Why has everyone suddenly got ADHD?

This story is part of the Good Weekend: Best of Features 2024 editon.See all 12 stories.

Writer Sophie Knight, 37, lives in Amsterdam. Most mornings, she unlocks her bicycle from beside her apartment building so she can ride to work as a freelance journalist and researcher. “There’s a sequence of things I need to do when I unlock it,” she explains. “I need to put my gloves on, put an earphone in and link it to my phone, put my phone in my bag, put my bike cover in my bag. Unmedicated, I can end up unlocking and re-locking my bike; I forget what’s going on with my gloves, what I’ve done with my earphone …” She laughs. “It’s sort of impossible to figure out where I am in the process.”

Like Knight, I also need to unlock my bike to ride to work. Even in Sydney, I also wear gloves in winter, and I often find myself putting them on, only to realise I need my thumb free to unlock my phone. So I take my gloves off, unlock my phone, put my keys and phone in my backpack, then realise I need my keys to start my bike battery. On and on it goes, until I feel like tearing myself limb from limb with frustration.

Knight – who is charming and articulate, with Mitford-style bobbed hair and lashings of green eyeshadow – has attention deficit hyperactivity disorder (ADHD). I do not. But in our relative experience lies one of the central quandaries of the condition. The fact is, we all sometimes display the behavioural characteristics of ADHD. We all get frustrated, forget our keys, find it hard to focus on boring tasks. Many of us live in some version of domestic chaos, struggle to be on time for appointments and, frankly, spend inordinate amounts of time buggerising around with our bikes. That is ADHD. But it is also life.

Today in Australia, more than 1 million people have ADHD, according to the ADHD Foundation Australia. Globally, by many estimates, ADHD may now be the most common mental health condition on Earth, by some counts affecting some 366 million symptomatic adults worldwide – significantly larger than its closest competitor, anxiety, at 300 million, according to the Journal of Global Health and the World Health Organisation – even without counting children.

In Australia, ADHD medication levels have more than doubled in the past five years: from 1.4 million prescriptions given to 186,000 people in 2018, to 3.2 million prescriptions to 414,000 people in 2022. During the same period, the costs to taxpayers through the federal government’s Pharmaceutical Benefits Scheme (PBS) rose accordingly, from $59.2 million to $151.96 million.

The net result is that suddenly all of us – kids at school, adults at dinner parties, HSC and VCE students in their exam rooms – are discovering that our friends, colleagues, family members, even we ourselves, have ADHD. What’s more, a bewildering multiplicity of factors – COVID-19 and TikTok, devices and historic under-diagnosis, Big Pharma and Instagram influencers – have been implicated in its rise.

But alongside this ADHD reality is another. ADHD has also become, arguably, the most controversial neurological condition in contemporary life. Confusion reigns: there are people for whom the condition has affected every aspect of their daily lives, and those who do not have a single symptom visible to the outside world; people whose lives have been transformed by diagnosis, and people who struggle to believe the condition exists at all.

There is uncertainty surrounding diagnosis (often inequitable, sometimes inadequate) and medication (often effective in the short term, of uncertain benefit in the long term). There are expert orthodoxies that seem sensible and well-founded, and a surprising scarcity of rock-solid scientific evidence. There are millions of Big Pharma dollars pouring into campaigns to market ADHD medications, and people who cannot get an appointment with anyone qualified to diagnose it in the public health system. And diagnosis really matters with ADHD, because – also controversially – there is no objective test for it. No genetic tests, no blood or biochemistry markers, no brain-imaging methods can tell you, categorically, that you have it.

So what on earth is going on?

Credit: Tom McKendrick

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Michelle*, a PR executive in Sydney in her early 50s, never imagined her son Gus*, now 18, had ADHD. He was extremely bright – a magnificent reader and “great at exams; he had nerves of steel”. But he always had social problems with other kids and with teachers. “He was that kid who yells out the answer in class, who runs up and disrupts the game because the other kids won’t let him play,” she recalls. “We all know that kid, and they’re a pain in the arse. Everyone found him really annoying.”

Nonetheless, Michelle, who had grown up in “one of those big Irish families where there was always a kooky aunt with lipstick up to her earlobes”, never considered having him assessed for any kind of neurological condition. “I think as a society we used to be much more tolerant – we all just rolled with difference and eccentricity much more.”

These days, it sometimes feels as if ADHD – characterised by some combination of the 18 symptoms of inattentiveness, hyperactivity and impulsiveness listed in psychiatry’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5) – is the quintessential metaphor for modern life. It can be classed as primarily hyperactive (displaying more overt, disruptive symptoms), primarily inattentive (displaying more forgetful, dreamy symptoms) or both. And yet it often exists alongside an ability to focus intensely. Gus’ ability in exams, for example, led to a scholarship at a private boys’ school. “But he couldn’t get it together to complete assignments, pay attention, listen in class,” says Michelle.

By year 10, the wheels were falling off: Gus was suspended from school and lost his scholarship. “I know it sounds ridiculous,” says Michelle. “He found class boring. Hello! But not just boring, literally unbearable: so much so, he’d do something impulsive or stupid to escape it. I remember an interview with his English teacher where she was literally shaking with rage: ‘Who does he think he is, yelling out and disrupting the class?’ ” After his suspension, Gus was “super-chastened, super-devastated. He managed to get his scholarship back, and we thought he’d turn it around. But he couldn’t do it. He could not do it.”

Academic under-achievement is a hallmark, but not a universal characteristic, of ADHD. Just as the condition exists on a spectrum, so too its impacts fall unevenly on people’s lives. Some people function extremely well – it’s common to hear stories of people with ADHD being innovative lateral thinkers; super-social; charismatic charmers. But many studies in multiple countries have found that ADHD can be associated with higher risks of bankruptcy, traffic accidents, relationship breakdown, risky behaviour, addiction and suicide.

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Today, most researchers don’t think the number of people with ADHD is actually increasing, even though it may seem as though the condition is suddenly everywhere. What has changed, however, is diagnosis numbers. And here, COVID has exploded all previous trends.

Since 2019, spurred on by lockdowns, Dr TikTok (36 billion views of #ADHD and counting) and celebrity diagnosis, the rise in ADHD cases has been exponential around much of the world. Whole sectors of society have begun seeking diagnoses which have rarely been seen historically, including enormous numbers of adults (it’s traditionally been seen as a condition of childhood), and females of all ages (it’s traditionally been diagnosed mostly in males).

There seem to be three factors behind this rise. The first is awareness. All those TikTok videos, all those celebrities with personal ADHD stories, have led to a welcome lessening of stigma for people truly affected, while at the same time suggesting a fashionable answer to a vast range of ADHD-seeming symptoms for everyone else.

Fashion is real in medicine: studies show that at least since the 18th century (when gout was perceived in certain circles as a desirable marker of aristocratic excess), people have actively sought diagnoses that confer social cachet. With ADHD, in a growing reversal of its historically negative associations as the “naughty boy syndrome”, there’s now an increasingly positive identification of it as a “superpower” of creativity and originality. Other psychological tendencies, like social contagion (in which people in contact with each other become more likely to express similar experiences) and confirmation bias (in which people seek only evidence that confirms an existing belief) have been turbocharged by social media, leading to a tidal wave of ADHD self-diagnosis.

“People are often self-diagnosing as a result of social media.”

Melbourne psychiatrist Dr Karrupiah Jagadheesan

“People are often self-diagnosing as a result of social media,” confirms Dr Karrupiah Jagadheesan, a Melbourne psychiatrist and chair of the ADHD Network Committee at the Royal Australian & New Zealand College of Psychiatrists (RANZCP), which aims to advance psychiatric science and practice in ADHD. “Psychiatrists are being approached by patients saying, ‘I have ADHD and I’m here for treatment.’ ” Christopher Ouizeman, a director of the ADHD Foundation, agrees: “Thanks to Dr Google, everybody thinks they’ve got ADHD. And there’s a lot of people self-diagnosing, and going from clinic to clinic until they get a positive diagnosis.”

The second factor behind the rise in diagnosis is money. Internationally, ADHD is enormously profitable for the pharmaceutical industry. An apparently lifelong but non-fatal illness, often diagnosed in childhood, with no cure, for which people can theoretically be medicated their whole lives.

Journalist Sophie Knight’s ADHD requires her to take long breaks between writing projects. “I need it to let my mind breathe again,” she says.Credit: Marieke den Ouden

Ray Moynihan is a veteran Australian journalist, author and academic researcher who’s been researching the intersection between illness and profit motive for decades. There are two dangers with ADHD, he says. Firstly, “we have a condition where the signs and symptoms can tend to blur with ordinary life. And so that’s a situation that’s ripe for industry-funded campaigns that will broaden and maximise the numbers of people diagnosed and treated. Now, that is industry’s role – to maximise their profits. But it leads to the second problem: the closeness between ADHD drug-makers and the most influential people within the medical, research and patient-advocacy groups of ADHD.”

Today, pharmaceutical companies fund a great deal of the scientific research into ADHD; they also pay for conferences, travel, and medical education for many ADHD professionals. This happens in all areas of medicine, Moynihan acknowledges – “But it shouldn’t. Clearly, if someone is helping pay your bills, you are more sympathetic to them.”

Another aspect of the ADHD money-making machine involves the recent rise of specialised clinics. These are centres (often operating only via telehealth) that have emerged in the past few years offering swift ADHD diagnosis and prescription – for a price. But questions have been raised about the diagnostic accuracy of places where patients are paying big bucks (up to $3000, a report from the ABC found last year) for diagnosis; and medics may be motivated by large salaries (greater than $900,000 annually) to deliver it.

Professor Ian Hickie is a psychiatrist and co-director of the University of Sydney’s Brain and Mind Centre. “I’ve asked several colleagues [who have experience of such clinics]: ‘Once people have paid $2000 to get to a clinic, how often do you say, no [you don’t have ADHD]?’ ” he says. “And the answer is, ‘Not often.’ ”

Christopher Ouizeman agrees there are “unscrupulous operators cashing in on the ADHD boom”. But, he adds, “there are also very good clinics out there.” (Good Weekend contacted several ADHD clinics that operate online services; none responded by deadline.)

The third reason for rising ADHD numbers is cultural. There is no doubt that, for many people with ADHD-like symptoms and their families, life is hell. In November last year, the final report of the Senate inquiry into ADHD diagnosis and support services was published. Of the 700 submissions received by the inquiry, more than 500 were from individuals, most with ADHD themselves: many are, as the Australasian ADHD Professionals Association’s (AADPA) director Louise Brown said, “heartbreaking” to read.

“[As a child] I was bullied, constantly in trouble for interrupting people in conversations and for going off on tangents”; “I always had this deep feeling that there was something very wrong with me”; “I dropped out, thinking that I was just ‘bad at life’ and would never amount to anything.”

How much of the suffering caused by ADHD is actually the result of social judgment, rather than physical impairment? The fact is, the entire concept of ADHD is intimately connected to what we, as a society, think is acceptable behaviour in public life. Some people with ADHD choose not to medicate on weekends or holidays – when they don’t have responsibilities to the wider world – because it’s their only chance, as Sophie Knight puts it, “to be themselves”.

But what does this say about the rest of us, and society at large? How much of someone’s individual identity do we expect them to sacrifice in pursuit of homogeneity? How rigid are we in our demands for qualities like punctuality, productivity, predictability? How much do we expect each other to juggle, manage and coordinate in our daily lives? And what are we doing to help people learn these skills in a world where our attention is increasingly atomised by technology? A world in which, let’s be honest, almost all the traditional training for deep focus – long reading; immersion in real-world tasks; exercising memory and complex problem-solving skills unaided by technology – have been replaced by devices which encourage, and cater to, ever-shorter attention spans.

These questions are particularly important for children – but for ADHD, it’s no longer just kids we need to consider. As the numbers of adults diagnosed rises significantly year on year, and as more and more apparently high-functioning, successful people are diagnosed alongside people who are more obviously struggling, we must ask: what exactly are we diagnosing for? What level of psychic distress, worried inattention, and rising sense of impending chaos is normal in this post-pandemic, climate-changing world? And what impacts might a medical diagnosis in this context have?

The New Yorker’s Rachel Aviv has written extensively about illness and mental health. As she puts it, “There are stories that save us, and stories that trap us.” Surely it’s important, as a society, to think carefully about the ADHD stories we’re telling. Ray Moynihan certainly thinks so. “As a colleague of mine once observed,” he says, “if we give a child – or anyone – the label of ADHD, we change their personal narrative for the rest of their life. For better, or worse.”

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As the proverb suggests, it’s hard to walk a mile in another person’s shoes. Yet to understand what’s going on behind an ADHD diagnosis, we’ve got to make the effort.

Sophie Knight had many of the classic symptoms of ADHD as a child: rolling out of bed nine times the first night she moved from her cot to a toddler bed; being nicknamed Tigger because she “bounced around so much”. But she could also focus extraordinarily effectively on things that fascinated her – in her case, reading, or, like Gus, high-adrenaline situations such as exams. As she’s grown older, she’s learnt to channel her ADHD energy and perfectionism into exercise, “and projects where I tell myself, ‘I must shop locally’; ‘I must get a daylight walk every morning’; ‘I must make chicken stock and ferment a billion things like a homesteader’ ″. Today, it’s not Knight’s behaviour that sets her apart from the ordinary person. It’s her mental landscape.

“Untamed ADHD feels, to me, like I have a fire hose of information spraying at me all the time,” she explains. “It feels like those game shows where they put cash in wind machines and you’re trying to grab the notes, but you just can’t. So I’ll be at a meeting and it feels like this torrent of information is rushing past me, and I’m just missing whole chunks of it.”

This might be because she’s distracted by a never-ending, constantly shifting stream of internal demands. If she sits down to watch an hour of TV, “I’ll get up maybe five times, because my brain tells me I need to fetch lip balm, get tea, take off my nail polish, text five people, stretch, do the washing-up, organise my desk.” Even when she’s exhausted or ill, this constant mental insistence never ends. “I remember when I had COVID, I could feel my body was exhausted, but I’d be thinking, ‘I could kill a cup of tea.’ So I’d go and get that and I’d be like, ‘Now I want a hot-water bottle.’ I’ll try and tell myself, ‘I’m so sick and tired, I really can’t get up again.’ But the thought will just hammer away at my head until I do it.” And yet, even once she’s started a task, there’s no guarantee she’ll finish it. “I can set a pan on the stove, turn it on, and think, ‘I’ll just get the cushions off the balcony before it rains,’ but then I’ll start watering the plants, and before I know it, the kitchen is full of smoke.”

By the time Knight and I are standing at our bicycles on opposite sides of the world with our hands clenched in fists of rage, therefore, it may seem like our experiences are similar. But for me, the bike debacle will (probably) be the summit of organisational chaos in my day. For Knight, it’s just one jagged peak in a daily mountain range of distraction and frustration. She often feels exhausted from fighting irrelevant demands, dragging herself back on task, revving herself up to stay focused. “It’s the constantness of it,” she explains. “It’s adrenalising, and also exhausting.”

Despite this, Knight is, to the outside world, a success: she’s written for Wired UK, the Financial Times and The Guardian. “Yes, but one story takes months,” she points out: “I don’t work full-time.” What people don’t see, she explains, is the way ADHD limits and restricts her life – especially her professional life. She’s always needed big breaks – up to two months – between jobs, “which my friends find sort of bizarre, but I need it to let my mind breathe again”.

She’s also left three jobs in the past decade due to exhaustion, and had a couple of major periods of burnout. These are times when “I’m absolutely physically exhausted. I get intense headaches and muscle pain, digestive upsets, constant headaches, insomnia, or I can’t wake up in the morning.” Knight is an optimistic, motivated person; it’s hard to see her exaggerating or malingering. After her last episode, she was unable to work at all for five months. “It feels like, you know, ‘I’m dying here,’ ” she says.

“ADHD has a huge impact on people’s lives,” says Dr Catriona Davis-McCabe, president of the Australian Psychological Society. “For children and young people, because they’re learning differently, there can be real anxiety and stress, real interpersonal issues, real difficulties at school. And that can follow them all their lives – at work, they wonder why can’t they be as productive, as successful – it can create relationship issues, anxiety, depression, frustration. So although sometimes, if there’s not enough education and support, people feel ashamed by diagnosis, it can also really be very positive – because they can understand their own past. It’s a real aha! moment.”

For these people, getting a comprehensive, expert and reliable diagnosis is crucial. And for the rest of society, believing in the challenges faced by people with ADHD begins with believing in the process of diagnosing them.

But it’s also true that diagnosis may not be the only answer, especially in mild cases. In 2022, researchers at The University of Sydney and Bond University looked at nearly 800 teenagers, half with ADHD diagnoses and half without (though they had similar levels of hyperactive/inattentive behaviours), and found that those with a diagnosis scored about the same on how they regarded their quality of life overall, but had worse outcomes in some areas, including their academic self-concept and their risk of self-harm. To use Rachel Aviv’s words, does diagnosis save us – or trap us?

Importantly, such research doesn’t question the existence of ADHD; only the best way to manage it. There are, however, some groups who struggle to believe ADHD is a real disorder at all.

“As an independent neurodevelopmental disorder, that can be treated by specific medications, it does not exist,” says Professor Jon Jureidini, child psychiatrist and head of the University of Adelaide’s Critical and Ethical Mental Health research group within the Robinson Research Institute. Jureidini is also the spokesperson of the Critical Psychiatry Network Australasia, a group of mental health professionals who believe ADHD is overdiagnosed and over-medicated.

“I know saying that makes me a pariah: we are treated like flat-earthers or climate change deniers.” (In fact, Jureidini is a respected professional from a mainstream institution – and though the group is a thorn in the side of received ADHD opinion, the ABC’s medical journalist Norman Swan has described it as an important means of “keeping everybody honest”.) Jureidini believes that “to gather a group of behaviours together and say, ‘Well, these behaviours are ADHD’ is to mistake description for explanation – and also to miss the chance of discovering the real root of people’s distress”.

Part of the problem with ADHD is that, as mentioned, there’s no straightforward diagnostic test for it. This in itself is not unusual in psychiatric conditions, but it makes ADHD “tricky”, as psychiatrist and researcher Dr Elia Abi-Jaoude put it during an international webinar devoted to ADHD in 2023, hosted by The British Medical Journal (BMJ). “It exists on a continuum. And it’s pretty arbitrary as to where we might draw the line between what is normal and what is pathological.”

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So how does ADHD get diagnosed? By clinical observation, interview, and various forms of rating and test assessment. Psychologists, psychiatrists and – in the case of children – paediatricians may all diagnose it, but only doctors can prescribe medication. In Australia, this assessment is based on the symptoms listed in the DSM-5, which are surprisingly general and include observations like “making careless mistakes, losing things, not listening, being forgetful; fidgeting, talking excessively, interrupting”. A child must display six symptoms to be diagnosed; an adult, five.

But – in contrast to what Dr TikTok would have us believe – this is only the beginning. Mark Bellgrove is director of research at the Turner Institute for Brain and Mental Health in Melbourne, co-founder of AADPA, and a professor in cognitive neuroscience at Monash University. “I could answer yes to six – or nine – of the DSM-5 conditions but not have ADHD,” he explains. “And that’s because the other condition that has to be met is impairment – and it has to be impairment across multiple settings, that is functionally disabling. A good diagnosis needs to be able to tease that apart. And a good diagnosis – and this is aspirational at the moment, because it isn’t always happening – is multidisciplinary: psychiatry working with psychology, for example.”

Credit: Tom McKendrick

Bellgrove’s aspirational diagnosis may involve not just the patient but also teachers, close family members and several health professionals. It takes multiple appointments, and must establish evidence not only of symptoms and impairments but also, in the case of adult ADHD, the existence of symptoms in childhood (before age 12). It must also exclude any other conditions that might potentially be causing the symptoms.

During the Senate inquiry, the committee heard that people seeking diagnosis in Australia can face wait times of more than a year, and a significant lack of resources, especially in the public system. As the Royal Australian College of General Practitioners (RACGP) put it in its submission, “Most public sector mental health services do not provide ADHD services to adults, in effect pushing people to private sector care and support.” For children, meanwhile, expert care is in such high demand in the public system that, as one GP told the inquiry, “We’ve basically got to the point where there is no access.”

“The ADHD-skilled workforce is not large enough [in the public system],” Jagadheesan, the psychiatrist, confirms, “and public funding is around severe mental illness, not someone with pure ADHD.” Even in the private system, “We don’t have exact data for wait times, but from what I’ve seen, it’s months. People are travelling interstate looking for appointments.”

“It’s basically a wealthy person’s syndrome,” contends Michelle, Gus’s mother. “And even if you’ve got the money [to pay for private diagnosis], it’s so hard to get in to see anyone. Gus was on a six-month [private] waiting list until I literally burst into tears on the phone and got on a cancellation list. It certainly cost us a few thousand to have him diagnosed, and then you’ve got ongoing costs, like ADHD coaching, at eye-watering expense.”

If medications are not available on the PBS they can cost more than $1200 a year; ongoing psychological or psychiatric appointments cost hundreds per session, and support like Gus’s ADHD coaching, which aims to help with organisational skills and time management, costs Michelle $250 an hour.

“It’s making health inequities worse,” says the University of Sydney’s Brain and Mind Centre’s Ian Hickie. “Because those who can afford [diagnosis and treatment] get more of it, and those who are more disadvantaged get less.”

In such a fraught system, perhaps it’s inevitable there will be problems: people not being diagnosed, being incorrectly diagnosed when they actually have a different condition, or being falsely diagnosed when they don’t have ADHD. All three are happening in Australia.

Historic underdiagnosis, according to many, is a significant factor in the current rise in ADHD numbers in Australia. “Historically we’ve been underdiagnosing adults, especially women,” says Monash’s Mark Bellgrove. “So even the current number of scripts is lower than what we’d expect, because we’re coming off a really low baseline.”

Credit: Tom McKendrick

Misdiagnosis, meanwhile, is also a risk. Multiple conditions, including autism spectrum disorder, depression, anxiety, hearing and speech problems, learning disorders, substance use disorder, insomnia and sensory processing disorder (to name only a few) can all be mistaken for ADHD, or occur alongside it: some estimates suggest up to 65 per cent of people with ADHD have a coexisting condition. “It’s easy to apply the DSM-5,” says Jagadheesan, “but to exclude other conditions does take time, and [the right skills and] experience.”

Misdiagnosis also occurs because many social and environmental factors create behaviour that may be genuinely mistaken for ADHD: for both children and adults, responses to trauma may look very similar to ADHD, as may reactions to stress from life changes like divorce, grief, bullying or abuse. For children, being young for their age at school may also lead to a risk of false diagnosis. A 2019 review in the Journal of Child Psychology and Psychiatry showed that of 19 studies internationally, involving some 15.4 million children, 17 showed that a late birth date relative to school year increased the likelihood of a child being diagnosed, suggesting developmental immaturity might sometimes be mistaken for ADHD.

False diagnosis, finally, is also an issue: either because people genuinely but mistakenly believe that they have ADHD, or because they are pretending to have the condition when they know they don’t. This is understandably an emotive issue for those in the ADHD space, but it certainly occurs, though no one knows to what degree.

Professor Ian Hickie says the cost of ADHD diagnosis and treatment worsens health inequities.Credit: Jessica Hromas

There are several reasons people deliberately fake it. As Ian Hickie points out, the stimulant drugs most often used to treat ADHD “can be used for diet and appetite suppression among young women – and increasingly young men. There’s also a secondary on-sell market for people using them as study aids.” Some ADHD medications may also be diverted as party drugs: dexamfetamine pills, for instance, known as “dexies”, are used recreationally for their speed-like effects.

Another motivation for false diagnosis is public funding. ADHD is not a condition considered “likely to meet the disability requirements” of the National Disability Insurance Scheme (NDIS), the federal government scheme which allocates disability funding on the basis of permanent impairment. But it is possible to receive NDIS funding for ADHD as a comorbidity alongside other conditions: another reason to improve diagnostic standards, according to Hickie. “We’ve seen with the overdiagnosis of autism in order to get into the NDIS, that if you create that loop, you may make the situation worse,” he told ABC Radio last year.

Hickie also believes that debatable ADHD diagnosis is occurring in the later years of high school, especially among private school students. “Most of it gets diagnosed in the year 11 and 12 period, and we see it go on into the university system,” he says now. “Parents – especially parents focused on higher education – have this feeling of ‘I want my kid to do as well as they possibly can.’ And at the same time, there’s a school-based incentive to get as many kids as possible scoring higher marks [in exams], to get the school’s ranking up. And so the two big things in private schools these days are huge amounts of personal coaching, plus ADHD diagnoses.”

Such diagnoses, the theory goes, can help with schoolwork because one of the main benefits of ADHD stimulant medication is that it improves focus and attention. In an academic setting, this allows for more sustained concentration and thus potentially better learning: the ability to sit, and study, for literally hours on end. But it increases focus for virtually everyone who takes it, which means it’s also appealing to ordinary students as a “cognitive enhancer”.

In addition, an ADHD diagnosis allows students in both Victoria and NSW to apply for special provisions like smaller exam groups, rest breaks and extra time in exams. These adjustments, of course, also benefit students with incorrect ADHD diagnoses – a fact not lost on parents. Hickie points to figures released by the NSW Education Standards Authority showing that 17.8 per cent of all independent private school students sitting the HSC exams in 2021 were granted disability adjustments, compared with 10.7 per cent of public school students.

Credit: Tom McKendrick

At dozens of high-fee private schools in Sydney – including Santa Sabina, St Andrew’s Cathedral School, Moriah College and PLC – more than 25 per cent of students received adjustments, compared with less than 2 per cent at public secondary schools such as Parramatta High, Cabramatta High, Wiley Park Girls and Sefton High. Hickie’s opinion is that many of the private school students accessing special provisions have ADHD diagnoses. How many of these are accurate, he wonders. “When you get down to it, about 3 per cent is the population estimate for prevalence. But when you’ve got private schools with 20 per cent – well.”

Ironically, however, it’s by no means certain that ADHD medication really does improve performance. In kids without ADHD, “[it] can make a lot of things worse,” Hickie adds. “Kids with mood disorders, anxiety, sleep-disruptive disorders: they have a lot of reasons why they’re not doing well that have nothing to do with attentional disorders. But medicating for [ADHD] may make mood more unstable, sleep-wake cycles more unstable.”

Mark Bellgrove believes the total number of people deliberately gaming the system in Australia is small. “Outliers are outliers for a reason – because they stand out from the norm. And [seeking false diagnosis] isn’t the norm in our experience. Does it happen? I’m sure it does. Should it happen? No.”

In 2022, the AADPA released the Australian Evidence-based Clinical Practice Guideline for ADHD (Bellgrove was one of its lead authors), which aims to offer a best-practice guideline for diagnosing and treating ADHD. “We completely do not support quick and dirty diagnosis,” Bellgrove says. “That’s just going to lead to overdiagnosis rates, misdiagnoses. What we want is comprehensive assessments, by properly trained clinicians, that can reassure the community that the diagnosis any one person gets is accurate and appropriate.”

Following their diagnosis, both Sophie Knight and Gus were prescribed medication. Pharmacological treatment for ADHD is the norm in Australia: it’s fast-acting, cheap (at least if accessed on the Pharmaceutical Benefits Scheme) and in 70 to 80 per cent of cases, successful at controlling symptoms – though not the social or emotional issues ADHD may cause. And although best-practice models consistently recommend that if medication is taken, it should be combined with other supports – behavioural, psychological, social – many ADHD patients receive no other regular help, either for lack of availability or because they can’t afford it.

Professor Mark Bellgrove says adults with ADHD have been underdiagnosed.

Most ADHD prescriptions in Australia are for psychostimulants: methylphenidate (sold under the brand names Ritalin and Concerta), dexamfetamine or lisdexamfetamine (sold as Vyvanse). Their precise action isn’t clear, but they’re thought to work by altering the activity of key brain chemicals, dopamine and noradrenaline.

Psychostimulants are listed as Schedule 8 drugs in Australia. This means they have a high potential for addiction, over-prescription and misuse. But doctors and patients like them because of their speed and effectiveness. In severe cases, medication can seem like a miracle cure. “It’s one of the gratifying aspects of doing this work,” explained Daniel Gorman, a professor of psychiatry at Toronto University, during the BMJ webinar last year. “You see kids improve very rapidly – before your eyes.”

What Gorman also points out, however, is that the long-term effects of ADHD medications are still not clear. “Unfortunately,” he said, “we have very little
robust evidence to inform us.”

Between 2018 and 2023, the Cochrane Group, an independent network of researchers and practitioners that produces the global gold standard in medical evidence analysis, conducted six reviews of various ADHD treatments. Reviewing hundreds of studies involving thousands of participants, they found that all scientific evidence about harms and benefits – for both psychological and pharmacological interventions – was of low, or even very low, certainty.

The problems, Cochrane reviewers explained, included very small study sizes, problems with blinding (keeping placebo/active medication identities secret), short study durations, and potential conflicts of interest and bias, such as funding by pharmaceutical companies.

This means, as Cochrane senior fellow Robert Walton writes in his summary: “that we can’t be sure about the effects or side effects of treatment … [and] that no certain conclusions could be reached about the benefits and harms of treatment.”

It’s important to say, of course, that this lack of certainty doesn’t mean the medications don’t work or aren’t safe when used as prescribed. But it does mean that at the most stringent scientific level, there’s very little good evidence either way. According to Mark Bellgrove, the Cochrane reviews “underscore that we still need better studies and more research”.

In the meantime, he adds, the majority of expert opinion internationally, plus that of the AADPA guideline development committee, is that “on balance, medications are going to help most patients, and have a very low likelihood of adverse effects: a very good safety profile. So it’s a balance of benefits to harms that we’re making; a balance of accessibility, and how easily these medications can be used in clinical settings. There’s a whole range of considerations that go into making the final recommendations beyond just the certainty of the evidence.”

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Both Gus and Sophie Knight took medication for ADHD. They also employed non-medical strategies, such as coaching (Gus), and a collection of DIY strategies such as limiting time spent online and taking long walks and cold showers (Knight). Their initial medication experience was revelatory. Gus was able to settle in class and get organised. “He’d be saying, ‘I’ve finished this! I’ve done that!’ It was like someone on ecstasy for the first time,” says Michelle.

As for Knight (who first took Ritalin, or methylphenidate): “The magical thing was the quietening of distractions. It was like having one of those caving head-torches focused on the task in hand, and everything else was in shadow. So I didn’t have to clean my shoes, or descale the kettle: I could leave those things till later.”

Nonetheless, after a few months, she found the side effects becoming less and less tolerable. She lost four kilograms off her slim frame, she was urinating “like a racehorse” and she often felt hollow and depressed. Her psychiatrist shifted her to dexamfetamine, which initially seemed gentler, like “snow falling on a fire”. But again, within a few months – especially during the days before her period – the side effects became unmanageable. As medication wore off at the end of the day (known as the “rebound effect”), “It felt like nothing made sense – like a dishwasher full of broken plates inside my head: everything just sliding and crashing around. People would call me, and I’d have to say, ‘I just can’t make sense of anything right now’ and hang up.” She grimaces. “But even so, for a while it was a price I accepted for the ability to do work during the day.”

In the end, however, she stopped taking medication. And indeed, anecdotal and research evidence suggests this is what many people with ADHD eventually do.

“I decided I was just going to deal with it with my old-fashioned strategies: blocking the internet, meditation, brain music.” Knight admits she still takes a quarter of a dexamfetamine tablet occasionally if work requires it. She knows doctors would not recommend customising a medication regime – but as she puts it, “Well, I used to take three of those tablets a day. How can a quarter be doing me more damage than three?”

Gus, for his part, has now been on medication for more than a year. He stopped for a while, says Michelle, during “a phase where he was like, ‘I’m a freak, I have to be medicated; I don’t want to be; do I have to do this for the rest of my life? I don’t want to do this.’ ” But he started again during his final year 12 exams. “I think he recognises that being medicated allows him to make permanent changes to his life,” Michelle says hopefully. “So it’s actually changing what he’s capable of.”

That being said, he doesn’t medicate on weekends – “and he’s really oppositional when he doesn’t” – and she has some fears about the future. “I think the transition to uni could be very difficult after the structure of family and school. But possibly his course will be absorbing, and he might not need medication.” She shrugs, shaking her head. “To be honest, it’s all a bit of an unknown at this point.”

It’s hard to know what lies ahead for anyone when it comes to ADHD. The Senate inquiry made 15 recommendations about improving access to diagnosis and care, which are being considered by the federal government.

Karrupiah Jagadheesan hopes that the RANZCP and the RACGP can develop training modules that will increase GPs’ ADHD diagnostic capabilities, but formal proposals are yet to be finalised. Mark Bellgrove hopes the AADPA’s guideline can raise the quality and quantity of ADHD diagnosis and management nationally, but recognises this is an enormous task. Jon Jureidini, meanwhile, hopes that people, and especially children, won’t be overdiagnosed or over-medicalised, but effectively and compassionately assisted with the challenges they face. Indeed, that’s what everyone involved in the ADHD debate wants, whatever their beliefs about the rates of diagnosis, medication, and the condition itself.

What about people who are actually experiencing ADHD? Well, they seem to be hoping simply that daily life will get easier, one way or another. And this depends on many factors: more and better scientific research; greater precision and accuracy in diagnosis and care; and – last but not least, perhaps – deeper levels of social generosity and cultural tolerance among us all.

In the meantime, Sophie Knight, for one, looks for positives where she finds them. “I’ve learnt a lot through having this as part of who I am.” She smiles. “It’s interesting to see what I’m capable of; what my brain is capable of.”

* Names have been changed.

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