You Don’t

n.b.: this piece is a few years old.  it was previously published on a Thinking Person’s Guide to Autism.  I still use it as a way to explain myself to others.

 

 

 

 

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.  28 years of being forced into the neuro-typical 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 neuro-typical 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, and ask ‘so what does that mean to you?’

You just might be surprised at the answer.

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