but you don't look autistic

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"What exactly does an Autistic person look like, oh sage one?"

It's an underhanded insult against autistic people, implying they must have horns or three heads.

I have high-functioning autism, and this means that I usually look normal on the outside. But I’m here to tell you that I am fundamentally different on the inside. By the time I hit adulthood, I learned to hide my autism to avoid unintentionally upsetting or insulting neurotypical people (our word for non-autistic). If I was standing next to you waiting for an elevator, I would make small talk and smile and you wouldn’t know I’m autistic.

This is purposeful and requires significant intellectual investment, akin to taking an exam or solving a problem. I wish I could shout from the rooftops: You have no idea how hard I have to work to appear this way!

Some neurotypical people try to relate to people with autism by saying things like, “I don’t like large parties either,” or “I can’t stand it when there’s a loud TV in the room.” I have no doubt this is true, but these neurotypical experiences are not like my autistic ones.

You may not like large parties, but you are probably not in danger of having a meltdown in public. If there’s a loud TV, my brain cannot tune it out. Actually, I cannot tune out anything. Ever. That smell of popcorn from a co-worker’s desk? It hijacks my brain to the point that I have to take my work to another room if I am to have any hope of concentrating.

Imagine having the acuity of your senses turned up to 11. Imagine being keenly aware of every single element of your environment, all the time, especially those you normally, reflexively ignore. Imagine that every time you walk out your front door, it is like being forced to walk too close to a wall of spikes that constantly threaten to impale you.

Then imagine that, under this assault, you concentrate on maintaining an elaborate performance to relate to those around you while suppressing your natural mode of speaking and acting. Before I learned how to do this daily performance, people would cringe from my blank face, my monotone speech, my impatience with normal pleasantries.

If it sounds exhausting and demoralizing, it is. But in trying to explain it to neurotypical acquaintances, I am often encouraged to just “be myself.” What they don’t realize is how dramatically different that self is from the bubbly, warm persona they know. Few are prepared for my taciturn way of speaking and my off-putting, emotionless facial expression. Few are prepared for literal responses to small talk.

I have tried being myself, plenty of times, and the universally negative feedback I received from early childhood through college taught me that that self is not welcome in a neurotypical world. Neurotypical people claim to appreciate when someone is “being real,” but in my experience, giving people actual honest feedback is never the right response. In high school, I was told I “always know how to say the exact wrong thing.” I taught myself that whatever the first response was that came to my mind was inevitably wrong, so I would search for something nicer, even untruthful, to say.

This performance, and the cognitive investment it entails, happens every time I leave the house. Otherwise, I’m at risk of being misunderstood and ostracized, something I and others like me have suffered many times throughout our lives.

In college, I thought I had finally found a group of people I could be myself with, only to be told by a so-called friend midway through my sophomore year that “no one” wanted to hang out with me anymore because I was “too mean.” I was stunned and hurt; I’d had no idea.

At one of my first long-term jobs, I ran into this same problem. After about six months, I was pulled aside by a supervisor and told “no one” wanted to work with me because of my “attitude.” This was feedback that took me completely off guard, and was humiliating and demoralizing, and again, I had no idea what she was talking about.

Even now, in my 40s, 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.

I can’t describe how heartbreaking it is to hear that someone “can’t believe I didn’t know” that I had hurt them. A few years ago, a co-worker I had been close to abruptly stopped speaking to me. I begged her to tell me what was going on, but she adamantly refused. I left the job a couple of months later. I never found out what I had done to upset her.

Sometimes people tell me I don’t “look” autistic (whatever that means). I am trapped in what I call the Autistic Paradox, too autistic to function comfortably in a neurotypical environment, but too apparently “normal” to get the sensory accommodations and solitude I need.

The outside world is littered with things that could send an autistic person into a tailspin, like cellphones on speaker mode, flickering fluorescent lightbulbs and strong body sprays and air fresheners. When confronted with these overpowering sensations, my best option is to remove myself from the area — politely if possible, impolitely if not.

This isn’t to say that there haven’t been small victories. There is a note in my file at the doctor’s office to let me wait for my appointment in the back, away from the noise of the TV. As autism awareness increases, so does my success in asking for accommodations. I have managed to get the music turned down in a restaurant and be moved to a corner table away from the dining bustle.

Close friends know to check in with me in high-stimulus environments, offering the option of going somewhere else. One day I hope I can easily get what I need when I reveal my autism, rather than being met with skepticism.

If someone tells you they are autistic, it means they are under sensory assault while working unbelievably hard to appear normal to you. Please don’t say, “I would never have known you were autistic.” This is not a compliment. It is a validation of a fake self at the expense of the real one. Instead, something like, “That must take an enormous effort,” or “How can I make this easier for you?” would be much more appreciated.

Or better yet: “I have no idea what that must be like. Could you tell me more?”

Throws Jakki some velcro.