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More than half the claims made in popular TikTok videos about attention deficit hyperactivity disorder (ADHD) don’t align with clinical guidelines – which could lead to some people incorrectly self-diagnosing with ADHD.

ADHD affects of people worldwide, according to the Global Burden of Disease study. There is an active debate about whether ADHD has been underdiagnosed; some psychologists say the real proportion of people with it could be higher.

To understand social media’s influence on perceptions of ADHD, at the University of British Columbia (UBC), Canada, and her colleagues looked at the 100 most-viewed videos with the hashtag #ADHD on TikTok on 10 January 2023. The videos collectively had nearly 496 million views and an average of 984,000 likes.

The average video contained three claims about ADHD. The researchers presented each claim to two psychologists, who were asked whether they accurately reflected a symptom of ADHD from the DSM-5, a popular textbook used to diagnose mental disorders. Only 48.7 per cent of the claims made met that requirement. More than two-thirds of the videos attributed foibles or purported issues to ADHD that the psychologists said reflected “normal human experience”.

“We had the two experts view the top 100 most popular videos, and they found that they didn’t really match the empirical literature,” says Karasavva. “We are like, ‘OK, this is a problem’.”

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The researchers asked the psychologists to rate the videos on a scale of 0 to 5. Then they asked 843 UBC students to watch the videos rated by the psychologists as the five best and five worst to explain ADHD, and then rate them. The psychologists scored the more clinically accurate videos an average of 3.6, while the students rated them 2.8. For the least-accurate videos, the students gave them an average score of 2.3, compared with 1.1 from the psychologists.

The students were also asked questions about whether they would recommend the videos, and about their perceptions of the prevalence of ADHD in society. “The amount of time that you watched ADHD-related content on TikTok increased how likely you would be to recommend the videos, and identify them as helpful and accurate,” says Karasavva.

“One wonders how general the results are to all health content on TikTok or across the internet,” says at the University of Bath, UK. “We live in a world where we know so much about health, yet the online world is still awash with misinformation. TikTok is just reflecting that reality back to us.”

Ellis says that medical misinformation is likely to be even higher when considering mental health issues because they are diagnosed based on observations rather than more objective tests.

But banning ADHD videos on TikTok is “not helpful” – even if they are misinformative, says Karasavva. “Perhaps more experts should put out more videos, or perhaps it could also be just individual users taking it upon themselves to be a little more discerning and critical of the content they consume,” she says.

TikTok declined to comment on the specifics of the research but told New Scientist that it takes action against medical misinformation and that anyone looking for advice on or diagnosis of neurological conditions should contact a medical professional.