There are a lot of things that I can say about the process of seeking out and reacting to my autism diagnosis. One thing I can say is that it still feels surreal to write, say, think “my autism diagnosis.” I’ve been ignored, ridiculed, dismissed, the *eye roll, flip of the hand, laugh* with “Tsch, no, what are you talking about”, for so long that I am having trouble recognizing that I could be a part of something so special.
And it’s not just dismissal by friends, family, coworkers, and peers that has made me not believe it. It’s not just parents, teachers, professors, and managers, as well. It’s not just children reacting like I’m different than other adults, even creepy. It’s that literally every single person with whom I interact is dismissive of, or outright rejects, my entire perception of reality. How?
It’s peers looking at me weird for everything I say, me not having experiences to share in conversation or sharing them incorrectly somehow. I get invited to parties exactly once per friend. Twice, if they need to convince themselves they tried. It’s the restrained desperation to “please play a party game with me” because I can connect with you that way, since there is a standardized and obvious method of communication. I can see the give and take. I can see my place, my turn, in the conversation. But they often want to drink and talk, two things that don’t mix well for me.
It’s friends who support every underdog cause, but laugh at your apology and say “Oh my god. If you keep saying ‘autism’, I’m going to have to start taking shots.” I’m sorry that I annoyed you. Please don’t treat my ‘pervasive disorder’ as a drinking game. (I think it’s the word pervasive that they’re missing.)
It’s friends who you share the diagnosis with and get “You don’t [look] autistic.” [Insert stereotype here.] Man, ya know, I never once thought to question this diagnosis that I’ve fought for years to even pin down. Definitely glad you noticed that. Totally don’t get that reaction from everyone else I come across. Super glad to get it from you, my trusted friend.
It’s friends who figure that, ya know.. you made it this far, you can do it, just do it all the time. You can sit in an invisible chair. Just do that all the time. No really. Go on, do it. Please. I’ve earned the laugh, at this point.
It’s being told you need new friends, but you’ve been on that hunt for 30 years now and pickings are slim.
It’s teachers barely putting up with me and professors actively rejecting me or targeting me. I was once failed for a reason they “just couldn’t put [their] finger on.” (Complaining up the ladder went poorly.) Others see me as “capable of more” work or input or research paper content, because they assume that emotional regulation and executive function are a prerequisite to precocious intelligence. My struggles with those things were highlighted, shamed, and punished. Often, it felt to me like they wanted to “bring the know-it-all down to size.” Little did they know, my ego was non-existent as it was.
It’s workplace management (various and sundry, but not all) clamping down harder and harder like I’m a rebellious teenager who will break eventually, rather than a broken-spirited adult howling in pain to please just let me be.
It’s doctors doubting every concern I raise, repeatedly telling me straight out that what I’m experiencing doesn’t happen, doesn’t exist. That you can’t feel your bones, so they can’t perpetually feel bruised. That you grow out of hypermobility in your teens and you’re 20-something, so your janky ankle can’t exist. That everyone has difficulty with temperature regulation. That no-one’s skin just burns at random, not without having a stroke or something. That “if something really were wrong, you’d know it for sure.”
It’s family doubling down because they can’t possibly be wrong. I haven’t told most of my own immediate family because, in another’s words, “they’d say it’s bullshit.” Which is accurate. They would. I mean… They’re the reason I only got this diagnosis at 34, instead of at 3-4.
It’s being low-grade off-putting to everyone around you. In some way, I’m… just… a little… not… quite… one of you, for some reason. Something, somewhere deep down in the lizard-brain, in that instinct that tells you who is of your clan and who is not, I am somehow, subtly, indelibly, not. It’s exhausting to fight that every time I want to forge a connection. It’s exhausting just to live under that, when tribalism is our national pastime.
It’s just a constant drumbeat of *you* *don’t* *exist*. There is absolutely no inkling in the general collective consciousness that individual humans can perceive the sensory world in different ways. That individual humans can acquire, store, recall, and utilize knowledge in different ways and with different abilities. It’s a constant undercurrent of *shh don’t make things up like that, they send girls away for less*. (Away where? “Away” is enough. Not being “among” is crippling in a way you can’t know until you have been there.)
I’ve had to defend my diagnosis to three separate doctors. It’s approaching a physician that you’ve worked with for 10+ years. The physician has tried for years (and failed miserably) to help with the crippling depression and anxiety cycles that you just can’t break out of. So you shuffle up, awkward and panicking, body quaking, picking at your fingers in your lap, and say, “So, I uh. I’ve been working hard on the mental health stuff and I finally got a diagnosis I feel confident in. I’m autistic.” And you get back the side-eye and, “Yeah? Uh. Where did that come from?” So you just stare at them. Where…did… Have they not been here for the last ten years? (four months of aching self-doubt later…) Well, I guess I don’t need to be here for the next ten, then…
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