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by tboyd47 1313 days ago
I am skeptical that all of those people on Twitter are actually autistic and not just self-diagnosed.

Despite having a clinical definition and a defined diagnostic process, autism has become sort of an identity that people celebrate and use in a casual, colloquial way.

People have told me that I could have been diagnosed as autistic because of how I act as an adult, but I didn't have developmental delays. I had a pretty normal early childhood. So I don't identify as that.

So perhaps it's better for parents to leave the term "autism" for people who wish to self-identify that way, and using a different term to describe the thing that happens to their children. Too often they end up clashing over this word, and I don't think it's healthy or constructive for either side.

So maybe the authors of the paper were right, but not in the way they wanted to be.

1 comments

As a self-diagnosed autistic (dodged a diagnosis as a kid, in hindsight quite good seeing how france in the 80ies had some pretty rough approaches to it) that came to that conclusion at age 40, believing for most of my adulthood I wasn't because "look how many friends I have", the reason people seem to "celebrate" it is that it finally gives context to a lifelong suffering and feeling of alienation.

It's not like it will make your life any easier, since accommodations are scarce to come by, an official diagnosis can come with significant discrimination, and if you made it this far, it doesn't feel like a great way to spend your resources. It however allows me to not only realize that my experiences are shared, but to finally be able to learn strategies and find therapists that are helpful, vs actually aggravating the situation (say, framing you as argumentative and arrogant or schizoid or whatever, when what is going is mostly a communication mismatch).

However, my nephew got diagnosed and it allowed him to find a school that accomodates his cognitive style. He's gone from puking every day and turning into a shell of himself to being back to the bright and happy kid that he is. While in some ways I'm sad I didn't have that opportunity, it makes me so happy to see that the field has made progress exactly by widening its diagnostic net.

> It's not like it will make your life any easier, since accommodations are scarce to come by, an official diagnosis can come with significant discrimination, and if you made it this far, it doesn't feel like a great way to spend your resources.

These reasons and others are why I do not believe the rise in autism is due to a change in diagnosis. There are very few incentives to getting a diagnosis and so many obstacles. It also doesn't take into account that many autistic children have their diagnosis dropped as adults.

Diagnosis criteria have definitely gotten broader, and plenty of adults go through with it (I probably will) just to not feel self-conscious about the "self-diagnosis" thing. There is a lot of upsides to framing yourself as autistic, as it makes navigating the world so much easier. These better diagnosis standards, along with better accomodations for autistic people (vs just brutally forcing them to conform) is what made life so much better for my nephew, for example.