You Don't Look Autistic

You may have said this yourself.  It may have been said to you.  You may be wondering who the heck says such a thing.

For those of you who haven't run into this statement before, it typically pops up when a person "comes out" as autistic to a friend, family member, coworker, or whomever.  The person to that point never thought of this person as anything "out of the ordinary" and so they respond by saying this infamous sentence.

You don't look autistic.

Many of us are frustrated or angered by this statement.  Rightly so.  It feels dismissive.  It feels like we are disbelieved, or like we aren't autistic enough to receive any consideration for our needs as autistic people.  It feels like a slap in the face when we were trying to share a deep, emotionally centered part of ourselves.  Telling you that we are autistic isn't something we take lightly.  For many of us we have put a lot of time and energy into thinking about and preparing ourselves to tell you this important part of us.  Receiving this response hurts.

But I think that it is incredibly telling.  It says something about society.  About our culture.  It says, loud and clear, that most people have no idea what autism actually is.  I certainly didn't.  The simple misunderstanding that autism has some kind of look feels absurd to those of us who are autistic.  But, being the people we are, we've researched and read up on autism.  We've found communities of other autistic people and reveled in finally feeling home, and understood, and seen.  We finally feel just a little bit less like an alien on this planet.  We have learned as much as we can, as quickly as we can what it means to be autistic, what it feels like.  We have quizzed, we've read stories, we've commiserated, we've celebrated that we are not, in fact, alone.

We have learned that there's not a "way" that autism "looks".  We are a remarkably diverse group.  There's no height, color, weight, hairstyle, face shape, body type, ethnicity, gender or sexuality that defines autism.  We run the gamut.   It's not like the conditions that present with distinct facial features.  That isn't a feature of autism.

So when someone says, "but you don't look autistic" it feels insulting and hurtful.

I want to ask, what do you think autism looks like?  

But instead I'll tell you.

Autism is invisible.  It doesn't look like anything.  And we desperately need the general public to be aware that autism is an invisible condition.  Yes there can be things that we do that hint at it but for those who have become good at masking, an external observer would be hard pressed to identify them as autistic.  Some of those people don't even know themselves..... and I hope they find out soon because I know how they're feeling.  They don't know why they are the way they are.  They don't know why they've been consistently rejected.  They don't know why they just can't do what they're supposed to do, or why they occasionally act ways in public that embarrasses their friends or family or even gets them fired, though none of that is their intention.  They don't know. They think they're bad people.  They're at a high risk for suicide.

I sincerely hope they find out soon.  This is why I feel, of all the types of awareness campaigns that have existed, autism awareness and education of the public is critically important... some of those potential suicides may be prevented, and the anguish and loneliness people feel can be unraveled.