If you’re autistic, you know exactly the look I’m talking about. It’s the one you get from a neurotypical person when you step outside the prescribed boundaries for casual interaction. You’ll be going along hiding your autism well enough and then suddenly something you say is a miss and you lose them. There are more ways for this to happen than I’m sure I know, but common missteps include introducing what you think is a related topic but isn’t, or failing realize that someone is making a joke, or thinking someone is kidding when they aren’t.
It only takes one small error and there is that look. It is a mixture of what appears to be (of course, I never know for sure) a mix of befuddlement and distaste, and maybe even tinged with a little fear. The game is over; they see my mask for what it is. They have realized that what they thought was a nice normal dog is in fact a barely socialized hyena liable to bite them at any moment. They are often at a loss for words. The way they look at me is painful. For both of us.
It’s painful for them because I have cut them adrift from socially inscribed rules of shared context and understanding. The loss of common ground renders them as uncertain in that moment as we autistics are all the time. It’s painful for me because I am usually exerting myself as much as possible to keep it from happening, and when it happens anyway, I feel like a failure.
For the record, most people, autistics included, do not like to make others uncomfortable. Those of us on the spectrum already feel so isolated, so imprisoned by our autism, that we will do almost anything to make a connection with those around us, even if it means hiding our true selves and pretending we’re someone we’re not. Most of us have spent most of our lives trying to figure out, through a laborious process of elimination, how not to upset or alienate our non-autistic peers.
When even these well-practiced and highly refined strategies are nonetheless found wanting, it is incredibly demoralizing. Just once, I wish I could run an errand and not have to present a fake facial expression and fake tone of voice, professing a fake interest in things I could not care less about if I tried. But the me that doesn’t do that has long since been beaten into submission and locked away where it can’t do any more damage, to other people or to myself.
And I keep running up against how I feel about it and how to get past it. In the one sense, it seems cruelly unfair that I have to play let’s pretend every time I answer the phone or leave the apartment or get out of my car. On the other, I am deeply sad that my real inner self will rarely been seen and even more rarely validated, and I desperately wish things were different, and that I either wasn’t autistic, or didn’t have to hide it any more.
And I know–I know–that not having to hide my autism is a goal that is unlikely to be realized in my lifetime, and that those and others like me have to plow this road in hopes that the next generation of autistics can be more authentic than we will ever be able to be.
But I’m so tired. I’m tired of having to play this stupid game and I’m tired of having to deal with the consequences of an adult life wherein the only way I can work and socialize and make friends, with vanishingly few exceptions, is by presenting a made-up, inauthentic personality that must be consciously maintained, because if I slip up even in a tiny way, I get that look. The look that reminds me, in no uncertain terms, that I am not like other people, and that I never will be.
Despite the fact that the subtleties of unspoken communication are not visible to autistics, that look is unmistakable. It is vastly different from the normal set of facial expressions I’ve learned to imitate. It is equal parts self-doubt and distaste. For a long time, I didn’t realize what the look meant. It didn’t start to dawn on me until I was well into the coping mechanism-development stage of my life, probably around my early thirties. Now, though, I recognize it immediately, and have belatedly come to realize that I have seen it, time and again, for years and years, and that it will be something that never stops happening, no matter how good I get at this neurotypical disguise I have so painstakingly cultivated.
I can’t stop now. But there’s still a little voice in my head that wishes I didn’t have to, and that I am not only incapable of doing anything to change the way things are, I am delusional in thinking that such change is even possible. And I wish I could just crawl under my weighted blanket and not have to do any of it, ever.
It’s hard, sometimes, for those of us on the spectrum to decide whether or not we ought to or want to do something. We’re not especially familiar with how either of those things feel. So for me, I think about how I might feel ten or twenty years from now if I hadn’t done it. If I’m OK with it, then that answers my question.
If I’m not OK with it…well, that does, too. And that’s where I am. I wish it were different, but the only way to make it so is to pick up the ball and carry it a few more yards downfield. So that’s what I do.
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Would you mind linking to the article of yours in the Washington Post that other commenters have mentioned? Thanks.
I’m 72 and have felt like an outcast my entire life. A close friend of mine, recently came back into my life after a 20 year hiatus. In that 20 year period, he discovered, he was on the spectrum. He knows me like I am a sister and he believes that I too am on the spectrum. I would be relieved to find that out because It would explain so many things about my life. I live on the gulf coast of Florida in Bradenton. Does anyone know how I can get a diagnosis of this? My family doctor is clueless. Everything I have read about diagnoses is about children not adults, much less senior citizens.
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Thank you for reaching out and sharing your experience. I wish I knew someone in Florida who could help you; I would imagine your family doctor doesn’t have the expertise. I went through three different therapists before I found someone who worked with adults (specifically adult women) on the spectrum. I am afraid you have to be your own advocate, like I was, and use search engines and psychology websites. Don’t give up, and know that your experience is valid and there is nothing wrong with you; you are perfect just the way you are. Good luck!
I found this blog after reading your comment on the Washington Post. I have a 30-year-old son who has been diagnosed with Asperger’s Syndrome. Looking back on my lifetime of social interactions, I wonder if I, too, have AS and if my son got it from me. There have been a number of occasions where I have received “the look” during a social interaction. For a few of those occasions, I know that I said something “off” and I remember what it was or what it’s nature was. Remembering these instances never fails to embarrass me, years upon years later.
There have been a few occasions when someone whom I regarded as a friend suddenly stopped being a friend. One such occasion, the person stopped speaking to me and avoided me if we were in the same location. I could not for the life of me, figure out what I had said or done to have her reject me so out of hand. At one point, I cornered her and asked her why she had stopped speaking to me. She said something along the lines of, “Excuse me, I’ll be right back,” and then she disappeared. I look back on the situation with some sadness but more with anger, because of her refusal to tell me why she had terminated our friendship so abruptly.
Now, when I am in a social situation, I try very hard to be appropriately social – good, but not too good, eye contact, don’t dominate the conversation, act interested in what the other person is saying. I have to remind myself that being a good conversationalist means actually listening and reacting to what the other person is saying, and not just waiting for your turn to speak.
I do have some good friends, with whom I have been friends for over 30 years, and yes, they still like me and have never taken me aside and said, “BTW, you have this tendency to (fill in the blank).” But there have been others with whom I thought I was building a friendship, but who have just “ghosted.” Thanks for the opportunity to share.
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Thank you so much for sharing your story. I am glad you have found people who accept you as you are; this is such an important part of life. While I’m not qualified to diagnose you as autistic, your experience does sound familiar. If anything, hopefully this blog will help you understand that these occasions were due to being neurodivergent and not personal flaws. Be well!
I read your piece in the Washington Post and I am very sympathetic. My daughter is very autistic, although she is verbal. My son is identified as autistic, but it is mostly invisible–he won’t walk across the center of the room and most people who meet him don’t think he has very much to say, but I’m guessing that autism doesn’t pop in their head as an explanation. I’m old enough that they didn’t identify people with autism when I was a kid, but I recall people who would live alone as hermits, keep to themselves and not really engage socially–they were likely autistic. Coming from a family of people who would read at the table and not do small talk I expect that we are all on the impacted part of the spectrum, somewhere. I was very affected by the end of your piece where you said, “Or better yet: ‘I have no idea what that must be like. Could you tell me more?'”
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I arrived at your blog via today’s Washington Post column. So much of what you so eloquently detailed in that column and in your blog posts resonates with me. I’m glad to find a kindred spirit and will continue to read.
Yes, it’s wearying to constantly present a facade and hope that you’ve managed to “pass.” And the battle is fought anew each day.
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“Few are prepared for literal responses to small talk.”
This. Took me a long time to figure out that the reply to “How are you?” is “How are you?” And you’ve got to leave the question mark intonation out. The rules for social talk are crazy IMO.
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