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Home / Lifestyle

ADHD: How self-researching, influencers and apps might encourage false diagnoses

By Polly Dunbar
Daily Telegraph UK·
10 Feb, 2023 11:21 PM8 mins to read

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While many find an ADHD diagnosis a life-changing discovery, an array of apps and influencers now surround the condition – and not all are helpful. Photo / 123rf

While many find an ADHD diagnosis a life-changing discovery, an array of apps and influencers now surround the condition – and not all are helpful. Photo / 123rf

When Kim Raine received her diagnosis of ADHD in 2021, she was flooded with a mix of emotions.

Grief, for the years she’d spent unable to pinpoint exactly why she felt different from others; all the times she’d lain awake at night with racing thoughts, suffered mood swings or worked all day and seemed to achieve nothing.

But there was also, she says, “a lightbulb moment – a sense that, at nearly 50, I finally understood myself”.

Rates of adult ADHD – attention deficit hyperactivity disorder – are skyrocketing: Up 80 per cent in the last five years, with official figures showing a sharp rise in prescriptions among over 40s.

According to the charity ADHD Foundation, there has been a 400 per cent increase in the number of adults seeking an assessment through the organisation since 2020 – due, in part, to problems being exacerbated by anxiety and lack of structure during lockdown.

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In January, former Great British Bake Off host Sue Perkins, 53, became the latest celebrity to reveal her own ADHD diagnosis, saying that “suddenly everything made sense – to me and those who love me”.

Others speaking about it include Loose Women presenter Nadia Sawalha, comedian Johnny Vegas and former footballer Jermaine Pennant.

For many people, a diagnosis of the complex neurological condition, which makes it difficult to concentrate, follow directions and control impulsive behaviour, can prove life-changing.

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It provides an explanation for why they may underachieve at work, say, struggle with addictions or experience problems in their relationships.

For women, it can be particularly illuminating. ADHD is sometimes referred to as “naughty boy syndrome”, because symptoms such as disruptiveness are viewed as stereotypically male; 10 times more boys than girls are diagnosed.

Research suggests just as many women are affected, but it often remains hidden because women are more adept at internalising their turmoil.

“Women are often people-pleasers and work harder to mask their concentration problems,” says Dr Sally Cubbin, a consultant psychiatrist at the Adult ADHD Clinic.

“As a result, they are often misdiagnosed with anxiety and depression and don’t get the right diagnosis and help until later.”

The current spotlight on ADHD has also spawned a growing grey area: That of self-diagnosis, whether via one of thousands of online quizzes, or identifying with symptoms listed by so-called ADHD influencers on social media.

With NHS waiting times of up to seven years for official diagnosis, and many trusts and private providers shutting waiting lists due to demand, it’s perhaps unsurprising many would seek other avenues.

Amber Leach, 40, says she realised she had ADHD in 2021 after seeing entrepreneurs discussing their diagnoses on Facebook.

“I thought, that’s me,” says Amber, who runs the marketing agency Established By Her.

“My whole life, I’ve struggled to sit still and focus. Then some projects I’ll hyper-focus on to the exclusion of everything else, staying up very late to work on them because I have no sense of time.”

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Self-diagnosing and researching the condition online has helped her to understand herself, she says, “and I’m trying to balance my life better, making sure I call friends and have date nights with my husband so I don’t neglect my relationships when I’m in that hyper-focused state, but I don’t think I need an official diagnosis”.

Others who self-diagnose may discover another consequence of the ADHD explosion.

An entire industry has sprung up around “managing” the condition. Where psychiatrist-driven treatment often involves medication such as methylphenidate (known as Ritalin) in combination with cognitive behavioural therapy, a quick Google offers a dizzying array of apps, online programmes and coaching – all at a cost.

One annual subscription to a “programme of support” is hardly a snip at almost £300 (NZ$570), while an app claims to “End ADHD”, which is impossible given that it is a lifelong condition. These programmes promise to teach sufferers everything from how to regulate their emotions to how to become a successful entrepreneur, some in only five minutes every day.

There are ADHD subscription boxes that are filled with “dopamine inducing” products supposedly designed to appeal to those with the condition, such as fidget toys. Photo / Getty Images
There are ADHD subscription boxes that are filled with “dopamine inducing” products supposedly designed to appeal to those with the condition, such as fidget toys. Photo / Getty Images

There are even ADHD subscription boxes filled with “dopamine inducing” products supposedly designed to appeal to those with the condition, including fidget toys, shiny stickers and pens with slogans such as “My brain is buffering”.

Of course, an online course may be more helpful than an influencer’s TikTok video.

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Research published last year found that more than half of ADHD videos shared, contained misinformation. But it’s difficult not to see the marketing of most of what’s available as cynical at best and at worst, exploitative of vulnerable people.

“Some people may be helped by some of these things, but others need medical treatment because ADHD is a serious condition,” says Dr Dinesh Bhugra, professor of mental health and cultural diversity at the Institute of Psychiatry, King’s College London.

“My advice would be absolutely don’t self-diagnose. There’s a vast spectrum within ADHD, ranging from very minimal symptoms to very severe. Medical professionals can advise on the best intervention, whether that’s teaching coping strategies, offering medication, or cognitive behavioural therapy, or a combination.”

Kim, 49, a mindset coach for high-flying women who lives in Frensham, Surrey, realised she probably had ADHD five years ago, when some of her clients, including the global head of talent for a famous media company, began to be diagnosed.

Throughout her 40s – a time when symptoms often become more pronounced for women due to diminishing oestrogen – she had noticed work becoming more difficult.

“I’d think, I’ve been at my desk, I’ve been working, but nothing has been done,” she says.

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Following her own diagnosis via Psychiatry UK under the NHS Right to Choose scheme at the end of 2021, she takes medication sometimes, but says: “The main benefit is having more compassion for myself.”

After training with the ADHD Coaching Academy, she is now a dedicated ADHD coach, helping women learn coping strategies such as breaking down tasks to avoid overwhelm.

Recently, she has noted with suspicion a flood of other coaches also rebranding themselves in the same way. “People who used to be business strategists, or life coaches, are suddenly ADHD specialists,” she says.

She worries that not everyone takes the same conscientious approach as her.

“I’m very aware it’s not my job to diagnose anyone,” she says. “I always encourage clients to seek the opinions of experts. Coaching can play a big part in helping people with ADHD, but they may also need medical treatment and therapy.”

Research published last year found that more than half of ADHD videos shared online contained misinformation. Photo / Getty Images
Research published last year found that more than half of ADHD videos shared online contained misinformation. Photo / Getty Images

Daniel, 44, spent more than £1000 (NZ$1900) on several online subscriptions after taking an online quiz which suggested he had ADHD during lockdown in early 2021.

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“I was feeling utterly lost and hoped the programmes and apps would help, but actually they were just another load of information making me feel overwhelmed,” he says.

Eventually, he was diagnosed with depression and is taking medication, which has helped.

“I don’t think I ever had ADHD – I was just looking for a label to make sense of how I was feeling,” he adds.

As Dr Bhugra points out, ADHD has become “fashionable”.

Although raising awareness can help to reduce stigma, he believes there’s also an accompanying risk of “anybody who’s disorganised or has poor concentration” claiming to have it. He adds that research suggests labelling ourselves with a condition can make us more likely to behave as if we have it.

In some online communities, ADHD is spoken about not as a potentially disabling condition, but a “superpower” which imbues people with extraordinary abilities such as creativity and tenacity.

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Amber shies away from that term, but believes ADHD is responsible for what she calls her “super-drive”. “I’ve always had loads of energy and ambition to make things happen and nothing was going to stop me” she says. “I wouldn’t be where I am today if I didn’t have that drive.”

For many others, though, ADHD can be highly debilitating. “I wouldn’t say ‘let’s celebrate ADHD’ – it’s a very impairing disorder,” says Dr Cubbin. “Statistically, you’re more likely to have road traffic accidents, teenage pregnancies, sexually transmitted diseases, addictions and relationship breakdowns.

“For most people, the only celebration when they get a diagnosis is the relief of having an explanation and the option to seek treatment, which can make a huge difference. The success rate for medication, in particular, is very high.”

Kim urges those with ADHD to remember that if the promise of a product seems too good to be true, it probably is.

“ADHDers need to be very aware that their impulsivity makes them more likely to spend money, because they want to find a solution,” she says. “But anyone offering a quick fix doesn’t understand the condition.”

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