When People Say 'You Don't Seem Autistic'

“You don’t seem autistic!”

I’m guessing many autistic people who have told someone about their autism have heard this phrase in response. In fact, this is a topic many people have blogged or vlogged about in the past. I thought I’d throw in my two cents.

The scenario: You are meeting someone for the first time, or this is your first time talking with an acquaintance for more than a few minutes. The subject of autism comes up. For me, it is often when I mention that I have only lived in Washington for a few years, and the person wants to know how I ended up out here. I explain that I always had a hard time in Chicago, partially because I am autistic. I came out here to visit my aunt a few times, and she thought I would be more successful out here in the relaxed, accepting environment of the Pacific Northwest.

Then they say it. “You don’t seem autistic!” Or, “Really? You have autism? I would have never guessed!” Or, “You must have gone through a lot of ABA therapy in order to be able to function this well.”

Me: “Uh…”

What they are really saying is, “When I think of autism, I think of a person rocking back and forth, screaming and needing to be restrained all the time.” Or they think of stereotypical characters like Sam from “Atypical” who seems to have no clue about social skills and even breaking into his therapist’s house, Max from “Parenthood,” who sometimes comes off as unkind, or Simon from “Mercury Rising,” who solves “the most sophisticated cipher system ever known” but can only speak a few words in a monotone. Yet here they are, talking to a person who is not screaming or rocking back and forth, not breaking into houses, appears to have plenty of empathy and isn’t a genius.

They might also be trying to give me a compliment, which is pretty much, “I imagine that you don’t want anyone to know you have autism, and that you try very hard to appear ‘normal,’ so I just want you to know you are doing pretty well at it.” I am never quite sure of the right response to this, mostly because I’m not always in the mood to give a lengthy dissertation about autism. Plus, I don’t want people to think I am trying to convince them I am “worse off” than I am or I’m trying to get attention.

And then there’s the reality that you always think of the best responses five hours after the conversation has ended. But if I could remember to use this canned response, this is how I might explain it.

When you are at home, relaxed and with your family, do you act a little differently? Do you ever just lounge around in your pajamas at home, whereas you’d never be seen outside the house without your hair done? Do you ever talk to your spouse and children in ways you would never talk to your co-workers?

Autistic people often do have an understanding of what is “expected” in public. Many of us, especially if we were diagnosed as an adults and grew up just being thought of as strange, annoying or disobedient, can be hypervigilant about not drawing attention to ourselves. We don’t want to get stared at, bullied or questioned about whether or not we are on drugs. (All of these things have actually happened to me when I was out in public.)

Those of us who have jobs are aware that we can lose our jobs if we don’t appear “normal” enough. So we hold it together when we go out. This is also a big reason why many autistic people become exhausted easily. Not only are we going into sensory overload from spending too much time in the stinky, noisy outside world, we are also concentrating on blending in.

I am really not sure if I am capable of seeming just like everyone else, even when I try. I can go to a job interview and remind myself to make eye contact (although sometimes I concentrate so hard on making eye contact that I forget to blink, and my eye starts spasming, and I have to shut my eyes for a while, which definitely probably looks a little odd) but I still mix up my words and stutter and sometimes can’t get words to come out of my mouth at all. People may assume I’m very shy or introverted and never guess I’m autistic.

On the other hand, when I’m very relaxed, like when I’m hanging out with animals, I may not do any rocking or flapping at all, especially when I’m getting a lot of calming sensory input from petting the animals or having them sit on me. If you are a fellow animal lover, you might not think I’m weird at all when I constantly talk about animals, but in another place it might seem odd.

When I know exactly what I’m supposed to be doing and I’m in a familiar place, I may appear calm and collected. But when I am unsure of myself, like at a job or volunteer position I’ve just started or in a crowded grocery store, you may spot me flapping, covering my ears, talking to myself, or just standing with my knees locked in a terrified position.

If you are around me long enough, you’ll begin to see my autism more frequently. You may see it when I have a meltdown and become nauseous after the smoke detector goes off several times in a row while you’re cooking. You may see it when you hear me ask you, “Do you like Lily?”or “Does Lily love me?” 50 million times per day for reasons unknown even to me. (It may be just because saying Lily’s name is calming to me, and because hearing the things I know for sure being repeated is also reassuring.)

You may see it when I jump and flap when I am excited, or when I’m barely able to get through the security line at the Chicago airport because the yelling people freak me out so badly. You may see it when you realize I have not done the 40 fun things I planned to do this month because when the time came, my anxiety about new situations sucked me back into the apartment like one of those old shows when someone uses a cane to yank people off the stage.

I am autistic all the time, even when I don’t appear to be. When I manage to hide it, it is not so much because I am embarrassed and want to seem “indistinguishable from my peers,” but because I am protecting myself from pain inflicted by people who are not accepting of others’ differences. I maybe more socially aware than the fictional Sam and Max, and I will never be able to solve sophisticated cipher systems like Simon. But I am still autistic. Even right now.

So to people who tell me I don’t seem autistic, my response is, “Maybe you should read my writing!”