November 15, 2013

But You Don't Look Autistic

People often call autism a "hidden disability." Indeed, for the most part it is. Unless you are able to make complex measurements and facial assessments like in this study, for the most part, autism goes visually unnoticed. You usually have to talk to a person or observe them for a certain amount of time before knowing and even then, I'd wager most of us pass under the radar the vast majority of the time.

I'd like to remind everyone that doesn't mean we don't exist as adults. That doesn't make us invisible or any less present. That doesn't mean we do not have disabling problems and issues with daily living. It doesn't automatically mean we're "high functioning" or functioning at top capacity. All it means is you don't notice us because we've gotten good at "passing" and being "social chameleons." This doesn't indicate it's a good thing either.

I recently took the Little Man to the ER because he had a stomach virus and I was scared he was getting dehydrated. One part of his sensory issues is an outright refusal to drink water. He also refuses juice. In fact, he refuses to drink anything other than soy milk and Pediasure. (Thank goodness for Pediasure!) (Also note how much this child is exactly like me - I have always hated drinking and do it very slowly, usually through a straw, and only because I know I need to live.)
You can imagine that during times of stomach upset, not drinking is really not a Good Thing™, so a mama tends to worry. Anyway, I took him in to make sure he was not dehydrated and hoping for some other options. So I told the ER doctor that he was Autistic and this is the cause of our hydration difficulties.

The young doctor chatted with the Little Man a bit and then declared over my son's head, "if you hadn't told me, I would never have guessed he was Autistic. I mean, how does it present? He seems fine."

I'm ashamed to say, this mama had nothing good to say in response. Thousands of things went through my head - should I disclose I am also? Maybe that would teach him how we look. Do I tell him he flaps? What does that matter? Do I tell him to f-off? Do I mention that I don't really care about his opinion because that's not what we came here for and I really only need to know if my child is dehydrating or not, thanks!?

Instead I just said, "he's a good kid..." because he is. I don't care if others can or cannot tell he's Autistic. That's not important and it has nothing to do with how intelligent, disabled or anything he is or not. How he looks to has no bearing on anything else about him. How he looks is just a small fraction of the amazing person he is. And that's the case with everyone. Looks are not important and looks can be deceiving.

We don't need to LOOK Autistic (whatever that means!) to BE Autistic. Society needs to let go of the whole Rainman idea as the correct representation of Autism and understand the spectrum is wide, vast and varied. We are diverse, just like everyone else. Just like no white person is the same, no Autistic person is the same. And there's more to all of us than meets the eye.

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