The weight of being diagnosed with autism spectrum disorder as an adult
Since I was officially diagnosed with autism and came out as autistic, I’ve heard it all:
You don’t look autistic… It must be very mild for you to have been diagnosed so late in life… But doctors over-diagnose so much nowadays…
Or the other side of it: Ah, that’s why you’re always doing those stupid things… I knew you were different…
I try not to take offense to any of it because I know people don’t have ill intentions. You know, I get it. It’s awkward. It’s hard for folks to understand how I can be autistic. After all, I’m able to hold a conversation fairly well and I have friends. Friends. Such an interesting concept. What defines a friend? Building and maintaining relationships is actually something I struggle with. Sure there are people I interact with but I’ve never been able to sustain a long-term friendship. There were people I used to see every day that I haven’t seen in years. Yeah, it’s “life”, but it’s also autism.
Do doctors over-diagnose autism nowadays?
Many do, and that’s why it was important for me to see a specialist. I needed to see a professional who would spend a lot of time with me before coming to a decision. For what it’s worth, the psychologist who diagnosed me with autism told me that she doesn’t give out that diagnosis easily. Not at all. She’s known as an autism specialist in Austin, TX and she’s certain I’m autistic. YES is her response when I ask her if she’s sure I have ASD. Because yes, every time I see her, I ask her if she’s sure I’m autistic. I don’t fit in with the autistic people I know of. In fact, this is difficult for me to even talk about. I thought knowing why I’ve always felt so different would help me but it’s made things worse. I suck at analogies but I imagine it would be like meeting your birth parents and their new family for the first time, and having them tell you that you don’t belong with them and you never will.
It goes something like this:
Eileen: Hey, autistic family. It’s me. I’m one of you.
Autistics: No. You are not. Stop using functioning labels. Don’t talk about your child’s autism. Acknowledge that the puzzle piece is a harmful symbol for autism. Stop using ABA therapy and all that ableism shit you put your kid through on a daily basis. And stop using the #actuallyautistic hashtag!
Eileen: WTF is going on? Did you get electrocuted as a child?
Of course, this hate comes from people who feel empowered by policing people and who get off by telling people the things they like are bad. They are what we call social justice warriors, and many of them take it too far. But here’s the thing: they’re supposed to be like me so it torments me a bit. If I’m autistic too, why don’t I share their point of view?
This is the reason why when I see my psychiatrist I always ask, “are you sure I’m autistic?”
So far she hasn’t changed her answer so I guess she’s sure. Maybe I’m hoping she’ll change her mind and diagnose me with a condition that’s surrounding community is nicer. Maybe seeking a diagnosis for me was like looking for my tribe. And so far, that hasn’t happened. I’m still lonely in that regard. I find comfort in writing and sharing my story with the hope that someone might reach out to me and relate – someone who’s autistic but not too angry at the rest of the world.
I’m too autistic for neurotypical people and not angry enough at neurotypical peeps to fit in with autistics.
Haha, life. You’re funny sometimes. You give me a label but I think you’re missing the point. I’m just Eileen so maybe the label isn’t important. Maybe I’m Eileenistic. I’m somewhere in the middle wondering if there are other people out there in the middle too.