they are quickly disappointed. They don’t know what to do with someone who looks like them, but isn’t. They don’t know what to do when our guards are let down and we start to flap, flutter, and rock.
Sometimes, we don’t know what do with ourselves either. Because just as surely as we don’t live in the neurotypical paradigm, neither do we live in the stereotypical autistic paradigm. We’ve been told so often and so vehemently that we don’t look autistic, so we must not be, that we don’t believe it ourselves. We’re excluded from having our own voices heard because we don’t look autistic enough to be considered autism experts (a position for which only neurotypical therapists need apply, apparently). We aren’t allowed to mentor the next generation of autistic people or to be given credence in our fight for radical acceptance—that wild notion that we’re all perfectly fine the way we are, and don’t need to be cured.
In short, we don’t fit. We are invisible.
Sometimes, when I see myself in a mirror, I feel dysphoric. Autism is such a huge part of who I am, and I don’t “look autistic.” Much like when I came out as a lesbian, coming out as autistic has meant constantly coming out, and having to perform my autism. I can’t just be autistic, I have to be vocally autistic. I have to be louder, bolder, more willing to put myself out there, if I’m going to be seen at all. I have to be willing to be told repeatedly that I’m not the person I know I am, because if I don’t make it a point to tell people, they’ll never know.
At the same time, I feel a responsibility to do these things. I’m autistic. I’m successful. I am all the things that neurotypical parents think their children will never be: educated, married, happy.
The Purgatory of Passing. Because I look like everyone else, I’m not recognized as part of my own group. But because I look like everyone else’s definition of successful, I feel a responsibility to be recognized as part of my own group, to stand up and proclaim, “this is what autism looks like! Stop selling us short!” Because I pass, I have privileges that those who don’t pass (or who have run out of spoons for passing) are afforded. But because I have those privileges, I feel an extra responsibility to use them to make things better for everyone.
But if purgatory is the place I have to be to change the world, maybe it isn’t so bad. Maybe I can work to blur the edges of passing and not passing, to blend the acrylics together to form one painting instead of two, one continuous existence in which there’s no binary of passing or not passing, but instead one autistic with a million different colors. Maybe I can learn to see myself and to be seen.
Here’s the takeaway.
If you’re autistic, and you’re passing, and you’re feeling alone and invisible: you aren’t alone. Your existence is valid. Your identity is real. You belong, even on days when you’ve been told a hundred times that you don’t. If you feel guilty that you aren’t doing “enough,” don’t worry: you are enough. You have the right to exist just as you are, doing as much as you can, or as little as you need, in order to be as healthy and happy as possible.
If you’re a neurotypical family member or friend of an autistic person, and you think autism can only look like that four-year-old boy rocking in the corner: remember that for every autistic child, there is an autistic adult who came before. The people out there working tirelessly for your children, friends, and relatives to be accepted for who they are aren’t four-year-olds. We look just like you. We’re parents, spouses, and coworkers. We’re autistic, and whether we look like your definition of autism or not, we’re the ones who will make the world a better place for the next generation.
This is part of a series of posts addressing themes from the neurodiversity movement and paradigm which will be published during the course of April 2016. To read the rest of the posts, please click here.