by Christine M. Condo, writer of ‘You Don’t Look Autistic’ – The Reality of “High-Functioning” Autism
How to describe how to be in this world when you are autistic? You have to be strong, incredibly strong, and you can’t let up, even for a microsecond. It’s like being in a foreign country and only knowing a smattering of the language, and having to concentrate all your energy on suppressing yourself and your natural instincts so you can move in it, can hear and see it the way the natives do, can respond to them in ways they understand.
It’s almost too much, but each little success, each smile from a neurotypical, each connection with them, is a victory, a scrap of sunlight, a warmth of shared experience that, for those on the autism spectrum, happens all too seldom. And those little triumphs, they keep you coming back, willing to do whatever you can just to connect with someone, anyone, no matter how briefly, no matter how difficult it is.
Inevitably, of course, your strength falters. Sometimes, it takes but an instant for you to lose your grasp; other times, it slips gradually. Sometimes the whole world shifts at once. Other times, little bits start to fall away, one person, one thing, one sight or sound or smell at a time.
And then your autistic reality takes over. Autism is unique to each autistic, but the experience of the world suddenly becoming unrecognizable is universal. For me, the objects around me distort into unrecognizable shapes. Lights are too bright. Smells are too loud. Background noise thrusts itself into the foreground, blocking out people’s words.
Incongruous facial details block out faces and facial expressions. People are at once too close and too far away, maddeningly alien, speaking a language I don’t speak, moving in ways I don’t understand. They don’t see me, don’t hear me, don’t realize I am there, begging for help.
I look to signs to help orient myself—neurotypicals dearly love their signs, their pictures, their info-graphics—but they all clamor at me at once, with information that makes no sense, or is contradictory, always with pieces that don’t fit or are missing altogether. Some signs are completely hidden, others are overwhelming.
The ground shifts under me, and I am off-balance, my surroundings simultaneously too like and too unlike everywhere else. I forget where I am, what I was doing, what I was saying. I am swallowed up by the all-too-familiar realization that I am utterly lost once again, that I have disappeared where I stand, and am unable to figure out how to get found, how to make myself visible, audible, knowable. How to make myself real again.
This is where I have lived since forever, since before I learned to mask or camouflage my autism, or to exert myself to see, hear, think, and act differently.
My world, my experience, it is so vastly different from that of a neurotypical, and concomitantly, to me, their world is an alien domain that never did make sense to me—and that still doesn’t at the gut level, even though I have learned to disregard my instincts, my assumptions, my mind’s insistence upon a certain way of seeing, hearing, feeling, and doing things that is always wrong.
Outside the Glass Room
Being autistic is like being stuck outside a glass room. I see the neurotypicals inside, but I cannot actually touch them or be with them. They don’t understand this. They think I am already there, or that I can just walk right in. But the door is locked from their side. They don’t realize that I bang on it every day. They don’t realize that even when I push against it with all my strength, I can barely wedge it open a sliver, and never for long, and never wide enough to squeeze through.
They don’t realize that if they just took a few steps we could actually meet. That I can’t do all of it by myself—that they have to exert effort, too. Only a few even want to; fewer still actually do. Most don’t even see the glass, don’t believe it is there even when I show it to them, and don’t believe I’m not already with them. They think I am lying, I am making things up, I am asking for them to do extra work for no good reason. That I am lazy, I’m not trying, I’m not doing the bare minimum.
But it is they who aren’t doing the bare minimum, not me. I do all the work. I change everything about myself to communicate and interact with them. But how can they understand work they’ve never done? Usually, instead of trying, they just tune out when I try to explain it, because it’s easier for them to ignore me than to dismantle their preconceptions. Small changes in facial expressions may be lost on me, but it is easy to tell when someone thinks I’m full of s***, or just trying to get attention for the sake of having it and thus not worth listening to. Not worth their time.
And so I and all the work I do remain invisible. Even when people see me, they don’t actually see me. They see what they think is me, this thing I’ve made up out of whole cloth, that I’m forced to hide behind if I want to have anything to do with them at all.
I have no permanence; when I am not there, my autism and the very fact that there are autistic people in the world both vanish completely. Even friends I interact with all the time will forget I’m autistic while I’m interacting with them. They forget how hard I have to work for them. They forget how hard it is for me to be in their world with them, be this seemingly mundane thing that for me is anything but.
Sometimes it is even worse than that. I will identify as autistic only to be disdained, belittled, ignored, and dismissed. Everywhere I go, the gas station, the grocery store, the drug store, the salon, the cleaners, no one sees me. No one sees my work. Not even at the doctor’s office, where you’d think—and you’d be wrong—that people would understand what autism is and what autistics need, how hard we have to work to appear worth caring for.
But they don’t. I self-identify every time I walk into a medical office, and, nearly always, instead of being sympathetic, doctors and staff think I am making it up to get special treatment I haven’t “earned” or don’t deserve. Because someone who looks like me and talks like me couldn’t possibly be autistic.
And then not only will my autistic needs not be met, I will receive sub-standard care because they assume I am a liar and/or have an ulterior motive—the ultimate irony, since even if I had one I wouldn’t be able to hide it.
Lately, I’ve been wondering if I should just stop self-identifying at doctor’s offices. Maybe I’d get better care if I didn’t. Maybe I need them to buy in to my fake self before showing them the real one. I should wait until I’ve “proven” to the doctor, the nurse, the receptionist, that I’m a good faith actor [sic] before finally “confiding” that I am actually autistic.
Maybe I should stop putting myself through these preordained rejections altogether. Then, when my autism isn’t accounted for, it would be because of a choice I made. Then, when people are unwilling to see me, hear me, meet me halfway, it would be because they didn’t know, not because they didn’t care. Because it is the not caring, the suspicion, the disregard and disrespect, that hurts more than anything.
All I ask is for someone to meet me halfway. But to do that, people have to see where I actually am, and no one does. And even if they do, covering the distance is my problem, not theirs. And until this changes, I and those like me will be outside that glass room, banging, begging, crying, unseen, unheard, unnoticed. Because this is how it is for all of us. We autistics are all stuck on the wrong side of the glass.
We work so hard for everyone else. All we want is for those around us to reciprocate a tiny bit, set aside their assumptions, be open to the idea that they don’t already know who or what we are, make a choice to treat us with respect no matter what we look or seem to be.
It shouldn’t be too much to ask. But somehow, it always is.