“You don’t look autistic.” is not a compliment

you dont look autistic autism mom blog 

“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.

“You don’t look autistic.”is dismissive

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.

you dont look autistic autism mom blog

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  • Reply
    2020-12-13 at 7:53 AM

    Even now, in my, after a lifetime of observing people and practicing social niceties, I still fail in some social situations because my social performance is not instinctive, but rehearsed, based on a mental library of appropriate responses I select in real time. Autistic people learn to be good guessers, but we never really know if our responses are appropriate. We live in a state of perpetual social anxiety, always in danger of saying or doing the wrong thing.

    • Reply
      L C
      2022-10-23 at 4:27 PM

      You won’t get eaten by a lion if you say the wrong thing. You’ll just likely get an eye roll or scrunched eyebrow. Stop imagining that the stakes are super high. I’m autistic and guess what: If an NT can’t hack it, that’s on THEM, not me. If I say the wrong thing and they can’t deal, then too bad. I won’t start worrying until I see some knuckles coming towards my face. Otherwise, I go thru life being ME. Essentially NO masking here. It’s one thing to be on high alert in a job interview. But if you ultra-mask as you go through general life….you are wasting a ton of energy. Stop it. Be you. Stop worrying what others will think. You will never naturally fit in. Accept it. Cease going through life fretting what others might think of you. Breathe easy for a change. You live only once.

  • Reply
    2021-06-03 at 7:45 PM

    I love this. Just because something isn’t instantly visible doesn’t mean it can be dismissed.

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