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School was a difficult time for Anna. It still haunts her. She recalls being a sociable child, good at making friends. But she also remembers becoming hyperfixated on one friend, then another and another in succession. She tended to be impulsive and, wanting to please others, easily led. One distressing incident in particular has never left her. On the first day after moving to a new school, she was relieved to be taken under the wing of two girls. At lunchtime, in fits of giggles, the girls egged each other on to do naughty things. Anna spat orange juice at the boys. She did it with relish, only to reproach herself later. She feels the episode coloured her whole school experience.
As a child and an adult, Anna felt sanctioned, judged and misunderstood. She considers herself a chameleon who adapts to new environments and survives by being funny, but all too often regrets things she has said. Her self-esteem is low. Anna is a nurse and, although she loves her job and is good at it, she still often feels inadequate. “People don’t think I’m as clever as I feel. I can’t get the words out quickly enough,” she says.
When she was in her early 20s, she remembers being exhausted all the time. She couldn’t control her emotions and complained of a poor memory. She left her keys in ridiculous places – one time in the fridge. She forgot to turn off the hob and unplug the iron. “I can never remember things people tell me, like how many children they have. I hate it because it makes me look as if I don’t care, and I do.”
Anna has sought medical advice many times throughout her life. In her 20s, her GP diagnosed her with depression and put her on antidepressants. They made her feel numb, so she stopped them. She saw a nutritionist who told her she had a yeast infection and put her on a restrictive diet. It helped but only for a few months. She saw a therapist weekly for 10 years and found that beneficial, but still her mood fluctuated.
Anna came to wonder if she was neurodivergent only when she was in her 40s, after a conversation with a friend who had been diagnosed with attention deficit hyperactivity disorder (ADHD). “I have always been lovingly teased as somebody who would trip over the pattern in the carpet,” she says with a smile. “I was quirky. So when my friend sent me a newspaper article about neurodivergence, the description hit me like a bus. The article could have been written about me.”
After some research, Anna paid to have an online assessment for ADHD. The diagnostic interview took 90 minutes. The assessor, who Anna thought was a psychiatrist but wasn’t sure, drew her attention to things she hadn’t noticed about herself. When asked if she was excessively fidgety, Anna said she was not, but the assessor pointed out that she had twiddled with her hair repeatedly during their consultation. Anna realised that she was unusually fidgety, remembering how she always doodled during meetings.
Anna now realises she has underplayed her ADHD traits all her life. The diagnosis made so much sense to her. Slow neurological processing explained why she had such a bad memory and could not communicate her ideas to other people as clearly as she wished to. No wonder she was exhausted, with all the effort required to camouflage her difficulties and hide her mistakes.
Anna now takes the stimulant drug methylphenidate (Ritalin). “The first time I took it, I couldn’t believe how clearly I could think.” She could make decisions more quickly, prioritise, and had more energy. I wondered how this affected the practical aspects of her life, in work and relationships. “Is my life better? Yes and no.”
Anna’s workplace have been supportive. They have made adjustments, such as giving her a private, low-ceilinged office, which she feels reduces noise reverberation and provides quiet when she needs it. She is also allowed to wear noise-cancelling headphones if she is in a busy environment. Colleagues have been taught not to burst into her office without warning. Despite this, Anna still finds work challenging and feels she has to constantly remind people that she has a disability. So much so that she is off work now and does not see herself ever returning. Part of the ongoing problem is that neither Anna nor her employer know what she really needs. “When somebody asks if I want help, I don’t know what to ask for,” she tells me.
I ask how family and friends received her diagnosis. A common response when she describes her symptoms is “everybody has that”. Everybody is a bit disorganised. Everybody finds work hard. “The difference is I feel like that all day, every day,” Anna says. “I never feel OK.”
I have been a doctor for more than 30 years and a neurologist for 25 of those. I have recently grown particularly worried about the large number of young people referred to me with four or five pre-existing diagnoses of chronic conditions, only some of which can be cured. Autism, Tourette syndrome, ADHD, migraines, fibromyalgia, polycystic ovary syndrome, depression, eating disorders, anxiety and many more.
The startling rise in people diagnosed with mental health disorders, behavioural and learning difficulties features regularly in newspaper headlines and in our conversations: “ADHD: what’s behind the recent explosion in diagnoses?”, New Scientist, May 2023. “Autism prevalence rises again, study finds”, the New York Times, March 2023. The story is the same for multiple categories of mental health disorder. “PTSD has surged among college students”, the New York Times, May 2024. “Depression and anxiety rates have increased by 25% in the past year”, Forbes, February 2023.
What do these astonishing statistics say about the state of our health? On the surface, they make it seem as if we are considerably less mentally and physically healthy than we used to be. But there are other ways of interpreting them. Could they simply reflect the fact that we are much better at recognising medical problems and identifying people in need of treatment? Disorders such as autism may be on the rise because people are finally getting the right diagnosis and being given support. But there is a third possibility. It could be that not all these new diagnoses are entirely what they seem. It could be that borderline medical problems are becoming iron-clad diagnoses and normal differences are being pathologised. These statistics could indicate that ordinary life experiences, bodily imperfections, sadness and social anxiety are being subsumed into the category of medical disorder. In other words: we are not getting sicker – we are attributing more to sickness.
Which of these explanations is most likely to be correct is a matter on which it is hard to find agreement. But it is very much in our interest to find the answer because the trend of detecting health issues in milder and earlier forms, and the assumption that is always the right thing to do, is pressing forward relentlessly.
I would make a case for possibility number three: that we are becoming victims of too much medicine and it is time to turn back the dial. That we are living in the age of diagnosis for mental and physical health conditions. And there is no better illustration of this than the recent explosion of people diagnosed with ADHD.
ADHD started out as a defined medical condition in the second edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-2) in 1968, in which it was referred to as hyperkinetic reaction in children, described in a single line as distractibility and restlessness that went away in adolescence. In 1980, the DSM-3 introduced the term attention deficit disorder (ADD), with hyperactivity added in the revised edition of the DSM-3 in 1987. The DSM-5 describes ADHD as a pattern of inattention or hyperactivity that interferes with social functioning or development. The diagnosis requires that the difficulties be present before the age of 12, that they are present in two or more settings, and reduce the quality of social, academic or occupational functioning. The distinction between mild, moderate and severe ADHD is very vague.
Like all medical problems, ADHD has a range of severities. One of my most vivid encounters with it was not with a patient, but in spending time with Kendra, the young daughter of a friend. Aged eight, Kendra, who had severe ADHD, had a level of energy and lack of focus that was impossible to keep up with. She pinged from person to person in a group, speaking quickly and jumping from topic to topic. She was a wonderfully affectionate child and I had the sense she was also very intelligent, but it was hard to test that theory because she couldn’t apply her attention to anything for long. I once joined her and her mother for a shopping trip. Such was her energy that no one could relax. I was sure she’d dash away and we’d lose her. She didn’t. She grew up safe and well cared for to become a creative adult. She still has problems with lack of focus. She found education hard, but she found her place. She’s an artist, which allows her to work at her own pace, in her own way, and which makes the most of her flexible thinking.
Diagnostic rates of severe ADHD, as Kendra had, are actually quite stable. But those with severe ADHD are now vastly outnumbered by those with mild ADHD. As with autism, there have been staggering increases in the number of people diagnosed with ADHD in the last 30 years, but that growth is almost all at the milder end of the spectrum.
New diagnosis in adulthood has gone from being very rare to as high as one in 20 adults in some places. These are almost all in the mild domain. The UK has seen a 400% increase in adults seeking an ADHD diagnosis between 2020 and 2023.
The diagnosis is less formalised than for autism. It involves a detailed clinical evaluation by a qualified professional. In addition, various rating scales are available to help quantify symptoms present that might indicate either inattention or hyperactivity. Many of these rely on self-reported symptoms. That makes the diagnosis inherently subjective. The DSM lists examples of the sort of difficulties that might be expected, including “often loses things”, “often does not seem to listen when spoken to directly”, “often avoids … tasks”, “often talks excessively”, “often fidgets”. The word “often” is open to interpretation. A diagnosis requires that symptoms interfere with the quality of social, academic or occupational functioning. That is very difficult to measure. Presumably any person who seeks out an assessment for ADHD will do so only because they are struggling in some aspect of their life.
A large number of people who have ADHD also have one or more other related diagnoses, such as autism, anxiety and depression. One study found 87% of adults with ADHD had a second psychiatric diagnosis and 56% had a third. The DSM-5 allowed a diagnosis of both ADHD and autism in the same person for the first time in 2013. Before that, these diagnoses were mutually exclusive. Since the DSM-5, the number of people with both is rising steadily. Anna has a history of depression and is considering asking for an assessment for autism.
The frank truth of it is that, despite decades of work, no biomedical research project has succeeded in finding any brain abnormality common to ADHD sufferers. There are no biomarkers that allow behaviours exhibited by people with ADHD to be distinguished from other disorders or from normal human experience. Even those researchers intent on finding the biological “cause” for ADHD will admit it is a condition that manifests in many ways in a wide range of people, and has lots of different long-term outcomes. Yet we gather people who have the traits considered consistent with ADHD under one medical category, studying and treating them as if they were a single group, all of whom unequivocally have a brain development disorder.
The biologising – or more accurately the pathologising – of mental health problems and behavioural disorders is a trend right now, within medicine and in society. It is not unusual to hear depression described as a serotonin deficiency rather than as a reaction to life circumstances. In that atmosphere, concentrating too much on the social or psychological aspects of illness is increasingly referred to as medical gaslighting by some patients – it is seen as denying somebody else’s truth.
Forgetfulness, lack of motivation, noise intolerance, social anxiety, low mood, distractibility and concentration difficulties are all part of the human experience. Each of these has become increasingly pathologised, in part because of their inclusion in categories in the DSM.
Systems that classify illness and disease are essential, and I can’t see how health services or research facilities would operate in their absence. The problem with the DSM is not that it exists but that it is taken more literally than intended. It also seems to be very hard to dial back DSM categories, even when it is clear they have gone too far. Whenever a tightening of criteria risks taking a diagnosis away from some people, a new diagnostic label is usually created so nobody will be without a diagnosis. That is what happened in the DSM-5, when a “social (pragmatic) communication disorder” category was developed to account for people who might no longer qualify as having autism according to the newest criteria. Every new volume even suggests problems worth considering as future “conditions”. The DSM-5 committee suggested “caffeine use disorder” as a potential category for the next edition. This is defined as problematic caffeine use leading to impairment and distress. And the biologising is already under way: studies on twins show caffeine overuse is heritable and variants in the ADORA2A gene have been associated with it.
The DSM approach is not the only way. Many fear, as I do, that biologising mental distress and behavioural problems can get in the way of an examination of life and society that might lead to personal insights that could contribute to more lasting improvement. There is a growing feeling among some medical professionals that there should be a move away from an overly biologising approach. Vocal among that group is psychologist Lucy Johnstone, who sees the diagnosis of mental health conditions as obscuring personal meaning, damaging personal identity and removing agency.
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Johnstone prefers to conceptualise mental health problems as survival strategies rather than brain disorders. In this theory, experiences that are described as “symptoms” are actually a reaction to threats and a manifestation of what a person needs to do to overcome that threat. Humans are essentially social beings. Troubled behaviour and low mood are inseparable from their social environment and relationships. As Johnstone says, what is classed as mental illness can be a person’s attempt to be protected, valued or to find their place. For Anna, this might mean examining how events such as the need to change schools in the middle of an academic year affected her. Her subsequent feelings and actions might be better regarded as a survival strategy rather than as a brain disorder. “Our behaviour is an intelligible response to our circumstance, history, belief systems and bodily capacities,” Johnstone says.
When mental health problems are viewed in this way, recovery starts to seem far more possible. The importance of this is illustrated by the story of Prof Paul Garner, a UK-based senior medical doctor and researcher. In March 2020, Garner caught Covid-19 and was shocked to find himself severely fatigued weeks after the acute infection seemed to have passed. His initial infection had been mild but the aftermath left him feeling as if he had been hit “around the head with a cricket bat”. At points, he felt he was dying. He had a new symptom every day: muggy head, upset stomach, tinnitus, pins and needles, breathlessness, dizziness. In a blog for the British Medical Journal, he described his illness as like “an Advent calendar, every day there was something new”.
Garner is an infectious disease specialist. He expected that he, of all people, should be able to explain what was happening to his own body, but found he couldn’t. He wondered if the virus had triggered some novel immunological disorder that did not exist in medical textbooks. So he turned to the internet for answers and found he was not alone. In long Covid support groups, there were lots of people who shared his exact experience. Marathon runners who could no longer walk after mild Covid. Through the long Covid groups, he found his way to communities of people who had developed chronic fatigue syndromes after other infections. Many of these people had been ill for decades. His original expectation, based on his medical knowledge, was that he should get steadily better with time, recuperation and gentle increases in activity. But that was not marrying with his unfolding reality. A 10-minute bike ride taken on a good day had provoked a three-day relapse. So Garner decided to learn from the narratives of those who had been dealing with non-recovery for much longer than him. They recommended pacing: working within the limits of his energy levels rather than trying to exercise his way out of the situation. He took advice from a friend: “Stop trying to dominate the virus … accommodate it.” He learned to do less. That brought him to a baseline in which he was not getting worse – but he was not getting better, either.
That could have been where Garner’s story ended. By September 2020, he had improved but he was no longer recovering further. So he started searching beyond the non-recovery stories, for those with more positive outcomes. That was how he found Recovery Norway, a group of people who once had chronic fatigue syndrome but had beaten it. The group gave him a recovery mentor as well as another perspective and, crucially, a recovery identity. He realised that while pacing had helped him at the start, he had then become obsessed with it. As he described in his blog, he had started to unconsciously monitor signals from his body until he became paralysed with fear. He believed long Covid was a metabolic disease that had damaged his mitochondria, but the Norway group made him think differently. He didn’t doubt the virus had triggered the fatigue but felt he had later become caught in a vicious cycle of illness driven by his fear. Viruses cause fatigue in order to make people rest, which promotes recovery. But, in Garner’s case, his recovery had gone awry because he inadvertently conditioned his body to stay tired. Garner realised he had to retrain his brain to react differently to the fatigue if he was to get better.
“I suddenly believed I would recover completely,” he writes. “I stopped my constant monitoring of symptoms. I avoided reading stories about illness and discussing symptoms, research or treatments by dropping off the Facebook groups with other patients. I spent time seeking joy, happiness … and overcame my fear of exercise.” By the end of 2020 he had made a full recovery.
ADHD USED TO HAVE a recovery identity. In the 1960s and 70s, the DSM described it as condition that went away in adolescence. By the 90s, it was recognised that the symptoms did not always disappear completely but did lessen as people got older. Some studies found remission in up to 60% of people. Severe ADHD lessened but often persisted, while people with mild ADHD could expect a chance of full recovery. But ADHD is slowly being incorporated into the identities of many young people. Some support groups discourage the attempt to overcome ADHD traits. People are told to unmask and to share their ADHD selves with others. But learning to control our moods, behaviour and impulses is part of growing up, whether one has ADHD or not. We all become more socially competent, gain focus and are better able to cope through practice. Encouraging young people to do otherwise may be well-intentioned but potentially sets them up for non-recovery. The rise in subtler ADHD presentations in adults may also undermine a young person’s expectation that their difficulties will disappear in time. A growing population of adults have incorporated ADHD into their self-concept. When a medical problem is part of a person’s identity, it becomes inescapable.
Neurodiversity was coined in 1998 by the Australian sociologist Judy Singer. It is not actually a medical term but it sounds like one. In an interview, Singer described how she came up with it: “I got it from a combination of biodiversity, which is a political term saying it’s good to have diversity in the environment. I noticed that psychotherapy was becoming a bit of a joke and neuroscientists were the new priesthood, so I thought, let’s put them together.”
The term has come to be used to encompass a range of conditions, including depression, ADHD, autism, dyslexia, dyspraxia and Tourette syndrome. There is certainly a lot that is positive to be said about its use to remind us that all our brains are different and that, as a consequence, we perceive the world and function differently. There is no right or wrong way to behave or feel, and all ways of being should be embraced.
However, the problem is that the term is not used in that way. Instead, it is used as a counterpoint to the term “neurotypical”. A neurotypical person is said to organise their thoughts and behave in a “typical” way. A very common explanation for the difference between neurodivergent and neurotypical people is that the latter were born with an inbuilt handbook for life, which gives them an innate sense of social rules. Neurodivergent people did not receive the handbook and therefore have to work much harder to learn and fit in. The division of people into typical and diverse immediately contradicts the sensible statement that we are all different. It brings to mind George Orwell’s Animal Farm, where the pigs decide that “all animals are equal, but some animals are more equal than others”.
Neurodivergent conditions are still finding their place but what is clear is that people with that label are suffering. Their hardship is real or they would not have sought a diagnosis. Anna has struggled for a very long time. She’s had a lot of internal pain and needs support. But the question arises as to whether the benefits to those diagnosed with ADHD outweigh the drawbacks of being labelled with a brain disorder. If they do not, then this is an example of overdiagnosis – the diagnosis might be right but it is not beneficial.
The issue with overdiagnosis is always around the benefit of diagnosis and value of special accommodations to those mildly affected. One Canadian study compared university students with ADHD, some of whom received no special accommodations and some of whom were given help, such as extended time for tests and separate test-taking rooms. The students who got extra support perceived it as helpful but there was no measurable benefit in terms of academic performance. Several studies have looked at school-age children and students in higher education who were given various allowances, including a reduced distraction environment, use of a calculator, more frequent breaks and oral presentation of written information. Again, people with ADHD who received this extra support performed no better than pupils with ADHD who did not. One study found children screened for ADHD in school did not benefit but raised the concern that they were harmed by being labelled at such a young age. Similarly, special accommodations made to support adults with ADHD have yet to be proved to make a useful difference to their lives.
Stimulants are not first-line treatment for ADHD in children. They are reserved for when behavioural treatments and support are not enough. The short-term efficacy of stimulants in children is considered to be well-established in reducing symptoms such as hyperactivity. They improve concentration and teachers perceive better behaviour in children taking them. However, most studies have followed the children for only a short period of time. What is less clear is whether or not that symptom reduction translates to something more meaningful in the long term, such as a better quality of life or academic performance. Stimulant medication reduces symptoms only while you are taking it. For a more lasting treatment effect, behavioural interventions are needed. Again, children with severe ADHD are the ones who stand to gain from stimulant medication, because their disability is such that medication has a more palpable effect on their ability to concentrate on tasks such as reading so they have time to learn. At the mild end, there is doubt that stimulant use has enough of an impact to offset either the negative effects of labelling or the low expectation that can be inferred from a mental health diagnosis.
It is only anecdotal, but the lack of palpable life improvements for people diagnosed with either ADHD or autism is something that concerned me many times as I interviewed people about this subject. Of the scores of people I spoke to, all of whom were adults, all perceived their lives to be better off thanks to a diagnosis. Every person welcomed the diagnosis into their lives. But almost all had left their job, dropped out of education and lost many old friends. Several were housebound. The same can be said about those I spoke to with chronic Lyme disease and long Covid. I saw a worrying gap between the perceived benefit of being diagnosed and any actual improvements in quality of life. In most conversations, I was left wondering how long the positive impact of validation would last.
The people I talked to each got great psychological relief from their diagnosis and were sure it had made their lives better. Perhaps what they actually needed from a diagnosis was permission to do less in a world that values only very particular types of success. For some, medical diagnosis is a means to take the pressure off, so they no longer feel forced to continue chasing after an overly idealistic social and work life.
One woman’s story stood out. She’s an artist who has had some significant successes, but not the success she wanted. She would prefer to be an academic, she told me, but it wasn’t her talent. As a teenager, she imagined her adult self quoting poetry off the cuff. The pain of not turning out to be that adult was terrible for her. It stopped her enjoying the success she had. Eventually, a diagnosis of ADHD helped her accept that she could not be equally talented in every way she wanted. The diagnosis gave her some comfort but also caused stagnation in her life. It reinforced her belief in a lesser version of herself. Rather than being defined by a successful art career that others would envy, she became a woman whose life revolved around ADHD and was defined by the things she could not do because she was neurodevelopmentally different. I worry that a child told they are different in this way will underestimate themselves and limit their future.
Excessive medical diagnosis risks robbing people of a recovery identity and promoting intolerance by othering; by dividing the world into neurodivergents and neurotypicals. It must be very hard to set out or continue on life’s big journey if your aspirations have been narrowed by a diagnosis that is uncertain or offers very little. Let’s find a way to be more tolerant of difference and imperfections that still allows people to live a life unencumbered by a diagnosis.
