Autism Spectrum Disorder | Mental Health | Neurodivergence

Autism is More Than Being Awkward

And the world wasn’t built with us in mind.

I spent my 15th birthday inside an MRI machine.

I remember being surprisingly calm in there, laid out on the sliding table. The tube is small and cramped, and the rhythmic sound of the machine is surprisingly loud and jarring. A steady clunk. Clunk. Clunk. All around me.

It was the culmination of two years of confusion. Burn out, fatigue, depression and anxiety. Severe social anxiety. I had dropped out of High School; I had lost touch with almost everybody I used to hang out with.

I was only relaxed when I was home alone, tucked in my quiet bedroom. Even then I was exhausted and fighting with myself. I knew that something was wrong. I was adamant. But I couldn’t explain it to anybody.

Two years of therapists. Psychiatrists. One stint on anti-depressants which turned me into a zombie but didn’t help much otherwise. I quit them cold turkey. I know you aren’t supposed to, but I decided I didn’t want to feel nothing anymore. I’d rather be sad than feel nothing.

And so, as a last-ditch effort they sent me to a neurology specialist, and into the machine I went. They’d been telling me for years it was all in my head. This test was going to prove it- either figuratively or literally.

It’s not every day you get to look at your brain. I was somewhat fascinated by it, sitting in my hospital gown with my mother and stepfather, watching the doctor go over the scans and point things out to me. I thought it looked pretty normal as far as brains go. But I wasn’t an expert, so I didn’t want to assume.

But once I’d gotten dressed and returned to his office, the neurologist just seemed more curious than ever. And focused. Intrigued.

He was on the Spectrum. And he’d noticed a few things. Not in my scans, they were fine. But he had noticed me.

He started asking my mother questions. He’d realized I had been avoiding eye contact the entire visit, sometimes even talking at the wall, my head turned away from him. He asked to watch me walk across the room.

Was I clumsy? Yes. Was my handwriting hard to read? Yes. Did I always struggle with eye contact? Oh, yes. Did I avoid being touched? Yes. Yes. Yes. Down the checklist he went, more and more amused and more and more animated.

He told me I was much more mature than most fifteen-year-old girls ought to be. And he could tell me, finally, exactly what was wrong.

After two years of struggle, I had my answer. I’m autistic.

He sent me home to the psychiatrist with a letter in my hands. I still have a copy of the letter; I keep it in a folder in our family record box. When he read the diagnosis, the psychiatrist sat back and blinked at me. He told me he felt like an idiot but looking back it really was obvious.

Now that I’m an adult I understand why they had such a difficult time. Women are notoriously easy to misdiagnose. They had tested me for just about everything under the sun except for ASD, largely in the mistaken belief that it was strictly a disorder that crops up in boys.

Autism is a disorder that is heavily misunderstood and often stigmatized. We’re seen as difficult, dangerous, a burden on our families. There are places in North America that quite literally torture children like me to try and ‘train’ them out of the behavior that comes naturally to us.

I’ve written about that to some degree before, the way that we’re expected to hide and mask and act…what some people would describe as normal. It isn’t normal to us, but some people just don’t care.

I don’t think I’ve ever described what it feels like to have my brain, though. Neurodivergence is a lot more than most people realize. I’m not Sheldon. I’m not Bones. I’m Sam. I don’t have a television show, but I do have my words. I’ll try and explain this as best I can.

I can’t wear jeans.

I mean it. Can’t stand them. Denim feels like sandpaper against my skin, it physically hurts me. When I walk and the fabric moves, it might as well be lighting my nerves on fire. Any rough or stiff fabric is like that- and gods save me, if there’s a tag or a stiff seam on the inside it drives me mental.

Sensory issues are a big part of the problem when you have a brain like ours. For most people your brain will filter out the details it doesn’t need. Sounds in the background, little sensations that you get used to, you tune it out. It isn’t relevant so you don’t track it.

You know how you tell your friend “Don’t worry, after a minute you won’t notice it”? Don’t say that to us, because we don’t have that blessing.

Stiff fabric. Make-up. Skin cream with oils.

Touch.

It hurts. It literally hurts. And it doesn’t go into the background for me. It all layers up on top of each other, along with the sounds, along with everything I see.

A grocery store full of moving people, jostling against me, a hundred voices talking, the bright lights and labels and all of the smells, and the feel of my clothes against my skin and the stress of trying to remember my shopping list.

My brain is not able to tune any of that out. Not even a little bit.

You know how some autistic kids have meltdowns? I know why. I know exactly what’s going on. It’s pain. It’s too much.

For me, sensory overload dulls everything. If you picture my brain as a computer, overload is when it has overheated from too many programs running at once. It goes into power save mode, and I shut down.

My vision dims, as if someone laid a blackened veil over my eyes. Everything feels sluggish and far away. Sound becomes indistinct and distant. My body loses sensation, as if I’ve been dosed with a drug that kills my sense of touch.

I can hear if someone is talking to me, but it can take me a while to register the words and recognize I’m the intended recipient. Figuring out a response takes even longer, and you’ll be lucky if you get more than one slurred word out of me.

When I start to come out of it, I panic. My body is exhausted, I’m disoriented, all I want to do is scream for everyone to stop talking and stop moving and just let me breathe. When I’m in that state, I can’t breathe and listen to you talk at the same time.

When I get away from it all, when I get home, all I do is lay down in bed and wait. It’ll take me several hours to fully come out of it and relax.

The world is not built with my brain in mind. Everything makes a noise or emits a light- sometimes flashing lights. People talk, they play music, car horns beep and the sound of tires on asphalt is constant. Footsteps, swishing clothes and jackets, raindrops on glass.

Everything. Is. Noise.

My college did a showcase for autistic artists once. Out of respect for us, they dimmed the lights. The rooms were dark, with very soft lamps only iluminating the artwork on display. People were asked to remove hard bottom shoes and walk on sock feet.

We were told to whisper and walk slowly and keep a respectful distance from each other so nobody would bump into anybody else.

Do you have any idea how much tension I carry in my body every day? I didn’t. I hadn’t the faintest iota of a clue, not until I stepped into that room. I felt my shoulders relax and my chest open as if a steel band had been unlocked from around my ribs. I could breathe.

A headache I didn’t even know I had receded, and a fog of fatigue lifted off of my mind. I stayed in there for hours.

That’s what it feels like to be autistic. That’s what it feels like to be inside my brain, living in my body, every day. The modern world is a little more accepting of us on paper, but in practice…the world is not built for us.

A world built to stimulate the mind and draw the eye and catch attention is a hostile world for people like me. We don’t hide just because we’re awkward.

We just want a little peace and quiet.