“You don’t LOOK Autistic” is not a compliment.

If you just found out that I’m autistic, you may think that telling me that I don’t look autistic is somehow laudable, as if I had a choice in whether or not I was born looking visibly disabled. Or maybe you think that I need to hear that I don’t look like one of those autistic people you can identify on sight. This is also problematic.

“You don’t look autistic” implies skepticism.

If I don’t “look” autistic to you, there’s the inherent implication that maybe I’m not autistic, or not “autistic enough” to warrant recognition of my challenges. Yes, I’m putting words into your mouth, but that’s what people like me hear. In many ways, it’s partly because of our autism, hearing the worst possible interpretation of your words to confirm our worst suspicions about ourselves. Because many of us are obsessive, and ruminate over every word spoken to us, analyzing every possible permutation to try to come to the conclusions that neurotypical people just seem to glean naturally. Remember that autism is characterized by persistent deficits in social communication and social interaction across multiple contexts.

In order for me to “pass as normal,” as some people say, I have to constantly prepare myself for social interactions. If we don’t meet very often and I can’t remember your name, it is partly because my brain doesn’t always pair names and faces very well, but it’s also because there are a million things I have to think about in order to look like I can handle a normal conversation:

  • Eye contact. Am I making eye contact with the person so they know I’m paying attention? This feels so unnatural, like I’m looking into their soul or something. It’s too intimate. But eye contact is important. Although is it creepy now that I haven’t looked away yet? Staring at people makes them uncomfortable, too. Okay, I’ll pretend there’s something in my eye so I can rub at it and break this soul gaze for a little while. If I look at their forehead, will they be able to tell I’m not looking at their eyes? They don’t look uncomfortable with my gaze yet, so I think I’m doing okay. Oh good, someone else responded, so I can look at them for a little while.
  • Facial expression. What is my face doing? I think I’m smiling politely, but my husband has informed me that he can’t always tell that I’m smiling when I ask. I hope it’s not an uncomfortable grimace. At least I don’t have that “resting bitch face” thing. A joke! I can laugh. It may be a ridiculous laugh, but people recognize laughter anyways. Oh no, that’s sad. That’s really sad. I feel bad for them. But is my face frowning, or does it look like that insincere tightening of the lips that Republican politicians use when they’re trying to look like they care? Crap, I don’t even know. Oh God, don’t start crying. That won’t help them feel better, that will just make them feel worse. And they shouldn’t have to comfort me when the bad thing happened to them. Look stoic. I’m good at that. People who know I can tell something’s wrong when I’m being stoic, but maybe other people can’t. Even if they can, they’ll probably be too polite to mention it. Maybe I should excuse myself to find a bathroom and pull myself together.
  • Expected responses. When people ask how are you? – they don’t really want to hear a laundry list of how I’m feeling. Just saying, “I’m okay” or “not too bad” and move along. “I’m okay” is kind of disingenuous right now, so I think I’ll go with “not too bad.” That’s usually interpreted as “fine” anyway. Small talk. Okay, don’t go on about how the cold is making everything hurt, just respond with something that reflects their comment on the weather. “It sure is cold out there! Man, I miss my electric blanket.” Okay, that was probably too much information, but they’re chuckling, so it’s all good. Smile and nod until you have something of value to add. Oh! I want to say a thing, but this person is still talking. I’ll wait until they’re done talking because it’s rude to interrupt. But this other person just interrupted, so I have to wait for them to stop talking now. And now we’re back to the first person, and they’re not talking about the thing I had to say anymore. Is there any way I can segue back into the previous topic of conversation? Because I really wanted to say that thing. It was really important, or it would have made people laugh. But no, now there’s no going back. Oh, there’s a lull in conversation. “You know how you were talking about that thing before?” I say the thing I wanted to say, but their faces are too blank. They’re trying to be polite, but clearly too long has passed since that thing was relevant, and now they think it’s kind of sad that I’m bringing it up again. Dammit.

It takes so much energy just to hold a “simple” conversation and try to make it appear like I’m just as capable of it as everyone else. Because I didn’t know I was autistic until I was an adult, and I was socialized to be a polite participant in conversation. And I don’t want to be that stereotype of an autistic person who comes off as a jerk, like Sheldon on Big Bang Theory, because I do have empathy, and I do want people to like me, and I spent my entire life trying to be accepted before I learned that there was a reason I wasn’t actually fitting in.

Telling me I don’t look autistic ignores just how hard I have to try every single day to not alienate people by ignoring all of the social rules I have to mentally remind myself of every time I see people.

“You don’t look autistic” unnecessarily judges the various points along the autism spectrum.

If you think you’re complimenting me for not looking like the classic autistic person who probably lives in a group home along with other adults with developmental disabilities, you are doing neither me nor this other part of the spectrum a favor. I do have a cousin who “looks autistic.” He’s nonverbal (not just nonspeaking) and his default facial expression is very slack-jawed. He didn’t ask to be born that way, and I don’t need you to put people like him down to somehow make me feel better. His challenges are far more basic than mine, but my challenges are still very, very real.

The problem with the premise of “low functioning” and “high functioning” parts of the spectrum is that it’s condescending to people on the “lower” end of the spectrum and it’s presumptive of people on the “higher” end of the spectrum. See, “low-functioning” autistic people get early intervention, lots of therapy options, and a variety of day programs and residential facilities when they turn 18. Those of us who are considered “high functioning” generally lose any type of support we may have had in school, if we have it at all, and it’s assumed that we don’t need additional support because we manage to “pass as normal” and function in the adult world with at least some measure of success.

[Update: The autism spectrum is not linear. There is no “low end” or “high end” of the spectrum, despite how allistic people perceive us.]

But expectations are a killer. People expect us to function as if we were neurotypical. Our sensory needs, social needs, and all of our other needs are overlooked because it’s assumed we don’t need anything special because look how well we’re doing. I have a job, I have a happy marriage, I have a kid; clearly, I’ve figured this whole thing out. But you don’t see the 10 voicemail messages I’ve ignored because it’s the same people wanting me to call them back, even after I’ve explained via email that I have severe phone phobia and really can’t just talk to them on the phone about this thing that produces so much anxiety in me. (P.S. If my credit card number no longer worked, would you keep sending me packages in the mail that haven’t been paid for? No. You would have canceled my subscription, as I asked over email.)

You don’t see me huddled under the blanket doing the ugly cry in a complete and total meltdown because I was already having a bad day when someone was really mean to me on the Internet and it was the last straw. My husband sees me, and he knows that my selective mutism has kicked in, and that I am physically unable to talk when I’m in this state. He knows that I won’t take it personally if he hands me a beverage and a Valium, because I know that’s what I need. And after all of these years together, I finally was able to explain that, when I literally can’t speak, the only way to break the spell is for him to ask me a yes or no question. I don’t know why, but I need permission to speak when I’m in this state. It doesn’t necessarily work the first time he tries, but at least I can shake my head to respond. And sometimes I’ll get irrationally mad at him for not prompting me to speak, because I just want to be able to say words again, dammit, and why doesn’t he get that?

I look very autistic at times like these.

So please, never tell someone that they don’t look autistic.

It either implies that you doubt they are “actually autistic,” which is offensive, or it perpetuates the stigma of autism. It is a whole spectrum, and if you know one person with autism, you know one person with autism. We are all different flavors of autistic, and our needs are as varied as we are.

Thank you for your understanding. And thank you for coming to my TED talk. LOL.

Read my Big Fat Medical Update for more details.

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