Once I received my autism diagnosis, I found that about 1 out of the 5 carefully chosen people (I have not come out at work, for reasons that will be saved for another post) said some variation upon “but you don’t look autistic!”
I realize there has been post after post written about this on the Internet, so at the risk of being redundant I’ll specify how that particular sentiment feels to me. I remember one day coming across an article about a young autistic woman who was participating in a school program where their parents (in this case, her and her father) were invited to a prom for special needs teenagers. Her mother had taken a number of pictures of her and the first thing that took me aback were this young woman’s hands. Her hands were similar to mine: overly large for the rest of her frame with elegant, elongated fingers.
I spy these similarities everywhere: the thin, large hands, the way when I smile naturally (as in when I’m actually happy about something) my upper lip pulls back to reveal my gums. But when I looked back at that photograph of the young woman and the unfortunate way her autism was referred to as “so severe,” I recognized her in me.
Another reason a lot of people will say “but you don’t look autistic” is because I speak in a way that is considered to be speaking verbally. Interestingly enough, more than one person has inquired whether I learned English as a second language or if I am from “across the pond.” It’s not simply because I might have an unusual way of speaking, but also because sometimes my brain will have me say the exact opposite of what I mean to say. Example: I will say “I did like that movie” and in my mind I believe I said “I did like that movie,” but what actually ends up coming out of my mouth is “I didn’t like that movie” and I’m not even aware I said the opposite unless someone tells me.
Obviously, when you say the exact opposite of what you meant, it can end up with hurt feelings and confusion, but the only way that I can prevent it (or so it seems), is to be painfully aware of each and every word that I speak aloud. It takes a lot of concentration and effort; it’s not at all “natural.” And even then, I still speak a dialect of the English language that sometimes seem to be unusual. I say words in a way that makes people think I’m from the Midwest, yet I’ve never been there. I mispronounce words such as mayonnaise (I say it like “mannaise”), words like “moon” and “room” come out sounding like “mewn” and “rewm.”
But! Here I am, looking perfectly non-autistic, right? I think what happens (and my neurotypical husband has helped me a lot with this, to hear back the things that I don’t realize I’ve said/done) is that if I say something strange or say the complete opposite of what I mean, the regular person will assume I am trying to be funny or … maybe I’m just a little weird. But autistic?
I’m not that clever, but if I could come up with a new acroymn it would be the YDLA (You Don’t Look Autistic) effect. Whenever someone says I don’t look autistic, a part of me wants to ask, “what is it about me that makes you say that? Is it because I am using my mouth and not an assisted typing device? Is it because I am not flapping or doing some kind of tic that you would find abnormal in your presence? Is it because you feel you can communicate ideas to me and I am listening?” I think a lot of it are those things; there is the assumption that I am more “normal” because I fit in a convenient picture of normalcy. For them.
Imagine a pianist got up on a concert stage dressed in a ballerina outfit. If they sat down at the piano and played incredible music, you might think “well, that’s just how they dress. They are clearly a pianist!” But if I stand before you and seem completely normal, but then launch into a in-depth conversation about Stephen Hawking, seemingly out of nowhere you might think, “That’s a little odd. But maybe they just really like Stephen Hawking.” But see, I’ve already fooled you. You don’t know how many hours I might have spent researching black holes and fixating on how Stephen Hawking’s family spent every dinner reading their own book to themselves. Or how Jane Hawking noticed right away his long, thin fingers (Another post for another day is the danger of assuming someone is autistic).
When I am in my comfort zone, i.e. at my house, I do a lot of what we call jumping from topic to topic. For my son and I, it is a easy and comfortable way of talking. We can move from wildly different topics (spending either 5 minutes or 50 minutes, or maybe 5 minutes on 5 different topics), but for my neurotypical husband it is incredibly hard to follow and ends up being a massive headache.
Oh, but wait, I’m normal. Right? The problem that many of us who experience the YDLA effect is that it can be tiresome to continue the facade that these people expect of us. Because, of course, if we did anything strangely different than that would shatter the perception that they were right about how they perceived us. I’m not saying that we should all go and let it all hang out, because frankly, I don’t want to. I know that sentiment can be sometimes viewed as a little radical and dangerous, but I’m not suggesting that autistic people shouldn’t “act” autistic in the way that is natural for them. I’m just saying that those who experience the YDLA effect are often experiencing being on the spectrum in public in a different way.
An example: I saw a young man in the grocery store wearing earbuds (with an iPod or some such strapped to his belt) and clutching a shopping list. He was clearly trying to overcome the horrible clashing experience that the grocery store can be (the “background” music, people talking, people in every aisle and in the middle of where you’re trying to walk, etc) with the means he had, i.e. the headphones. But he looked just as silently horrified as I often am when I have to go the grocery store. I wanted to tell him it was okay, I understood, but he was possibly another person whom a lot of people say, “you don’t look autistic.”
What I would really love is if a person says, “hey, you might not realize this, but I’m autistic” that others would respond, “I appreciate you sharing that with me. Thanks.” Because for some people, it is like sharing the part of themselves that they feel like no one else can see, yet at the same time people must somehow be seeing. Because often we do feel weird, we feel odd, we feel that the way we look at people when we’re trying to understand them can be a little daunting. Recently, when my husband was talking about something, he suddenly stopped and said, “why are you looking at me like that?” I was troubled, because the way he reacted made me think I had looked at him in a way that was bizarre. It was then that I realized what I had been doing: “That’s my concentrating face!” I was concentrating so hard on what he was saying, because I was interested, that my facial features made him think something must be wrong!
So yes, the almost humorous thing is that I do think I look autistic. But because I don’t fit in some people’s perspective of what autism must look like, they see what they wish to see: perhaps odd, sometimes confusing, but a mostly normal person.