Ben didn't think he had Attention-Deficit/Hyperactivity Disorder (ADHD) until his friends started sending him TikTok videos.
The 27-year-old was struggling with concentration and deadlines at work and had just assumed it was anxiety.
But when his girlfriend and friends started sending him TikTok videos about ADHD symptoms, the jigsaw puzzle of his mind began to fall into place.
ADHD is a "neurodevelopmental disorder defined by impairing levels of inattention, disorganisation and/or hyperactivity-impulsivity", as defined by the Diagnostic and Statistical Manual of Mental Disorders (DSM) used by clinicians worldwide to diagnose mental health conditions.
Ben said his girlfriend, who was active on TikTok, would send videos with specific ADHD 'traits' he resonated with — like shaking his leg a lot, needing to stand up in a certain way, or that those with ADHD needed to find jobs that tapped into their passions.
He said this helped fuel him to pursue an official ADHD diagnosis.
"[My girlfriend] would send videos to me a lot and would be like, 'Hey, this reminds me of you. I think you might have it'," Ben said.
"I think it did get to me and that's why it fuelled me to pursue an official diagnosis."
"So I never used a TikTok video to self-diagnose, but it did get me thinking about it and then seek an actual professional opinion on whether I am or not," he said.
Ben suspected he could have ADHD. But it was only after his girlfriend sent him TikTok videos that he decided to pursue an official diagnosis. Source: Supplied
ADHD content on TikTok 'doesn't align with science'
However, new research has found over half of the top ADHD TikToks contain misinformation about symptoms.
The research, led by the University of British Columbia in Canada, examined the top 100 most popular TikTok videos with the #ADHD hashtag, finding that fewer than half of the videos' claims about ADHD were in accord with the DSM.
It also asked 843 undergraduate students about their TikTok #ADHD viewing habits, finding those who watched these videos more frequently were more likely to recommend both the top-five and the bottom-five psychologist-ranked videos.
Vasileia Karasavva is a PhD student at the University of British Columbia and one of the authors of the report. She told SBS News the findings are indicative that, while ADHD-related content on TikTok is widely popular, "it doesn't really align with the science".
She said videos "that describe behaviours of phenomena that are highly associated with ADHD, but they're not the diagnostic criteria of ADHD" were common in the misinformation videos, such as those linking relationship difficulties to impulsivity or forgetfulness.
"It's really hard to delineate how much of that is ADHD and how much of that is other comorbidities, your current situation … it's not a diagnostic criteria for ADHD," she said.
Content or cash?
While the study did not track who was making the videos and if they had formal credentials, researchers did find half of the videos analysed were monetised.
"A big risk is people believing these creators and then buying their 'treatment plans'," Karasavva said.
"Half of the creators were selling something related to the treatment of ADHD, like workbooks, supplements, or a class that teaches you how to organise your house to be ADHD friendly."
Karasavva said some creators would apply labels to themselves, like 'ADHD coach' and that the platforms' algorithm rewards frequency and relatability over scientific accuracy.
"Social media really promotes and rewards people who post a lot and who make snappy and entertaining content. And research takes a very long time — validating your facts can take a really long time," she said.
"I imagine that if you have to make five videos a day and they all have to be relatable and follow a trend and catch people's attention, it's just a little inconvenient to put in all that work."
Discerning fact from fiction
Ben said it can be difficult to know which videos to trust.
"If it's a doctor explaining stuff or a psychologist, I tend to give that a bit more authority than if it's a content creator," he said.
He also admitted he's sceptical of overly enthusiastic and "snappy" delivery styles.
Ben said he wasn't surprised about the findings of the study.
"With TikTok algorithms, it's all based on engagement … it'd be interesting to see how many of the top ADHD videos are coming from people who have ADHD," he said.
Still, Ben believes the platform can play a useful role.
"I do think just opening up a discussion more is always good. There should be fact-checking going around, but as long as people aren't self-diagnosing, it's opening up those discussions where they can seek an actual diagnosis and maybe seek ways to help," he said.
"I think it's ultimately on the platforms to educate … TikTok needs to manage that better."
Karasavva warned that one of the biggest risks is people misdiagnosing themselves entirely.
"If you self-diagnose based on information that is not accurate, you might self-diagnose with the wrong thing," she said. "So you might not get the help that you actually need."
A gateway to diagnosis
Although the research sample was limited to 100 videos, Karasavva said the results aligned with broader research into misinformation and trends on the app.
While the findings suggest ADHD misinformation is rife on TikTok, others believe its popularity has helped people who don't fit the 'traditional' ADHD stereotype to recognise symptoms and seek professional help.
"Historically, ADHD has been seen as something that little white boys with hyperactivity only experience. Other people have been missed and have fallen through the cracks," Karasavva said.
"It makes total sense for women and people of colour to be wary of the healthcare system because it hasn't been working for them — they haven't been heard, and they've been invisible to their doctors."
Cennon, 30, said she only received an autism spectrum disorder (ASD) diagnosis after viewing content on social media — and doubts she would have been correctly diagnosed otherwise.
"The common experience with women tends to be depression/anxiety/eating disorder/OCD [Obsessive-compulsive disorder] to BPD [borderline personality disorder] to . Without the content on social media, I doubt I would have ever been correctly diagnosed," she told SBS News.
"The quality of my life has improved beyond recognition since."
Another woman in her early 30s, who asked to remain anonymous, said it wasn't until she joined TikTok that she started to suspect she had ADHD.
"My husband got diagnosed in 2019, and at the time, I was thinking that some of the things applied to me but not all of them, and I was reluctant to explore it," she told SBS News.
"It wasn't until 2020 when I joined TikTok and listened to other AFAB [assigned female at birth] people's anecdotal evidence, that I started suspecting that it might fit me after all."
She has since received a formal diagnosis. "I don't think I would have had that push if it wasn't for TikTok."
'They planted a seed'
Karasavva said social media content can help combat feelings of alienation.
"You feel less alone. You find community. You understand yourself a little bit better. Then it might spark an interest in figuring out yourself a little bit more and then go get a diagnosis and get the help you need," she said.
"I think social media can be a great jumping-off point to start thinking about your own experiences and feel less alone."
There can be several barriers to obtaining an official ADHD diagnosis, including long waiting periods at psychology clinics — sometimes over a year — and costs that can reach thousands of dollars.
In the meantime, for some TikTok users like Ben, the videos have provided insights into symptoms, prompting him to get a diagnosis.
"I was running from that diagnosis for a really long time.
"They planted a seed. So that when it became essential to get a diagnosis … I could bring it to a healthcare professional."
This article contains general information only. For advice relating to your personal situation, see a qualified medical practitioner.
