‘A diagnosis can sweep away guilt’: the delicate art of treating ADHD

Late last summer, in the waiting room of a children’s mental health clinic, I found Daniel, a softly spoken 16-year-old boy, flanked by his parents. He had been referred to the clinic for an assessment for attention deficit hyperactivity disorder (ADHD). As we took our seats on the plastic sofas in the consulting room, I asked him to tell me about the difficulties he was having. Tentatively, his gaze not leaving the floor, he started talking about school, about how he was finding it impossible to focus and would daydream for hours at a time. His exam results were beginning to show it too, his parents explained, and ADHD seemed to run in the family. They wanted to know more about any medication that could help.

I had just begun a six-month placement working as a junior doctor in the clinic’s ADHD team. Doctors often take a temporary post before they formally apply to train in a speciality. Since medical school I had always imagined I would become a psychiatrist, but I wanted to be sure I was making the right choice.

Armed with a textbook and the memory of some distant lectures, I began my assessment, running through the questions listed in the diagnostic manual. Are you easily distracted? Do you often lose things? Do people say you talk excessively? He answered yes to many of them. Are you accident-prone? He and his parents exchanged a knowing laugh. With Daniel exhibiting so many of the symptoms, I told them, this sounded like ADHD. I felt a sense of relief fill the room.

Later that afternoon, I took Daniel’s case to a meeting where the day’s new referrals were discussed. Half a dozen senior doctors, nurses, psychologists and psychotherapists sat around the table and listened as each case was presented, trying to piece together the story being told and decide what to do next. When it was my turn, I launched into my findings, laying out what Daniel had told me and what I had gleaned from his parents about his childhood.

“I think this is ADHD,” I said. I saw someone’s eyebrows rise. Then, politely but insistently, their questions began to pick at the story I had told, pointing out the inconsistencies I had missed. ADHD is a lifelong condition, it shouldn’t just appear at this point in his life. Many other things can make you lose focus: school-based anxiety, they explained, was a better fit. And he needed therapy, not drugs. I quickly left to organise another appointment, concerned that I had got a family’s hopes up and suddenly aware of how much I had to learn.

Diagnosing ADHD is tricky. It can be a slow, patchwork process, involving multiple interviews, questionnaires, computer tests and school observations, like trying to reconstruct a reel of film from jumbled stills. Demand for ADHD assessments has grown over the last few years. As diagnoses have risen, so have the number of children being prescribed medication, which increased 51% between 2019 and the end of 2023. Waiting lists for assessments have also grown and vary wildly . In some areas of the UK it can take just five weeks to be seen. In others, it can take more than five years.

In the face of the rising demand for diagnoses, NHS England recently launched a national taskforce to understand the causes and review the provision of ADHD services. Prof Simon Wessely, the former president of the Royal College of Psychiatrists, commented that the trend is unlikely to be “simply due to better recognition or help-seeking”. Others have claimed that ADHD has become a fad – an easy excuse for mediocrity spurred on by online trends.

For some of the colleagues I had started working with – seasoned experts in helping troubled children – the issue was becoming alarming. Around the table that day, someone muttered that every referral seemed to be for an ADHD assessment these days. They worried the sudden change would overwhelm the clinic and make it harder for children with other problems to reach us. They wondered what this change meant for the children we saw, and what it said about their worlds.

On the phone to Daniel’s mother, I said we needed to investigate things further. She tried hard to mask her frustration: “Well, as long as you are able to do something for him.”

* * *

ADHD makes it hard to sit still or focus. Its effects are felt broadly. They can be seen early in childhood and continue throughout people’s lives: not just affecting attainment at school and work, but also making it difficult to form social relationships, adapt to stressful situations and regulate emotions. It is associated with an increased risk of accidental injury and substance misuse.

In the US during the 1930s, doctors identified children who struggled to control the impulse to move about, using the term “hyperactive”. Studies were carried out on the effect of stimulant medications that were found to have the paradoxical effect of calming them and improving their focus. It was theorised that the drugs acted on a part of the brain, the prefrontal cortex, that was involved in planning tasks and behaviours, and that might be less developed in these children. In the following decades, the new diagnosis of hyperactivity, also called “hyperkinetic impulse disorder”, proved popular with psychiatrists and parents – in fact, as the historian Matthew Smith has described, it quickly reached “epidemic proportions”. By the end of the 1960s, in some parts of the US, between 5% and 10% of children were being prescribed medication.

In Europe, for much of the 20th century, child and adolescent psychiatrists were more resistant to diagnosing childhood disorders and to medicating them. As one child psychiatrist in Britain wrote in an article in 1981: “I don’t practise chemical warfare against children.” British psychiatrists preferred to understand children’s problems as a response to their environments. Those identified as having hyperactive disorder were the most severely and visibly affected, almost always young impulsive boys whose disruptive behaviour was unignorable. A British study in 1970 put the estimated rate of this condition at one in 1,000 children.

One of the pioneers of ADHD research in the UK, Prof Eric Taylor, tried to make sense of this disparity between Britain and the US in an article published in 1986 . He noticed that in Britain, children who couldn’t sit still were much more likely to be diagnosed with “conduct disorder” – defiant or aggressive behaviour often seen as a reaction to “problems of family life”. Taylor’s theory was that hyperactive children’s condition was different: problems appeared earlier in life, and over time their behaviour remained difficult, whatever their environment. It was possible that British psychiatrists were confusing conduct problems with hyperactivity.

Taylor’s article also suggested something else: that sometimes a child could experience attention difficulties without displaying hyperactive behaviour. Other research confirmed this, and the diagnosis was broadened in the 1990s to take into account the less visible but still real challenges of “attention deficit”. In paying more attention to symptoms of inattention, research also helped to explain why so few girls were diagnosed with the condition. Girls were rarely hyperactive, but rather tended to sit quietly at the back of classrooms, unable to sustain focus but without causing trouble. With this change in focus, estimates began to shift, and numbers of young people with ADHD are now thought to be closer to 1 in 20.

The hyperactive children were the first ones I noticed in my placement. It was hard to miss them. They couldn’t sit still or hold a conversation. After a few seconds, they got out of their chairs and began to roam, rooting through cupboards and climbing on furniture. The parents were tired and resigned to their acts of petty terrorism, and the children themselves seemed casually unperturbed by attempts to discipline them. One 12-year-old boy I saw had been given 500 detentions at school, more than there were hours left in the school year. “I prefer them to class anyway,” he told me matter of factly, while clambering on to a windowsill.

In these cases, we would try out different medications, seeing what worked and what didn’t. Every few weeks, I would see them again in the clinic and ask about side-effects or whether things had got easier at home or school. Sometimes, things improved quickly and dramatically. They re-entered the room placid and bashful, as though an inner force had been calmed. More often, it took months of experimenting, tinkering doses up and down, until slowly something finally shifted. With time and the right support, things often seemed to get easier.

But most of the children I met were nothing like this. Their problems were less obvious and harder to spot. These were the ones with attention deficit. The trouble is that these difficulties are hard to distinguish from other problems, such as anxiety, trauma and even poor sleep. They blur with unpathological boisterousness and normal absent-mindedness. I spent my first weeks in the clinic feeling lost, uncertain about where to draw the line, when to give the diagnosis and when not to, what to call normal and abnormal. I read the textbooks, but they weren’t much help. The children I met seemed to sit stubbornly outside these descriptions.

I also grew increasingly aware that a diagnosis does something more than just describe. Diagnose is a verb. It changes things, legally, in terms of rights to certain treatments and services. Less tangibly, it can affect how someone relates to themselves. A diagnosis can sweep away blame and guilt. The parents I met seemed conscious of this, too, in their own uncertain quest for the boundaries of normality. When I told one parent that I didn’t think her son had ADHD she asked me, “Well if he doesn’t, is he just bad?”

* * *

On a dark afternoon in November, the team sat together listening to Mel, a specialist nurse, talk about one of her cases, a young teenage girl. It was two months into my placement and I had got into the steady round of meetings, diagnostic clinics and drug reviews. Once a week we would gather to discuss complex cases, where the diagnosis was ambiguous or the patient’s medical history complex, wading through teachers’ questionnaires and computer test results projected up on a wall, in search of an answer.

Mel told us that the patient she had been seeing had periods of intense sustained attention during particular activities that she enjoyed. It seemed like a counterintuitive finding, but this was common in people with ADHD, she pointed out. “Hyper-focus” – as it has come to be called – isn’t an official symptom, but it is a useful clue. More experienced clinicians had a stock of well-weathered intuitions like this that I had begun to hold on to. In corridors and on coffee breaks, we would talk about the differences between boys and girls, between children and teenagers, and between different cultural backgrounds. We discussed the things that aren’t in the textbooks.

As time went on, I began to build up some of my own intuitions: how long it took a child to look at the clock on the wall; if they could follow a long question or whether they stared back at me blankly. Parents gave some good clues, too: I could see some who had given up on a fantasy of a more relaxed parenting style, forced to adopt a weary authoritarianism. ADHD has strong genetic links, and some parents were as bored and restless as their child. I watched one father slowly stop listening to me, slip out of his chair on to the floor and join his daughter cutting up bits of paper and colouring them in.

After a while in the clinic, I began to notice a pattern in the families I saw, a meaning in between the words they used. They had a sense of unexplainable difficulties from an early age, an awareness that something wasn’t the same as other children, that everything seemed harder. I heard it so regularly it became like a script my patients were unconsciously repeating, one in which I could almost guess the next line.

As much as expertise and experience, the team had to think practically about how to manage the growing caseload. Our waiting lists had risen dramatically, and the time it took for us to see each patient was getting longer and longer. Demand was so great that, since Covid, our team of more than 20 had grown from one of the smallest in the service to one of the largest. We were squeezed into the biggest room in the building, which was still too small.

We were also under pressure to reach a diagnosis faster: school visits to observe how children behaved in classrooms had become less common owing to time constraints. And we were relying more on computer tests that measured a child’s ability to focus on a repetitive task. We would gaze at the waiting list. Someone drew out a tangled diagram of our assessment pathway, trying to devise shorter routes through. But beyond employing new staff, there was only so much we could do. What was causing this? It was a question that loomed in the background to everything we were doing, but we largely ignored it.

A recent study showed that the way children in the UK express their distress has shifted unexpectedly over the past 10 years. Antisocial behaviour and delinquency – running away from home, drinking, smoking and taking drugs, property damage and theft – once the archetype of the “problem child”, have become less common. Psychiatrists euphemistically label this kind of behaviour “externalising”; an outward expression of inner distress. At the same time, “internalising” conditions, such as anxiety, low mood and self-harm, have increased, a trend that intensified during the pandemic.

As the way children express their problems becomes more internalised, child and adolescent psychiatry has had to change as well. Rates of antidepressant use in child mental health services have increased by 44% in the last decade. The doctors I worked with were deeply ambivalent about this change, and some of the older ones were quietly seething, seeing it as a drift towards the more medicalised approach of adult psychiatrists that they once defined themselves against.

* * *

During Covid, Rachel Acheson and Maria Papadima, child psychotherapists working together in London, often met distressed young teenagers who would come to them with psychiatric diagnoses they had given themselves. During consultations, the teens revealed that these were things they had heard about online or learned from their friends, and that had come to be strongly held components of their identities.

“I’ve worked with a lot of bright, high-achieving adolescents who felt they identified with the inattention subtype [of ADHD],” Acheson told me recently. Early adolescence is often a difficult experience, and mental health language can provide a way of understanding and coping with it. The young people she saw were suffering under intense academic pressures and from unstable self-image typical of the age. Sometimes, as Acheson and Papadima later described in an article , the young people felt a diagnosis such as ADHD was the only way to make themselves heard; something the adults around them would take seriously. Yet it was only in letting go of these illness identities that their therapy could progress and they could begin to understand themselves.

“During adolescence, we are inventing ourselves,” the neuroscientist Sarah-Jayne Blakemore has observed. Experimentations in identity are a fundamental part of separating from childhood. But the incorporation of mental health language as part of this seems to mark something new. Many have blamed social media for this trend. Online platforms like TikTok, where #adhd has racked up tens of billions of views, offer a wilderness of questionable self-diagnostic tips that might encourage it. But it is unlikely to be the whole answer. “We talk about the psychological cost of social media like it’s a universal fact,” the psychologist Lucy Foulkes has pointed out, but research trying to measure these harms have often only pointed to small, inconclusive effects.

Medical language has become more common among young people in other ways. There has been a recent push to teach simple therapy techniques in classrooms, educating children about mental health symptoms and giving advice about how to manage them in an attempt to prevent problems before they start. There is evidence that these education programmes, called “universal mental-health interventions”, can have a small benefit in reducing conditions such as depression. However, there is a growing number of researchers suggesting that they may have the potential to cause harm in some cases. One recent article showed that teaching these techniques might increase the rates of “internalising symptoms” such as anxiety and depression in adolescents for up to a year. One theory is that this could be because it encourages young people to understand milder, non-pathological experiences as signs of a disorder.

“For a child, solipsistic by nature,” the writer Rachel Aviv has said, “there are limits to the ways that despair can be communicated.” If young people exchange and amplify mental-health language on social media, they learn it first in the world around them, in the ways they are shown to be unwell: “Culture shapes the scripts that expressions of distress will follow,” she writes. This may be a paradoxical harm of recent mental health destigmatisation campaigns, making it harder for those who need help the most to be seen. “To recognise everyone’s struggles,” Foulkes has commented, “we’ve started labelling too much that is negative or distressing as a disorder.”

* * *

The clinic was open every day, but during the school holidays a predictable calm would come over it. The waiting room sat mostly empty, the phones rang less and appointments tended to be cancelled at the last minute. Why children needed us less when they were on holiday was not always clear, but we took it as a stark lesson in the stresses of going to school.

On a quiet day close to Christmas, four months into my placement, I got a phone call from the mother of one of my patients, a 10-year-old boy called Joseph. She sounded worried. She had received another phone call from Joseph’s teacher saying he was being disruptive at school and that his medication dose should be increased. It was perhaps the third time this had happened. I knew Joseph’s behaviour at home was taking a toll on his family. He would keep his siblings up all night, put things on the hob to watch them burn, and get into constant arguments. After months of things not improving, despite medication, I was struggling to think what to do next.

I walked down the corridor to my supervisor’s office and knocked on her door. After I’d explained the case, she wondered if his behaviour might be better understood not as a symptom, but as a reaction to the negativity he felt at home; the stress he was creating, but also experiencing. It is not always clear where ADHD ends and other behaviours – which might be termed “externalising” or just acting out – begin. Sometimes, when a case felt stuck, we needed to find new words to understand it. I switched Joseph to yet another medication, but also asked our family therapist if she could make an appointment to see him and his mother.

Despite growing concern around self-diagnosis, most of the children I saw came only reluctantly to the clinic. They understandably thought there was nothing wrong with them. It was their parents and teachers who sent them in. I saw one eight-year-old girl who hadn’t been told why she was brought to see me. As I began my questions, she quickly smelled a rat and triumphantly answered no to all of them, her mother looking on in frustration. Sitting with another young boy, who I was trying to convince to take medication, I asked him what he liked doing at school, hoping to show him how drugs might help. “I just like to schmooze,” he replied, breezily.

I saw Joseph and his mother again in the clinic a month later. I took him into a sparse room to measure his height, weight and blood pressure. It was usually an unbearably dull activity for him, but he sat calmly as I did it, muttering softly to his mother. As I put the blood pressure cuff on him, he reached out to hold her hand. They had had their first therapy session together, and a tension I’d seen between them before had begun to give way. Joseph’s mother told me that his teacher was much happier with the new medication. I wasn’t so sure it was this alone that had helped.

Advocating for your child, while keeping everyone onside, often seemed to me like a full-time job. Children who receive a formal diagnosis are able to access extra resources at school. Many apply for formal support from the local council. The number of applications for support have more than doubled since 2015, and some local authorities are struggling to fund them or process them in time. Nevertheless, teachers I spoke to explained to me that it was still the only way to guarantee special educational needs support.

I thought back to the parents I had met, how some of them tried to disguise their disappointment as I told them their child was normal; a small window of support closing up in front of them. Parents were fighting for the formal support given by a diagnosis, either by waiting in the long queues for an ADHD assessment or jumping ahead with a private appointment. Children without a diagnosis who were still struggling could no longer rely on the system to work for them.

When schools returned after the Christmas holidays, I checked in at an academy to observe a young girl for signs of ADHD. I sat unobtrusively with a clipboard at the back of the classroom on a small red plastic chair as a pack of 12-year-olds poured in and took their places. I always volunteered to go on school visits when the rest of the team were too busy. Children spend most of their lives in classrooms, but as an adult you rarely get to see inside them. It felt like field work, seeing them in the wild, without any of the sterile distortion of the clinic.

The teacher didn’t introduce me, and I was concerned I might distract some of the students. I shouldn’t have worried, there was so little concentrating going on. I had been warned about this class, but I was still unprepared for the commotion. Detentions scattered ineffectually around the room and a steady stream of students were sent out. Like most of the class, I found myself distracted by the noise, unable to focus on observing the girl I was there to see. She sat at the back of the room, shy and taciturn, disconnected from those around her. I worried about her mood, but there was little evidence that she had attention difficulties.

Classrooms have become harder places for children to focus in. The number of children in supersized classes (of 36 or more) has more than doubled since 2010, while government funding per pupil fell 9% in real terms between 2009 and 2019 . Teachers I spoke to described how it felt impossible to meet the individual learning needs of students, especially for those whose needs were greater. One teacher who had been working for six years explained to me that he was leaving because he was “tired of pushing a bunch of different shaped kids into the same hole”.

In his book Mad Travelers, the philosopher Ian Hacking observed that diagnoses seem to flourish only in particular times and places: they need an “ecological niche” to thrive. Thinking back on what I saw of teachers and parents, it was unsurprising so many of them were reaching more for ADHD. It offered a new niche in the resource-bare landscape of childhood in Britain today.

* * *

February marked the end of my six-month placement and I began to say goodbye to my patients and their families. I had got to know many of them well as the months had passed, and where things had got better we shared a sense of relief. At our last meeting, Joseph wordlessly pushed a box of chocolates into my hands, eyes averted, before darting out of the door. For many others however, whose issues seemed to stubbornly persist, the ending felt more ambiguous.

On one of my last days in the clinic, a teenager named Yasmin was booked in to see me. I had been with her on her whole diagnostic journey, from her first interview, to today, when I was going to formally give her a diagnosis of ADHD. She was bright, funny and loquacious, and I had liked her immediately. It was also clear she had fairly severe ADHD. She walked in on the first day with a cast around her arm. “Tried out a new dance move,” she had said by way of explanation.

The final time I saw many of my patients was when I gave them a diagnosis in what was called a feedback meeting. For most of them it marked the end of a journey that had begun long before they joined the waiting list. We would take time to talk through their past, making sense of the difficulties they had. We talked about the advantages ADHD can give: the creativity, imagination and drive that so often go with it, and how useful these can be when you find something you want to do. I would hand them a copy of a report that they could use throughout their life. For many of the older teenagers, who would come without their parents, this was enough – they didn’t need more support or medication, just the validation of a diagnosis and some advice for the future.

I brought Yasmin in from the waiting room and we sat down facing each other. The central heating, which had been broken for most of my placement, now blared intensely. Despite the cold outside, all the windows had been propped open as far as they could go, which was only a few inches. Both uncomfortably warm, we sat as I described the evidence the team had gathered and what the next steps would be. After I told her she had ADHD, I asked her how she felt hearing this. She looked away, and, after a long pause, she told me it felt good in a way, but quite confusing in others. She began to worry whether it would make her second-guess herself or subdue some of her spontaneity. I tried to reassure her, but I was worried as well.

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Giving someone a diagnosis changes things. It can expand the space around a child, loosening expectations, but it also enmeshes these characteristics in a language or story of illness – changing, as Hacking has written, “the space of possibilities for personhood”, making concrete what was before unfixed. It gives it a shape that isn’t always its own. In some ways, Yasmin already had her own solutions to the problems she faced. She was brilliantly creative and had a place to study at university, where a diagnosis would only have a small benefit. Labelling this bit of her, even if she fitted the criteria, felt arbitrary if it wasn’t useful to her. “People can be freed by these stories,” Rachel Aviv writes, “but they can also get stuck in them.”

I said goodbye to Yasmin and showed her out, discharging her from the service. As I packed up my things and left the clinic for the last time, moving to another job in another hospital, I thought about her and the other children like her I’d met; how in another time they would not have been referred to a doctor; how they might have been understood in other ways. I thought, too, of the language we have to voice distress, and that young people absorb – studiously – from the world around them. I wondered, not for the first time, if there were other words for distress, other languages, that we had begun to forget.

Names and some identifying details have been changed

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