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Discussion (3 Comments)Read Original on HackerNews
Many older people have slipped through the net and never even considered it. I definitely did encounter a number of people who had it when I was growing up. Some were misdiagnosed with catastrophic consequences.
Where I live, it’s a mental health diagnosis which is simultaneously non-falsifiable, diagnosable by any of a set of paid providers, and gets you access to 6 figures of value worth of government assistance much of which is generalizable. I technically received a diagnosis which was incompatible with me being autistic but at some point but medical, governmental, school, and legal systems work off of sometimes immutable medical, school, and legal records.
I decided I did not want to be diagnosed, because, the broader community seeing me as autistic I thought was harmful to me and harmful to others. My most recent diagnosis is not for autism, I don’t believe I’m autistic, I have not ever voluntarily received treatment for autism, I actually can’t call myself autistic without feeling like a fraud. Something I realized in quite a harrowing way is first, you can never prove you aren’t autistic, and Bayesian reasoning would follow that once marked as autistic people who know that happened to you even one time will forever treat you differently. Despite the severe cataclysmic finality of diagnosing people and the knock-on effects it creates, diagnosis is treated as a neutral event, a process of discovery of truth. More diagnosis is treated as more good. Negative outcomes of diagnosis are not rigorously measured. Any reversal of a diagnosis, on the other hand, is a challenge to the establishment and the monied interests of several people including the disabled person themself. Any harms this entire process causes are nearly impossible to prosecute for, with short timeliness windows which expire long before somebody realizes they were being abused.
Autism is also defined in a way infinitely flexible to interpretation. Different clinics diagnose differently than another. When the DSM-V was released it was interpreted much differently than it is now but it has not been revalidated.
Very little research even looks for negative outcomes or adverse affects of autism treatment, much less the holistic effects of diagnosis and treatments and stigma and self-stigma and the deadweight loss of creating a disability bureaucracy. There’s no movement to increase access for removing a diagnosis. No movement to rediagnose people for people diagnosed incorrectly with autism. There are hardly even that many talks about controlling for obvious fraud, such as letting parents diagnosis-shop at any psychiatrist in town in exchange for compensation and then trade that diagnosis in for services worth money. There are radically different diagnostic rates per clinic.
People have to say autism treatment and diagnosis is harmful at some point otherwise why would it not always expand? I don’t think creating a binary between neurotypical and autistics, especially in the numbers we do today, is actually a helpful model. I think it traps people in an identity they can never leave without basically admitting to utter humiliation of being abused by others for their financial benefit, on some level defrauding those you care about, feelings of a total betrayal of trust of those closest to them, an alienation towards those who accepted they were in fact autistic, significant social consequences, professional consequences, legal consequences, and financial consequences. Oh, also no longer wanting to be called autistic is used as evidence that you hate autistics, a sign of foolishness since the only reason you seem to not act autistic is because you are receiving support for your autism needs. Since again, you can never again simply be “normal”, you can only be an “Ableist autistic who hates himself in denial who is coping worse with the world than the average autistic since they’re too proud to get support”.
Later in life I discovered some major health problems which explained some of the cognitive and behavioural issues which maybe resulted in me getting mental health attention from a young age. However, another belief is autism, despite being a spectrum diagnosis based on loose behavioural criteria with many underlying and sometimes unrelated causes, is incurable, and should never be cured.
I’m big on labelling theory and looping effects.