#ADHD: Hashtag of hope or misinformation minefield?

Many Australians are discovering they have ADHD with social media platforms like TikTok -- but some professionals fear that misinformation is rife, Tori Goldsbrough reports. Social media can be so much more than just a place for memes and music and messages with your friends. Just ask Melbourne musician and DJ Raphael Chavez, who has recently had a life-changing diagnosis of ADHD.

“It changed my life – and it all started with TikTok,” Chavez says.

“I kept on looking on [TikTok], and I was like, holy crap, my entire personality seems to be ADHD.

“It started to show me all the neurodivergent stuff, like the way we organise things, the way we gamify stuff, or the little quirky things that made me think, oh, that’s weird!”

This prompted Chavez to see a psychiatrist, who confirmed they had ADHD.

“[Getting a diagnosis] was the greatest thing I’ve ever done in my life. I can’t believe looking back on it all, that was how I used to live, or how I even function.”

ADHD become a widely discussed topic on TikTok, propelling the complex neuro-developmental disorder into popular awareness. As of October 2023, the hashtag #adhd had over 31 billion views on TikTok. And the social media platform has been credited by some with helping many Australians recognise that ADHD may be the cause of their symptoms and life-long struggles.

Unmedicated ADHD is shown to increase the risk of drug dependence in young adults. Photo: Tori Goldsbrough.

According to ADHD Australia, ADHD affects a person’s capacity to regulate their attention, behaviour, and emotions. It can also hinder one’s ability to effectively plan, recall information, and problem solve.

Over 1.2 million Australians live with ADHD –around one in every 20 people. People with ADHD are also likely to live with co-existing conditions, including autism, anxiety, and depression.

Some researchers, however, are concerned that TikTok largely consists of misinformation about ADHD which may lead to misdiagnosis.

A study published in The Canadian Journal of Psychiatry found that approximately half of the TikTok videos they analysed about ADHD were considered to be misleading.

It also found that users were more likely to engage with videos from other individuals discussing their personal experiences, as opposed to educational content from health organisations.

“TikTok is definitely not a reliable source of information a lot of the time, [but] that doesn’t mean it’s all bad,” says ADHD coach Susie Hopkins.

“If you’re learning about something like a medical condition, then you need to look at the authority of that source. But, if you want to hear personal stories and see whether you identify with them, then TikTok is an amazing place.

“Check their credentials and listen to multiple experts. You’ll soon work out that some of the lay people say stuff that is completely incorrect – and frankly, so do doctors sometimes."

Despite these findings, Chavez says that the positives of discussing and learning about the condition online outweighed the damage of living with undiagnosed ADHD.

“Let’s just assume the study happens to be completely accurate, and 50% was misinformation, what’s the alternative?” says Chavez.

“The alternative [for me] was drinking, doing drugs, and doing whatever I could to cope and get to the next day.

“Before I got medicated and started making accommodations for my ADHD, I was craving drinks, any sort of validation from anything. I was so bitterly depressed because I was constantly stimulating myself on anything."

Drug Policy Australia reported that individuals living with ADHD were three times more likely to be dependent on substances than the general population.

Those taking substances were also increasingly likely to be doing so to relieve symptoms caused by untreated ADHD.

“TikTok gives people that first step to go to a professional and say, hey, I think this is a thing,” says Chavez.

“Don’t be afraid to advocate for yourself. If you need to research the symptoms, do that. Say to your doctor, these are the things I’m feeling.”

Since 2018, prescription rates for ADHD medications in Australia have more than doubled, according to the Federal Department of Health and Aged Care.

ADHD assessment costs now also range from $400 to $2000, placing pressure on low-socioeconomic communities to receive adequate and affordable support.

“Many people cannot get an assessment because they don’t have the money, but they know they have ADHD. Some of them will just find [medication] because there’s no other option,” says Chavez.

“Self-diagnosis is saving lives. If self-diagnosis isn’t valid, are these people doing what so many of us [pre-diagnosis] used to do? Drinking, smoking, drugs? Realistically that addiction leads to death.”

“Psychiatrists are there to protect you from abusing medication. They’re a safeguard before the meds, not a safeguard before your self-acceptance.”

TikTok’s long-lasting affect on our mental health is also unclear, however.

Sociologist and TV presenter Ricki Spencer says it has helped to alleviate their anxiety, stress and symptoms of ADHD.

“I am obsessed with TikTok. It has impacted the way I understand and shape my world,” says Spencer.

Spencer, who has been formally diagnosed with ADHD and works as a lived experience disability advocate, says they use it every day -- enabling them to engage with content in a way that is accessible and enjoyable.

“I love that it’s so quick and goes from one thing to the other. It keeps pace with the way my head works and calms me down. It makes me feel normal during that moment I’m watching,” says Spencer.

Like many others with ADHD, Spencer uses TikTok to navigate their symptoms and allows them to stay connected with other neurodivergent individuals.

“I’ve got Netflix, I’ve got Stan, I’ve got all the other things, because one thing [at a time] is not enough for me, I just need to cope. Whereas TikTok is going quickly and is satisfying something inside my brain and making me feel calm within myself.”

Individuals with ADHD frequently struggle with interpersonal relationships; however, online ADHD communities and support groups are shown to validate their diagnoses and symptoms, which in turn leads to an improved self-image, according to a study published by SSM - Qualitative Research in Health.

This too, helps many individuals living with ADHD to feel less alone, embrace their identities, and gain a sense of belonging.

For many neurodivergent people – this connection and community is something they’ve struggled to find their entire lives.

“It’s about having others like yourself,” says Spencer.

“Maybe you see someone [on TikTok] for a minute or two. That’s enough for me to hear their story.”