SINGAPORE: Rates of conditions such as ADHD and autism seem to be ever growing, but some adults diagnosed in childhood are happy to be free of their labels.

More than three decades after he started his career as a child psychiatrist for the NHS in London, Dr Sami Timimi began noticing a marked shift among his young patients. More and more children, and their parents, were telling him that they believed they had neurodevelopmental disorders such as anxiety, autism or attention deficit hyperactivity disorder (ADHD).

“There were a lot more people who were expecting to be given medication. This was kind of unheard of,” Timimi says. “We’ve not really had a generation as pathologised as this one, and that’s just not good for them.”

When it comes to mental health, we are in an unprecedented age of diagnosis. One in five adults in England has a classified mental health disorder, while one in seven are considered neurodiverse. This is reflected in growing debate about the number of people claiming disability benefits. Government data shows that today, the largest category of people claiming personal independence payments (Pip) is those with “psychiatric and neurodevelopmental” conditions including (but not limited to) anxiety, ADHD and autism.

Last week Andy Burnham signalled he was prepared to make it harder for people to claim disability benefits to cut a severely bloated welfare bill, which covers four million people on Pip. More than two thirds of teenagers on the highest payment tier were getting Pip for their mental health and receiving £100 a week more than 16 and 17-year-olds working part-time on the minimum wage.

These figures hold a mirror to the soaring rates of diagnosis witnessed by professionals such as Timimi, who is among a small but growing cohort of experts asking whether we should think about diagnosis differently.

Before his recent retirement, Timimi started offering a very different service at his practice in Lincolnshire: “de-diagnosis”. Patients who had been diagnosed with a disorder such as ADHD but felt it no longer fitted, or didn’t help their wellbeing, could come to Timimi for reassessment.

The NHS characterises ADHD as an inability to concentrate, hyperactivity and impulsive behaviours such as butting into conversation or feeling restless. While someone exhibiting these traits may fit diagnostic criteria, the symptoms can be transient or related to external circumstances. If Timimi found a patient no longer met the criteria, if the symptoms could be explained by other factors, or if they felt it was simply unhelpful, he could write a letter as a consultant psychiatrist to say as much. This was then noted on their medical record.

It is particularly important for the diagnoses for conditions such as ADHD, argues Timimi, which he says “is not a legitimate medical diagnosis because it describes (badly and vaguely) behaviours but cannot explain them”. The label “just describes behaviours that occur in all of us to a greater or lesser extent”. Saying the reason a child is struggling to pay attention at school is because they have ADHD “is like saying the reason for the pain in my head is a headache,” he believes. “We are pathologising a variety of things that are getting lumped together.”

“Young people are struggling in all sorts of ways and the main culprit is of course the economy and a lack of opportunities. But labelling people with these psychiatric diagnoses is not going to help them get out of those particular traps that they find themselves falling into,” Timimi says. Rather, he argues, it becomes “much more likely that you’ll become a long-term patient. They have a kind of disabling effect.”

The concept of de-diagnosis emerged in Sweden three years ago as a study led by the universities of Lund and Gothenburg followed 100 adults seeking to overturn their childhood autism or ADHD diagnoses. On initial re-evaluation, 90 per cent no longer met the criteria for their condition. A recent follow-up paper showed that, among a younger subset of participants, many described how it had become “restrictive — limiting career options, influencing healthcare encounters, and shaping identity”. Shedding their labels has proven so beneficial for some that this year de-diagnosis was made available in psychiatric clinics across Scania county, on Sweden’s southern tip.

Timimi, author of books including Searching for Normal: A New Approach to Understanding Distress and Neurodiversity, said diagnosis creep could internalise the idea that there is something wrong with you. He said many of his young patients were encouraged to seek diagnoses by their parents and some had “collected” four or five conditions by their teens. “You start taking on the identity of being a patient, and once you’ve taken on that identity, it’s very hard to shift,” he says.

‘I was relieved to lose my diagnosis’

Marcus Siding, a 23-year-old local government volunteer in Sweden who has been de-diagnosed, says that when he received his diagnosis as a “high-energy kid” of 12, he was “pretty devastated, because my future just disappeared right in front of my eyes”. He had wanted to be a police officer but the diagnosis barred him by law.

When, in 2023, he sought a re-evaluation and it was declared he no longer had ADHD, he was “relieved”, and is now galvanised “to make sure that no one else goes through what I have gone through”.

It’s not just young people who are struggling with the label. Katie Stern, a 43-year-old writer from London, was diagnosed with ADHD last year, saying she sought a medical opinion with a goal to “tidy up my brain” after struggling for years. But she ran into long waiting lists: there are up to 550,000 people on the waiting list for an ADHD assessment in England and access to services can take up to five years.

Stern (not her real name) waited a year for medication, which left her ruminating on “whether it’s needed,” she admits. “I feel like a lot of people are jumping onto these diagnoses.” If so many of us are neurodiverse, she says, “Is it even diverse? Is it even a problem?”

Dr Suzanne O’Sullivan, consultant neurologist and author of The Age of Diagnosis: Are Medical Labels Doing Us More Harm Than Good?, says that “it’s phenomenally important that people re-evaluate” their conditions, rather than accepting them as lifelong. “A diagnosis should never be an end point.”

Yet with the NHS perennially overstretched, assessing and monitoring cases presents a growing challenge. Pressure is also being heaped on by social media, where celebrity-backed campaigns mean that “children and young people are examining themselves for these traits too closely and worrying about things they don’t need to worry about”, O’Sullivan says. TikTokers extolling often self-diagnosed conditions for clout “don’t really understand the amount of complexity that comes with diagnosis”.

Studies have started to look at the consequences of this potential overpathologising.

Last year, University College London published the results of a six-year trial involving 32,000 children aged 8 to 13 showed that normalising their feelings of sadness or stress, rather than labelling them as specific conditions in need of urgent attention, led to better results. A Department for Education review of mental health awareness in secondary schools found last year that some courses were “associated with increased emotional difficulties for young people”. Timimi thinks that all mental health awareness courses in schools should be stopped.

Another contributing factor is that over the years diagnostic categories have been relaxed in the Diagnostic and Statistical Manual of Mental Disorders, the reference guide for mental health and cognitive conditions. It means that some conditions such as ADHD, once believed to only affect children, are now applicable to older people and those with milder or less conventional symptoms.

These changes may have come from good intentions and a desire not to return to the days of underdiagnosis, but without longitudinal data to confirm whether labels actually improve ourhealth, they may well be meaningless.

Rather than pushing for diagnoses, “we would be better to support people by helping them to work within the messy truth of life”, O’Sullivan says. “I fear what the increasing unemployment figures suggest and the increasing mental health diagnosis figures suggest is that a well-meaning system may not be working as well as we thought.”