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How an algorithm diagnosed me as autistic before any doctors did.

I first joined TikTok in December 2020¹, and I quickly learned why people seemed to love it.

If you’ve never used TikTok, you really only need to know that the algorithm good.

Scary good.

Like, are-you-seeing-my-messages-and-listening-to-my-calls-and-interviewing-my-friends-and-family-and-reading-my-mind good.

And while there’s a veritable cornucopia of potential security concerns related to how exactly that algorithm works, it REALLY works. Upon joining, you will nearly instantly find yourself in a never-ending feed of videos that become ever more tailored to your unique interests with each view, like, save and share.

In fact, the experience of being on TikTok is so completely customized, that users often talk about it as if there are hundreds of separate TikTok apps. Mentions of videos or trends are often prefaced with, “Wait, are you on _____Tok?” because you really need to be sure you’re among kindred spirits before you bring up an AI-generated cover of Patrick Star and Sponge Bob singing “If It Means A Lot To You” by A Day To Remember. (It really does slap, though.)

I liked a couple of other videos with early 2000s pop-punk music, and was thrust onto “Elder Millennial TikTok.” After commenting on a few relatable jokes about parenting a pandemic baby, I found myself on “Toddler Mom TikTok,” and then “Gentle Parenting TikTok” shortly after. I even had a short-lived jaunt on “BookTok” around when my last book came out. The niche Toks are endless.²

It didn’t take long for the algorithm to correctly identify that I’d be at home on “Introvert TikTok.” (INTJ in the house!) And the more of those posts I watched, liked, and shared, the more specific my feed got.

Videos about being “highly sensitive people” gave way to confessionals from creators talking about living with anxiety and sharing how much they’d learned about themselves in therapy. Next up? Psychologists explaining that autistic women are often misdiagnosed as having anxiety and describing the unique ways autism presents in girls and women.

In a matter of a few short months, I had gone from laughing at parody Fall Out Boy covers by 30-somethings in oversized jet-black wigs and eyeliner, to holding back tears while bookmarking videos from autistic women whose stories sounded eerily like my own.

If you were watching this instead of reading it, this is the part where we’d cut to a montage of me taking online assessments, printing out journal articles, joining ALL the forums, and compiling a shockingly detailed list of supporting evidence for my own likely diagnosis.

I firmly believe that self-diagnosis is acceptable and valid for autistics, especially for autistic women, minorities, and other communities typically under-resourced, under-represented, and under-served by the medical institutions meant to help them.

But I felt like I needed the formal validation if I could get it. I figured that once I had “an answer” from someone else, it might snap me out of my hyper-focused research rabbit hole. (LOL. Joke was on me.)

I’m lucky to have a primary care provider who trusted my instincts and was willing to refer me for a formal evaluation. Either that or she was so intimidated by the 17 pages of notes and documentation I brought to the consultation that she knew a referral was the only way to end the appointment. Either way, mission accomplished. 🤷‍♀️

I’ll be honest: I’m not yet sure how Substack’s algorithm compares to TikTok’s, so if you think you might also like to see more content like this, be sure to smash that subscribe button so you never miss an update! (Ugh. I hated that even more than you did, I promise.)

1. I don’t post much to TikTok myself, but feel free to follow me over there if you’re into that sort of thing.

2. For a brief period of time in January 2021, I even found myself on “Sea Shanty TikTok” which was not only a thing but was actually a BIG thing for a while. If you’re curious, here’s “Wellerman,” the salty tune named that started it all, which has a whopping 288M views on YouTube (not even its primary platform). But, be warned… It’s going to embed itself deep in your brain and resurface at what is almost certain to be the most inappropriate time. Happy swashbuckling.