if I’m autistic, what are they?

ifimautistic-pin

 

The first time I suspected I was autistic was after reading an article about how visual thinking can make writing difficult. I was 27 years old and immediately recognized my lifelong troubles with writing, especially fiction–trying to translate the vivid movie in my brain into descriptive language is painful, frustrating, and takes a long, long time.

I told my best friend at the time, a woman younger than me but much better traveled, both literally and socially. She raised her eyebrows and said, “I don’t think so. The people with autism that I’ve known are way worse.”

Her words felt like a reprimand. I retreated, as so many of us do in the face of conflict. “Yeah. But I’m definitely not… socially normal,” I said. She agreed, and we changed the subject. The idea stayed in the back of my mind, lightly scratching and whispering from time to time, but I didn’t bring it up with her–or anyone–again.

Time passed and the first, second, fifty-eighth time I wondered if my daughter was autistic, I dismissed it. Because “people with autism are way worse,” and also living with them is miserable, haven’t you read those stories? And they need all kinds of vague therapies.

But there was never anything about my daughter that needed to change. She’s brilliant, and she loves deeply, and she has a wicked sense of humor. Most of all, she was happy. So she couldn’t possibly be autistic–she’s just like me, that’s all. Autism means something is wrong, everyone knows that, and I knew without question nothing was wrong with her. The screening checklists at her checkups were full of words like worried, oversensitive, trouble, and inappropriate. None of that ever felt right, and nothing needed to be fixed–she’s just different, like me.

Quirky. Like her mama.

A year later when my therapist said, “Are you aware you’re on the spectrum?” in response to what I had considered a completely unrelated issue, I raised my own eyebrows, unconsciously mimicking the friend who had by now faded into my history. I was slightly offended, because after all: “people with autism are way worse.” And my therapist, ever undaunted, said, “Really. I would look into it. Really.” I continued to stare at her, my forehead wrinkled in questioning.

“Have you ever considered being an engineer?” she asked slyly.

Well, yes, I had. Somewhat recently, actually. But still, that’s just a stereotype. That could be a coincidence, right?

I went home and started reading, somehow managing to find autistic voices that time instead of the professionals. And everything–30 years of not understanding why various things never worked, despite all my efforts–suddenly made sense. It was never my fault. And as a result of my new understanding of myself, my daughter was also able to be identified and finally start getting the supports she needs.

And I had to make a decision: if we’re autistic, does that make us one of those “worse” people? Or is it possible that there are no worse people–that I had autism all wrong? That everyone has autism all wrong?

This isn’t a story about autism being a spectrum, with the moral being that you can still be autistic without being as bad as you were originally envisioning. Most of us know by now that there’s a wide range of what “autistic” can look like. We’re not getting off the hook that easily.

Everywhere I had turned–my private social circles, parenting groups, professional websites, books, media–autism was constantly referred to as a problem to be solved, obstacles to be worked around. It was always a negative, always something to be discussed delicately similar to the way you would talk about plantar warts or a recurring yeast infection. Always something that’s “part of a person, not something that defines” them. (Because what if it did?)

I didn’t have to come to terms with the fact that I could be autistic, because it was already a part of me; only the label was new. I had to come to terms with how I had viewed autistic people–all autistic people. I had to accept that I was holding terrible prejudices against people who had done nothing to deserve such views. I had to unlearn everything I thought I knew about autism–everything I’d learned from their parents, everything I’d learned from doctors and teachers and child therapists–and relearn it from autistic people themselves.

I had to learn that even “those” autistic people, the ones with the most visible differences and disabilities, are still okay. They still don’t need to change. They’re allowed to be happy with themselves the way they are, just like anyone else.

The most interesting thing? I never thought I knew much about autism to begin with. I vividly remember telling someone once, in all sincerity, “I don’t know anything about autism.” But it doesn’t take conscious knowledge to hold unconscious prejudice. All the bigotry was just there, because that’s how bigotry works.

If I had heard anyone, ever, say that being autistic is a neutral thing, another descriptor like gender or introversion or sexual orientation that just helps to explain who a person is, my daughter would have been identified two years earlier. I probably would have been identified four years earlier.

But I didn’t. Not once.

If I'm autistic, what are they? How prejudice delayed my identification

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