Yesterday I left an Autism community because of gatekeeping.
I was already on the verge of leaving anyway: I hadn’t made any posts, and the posts and comments seemed consistently toxic and unfocused.
But the “Yeah, no, bye” moment was when someone posted about self-diagnosis and they got dogpiled about how invalid that is. Once person said you wouldn’t self-diagnosis cancer and that you don’t have Autism unless a doctor says so (my thought: If you don’t have cancer unless a doctor say so, people should stop going to oncologists).
In reality, proper and thorough self-diagnosis is nearly as reliable as professional diagnosis. Don’t believe me, though; believe the research: A recent study found no statistical differences on the RAADS-R test between self-diagnosed and professionally diagnosed people.
The caveat, the ever-present caveat, the shout-it-from-the-rooftops caveat: “Self-diagnosed” must refer to people who have undergone a thorough period of serous self-evaluation and reflection. “I vibed with a TikTok video and checked off all ten ‘Things All Autistic People Do’ things on YouTube.” ain’t it.
At the same time, using TikTok to self-diagnose Autism is like using Wikipedia to do a thesis paper: It’s never, ever part of the last steps, but it could very well be the first one. Noticing that the FYP algorithm keeps feeding you Autistic creators, and noticing that you consistently vibe with them, can be an important early part of the process of self-discovery.
Then do the reading. Then do the research and the online tests (the real ones, not the click-bait ones). And interact with Autistic people. Are you really in sync? Or are you trying too hard to fit in because something else is going on but you think being Autistic is trendy? Are you convincing yourself you’re Autistic because you’re avoiding a more frightening possibility, or are you truly realizing you’re Autistic?
If you want and can afford to get a professional diagnosis, by all means, do it. Realize, though, that there are both pros and cons to that: There are certain services and accommodations that are only available to those with a professional diagnosis, but for a Level 1 Autistic who does reasonably well in holding down a job and taking care of themself (which describes the vast majority of people who are self-diagnosing), most of those services aren’t needed or even useful. Meanwhile, a professional diagnosis comes with certain legal restrictions in some places, particularly when it comes to travel.
But if it walks like a duck…
“I’m Autistic” is a shortcut. Language in general is full of shortcuts. What does it mean to be Autistic? If a set of accommodations and management tools that happen to be from the Autistic Toolkit help someone greatly, does it really matter if they’re “truly Autistic”?
My spouse avoids gluten. She was tested for celiac disease a few months after she started her gluten-free diet, and tested negative. Her doctor said there were two possible reasons for that: Either eating gluten-free had led to a false negative, or she has a gluten-related sensitivity that isn’t celiac disease. Either way, the key was: Avoiding gluten was a useful accommodation. The reason why wasn’t important.
Recently, I’ve seen a condition mentioned that’s basically Autism Not Autism: It applies to people who fit many of the DSM5 criteria but not all of them. My cynical hot take is that this will eventually be used to shove us self-diagnosed folks out of the “Actually Autistic” community.
It’s also a valid concern that there are other conditions which are similar to Autism but warrant other management and accommodation. Autism itself is often mistaken for other conditions.
The important thing is getting the most effective toolkit. If the Autism Toolkit works best for someone (as it does for me), does it really matter if they’re really Autistic or if they’re just close enough? And if someone is professionally diagnosed as Autistic but does poorly using the Autistic Toolkit, they should be given different strategies. (For those of you reaching for a wallet and waiting for the 800-number, there is no actual Autistic Toolkit. It’s a metaphor.)
And if a community wants to spend its energy declaring who really is and who really isn’t Autistic, that’s not a community I want to spend my own energy inside.