Diagnosing Autism, Part 5: Recognizing Myself

You might want to head back to Parts 1, 2, 3, and 4 to get a little background.

Some of you are excellent at following pronoun use.

What Am I?

Am I autistic? Yes. Probably. I think so. Sure.

One of the Self-Diagnosed

I am one of the thousands of women who have had a child formally diagnosed as autistic and have seen ourselves in our child. And that makes sense. Autism and neurodivergence in general are highly inheritable traits. So it's not surprising that autistic kids often have autistic parents. The question is whether this kind of self-diagnosis is valid.

I can't speak for others. But I can speak for myself.

I was born in the *ahem* late 1970s. I was a hyperlexic kid, whose particular sensory sensitivities and needs are not overtly obvious if you aren't familiar with sensory processing concepts. I am also reasonably adept at traditional academics, so any ADHD traits I have were easy enough to bypass in school. And I was a quiet, daydreamy, quirky kid who looked just neurotypical enough to be overlooked and just neurodivergent enough to never quite fit in.

But I've always struggled with anxiety. My anxiety is uniquely social in origin. I know I'm quirky and I've always known that I don't quite fit into that round hole (Does anybody remember the 1980s show Square Pegs with Sarah Jessica Parker? Yeah, like that.) But I could never figure out why I wasn't enough. Why all my effort to be like everyone else never worked.

And then, we were driving home from my son's diagnostic visit. And he was pondering the new concept of being autistic. This is the conversation we had:

E: So I'm autistic.

Me: Yup.

E: But I'm a lot like you.

Me: Yup

E: But you're not autistic?

Me: ...

Yeah, so that happened. The rest of our conversation was a little sad. This kid coming to understand that he would never really "get" neurotypical social interactions. That he'd always be a little different. And that it's just how he was made. But tied up in all of that was a nagging feeling of familiarity in what he was describing.

When It Clicked

I can't tell you when it finally clicked. But I can tell you it was a while before I was comfortable sharing the realization that my autistic features had been overlooked. And that by all conventional measures, I should be diagnosed autistic. Because for all that I understand and accept that self-diagnosis is valid, I still struggle with accepting this for myself. I think imposter syndrome may be a strong but rarely discussed autistic feature.

So I lurked in autistic space for a while. And then I began interacting more. And the more I listened and discussed with others, the more I realized that I have a lot in common with other autistic adults. I can be myself in that space.

I still go back and forth on how much to share with my colleagues. Medical diagnosis is still the gold standard among providers and it will be a long time before that changes. So I'll continue walking this tightrope, balancing in between the medical and autistic communities and trying to keep my sanity in the process.

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