It’s kind of embarrassing to say, but the social media app TikTok figured out I had ADHD before I did.
For 23 years my parents, my teachers, my doctor, my psychologist and my own brain all missed the warning signs, yet somehow it only took that app’s algorithm a few days to accidentally diagnose me.
Growing up I had always had a nagging feeling that everyone else in the world was coping better than I was. Somehow they could remember appointments and deadlines, they had the discipline to keep an updated planner and they didn’t drift off daydreaming in the middle of important conversations.
In university I remember googling “how to tell if you have ADHD”, but all the information that popped up was about diagnosing your six-year-old boy, and none of the symptoms really sounded like me.
I’d never been behind at school, I wasn’t hyperactive all the time, I’d never even been that disruptive in class. I just felt like there were 10 TVs constantly switched on in my head, and with so much going on, all the small things would fall through the cracks.
It wasn’t until I downloaded TikTok that I truly considered I might have the disorder.
See, the app is based around the “for you” page which curates a stream of videos for you. It starts out pretty generic, but as you “like” some videos, and quickly scroll past others, the app’s algorithm builds a profile of you and your interests.
And that profile is scarily accurate sometimes. It genuinely knew me better than I knew myself.
Women have been under-diagnosed with ADHD for decades
What I think happened is that the algorithm noticed that every time a video titled something like “Five little known signs of ADHD in women” showed up on my feed I would watch it, fascinated, all the way to the end. So, like the dystopian capitalism machine it is, the app showed me more and more of these videos desperate to keep me on the app and extract every possible advertising cent my eyeballs could buy.
But, as a side effect, all of a sudden I was seeing ADHD content made by women and for women, for the very first time. It was like someone putting everything that always felt weird in my brain into words. Forgetting something exists if you can’t see it could be a problem with “object permanence”. Being unable to stand up and tidy my apartment, despite desperately wanting to, might not be laziness; it could be “executive dysfunction”.
Suddenly it occurred to me, maybe I wasn’t somehow just “worse at being a person” than everyone else. Maybe I simply didn’t have enough dopamine in my brain. I can’t overstate how liberating that felt.
So I booked a doctor’s appointment, and three referrals, four months and about $700 later my new psychiatrist looked straight into the webcam and said: “Yes, I think you clearly have ADHD and you’ve had it for your whole life.” I cried from joy when he said it.
Mental health experts told me it wasn’t actually that surprising that hearing first-hand accounts of neurodivergence is what finally made the pin drop. In fact, Beyond Blue’s lead clinical advisor Dr Grant Blashki said social media could be an extraordinarily powerful tool for increasing what the medical community refer to as “mental health literacy”.
In fact “learning you have ADHD on TikTok” is now such a common phenomenon that it’s become its own meme on the app. There isn’t any hard and fast data on the phenomenon but just from my own experience, since telling my friends about my diagnosis, no less than four people have come back to me saying they reckon they might have it too.
Women have been systematically under-diagnosed with ADHD for decades, so I guess it’s not surprising that now we have a platform that promotes women talking about their experiences that a new wave of girls would come to suspect they have the disorder.
It can be easy to fall down a rabbit hole
But experts say this is where things get tricky – because this algorithm isn’t guided by a set of strict clinical ethics, and its diagnostic techniques are built around viewing time, not DSM-5 criteria sets. Blashki said without a proper medical diagnosis (which at least in Australia should be relatively affordable because of Medicare) it can be easy for people to “fall down a rabbit hole” of misinformation, and diagnose themselves with a disorder despite their symptoms having a whole range of other potential causes.
Perhaps an incorrect ADHD self-diagnosis wouldn’t be that damaging in the grand scheme of things, but this isn’t the only mental health community on the app. It isn’t too hard to find creators asking you to “put a finger down” for every symptom of dissociative identity disorder (multiple personality disorder) you have. I saw another person suggesting that if you’ve ever experienced nightmares and have a chronically messy room you might be suffering from complex PTSD.
Associate Professor Marie Yap from Monash University said this can be extremely anxiety-inducing to some people and in the most extreme cases can even progress to the realms of “hypochondriasis” and self-medication.
She said sometimes if people wait too long before seeking actual clinical advice they can become set in their self-diagnosis, and it can be difficult to consider other options, even if it’s a doctor suggesting them.
And this made me wonder if I could have fallen into this trap too.
I did the right thing. I went to the doctor. I got a clinical diagnosis, and I like to think if the medical professionals I saw hadn’t agreed with my hypothesis, I would have believed them. But this is primarily an app for teenagers, and I’m not convinced I would have been so level-headed if I was 16 when I saw those videos, not 23.
The promise of a “fix” to feeling “less than” was so irresistible. Would a younger version of myself have been able to take no for an answer?
But experts say there are ways to mitigate any potential harms of self-diagnosis. This could take the form of increased screening for mental health misinformation, targeted resources for young viewers, or as Yap suggested, even potentially “Covid-19 style” warnings integrated into videos that link users to verified mental health resources and explain the next steps towards clinical diagnosis they should take.
TikTok’s platform does have some safeguards in place. Searches for “self harm” or “proana”, a term used by pro-eating disorder communities, automatically direct users to pages with a number for Lifeline or the Butterfly Foundation, and mental health content that breaches community guidelines is removed. But, at least from my usage of the app, these platform interventions seem far from universal.
A spokeswoman told me the company “recognises the important conversations happening on [their] platform about mental health”.
“We’ve also been working with experts and have rolled out resources to make access to support readily available to anyone in need. TikTok is committed to the mental health and wellbeing of its users.”
At the end of the day I am so grateful for TikTok, and the creators that make ADHD videos. That algorithm has profoundly changed my life, undoubtedly for the better. I just hope the company is putting enough infrastructure in place to make sure my experience is the norm, and not just a lucky outlier.