Kate
It happens, not every day, but often. You’re at a social gathering, feeling good, feeling alive, and this conversation leads to that leads to “Oh yeah, I’m autistic. I have Asperger’s syndrome.” And the almost-inevitable response.
“Really? You don’t look/seem/come off as autistic.”
I can never quite decide if this is supposed to be a compliment or not. To take it as a compliment would mean accepting the premise that to be autistic is something bad, which it’s not, that my social skills are good enough to ‘pass’ for neuro-typical in public and that is a good thing, since people have so many ‘bad’ stereotypes of what autism is and might misjudge me.
Which is weird, because I’m pretty sure that anyone who makes a statement that I don’t look autistic doesn’t know me well, and doesn’t know autism well.
Here’s the thing. I can ‘pass’ for neuro-typical in a public setting for one reason only: training. Years of social skills therapy and intense independent study of my particular culture means that, by exerting enormous efforts, I can make eye contact and small talk. I can resist the urge to stim using whatever is at hand. I can remember (sometimes) to not interrupt, to steer the conversation away from myself, to laugh politely even when I don’t get the joke.
I was born into this culture, but not of it. My brain is wired for a different language, for a more straightforward world where people say what they mean and mean what they say. Twenty-eight years of being forced into the neurotypical box means that, painful as it is, I acknowledge that life is easier for others when I follow typical social rules. It might hurt to be inside the box, but life is more smooth, and I get places faster, more efficiently.
But the box isn’t me, and far more often that I’d like, I make a mistake, say something wrong, react differently than people expect, and people are surprised, offended, upset. I apologize, even when I don’t know exactly what I did, and berate myself endlessly for the mistake, vow to stay more tightly bound than ever.
“You don’t seem autistic.”
What does it mean to seem autistic? Does it mean I sit in the corner, flapping my hands, or run around wildly, screeching? Is there anything wrong with people who do these things? If I were to invite you into my home, expose my secret routines, rituals, and all-encompassing obsessions, would I seem more autistic then? If you knew me as a child who couldn’t make eye contact or hold a conversation, who had loud, noisy meltdowns where I screamed and cried, would you think that I had somehow learned to put the autism away, to separate it from myself and not be autistic?
Ironically, the situations where I seem the least autistic to people are undoubtedly ones where the majority of people there know and accept me for whom I am, autism and all. At a church gathering where I know no one will get upset if stim a bit, where people will answer my questions honestly, help me when I need it — there, I need less help because the warmth and love surrounding me helps to hold me up. It is when I am forced, all by myself, to conform to a situation that I do not understand, that my quirks and mannerisms become all too apparent and too autistic.
So if I don’t seem autistic to you, I guess that’s good, because it means that I am somewhat at ease in the situation. But do not fault me when my autism ‘slips out.’ Do not get mad at me when I do not conform to your social or cultural mores. Passing for neurotypical and being in any sort of social situation requires enormous effort, so I appreciate your recognition of this fact. But next time, instead of telling people that they don’t seem autistic, why not acknowledge that autism is different for everyone?
