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Every time I tell someone I'm self-diagnosed #actuallyAutistic it's a roll of the dice - no matter how well they know me, how intelligent they are (and know me to be), how little they know about autism, there are good odds they'll caution me against self-diagnosis.
I understand this impulse. This is in many ways a good practice - we should trust our instincts, but verify with experts. What most people don't understand is that medical professionals are not the experts when it comes to autism. That sounds nuts, right? Why would I say that?
Because at best a non-autistic medical professional can become an expert in the current diagnostic criteria for autism. Isn't that the same thing? No. No, it's really not. Diagnostic criteria for autism are 100% behavioral - you watch a person and see if they do X. So?
So as an autistic person I can tell you honestly that my behavior is the least autistic thing about me. I spent years - decades, even - learning how not to be weird. And I'm a cis straight white dude, peak privilege! I am free to be weird if I want to! Where is my autism, then?
Autism exists in the way I relate ideas together, in the way I parse sensory input, in the way I struggle to express complex cognitive structures in linear language, in the way my attention flows into complex systems. None of this is observable behavior.
Testing for autism by observing behaviors can't possibly be sufficient. First of all, the behaviors being tested for were developed by studying traumatized white male children with limited means of expression. That's one subset of autistic behavior, sure. But it misses context!
"Why is he just sitting there staring at those toys?" "Oh, he's autistic, that's just 'repetitive behavior.'" Well, okay. But maybe he's captivated by the relation he's noticed between the way color seems to correlate to shape across toy domains, and he's building up that model?
"Why is he screaming when touched?" "Oh, he's autistic, that's just 'difficulty communicating.'" Uh. Okay, but maybe what he's trying to communicate is that touch feels like electricity to him and it fucking HURTS? But that's irrelevant, for diagnosis. You see?
And like, as we get older we learn. If we're lucky we learn to listen to our own needs and express them to the people in our lives in a way that allows them to be met. But more often we learn to pretend like everything is fine when it's not, because that's considered 'recovery'.
So if you're someone who has struggled with this stuff their whole life but you learned how to present normally so as to avoid causing other people discomfort, you are not, according to the top minds in medicine, autistic. Because behavior is all that counts.
So like, that's pretty fucked up, right? It suggests that 'autism' is the term for a condition where people respond to certain stimuli similarly to the way traumatized white male children respond to them. But does anyone really think that's a meaningful definition of the term?
So like, when we self-diagnose it's not that we think we know more than the experts - it's that we _are_ the experts. Diagnosing autism through behavioral observation is like evaluating politicians based on campaign promises - it's not irrelevant, but it misses the point.
Anyway, all of this is to say that the diagnostic criteria seem utterly alien and inhuman _because they are_ - they are behavioral, with no concern for interiority or subjective experience. We need to do better. Here's my attempt to translate them. https://t.co/zGB30VHrOS