What exactly does ‘autistic’ look like?
This is a question that puzzles me, because so often I’ve had people recoil in shock when I tell them I’m autistic, and say those dreaded words,
“But … I would never have guessed. You don’t look autistic!”
In their minds, ‘autistic’ must look like something very specific, very conspicuous, very different. Let’s be honest here, they’re probably thinking Rain Man.
I’m a woman. I dye my hair weird colours and wear gothic makeup. I’m married. I’m an historian and writer and artist. I can’t do maths to save my life. I love reading and writing fiction, particularly of the romance variety. I have a strong and sarcastic sense of humour. On the occasions on which they see me, I’m having a good day and am happy to talk with enthusiasm and energy on various topics. I won’t look them in the eye, but I can fake it well enough that they won’t notice unless they are very observant or autistic themselves. They don’t notice me fidgeting quietly or fiddling with my rings, necklaces, etc. They don’t look down and see me moving my feet in invisible patterns on the carpet.
To other autistic people, I am almost immediately recognizable. To the neurotypical world, I am not what is expected of someone who is autistic.
Which begs the question, why, after so many years of the autistic community trying to explain that ‘autistic’ is never just one thing – just one type of person, just one visible recognizable style of being different – why does the world still see ‘autistic’ as a railway-obsessed, male mathematical genius who bangs his head against the wall when he gets frustrated? I don’t at all mean to disparage or discount anyone who fits those criteria, but why don’t neurotypical people understand yet that not all autistic people are the same?
When someone says to us, “Oh, I’m not autistic, by the way,” we don’t turn around with a face of intense surprise and respond, “Oh, my! You don’t look neurotypical!” Everyone understands that human beings are diverse, unique individuals, and that no two people are going to look, sound, or behave in exactly the same way. Even identical twins are known to have some differences, however slight and hard to spot.
Part of the problem, I think, is in the insistence of the medical profession on pathologizing autism. Diseases tend to have recognizable, identifiable symptoms that fluctuate only marginally between diagnosed patients. If someone comes in with a snotty nose, a mild fever, muscle aches, and a throat that feels like someone has poured acid down it, the chances are very high that they have a rhinovirus (common cold). The issue with pathologizing autism – treating it like a disease – is that it manifests so differently in people. Once you draw up a list of ‘symptoms’, you run the risk of letting people who don’t fit the specific criteria on your list fall through the cracks in the system, to be left with little to no support or understanding. Although the DSM is working hard to keep updating its entries on autism, the older, more rigid criteria have entered the public consciousness and are now proving very difficult to uproot. This is partly, I believe, because they are easy. People in general don’t seem to want to think that autism isn’t a quickly identifiable disorder. They don’t want to think that we could possibly appear ‘normal’. They would rather continue believing that autism looks like a science-obsessed boy in meltdown than have to come to the uncomfortable understanding that autism is neither a disease nor a burden to society.
We are everywhere. Some of us stand out – others, often through years of masking and abusive environments, meld into the crowd and, to the uninitiated, are practically indistinguishable from everyone else.
But just because I may not look autistic to you doesn’t mean I am not ‘really autistic’.
We are here to stay, and we are here to tell our stories.
Please, start listening.