TikTok Thinks I'm Autistic
Read to the end to hear a 3 year old's thoughts on the future.
So TikTok thinks I’m autistic. Does it think you’re autistic, too?
When I first opened the app in 2020, it thought I was a rich person obsessed with interior design. I assume the algorithm was either guessing based on my location near a very fancy neighborhood in SF, or a data broker sold it the fact that I, back then, spent a lot of toxic time on Zillow looking at expensive homes I and my friends couldn’t afford.
TikTok quickly adjusted and began to think I was a well-meaning liberal Mom who would appreciate quick cooking recipes and funny kid videos. Whatever. This did not hold my attention.
So TikTok developed a new theory about me: I’m ADHD.
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Like the rest of the women my age online during COVID, TikTok’s algorithm diagnosed me with ADHD, subtly at first, and then overtly. “Does your brain go BOOM BOOM BOOM? You’re ADHD BITCH.”
It was kinda funny, because my therapist had suggested I might have ADHD a year before and I had filed the idea away in the recesses of my fleshy brain, and then when I noticed that TikTok was serving me Tips and Tricks for People Suffering from ADHD, I thought, hmm, maybe she was onto something. My therapist, that is. So I took her comment out of its hiding place and gave it some real consideration.
There is something alluring about a diagnosis that, like relativity, is a theory of everything.
When I contacted Kaiser to get evaluated I left out the part about TikTok and mentioned only my therapist. Trying to sound like I wasn't drug-seeking speed, I said, “My therapist thinks some of my difficulties in my day-to-day life are owing to an attention problem.”
“Everyone’s therapist thinks they have ADHD,” my psychiatrist said flatly over the phone. He was not swayed. A letter from my childhood nanny and my husband later, attesting to the fact that “Emily struggled to do her homework” and “Emily is terrible with paperwork and we almost lost our house because her credit score dropped below 600 when she forgot to pay off a $45 Gap bill for a shirt she bought me that didn’t even fit,” I got Adderall.
That was about a year and a half ago. Since then, I’ve gotten into painting and adopted a new family motto with my husband, “EMBRACE YOUR ECCENTRICITIES,” (which this video epitomizes) and TikTok has realized I'm a multifaceted person. Not just disorganized, with children, but creative and goofy.
NEURODIVERGENT ALERT!
Soon it started serving me ASMR videos and people cooking food in the woods, but it was the direct-to-camera appeals of people divulging their deepest secrets or their analytical takes on their own lives that held my attention most.
My For You page transitioned from ADHD to neurodivergent TikTok subtly, and I didn’t mind. It got way way more interesting. People are so fascinating!
Then neurodivergent videos gave way to autism videos.
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Specifically, videos that asked, “Are you an overachieving creative woman with adult-diagnosed ADHD who is realizing you actually also have autism?”
Uh. I mean, no? Everything but that last bit?
“I am fairly confident,” my therapist guffawed in disbelief, “that you are not autistic.”
As am I, I told her. As am I. Not that I know exactly what autism is or can be, but my understanding of the DSM V leads me to two conclusions: 1 autism is a description of symptoms and presentations rather than a “disease” and 2, most of the presentations and symptoms I have ever learned about autism do not apply to me. In fact, I seem in person to be the opposite of the classic autistic presentation:
I make lots of eye contact. I talk too much. I love to talk to strangers. I say, Mhmmm, mmhmm, too much when people tell me a story because I show my deep listening through empathy. I’m the person in the room who makes everyone else feel comfortable. I have, as one of my colleagues at Harvard likes to say — who incidentally is autistic now that I think about it — the gift of gab, as does he. I’m social and people think I'm extroverted (not realizing that I have to recover from social gatherings by going into a fugue state in the isolation chamber of my mind, but why should they know that?). Anyway.
Anyway. On the other hand, I have been thinking a lot about time travel lately. And I lug around two full tote bags of books that I spread out in front of me at coffee shops and on bar counters in very specific configurations so I can read snippets of them and take notes in various notebooks. Does that make me autistic?
Neurodivergent videos gave way to autism videos.
I do get very overwhelmed when there are clashing sounds, like the noise from the car when I'm driving mixed with the radio mixed with my children’s plaintive whining. That just about makes me have a heart attack. But! Instagram served me an ad for earplugs for people with sensitivity to sound, and that has really helped so…seems like Instagram thinks I’m autistic, too.
I'm writing this in a tongue in cheek way, but to be honest I don’t know how I feel. There is something alluring about a diagnosis that, like relativity, is a theory of everything. But more than that, there’s something truly enraging going on.
I have long written about and been obsessed by the power technology has to masquerade as an objective truth. The information we get filtered through digital means can sometimes seem like it therefore must be fact. I worry my children will trust Alexa blindly rather than me. (When in fact they should trust neither of us blindly, but I digress.)
“Google says the Empire State Building is 1,987 feet tall,” is a thing that if said aloud by a friend would sound TRUE even though I just made it up. I have no idea how tall the Empire State Building is and I am bad at estimating size, so maybe to you that made up figure immediately jumped out as wrong, but to me, it sounds basically like a fact that I would believe if someone told me they read it on the googs. WHICH IS INSANE.
As a person who has spent the past few years studying media manipulation and the whole concept of misinformation, I will spare you all the reasons why that is insane, but still, brains are what they are. We need to rely on information to navigate the world and we cannot stop to verify everything, and so we have shortcuts to help us decide who to trust. And in this technologically mediated age, we often default to trusting the computer, which strikes our dumb brains as being less biased or imperfect than humans, even as we pretend to understand that the computers have been programed by the humans to achieve hidden goals that have nothing to do with the information in front of us. We both know and disregard this fact.
And we also trust individuals who seem trustworthy, like mellifluous influencers cooing at us, and staring into our souls, and baring their truths, and telling us they have the answers.
TikTok thinks I’m autistic for a reason. It wants to make money, and it wants to build a very accurate personality profile of its users, and it turns out that if it shows me videos about autism, I’ll watch them. Its motive is money and power, and its means is self definition.
Computers are not diagnostic devices. TikTok is not my psychiatrist. Computers are not free of bias. And yet…
I spent the last few weeks wondering, what if it’s onto something? I truly absolutely hate to admit this and I want it to be wrong, because I don’t want to live in a world where I blindly believe technology when I should know better, but, TikTok got into my head. What if it is, in its quest for ad revenue and OSINT data to compile for the Chinese government, what if TikTok has stumbled on a fact about me? Even a stopped clock is right twice a day. Right?
I am, after all, a total weirdo. Which, I don’t know, seems relevant? And if saying that is highly offensive, I am truly sorry and mean no offense. I have always felt like people thought I was too much or too weird. I am, after all, someone who can’t work in an office effectively (because I talk to people too much) and therefore have worked from home for the past decade. I do have very strange facts stored in my brain, so much so that a scientist who my husband works with looked at me 15 minutes into our discussion of the APOE-4 gene that is correlated to Alzheimer’s and the controversy over some recent data about plaques and asked, “wait, why do you know any of this?” I just know stuff, I told him. But the real answer is that I’m fucking hella curious about things and feel like I need to know shit. Is that autistic?
No.
Right? I mean I know the answer is no, but then again, what do I know about my own brain? I'm just perceiving the world through it. (Speaking of which, I’m reading Donald Hoffman’s The Case Against Reality right now and BOY IS IT AMAZING, please read it so we can discuss.)
I spent the past weekend with two of my oldest friends in life. Seeing their almost 40 year old faces reflect me back to me in their eyes, was glorious. All three of us have become the women we hoped we’d be when we were first dreaming of the future all the way back in middle school in Idaho. We’re living out our dreams! Like, holy shit!!! We did it!!! We are writers and artists and lawyers and have beautiful children and supportive spouses and we finally had time to take a vacation together! And we spent the weekend giggling and strategizing and reminiscing and problem solving, about death and love and expectation and art and the law and the cosmos. (What I'm saying is we passed the Bechdel test.) One of my friend’s is concerned her daughter might be on the spectrum, so we talked a lot about why and what she can do to support her daughter, and one thing she repeatedly said was how much the whole situation of watching her daughter grow up pains her because she sees so much of herself in her child, so she can project forward and guess what happens next, and it freaks her out.
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She wants to shield her daughter from any of the pain she experienced at that age. My friend is not autistic. My friend’s daughter, who I will admit I haven't met more than three times in her 6 years on this planet, has never struck me as autistic, but again, what do I know?
[INSERT VIDEO OF PERSON BEING LIKE “OF COURSE MILLENIAL PARENTS ARE SURPRISED THEIR KIDS ARE NEURODIVERGENT, BC SO ARE THEY AND THEY THOUGHT THEY WERE NORMAL.”] [Authors’ note: I couldn’t find this TikTok, but if it rings a bell to anyone, please send my way.]
I told my friend that TikTok thinks I’m autistic and she said, “Let me see the videos and I’ll let you know if it’s onto something.” (THANK GOD FOR OLD FRIENDS.) And so we cuddled on a hotel bed in matching robes and I showed her my For Your Page, and all the videos about neurodivergence and autism that I had saved. We were on a very low dose of mushrooms, to be clear.
“Eh, I don’t know,” she said. “But…you might be autistic.”
We laughed and laughed. But I want to be clear: I have no idea if this is funny. I don’t know what to think.
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I know the therapists on TikTok saying some variation of, “YOU ARE AUTISTIC,” are being unethical. I know the people on TikTok sharing their own life experiences are doing nothing wrong and are probably helping a lot of people feel less alone, me included. But I also know that my therapist, when I told her about this, said, “I think it’s so dangerous. I just think it’s so dangerous.”
I know that I could read autism into my life. I could list out a bunch of thought patterns and habits and feelings that conform to descriptions of autism as presented to me on TikTok, which would seem to confirm the reinforcement algorithm’s hunch. I could also list off a bunch of traits that seem to contradict it.
What I know is that I'm not alone in being diagnosed against my will by an algorithm. I know I am not alone in wondering if my whole life is a lie based on videos being served to me on an app. I know that there must be other people out there who see these testimonials from therapists and neurodivergent people, which begin speaking directly to you and saying, “YOU ARE LIKE THIS!” who, like me, get swayed. We didn’t join TikTok for a diagnosis. But here we are.
I worry about this. As you might guess. I tried to explain to my husband that TikTok thinks I’m autistic and that this is something that has social ramifications far beyond myself, but is a sign of how identity is used and sold in a capitalist society to target ads and sell ADHD meds and that a whole generation of adult women and likely every demographic are being told that the problems they face – the systemic, social, cultural, physical, very real problems tied to the burden of living in a temporal sphere where everyone must eventually die lol, you know, those problems – are actually something that can be solved by watching enough videos on your phone. My husband is the most wonderful person on earth and if it was socially acceptable for me to write about how much I love him all the time, you’d unsubscribe from this newsletter due to second-hand embarrassment, but he also never lets me get away with shit, and so he replied, “My love, it’s because of how you use TikTok.” He never watches Testimonials. TikToks have to make him laugh immediately or put him in a trance. We have wildly different For You Pages, Which drives him nuts when I try to show him all my videos Lol bc they are very very cringe. He does not even entertain the conversation that I might be autistic, since he, you know, has lived with me for 20 years and literally studies autism (at least does research with potential future implications for autism research, or did) and by way of an answer to the question of whether TikTok could be on to something merely gave me the look that says, “A THOUSAND TIMES NO.”
Of course he is right. I mean, right? TikTok is giving me what it thinks I want. I am telling TikTok that I will watch these videos. If I save them, for future reference for an essay like this, for instance, TikTok takes note.
Unlike other social media networks, like Instagram or Twitter or Facebook, users don't have to tell TikTok anything. You don’t have to follow anyone. You don’t have to say where you live or what you like. You don’t have to write a bio. TikTok just starts making guesses about you and then, as you react to the prompts it serves you, it refines its understanding and serves you things more like the things you like. And more like the things you watch all the way through, even if you don’t like or comment or interact at all. It learns about you through a process of elimination that begins with its own hunches.
My hunch is that I'm not autistic, but I have learned a lot from these videos. I am convinced that I am neurodivergent. I never paid much attention to that word as it was gaining mainstream appeal over the past few decades, but if TikTok is to be believed (a big if), then I definitely fit that mold. Great!
So, anyway. That’s what I’ve been thinking about lately. And time. And time travel. I’m reading a lot about time travel. And the scientific method. Two weeks ago I gave a presentation about how the scientific method should be applied to journalism so that we can shift our focus from providing true information to actually building knowledge, and I was quite nervous because I was speaking to a room full of journalists I deeply admire, but it went over quite well! I thought. Lol. So. One of these days I will write about that here. I am also deep in research about life extension and how scientific progress moves forward, so hold onto your butts if you want to read about that. I also stopped taking my ADHD meds because fuck TikTok. LOL. So we’ll see how that goes, too!!! Oh and I had a viral tweet last week, LOL, which brought me a lot of joy because a bunch of theoretical physicists began debating the nature of sound in my mentions, which is better than what usually happens below a viral tweet.
OK my loves, neurodivergent or otherwise, love you, bye! And please remember time doesn’t exist, society is a construct, and everyone is an idiot and a little bit of a genius so you might as well be yourself!!!! Also the computers lie too!!
Oh, and here is an adorable conversation with Asa from this morning, as an antidote to all the above screensickness.
I believe that the multitasking mental energy that parenting requires rewires your brain for a few years.
I also believe that this reaction eases/resets when the parenting calms down.
- a theory from a non-ADHD non-autistic person who has felt like her mind is exploding at work and parenting but knows that she is not ADHD or autistic and wishes she was a waterfall
My childhood memories of you are deeply non-autistic 😂 i had to delete tik tok because it was definitely bad for my mental health!!! Crazy addicting