« You don’t look autistic.”
I can’t tell you how many times I’ve heard this said to me, and Charlie too. I wonder what people expect autistic individuals to look like. Autism is a neurological condition that doesn’t directly affect looks. I think the over-representation of “Spock-autism” in media is partly to blame — people generally expect autistics to act in an obviously-awkward, socially-oblivious way. The truth is that only a small percentage of autistic people behave that way and have an extraordinary splinter skill.
I’m not a math genius. I don’t carry a notepad in my pocket with each social rule I’ve learned the hard way, nor do I use said notebook that I don’t actually own to correct others’ social faux pas. I don’t think I’ve ever talked about trains for an entire day either. Autism is not as entertaining, quirky, and fun as it’s often portrayed in media.
And then there’s Charlie. His autism is severe, he can’t communicate beyond basic needs, nor can he keep himself out of danger, and he’ll probably need 24/7 care for the rest of his life. So that’s great, I guess, how he doesn’t look autistic, but no, it’s not a compliment. It feels dismissive of who Charlie is and what he struggles with every day.
For me, I want people to acknowledge that a lot of work goes into me looking “normal” and trying to fit in. While my disability is invisible to all but those close to me, it affects my life daily. For Charlie, I want people to realize that autism can be a severe disability — the spectrum is broad. You can’t often see Charlie’s autism in a photo, but you’d know in half a minute if you were in the same room.
That said, autism is complicated, so I’m thankful when people take the time to ask questions and show an interest in Charlie, me, or autism in general. I don’t want anyone to stay quiet for fear of offending me. Saying the “wrong” thing never feels hostile or painful to me if it’s done innocently, and it’s better than saying nothing at all.