A rise in cases has been attributed to celebrities’ stories — but some say the condition is finally getting the attention it deserves.
Jannine Perryman was 41 when she suddenly understood why her life was so dysfunctional. Unable to concentrate at school, from a young age she’d begun playing truant. “I just wanted to be anywhere but school,” she says. “I couldn’t engage. I just kept being told I was stupid and lazy.”
Her parents couldn’t cope with her behaviour, so at 14 she was taken into care. She left school at 16 with one GCSE — a grade E in English. Out of the care system she was homeless for a period, sleeping on different friends’ sofas. “I couldn’t hold down a job because I couldn’t turn up on time or consistently pay attention.”
By the age of 21 she’d married and divorced and had a baby. Two more divorces followed and she became a single mother of three. “I didn’t pick the husbands I would have picked if I’d liked myself and didn’t have psychological bruises from all those messages in childhood,” she says. “I’d pick someone to compensate for my struggles, who, unlike me, was good with time, good with money” — but that didn’t necessarily make them a good match.
As a parent she was constantly on the back foot. “I was always the one who wasn’t in the playground on time, who forgot the permission slip and would have to run back for it, who forgot that my kids were supposed to be in fancy dress today.”
Perryman eventually won a place at university and went on to become a teacher. Yet everyday life was shambolic. “I’d always be running low on fuel, getting parking tickets, leaving things behind, missing train stops because I’d been daydreaming.”
An explanation for the chaos arrived nine years ago when she was told her daughter, who was autistic, also had ADHD or attention deficit hyperactivity disorder.
“I didn’t believe in ADHD. I was really quite angry at the suggestion,” recalls Perryman, now 50, from Liverpool. “I thought it was something only naughty boys had. But she was diagnosed, then my other daughter, then finally me. It was a real eye-opener. Suddenly I saw why I’d always struggled and because I understood those reasons I could put processes in place to stop struggling.”
Diagnosis boom
Perryman, who now runs an ADHD coaching company, is one of thousands of British adults who in recent years have been diagnosed with ADHD, a serious, complex neurodevelopmental condition that until 30 years ago was largely thought to affect only boys. Today the World Health Organisation estimates that ADHD affects not only 5 per cent of children worldwide, but also 2.5 per cent of adults. The ADHD Foundation says there are approximately 2.6 million people in the UK with the condition, 2 million of whom remain undiagnosed, it says, due to “poor understanding of the condition, stigma and delays in diagnosis”.
That stigma appears to be vanishing fast. Since 2020 the ADHD Foundation has reported a 400 per cent increase in adults seeking a diagnosis in the UK. For psychologists and psychiatrists who have worked for years to bring ADHD to public attention, the rise in awareness should be excellent news. Yet some are sounding the alarm bell that people are being misdiagnosed.
“After years of under-recognition for ADHD, it looks as though we’re now at risk of overdiagnosis. We’re already seeing it in the US,” says Philip Asherson, emeritus professor of neurodevelopmental psychology at King’s College London, who was on the team that drew up the first National Institute of Clinical Excellence (Nice) guidelines on adult ADHD in 2009.
The demand is taking its toll on already overstretched NHS mental health services, with the average wait time for referral now at three years — a delay that many experts fear is preventing the people most in need of a diagnosis from getting one.
Concern is growing about the cost to the public finances. Between 2002 and 2022 there was a 76 per cent increase in disability payments. One in nine children now has a disability — a rise driven largely by post-pandemic ADHD diagnoses, which represented one-fifth of all claims for child disability payments. Last year nearly 140,000 received benefits for behaviour disorders. In 2023, 52,989 adults received disability benefits where ADHD was cited as their main condition, up from 37,784 the previous year, a 40 per cent rise.
This is a phenomenon that crosses socio-economic barriers, yet members of both the middle and working classes are being accused of gaming the system. Recent research by the centre-right Centre for Social Justice (CSJ) think tank found charity leaders widely concerned by the push for diagnoses, which can then be used to claim a disability living allowance of between £26.90 and £172.50 (about NZ$56 — $358) a week on behalf of a child who is deemed to require supervision, depending on the severity of their needs. An adult can access personal independence payments of between £68.10 and £101.75 a week for ADHD, although just 43 per cent of such claims are granted. A diagnosis (either NHS or private) alone isn’t enough to access payments in the UK. A health professional will also need to carry out an assessment on behalf of the Department for Work and Pensions to determine — for example — if an adult is able to complete everyday tasks and how ADHD affects their ability to work.
Talking to mental health professionals, I was surprised by their exasperation at the clamour for ADHD diagnoses, which several described wearily as “the label of the moment” among the middle classes. That sentiment has been echoed in popular culture. The recent BBC sitcom Here We Go depicted a mum discussing with her teenage son whether he might have ADHD. The father responds: “Oh, he’s fine. He’s just lazy and distractable. That’s a symptom of being a living man.” The mum replies: “But if he’s got ADHD he’ll get extra time in his exams and a free laptop.” “Yeah, you should probably be tested, actually,” the dad says.
Some teachers I spoke to said they were angry that certain children from poorer backgrounds in their classes, who they suspected were struggling with ADHD, were missing out on the 25 per cent extra exam time that others were getting. “The educated parents know how to work the system to get kids who are just basically slightly rowdy, or scatterbrained, the extra exam time,” said one teacher at a comprehensive. “But there are so many children who could really benefit from a diagnosis who will never get one because their parents are too bogged down in their own problems to realise something’s wrong. Even if they did, they wouldn’t know how to take it to their GP and certainly couldn’t afford to go private.”
Joanna Moncrieff, professor of critical and social psychiatry at University College London, says she has been surprised by how many adults seek a diagnosis for themselves. “The mental health service where I work is overwhelmed with people wanting an ADHD assessment,” she says. “More and more people are saying to me, ‘Oh, my friend’s got it,’ as if they’re somehow feeling left out. The numbers mean we can’t help people who really do need help.
“People tell me about things that I do every day — ‘I forgot to turn the oven on. I lost my car keys.’ They get very cross if you tell them that these are behaviours and difficulties we all have to some extent, not necessarily signs of ADHD. They desperately want a label.”
Moncrieff suspects that much of the eagerness to obtain this tag is “a symptom of how insecure we all feel. We feel we should be doing better in life and want an explanation for that. It’s really sad. It shows how competitive modern life has become.”
So how often, in more than 10 years of practice, has she diagnosed an adult with ADHD? “Never.” Has she come across adults who she believes might have the condition? “In normal mental health service [ie not a dedicated ADHD clinic] I’ve come across probably one or two.”
The fame factor
Moncrieff suspects people are hugely influenced by celebrities talking about their life-changing diagnoses. Last month the actress Sheridan Smith spoke of how hers had helped her “make sense of a lot of things”. The chef Heston Blumenthal, TV presenter Ant McPartlin, Game of Thrones actor Kit Harington, comedians Johnny Vegas, Sue Perkins and Rory Bremner and the former Spice Girl Mel B are just some who have been diagnosed in recent years.
Meanwhile social media is packed with videos listing ADHD “symptoms” so broad-ranging that nearly everyone can tick off a handful. On TikTok, where videos with the hashtag #ADHD have been viewed 36.6 billion times, I immediately find a clip of a pretty blonde woman in a cut-off T-shirt leaping about to the song Beggin’ by Maneskin. Captioned “6 signs you may have ADHD”, it lists symptoms such as losing interest in hobbies, being late, ignoring texts and scrolling through TikTok. Frequently a link at the end of a video will lead viewers to an ADHD coaching course, supplement or tea that will transform the viewers’ lives.
A 2022 study reported that 52 of the top 100 videos about ADHD on TikTok, with an average of 2.8 million views each, propagated “misleading” information. Some of them “took common, everyday experiences and incorrectly said that these were symptoms of ADHD”, says the study’s author, Dr Anthony Yeung at the University of British Columbia.
ADHD symptoms vary from person to person but include difficulty starting and finishing tasks, difficulty engaging in quiet, leisurely activities, blurting out answers, being disorganised, losing things, being easily distracted and zoning out of conversations, impulsivity and time blindness. These are rooted in the brain’s prefrontal cortex — the area that enables us to plan, focus and control emotions.
The causes are thought to be a combination of hereditary and environmental factors and the downsides can be catastrophic. Studies show that about 25 per cent of adults being treated for alcohol and substance abuse also have ADHD. One in four British prisoners are estimated to have ADHD, up to 10 times more than in the general population.
Adults with ADHD are much more likely to have attempted suicide than those without. They have higher divorce rates, are more likely to be unemployed and to be involved in car accidents. Yet this is a condition that can be managed successfully with a mixture of therapy, behavioural coaching and, if necessary, stimulant drugs.
Confusion is heightened by the fact there is no definitive blood test or scan to pinpoint ADHD, or indeed any psychiatric disorder. “Who gets labelled and who doesn’t is a hugely subjective, difficult, disputed process,” Moncrieff says. “These diagnoses are labels for certain patterns of behaviour. We can’t say, ‘Oh look, that bit of the brain’s different or this chemical’s wrong.’ "
What is ADHD?
The term attention deficit hyperactivity disorder was introduced in 1987 as psychiatrists and psychologists refined their understanding of the condition. Initial studies focused on “hyperactive” boys, and medics believed ADHD disappeared in adolescence as the brain matured. But research in the 1990s disproved this, with a 2016 study conducted over 20 years by the US National Institute of Mental Health finding as many as 60 per cent of children with ADHD symptoms continue to manifest them in adulthood.
To meet the strict definition of adult ADHD set out by Asherson and his colleagues in the Nice guidelines, adults should be referred for assessment by a mental health specialist “when there is evidence of typical manifestations of ADHD (hyperactivity/impulsivity and/or inattention) that began during childhood and have persisted throughout life, are not explained by other psychiatric diagnoses (although there may be other coexisting psychiatric conditions) and have resulted in or are associated with moderate or severe psychological, social and/or educational or occupational impairment”.
“ADHD is on a continuum,” says the clinical psychologist Professor Susan Young, who helped write the original and subsequent Nice adult ADHD guidelines. “It is the same as with anxiety or depression — you can sometimes wake up and feel a bit low, or at the top of the range you have clinical depression that is so bad you can’t get out of bed. With ADHD we’re looking at symptoms frequently presenting that are severe enough to cause some form of impairment that affects your daily life. Things such as did you have to have extra support at school? Have you had to retake exams? Have you failed to get into an occupation you really, really wanted? Are you the person who lost their temper and ripped up a passport so you couldn’t go on holiday with your family?”
The whole assessment process should take about six weeks and involve processes such as looking at old school reports or speaking to a patient’s parents.
Yet the approaches of some private ADHD clinics are nothing like as meticulous. Last year a Panorama documentary exposed three clinics that provided an undercover reporter with a diagnosis after a video call and offered a prescription for medication. A more detailed assessment on the NHS concluded he did not have the condition.
“I was very disappointed but I wasn’t surprised,” Young says. “I once met a psychiatrist working for one of those practices shown on Panorama. He wanted me to join them. Then he very proudly told me that he can turn over an assessment of ADHD in half an hour, including drafting his report. I walked out.”
Faced with long wait times for referral, some people choose to be diagnosed privately rather than through the NHS. However, “you don’t want to get stuck in a position where you have a private diagnosis but are unable to afford private treatment”, warns the support group ADHD Aware. “It is possible to get a shared care agreement with your GP for medication (so you pay only the NHS prescription charge), but some will refuse if you have a private diagnosis.”
One NHS child psychologist tells me that parents who obtain a private diagnosis after having failed via the NHS route can get tripped up by this. “They’re furious when we say they’ll need an NHS diagnosis for us to prescribe them and must go to the back of the queue.”
‘When I hear it I feel really hurt’
For people such as Jannine Perryman and her children, who received NHS diagnoses after extensive scrutiny, it’s infuriating to hear of people “buying” a label, or to hear people casually using the phrase “I’m so ADHD” to excuse being late for a meeting, in the same way that OCD — another serious mental health condition — is often appropriated to describe anyone who’s tidy.
“To hear people minimise it by saying those things is not being compassionate to the struggle. When I hear it I feel really hurt,” Perryman says. “Everybody forgets the keys, loses this, that and the other from time to time, but when that’s your way of life, when you’re always on edge trying to pay attention to those sorts of things, when it’s chronic and pervasive, it needs to be supported.”
Young says that many adults with ADHD have learnt to cope and mask their symptoms for years, until some change in routine brings things to a crisis. It’s common in women — few of whom were diagnosed as children because historically the focus was on boys. They can be upended by the perimenopause, when falling oestrogen depletes levels of dopamine, the chemical that had bolstered qualities such as focus and inhibition. “So many fiftysomething women present, saying, ‘Life’s always been difficult but I’d managed. Now I can’t any more.’”
To these women, Young would suggest therapy to hone organisational, social and planning skills. Only if deemed essential would she recommend turning to a psychiatrist for medication. Five drugs are licensed in the UK for reducing symptoms of ADHD: methylphenidate (eg Ritalin), lisdexamfetamine (Elvanse), dexamfetamine (Dexedrine), guanfacine (Tenex) and atomoxetine (Strattera), of which the first three are amphetamines. It may seem counterintuitive to use stimulants to stop behaving impulsively or illogically but, according to the NHS, the effect is to increase activity in the brain, particularly “in areas that play a part in controlling attention and behaviour”.
Some people take medication as and when needed — during term time, for example, when focus is required, then not through the holidays. Side effects tend to be minimal, but there’s a small risk of heart problems and psychotic disorders. Anyone prescribed needs careful monitoring.
Some medical professionals ask whether a change in school culture might be better than prescribing drugs to teenagers. “There is no precedent in the natural world where groups of young adolescents are forced to sit still for several hours a day learning abstract concepts, such as maths and English,” wrote Dr David Turner in Pulse magazine recently. “The fact that most kids do is amazing. Yet we feel that those who struggle to pay attention to the teacher for a required number of hours are in some way abnormal and must be diagnosed with a mental illness and treated with amphetamines.”
Meanwhile many sufferers continue to gain huge relief from their diagnoses and prescriptions. Kat Brown, the author of It’s Not a Bloody Trend, one of several books on ADHD to be published this year, was diagnosed in 2020 when she was 37, after years of self-harming, depression, insomnia and binge-eating. Today she takes a combination of medications, although she has had to find replacements for some after recent worldwide shortages — partly the result of surging demand.
“The drugs aren’t magic but they definitely help. But it’s having the understanding you have ADHD that’s the glorious moment. That doesn’t make everything easier, but at least steers you on to a path where you know there are things out there that can help you. It’s no longer just you going, ‘Oh God, I’m a defective person who needs to beat myself up in order to get through life.’”
Written by: Julia Llewellyn Smith
© The Times of London
