Psychologists say more and more New Zealanders are self-diagnosing as neurodivergent or mentally ill. In the first instalment of IRL – a new series exploring the real-world consequences of online life – Josie Adams delves into the social media communities encouraging them to do so.
Put a finger down if you regularly: touch your face, make impulse purchases, have more than four tabs open on your browser, ignore texts, lose things, or run late. If you lost a whole hand, you might have ADHD. At least, that’s what some TikTokkers are telling us.
Videos about conditions like ADHD, autism spectrum disorder (ASD) or Tourettes, and mental illnesses and disorders like depression, anxiety and PTSD, have boomed on social media over the past year: Paige Layle, a 21-year-old Canadian TikTokker with 2.6 million followers, posts relatable content about her experiences with ASD while Connor DeWolfe, another TikTok star, shares ADHD content with over 2.9 million followers.
With the encouragement of TikTok stars and Instagram influencers here and overseas, a number of New Zealanders are self-diagnosing using the vast resources of the internet, and declaring themselves neurodiverse or mentally ill without actually having a medical record to reflect it.
Dr Kerry Gibson, a clinical psychologist and associate professor at the University of Auckland, says since the internet’s inception, self-diagnosis has been on the rise. “As long as we’ve had the virtual environment, we’ve had access to online quizzes asking ‘are you depressed?’ or ‘do you have ADHD?’,” she says, adding there’s been a “flurry” of social media posts about the symptoms of conditions like ADHD recently.
At Victoria University’s Clinical Psychology Centre, practice manager and clinical psychologist Dr Dougal Sutherland confirms he’s seeing more clients come in with self-diagnosed conditions who are looking for clinical validation. “It’s not necessarily a new thing, but it’s become a lot more common or frequent,” he says, “particularly in regard to ADHD and ASD.”
But why is self-diagnosis of these conditions increasing, and what is the value – and risk – associated with these labels?
One of the key benefits of self-diagnosis, according to people who do it, is validation. Tammy*, a 33-year-old communications specialist based in Wellington, says self-diagnosing with ADHD helped her understand her existence isn’t just a long series of screw-ups. “I always wondered why other people were seemingly able to just go to work and do their job and not spend all day on Facebook and stuff,” she says, adding that the longest she’s held down a job is two years.
She started looking for a way to explain that pattern in 2014, when she found herself consistently struggling to meet freelance writing deadlines. “I started Googling auditory processing disorder and kind of went down that rabbit hole,” she says. She read blogs, Instagram posts and WebMD articles, and realised she “ticked so many boxes for women with ADHD”.
Tammy quickly joined communities of other women with ADHD – both clinically and self-diagnosed – on Reddit, Instagram, and Facebook. “The really cool thing to me about that group was recognising that there were other people who had the same issues as me, and that it wasn’t in my head,” she continues. “I wasn’t just a lazy person who can’t push work out on deadline or clean their house.”
Online research can also help correct widespread under-diagnosis or misdiagnosis, alerting people to the possibility that they’re presenting atypically with a neurodiverse condition or mental illness.
Historically, ADHD and ASD diagnoses didn’t extend into adulthood, or had to be very severe: “You had to be Rain Man, essentially,” Sutherland says. The known prevalence of ADHD is about 6% of children – about two-thirds keep their symptoms into adulthood – and the prevalence rate of ASD is basically unknown, because of the changing definition. “We’ve started thinking about it much more as a spectrum, rather than a hard yes or no,” he explains.
According to Sutherland, the self-diagnosed are often not wrong. Most who come through his clinic are people in their 20s or early 30s, who might have had milder cases of ADHD and ASD and therefore slipped through their schooling with the conditions unnoticed. “If you have really severe difficulties, both the health and the education system will pick you up and probably provide you with some really good support,” he says. “But that’s only like, 3% of the population, and there’s often a whole huge chunk of people who have mild to moderate difficulties who simply get overlooked.”
David*, a 31-year-old student in Dunedin, is one such case. He says the internet and friends with the condition helped him expand his understanding of what ADHD looked like and realise his depression diagnosis might be off the mark. “My conception of ADHD was from the two or three kids I’d known with ADHD in primary school,” he says, “who were always really hyperactive and bouncing off the walls.”
When his online research alerted him that low self-esteem and low educational achievement could indicate ADHD, he became more sceptical of his diagnosis of depression. “It’s not like I was ever depressed for no reason,” he continues. “I was depressed because I couldn’t get the things done that I wanted to, which also made me anxious.”
After self-diagnosing at 24, David received a formal diagnosis of ADHD in the subsequent years. He’s now medicated for ADHD – and nothing else. “It changed my life,” he says. “My depression disappeared.”
But there are potential downsides to self-diagnosis, too. A major problem, in Gibson’s view, is that these online discussions can lead people to “pathologise ordinary experiences of distress or difficulty” – when you go through a terrible break up, for example, you might self-diagnose depression after seeing a TikTok. “I think it kind of sets up this false dichotomy between what is normal and what is supposedly not normal,” she says. Big posters like Layle and DeWolfe have clinical diagnoses of ADHD and ASD, but in the content they create about their conditions, they often isolate symptoms into small videos or images that can feel relatable even to the neurotypical, prompting comments like, “Are you diagnosing me!?” or “I thought this was normal!”
Gibson stresses, however, that it’s perfectly legitimate to seek support for ordinary life hardships. “I don’t want to give the message that young people don’t need help, and that they need to just sit there and be OK with feeling sad or struggling with schoolwork,” she says. “I’m saying the exact opposite; that they’re perfectly entitled to help even without that passport of the label. It’s OK to come forward and say, ‘I’m just struggling’.”
Navigating normal life under the shadow of a pandemic means greater numbers of New Zealanders are in this position. Calls and texts to Lifeline are up 40% during the latest lockdown compared to the first major lockdown last year, and more than 80% compared to 2019. The combination of being stuck at home, distressed, and spending more time on social media can drive even more people to self-diagnose.
Anne*, a 22-year-old also based in Wellington, has been floating between jobs since the lockdown last year, and she’s hoping her ADHD self-diagnosis will provide some solace. Suddenly being at home without any external motivations like peer pressure, scheduled breaks, or human interaction was a shock to the system, and she couldn’t find the internal motivation to continue her work. “I felt like my hands were tied to my sides,” she says. “I just couldn’t work.”
She remembers first seeing ADHD self-diagnoses on Tumblr, but didn’t think it applied to her at the time. Last year made her reconsider: she began seeing content specifically about women with ADHD, and like Tammy, considered the possibility she was presenting atypically. “I thought, either I’m just a really horrible, lazy, selfish person, and that’s who I am,” she continues, “or maybe I have ADHD and that’s what’s making it really hard for me to work.”
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While self-diagnosis can be a useful starting point, both Gibson and Sutherland have noticed individuals can become too attached to their own assessments.“I think it is fairly normal to have a bit of a Google before you go [to a medical professional], and come up with your own solutions,” Sutherland says. “You just don’t want to hold onto those too tightly. I mean, I know when I go to the doctor I’ve already Googled what I’ve got, but nine times out of 10 I don’t actually have a tumour in my knees.”
Self-diagnosis should be your entry point into psychological care, not a final destination – otherwise, as Gibson puts it, “you’re just left feeling like ‘I am this person with ADHD’ or ‘I’m this person with PTSD or depression’.”
According to David, some social media communities encourage the kind of inertia Gibson describes. “If you surround yourself with people in that first stage, who are just telling themselves, ‘Hey, you literally can’t ask me to do anything with my life or change or moderate my behaviour because I have BPD, ADHD, or ASD,’ it stunts you,” he says.
Seeking treatment isn’t always an easy task, however. A serious nationwide shortage of psychologists and psychiatrists means getting a clinical diagnosis for conditions like ADHD, ASD and PTSD could take over a year: The current demand for private psychologists has been called “unprecedented”, with more than 50% of clinical psychologists reporting in a recent survey they had to turn away more than 10 families each month.
Sutherland says private diagnosis and treatment of ADHD and ASD is usually required, because DHB resources are set aside for the 3% of our population with the most urgent need – even though research has found that closer to 5% of the population has a severe need for mental health and addiction services.
But even private treatment involves significant wait times. “I get referrals every day,” Sutherland says. “We are currently full and not taking on any new clients, probably until next year. I think that’s a fairly typical timeframe. So it’s really hard trying to find somebody.”
Tammy, the 33-year-old who self-diagnosed ADHD, says her online research and the ADHD-centred Facebook group she found have enabled her to prepare for the costly, lengthy journey ahead. “Now I know I need to go to a psychiatrist, that the wait time is going to be probably 12 to 18 months, and that it’ll cost me about $2,000,” she says.
Meanwhile Anne, the 22-year-old who thinks she might be presenting atypically with ADHD, has just spent $900 on her first session with a psychiatrist, and will need at least two more before she gets any treatment. “If I do end up getting a diagnosis and treatment, I’ll have pretty much no money left at that point,” she says. “I just can’t see a future. I can’t picture myself in a job, paying rent, the way that my mental state is. I need something. I need some treatment. I just can’t see any options.”
Gibson understands these feelings of frustration, but stresses there are other options. “I would suggest that if they can’t get to a mental health provider that they really speak to somebody else, like a GP or a counsellor or somebody who, even if that person isn’t going to make the diagnosis, may be able to advise them on ways of managing it in the meantime,” she says. “People don’t have to have a diagnosis to be helped. It’s been set up as a passport to getting help, but it shouldn’t be.”
At their worst, online communities encourage people to pathologise ordinary problems and over-identify with the labels they’ve given themselves – but at their best, they help people gather information, seek support and prepare for the lengthy process of getting a formal diagnosis.
For Anne, the key benefit of self-diagnosing online was realising she’s not a terrible person, and a different life is possible. “It gives me hope that I can change these behaviour patterns that I’ve found myself in, and be better in the future,” she says. “Whereas without that, if this was just the way I am, I would have no hope.”
*Names have been changed for privacy
The original version of this article contained reference to an online influencer that has since been removed