I used to have a friend in a wheelchair. He was charismatic and well-spoken. Enough to be unnerving. There were lots of unsavory people around him. I didn’t realize how lonely he was.

“I’d much rather have Asperger’s,” he told me one day when he was drunk. Which was always. “Most people will at least give you a chance.”

He was half-right. I’d rather have Asperger’s than be in a wheelchair. I can hide it on a good day, under optimal circumstances. But it’s not quite an invisible disability. People do see the difference early on. They just don’t always know what it is.

People use the word “quirky” a lot. They tell me things like “oh Gwen, you’re so funny. But you don’t know it.” People aren’t as uncomfortable around me as they are around someone who’s obviously handicapped. But I get ignored and discredited. Yet somehow, that’s not seen as disabling.

People don’t get close to us. They don’t tell us secrets or invite us to parties. Most of us don’t get to go on vacations with people or be in weddings or even chill out at happy hours. And it’s not for lack of trying.

That’s not to say people don’t like us. They love having us around when they don’t have to invest anything in us. We’re your quirky (can you tell I hate that word?) coworker or that kook in the corner of the bar who tells weird stories. We’re oblivious and good-humored, like the court jester. We spin a good yarn and we make a good anecdote. But we’re rarely taken seriously.

To put it bluntly, we’re not seen as human beings. Just reactive smart things who like books.

Now, people who know about autism know that’s not true. The reason we don’t convey our feelings well is because we have trouble understanding them. We can’t articulate the specifics of our inner worlds. Even to ourselves. It’s frustrating, but we know those worlds are there.

Others don’t. They just think we’re flat. I’ve written stories that looked entirely devoid of emotion. It creeped people out and I get that. But the thing is, I was feeling the whole world as I wrote them.

People also don’t know how subtle autism actually is. They see Sheldon Cooper and expect a show. Which most of us aren’t weird enough to make. We work hard to fit in. We’re like anyone else 90% of the time. Normal enough for that 10% of the time we slip up to be really obvious.

I know we come off as rude. But those slips happen when we’ve finally run ourselves down from putting on a front. We may or may not know better. Sometimes we’ll think back a day later and see what we did wrong. But at the time we’re just done.

I call that a brain fart. Or to put it more seriously, a break. I fucking hate breaks. They make me feel weak and helpless and stupid.

There’s so many hard things about having autism. I’d love to have better time management. I want more energy. But by far the worst thing: the thing that trumps all the others by a million- is feeling like I don’t have control.

Aspies have an unusual relationship with agency. If you’re anything like me, you probably hear all the time about how “independent” and “unique” you are. Sometimes those are euphemisms for “weird.” Sometimes they’re genuine compliments. If we’re doing Asperger’s right, we look headstrong and whip-smart and full of intent. Which is true about 50% of the time. The other 50% I have no earthly idea what I’m thinking or feeling or doing. It’s like I’m in a haze.

And our blind spots affect us whether we’re around other people or not. I love being alone. I do better by myself than most people. That’s one good thing about being on the spectrum that I’d never give up. But doing well alone doesn’t mean we have more self-awareness. I’m not sure I can ever know myself as completely as a neurotypical can.

Alexithymia, you guys. It’s brutal.

Being autistic is like Sisyphus in hell. We make progress every day. But the more we learn, the more that nasty epiphany keeps crashing back down on our heads: We’ll never really be part of this world.

If there was only one thing I could tell the world about autism, I’d say this: Us quirky, amusing, and absentmindedly fascinating people you enjoy watching for kicks; those fun, funny weirdos you chill with when you see them but who don’t seem to have a deep human thought in their heads; those fucking freak robots in the news and in the back of your classroom are almost always severely depressed. We think about suicide often. We want to relate to you more than ANYTHING. But we can’t.

Having Asperger’s is one of the loneliness things in the world. Because the world is united. You read each other. And you feel each other, like it or not.

But we’re alone.

 

*Image from deviantart.