January 23, 2021

Many people believe they’re autistic – and are accepted as such by other autistics – but have trouble getting a diagnosis, because they don’t match the narrow criteria in the “Diagnostic and Statistical Manual.”

I am not one of those people. I meet every possible criteria, and scored off-the-charts on every test I took for my autism assessment.

With such undeniable evidence, I’m haunted by this question: How on earth did it take me 28 years to even consider the idea that I might be autistic?

For one thing, I’d never learned any symptoms of autism besides the common habit of rocking. I didn’t know that autistic people also struggle with communication, transitions, and sensory discomfort.

However, even if I’d known all that, I still might not have seen it in myself.

Sure, I had trouble with a lot of things – but so does everyone, right? I assumed that my autistic struggles were basic human struggles.

I thought communication was hard because I’m awkward and annoying. It’s actually hard because I put extraordinary effort into processing and analyzing words, meanwhile missing the hidden meanings in gestures and tone.

I thought transitions were hard because I’m a chronic procrastinator and a loyal friend. It turns out that transitioning to a new task – or a new relationship – strains my capacity to take in new information, which is already pushed to the limit by my involuntary attention to detail.

I did not notice that sensory experiences were so hard. I later realized that water hurts my skin, sudden noises hurt my ears, fluorescent light hurts my eyes, and wind hurts my neck. Yet somehow, I spent years believing that life is just uncomfortable by default, and trying to muffle that with happy and meaningful activities – not seeing that I could also tackle the discomfort at its source.

I learned all of this from the Internet – but not until I went looking for it, after a friend suggested I might be autistic. What would have caused me to begin looking sooner?

I think it would have helped to see more explicitly autistic characters in media and books – complex and realistic portrayals of the many faces of autism.

That alone might not have been enough. But awareness campaigns certainly weren’t. Maybe they’ll get better someday. Until then, and beyond, we need stories.

P.S. I write from my personal experience as an autistic. What I share is not a substitute for advice from an autistic medical professional. Also, some of my opinions have changed since I first wrote them.