So. There’s this really amazing post over at Silent Wave about how an autism/Aspergers diagnosis can be reversed (i.e., taken away). Please read it – either now, or later. It’s a good one.
I read the post while I was riding my exercise bike during my usual 20 minutes of vigorous exercise, this morning, and I got so worked up while reading it, I bumped up the resistance to give me an outlet for my energy.
Diagnosis — “late in life” (e.g., after 15 years of age), especially for women — is a huge issue for me. I struggled with my fitting my autistic “variances” into the neurotypical world for so, so, so many years, without a clue why that was. Even when I did self-diagnose in 1998 at the age of 32 and I was beyond convinced that I belonged on the autism spectrum… even after I re-confirmed my suspicions in 2008 and pursued an official diagnosis (denied multiple times, because of that lame “theory of mind” argument, along with the insistence that I was “too empathetic” – plus, I had a job, I was married, I was “functional”, and not at all like an 8-year-old white boy – Augh!) and yet still remained convinced I’m on the spectrum… it wasn’t until I got scientific validation from a confirmed expert that I’d been right all along, that things really clicked into place for me.
People treat diagnosis like it’s a luxury, an elective thing… something that people – especially women – shouldn’t as for. “Why would you want to be autistic?” they asked me more than once. Clearly, they didn’t get the memo that — fun fact — autistic people actually rely on data such as official diagnosis to help better understand their lives, manage their (already existing) issues, and make sense of things.
My life prior to autism diagnosis literally had no comprehensive meaning for me. I couldn’t make sense of it. At all. And considering how vital meaning is for all people — it orients us, it motivates us, it provides direction and context — you’d think that an autism diagnosis would be understood as the tool it is. A tool for meaning.
Oh, I’m getting all tweaked over this. Let me redirect my frustration.
Here’s the thing for me: Leaving autism diagnosis in the hands of uninformed, insensitive neurotypicals is like handing over the wheel of a tall ship in the middle of the night to someone who has no spyglass, doesn’t know how to use a sextant, and can’t read the stars. We’re literally handing over the task of steering a proverbial ship with thousands upon thousands of souls aboard — a position of ultimate control — to the very people who are the least qualified to diagnose us.
Or, perhaps more aptly, it’s like asking someone without a telescope to identify dwarf planets and distant constellations with their bare eyes. Without the proper equipment, they’re never going to see them all. Nor will they even realize those planets exist. Maybe they won a little plastic telescope while they were at the fair, and they can see some things closer up than before. They see more stars than they did before, so they think they’ve got skillz! And the carny dude at the fair told them the little plastic telescope they won was “Top of the line – based on all the most recent scientific developments”.
Yah. It’s kind of like that, from where I’m sitting.
And in 2017, it just astounds me, that there is still so much flawed and imperfect information out there about autism. Seriously, it’s like the whole industry has been propelled by a manic, panicked fight-flight impulse to DO ANYTHING – ANYTHING – AND DO IT NOW!!! to make the parents, teachers, grandparents, and extended social ecosystem feel like they’re doing something about the “demon that’s possessed the soul of their once-sweet darling”.
Sheesh. Fight-flight is a terrible basis for doing anything which requires higher reasoning and nuanced perception. It literally makes it impossible to think properly. That’s how we’re built. We can’t help it. And yeah, it’s of course perfectly understandable that people would want to Do Something to help their loved ones who are obviously suffering.
But at the expense of common sense? At the expense of science? Too much springing into action, not enough stopping and listening and paying attention. Too much focusing only on one small subset of flawed assumptions, and conflating them into The Main Issue, while ignoring all the others that come into play.
People have got to realize that just as there are more stars in the sky than they can see with their unaided, untrained eyes, there are more facets to autism than they have probably ever thought of from the safety of their own conceptual echo chambers. They need to stop acting like they understand what they’re looking at, when they’re not even properly prepared / oriented to view it. Stop talking, start listening. Stop doing harm. Just stop. And start owning up to the harm that’s being done.
Because it is being done. And I’m sick of it. I’m sick of it for the sake of myself, for the sake of countless others.
Yes, autism is hard. Life is hard. We autistic/Aspie folks are custom creations in a mass market world. We’re different. We’re supposed to be. We’re the in-built diversity that makes continued evolution of life on this planet even possible. And when institutions like A*****$peaks and MIT (fer chrissakes) declare their intentions to eradicate us, it’s not just a threat to us. It’s a threat to the resilience, integrity and long-term survival prospects of the human race.
There are far more stars in the sky than we can see with our unaided, untrained eyes. And there are far more variations in “acceptable” human traits, than the vast majority of NT-normative folks can probably ever conceive. That doesn’t mean we don’t exist. It just means they have yet to discover us and learn what we actually mean to them.
And we can’t wait until the day that they do discover that (and will probably announce their discovery as though they’ve invented it), to get on with our lives. We just have to live as best we can, while we can, and hopefully the rest of the world will eventually catch up.