‘Changed my life’: how social media is aiding adult ADHD diagnoses

University mentor Evie Stewart downloaded the video sharing app TikTok a year ago to learn more about what her young students were interested in. But she ended up learning something life-changing about herself.

She came across a video from a young woman talking about her life living with attention deficit hyperactivity disorder. Intrigued, she went to the woman’s profile and watched another ADHD video. And another. And another. And another.

After TikTok videos prompted Evie Stewart to be clinically assessed for ADHD, she is now documenting her journey on the social media platform to help others.Credit: Jason South

“I was like, ‘oh, hang on, all of those things apply to me’,” the 30-year-old Melburnian said.

She could relate to many of the examples cited in the videos: of not being able to concentrate in work meetings, losing friends when she was unable to regulate her emotions, being fidgety or forgetful, unable to maintain eye contact, and becoming fixated on specific topics.

TikTok has bloomed into an enormous network of online communities - many of which focus on medical or mental health conditions. Among the most popular of these communities is #adhdtiktok.

The explosion of interest in ADHD online rocketed during the pandemic, as mental ill-health has soared in general, and is at an all-time high in Australia according to Google Trends data. On TikTok there are 4.7 billion views of videos tagged #adhd. On Instagram there are 2 million posts, and Twitter has it’s own busy ADHD community.

Google searches for the question “how do you know if you have ADHD?” have quadrupled in the past 12 months in Australia, and “adult ADHD test” has more than tripled in search interest.

It took Ms Stewart about three months of seeing videos from ADHD creators about the characteristics before she decided to investigate whether she actually had the disorder herself.

After seeking out a doctor and psychiatrist, she received a formal diagnosis. She realised she wasn’t dumb, lazy or chaotic, as she had been told her whole life.

“I’ve just found out this thing that is answering all these questions throughout my whole life about why I hated myself,” she said.

She’s now taking medication and is documenting her experience on her own TikTok channel to help others who might be struggling.

Adelaide photographer Renee Rose, 25, has also recently begun a TikTok, Instagram and Facebook support group to help others after her recent diagnosis. She also had a “light bulb moment” after seeing videos online describing traits she identified with, like an inability to focus, a strong sensitivity to rejection, and frequent sensory overload.

Adelaide photographer Renee Rose has started a number of social media pages for people with ADHD.Credit: Renee Readett Creative

“It’s really changed my life,” Ms Rose said. “When I was a child I had these really severe behaviours and struggles that I was just told, ‘oh, well, you’re just depressed, you’re just anxious’. I was put on an antidepressant when I was only like 8 or 9 years old.”

Despite its increasing profile, Professor Mark Bellgrove – director of research at the Turner Institute for Brain and Mental Health at Monash University – said ADHD was still plagued with misconceptions in the public that it is only something young boys have, or it is just “a phase” that children grow out of.

He said in childhood more boys than girls are diagnosed, but the gender split for adults was more even, suggesting ADHD in girls is unlikely to be picked up younger in life by teachers or parents.

“Their presentation might be a little different and a little less hyperactive, for example, and doesn’t come to the attention of the teachers,” he said. “It can be a daydreamy, under aroused child”.
Those with ADHD have higher than normal rates for alcohol issues and adults are four times likelier to die early - due to the increased likelihood of suicide or risky behaviours linked to impulsivity.

Sydney-based clinical psychologist Madeline O’Reilly said she had seen more young women coming through her practices in recent years asking about ADHD.

She believes awareness online and in the community took a turning point in Australia after a 2019 Deloitte Access Economics report estimated the total economic cost of ADHD in Australia was $20.42 billion per year.

Ms O’Reilly said although many people may relate to some of the traits of ADHD – such as chronic forgetfulness, poor timekeeping and struggling to work without a set structure – a formal diagnosis is only given to those whose behaviours have a significant detrimental impact on their life.

“So many people have lived with undiagnosed ADHD, which seems to be more likely to be the case, [than] have it diagnosed. They just assume that every failing is because they kind of suck or they’re just a failure,” she said.

“[Learning about ADHD] gives them a mechanism by which to lift that shame, which might then allow it to be easier to try other ways of functioning.”

Dr Michele Toner, who teaches those with ADHD practical skills and tricks to help them manage daily tasks, said online communities were a positive, but that people should follow it up offline by seeking professional help.

“The thing about someone with ADHD sharing the lived experience is that they can often make assumptions about ADHD in general, and assuming their brand of ADHD is everyone else’s,” she said. “So it’s a great place to learn, but like everything on the internet, it’s always good to check with people who know.”

Renee Rose said she hoped the communities she was cultivating would become a source for people to navigate the booked-out and expensive mental health care system, and a place were people could feel accepted.

“Looking back to my early childhood in my teenage years, and my early adulthood still now... I still have my moments where I feel very alone and like people don’t understand,” she said.

“So I didn’t want anybody else to feel alone.”

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