How ADHD became ADHD

T The difficulties now grouped under the name ADHD are older than the diagnosis. People with pronounced restlessness, impulsivity and difficulties concentrating were described long before today’s diagnostic manuals existed.

What has changed is how these difficulties have been grouped, delineated and explained within medicine and psychiatry. Over a little more than a century, the names have shifted. Brain damage became brain dysfunction. Hyperactivity became attention deficit. Subgroups have been separated, merged and later called presentations.

That distinction matters. Because the behaviours were described long before our time, it would be wrong to dismiss people’s experiences as a passing fashion. Because the diagnosis has also changed, it would be just as wrong to describe today’s ADHD category as an unchanging biological entity that was simply waiting to be discovered.

History offers no simple verdict for or against ADHD. It shows something more useful: what the diagnosis can say, what has been put into it and why it needs to be understood as a classification that has developed historically.

Why it became a series

This began as a single text. I had long been thinking about the role ADHD has come to play in psychiatry and started writing to test those thoughts. But the material kept growing. Questions about the history of the diagnosis, claims to biological explanation, heritability, assessments, new concepts and financial incentives could not be addressed with the care they required in a single article. Eventually, I realised it needed to become a series in six parts.

My starting point is a concern, not a settled answer: that the ADHD diagnosis has gained too much influence and come to define too much of what we call mental ill health and of how psychiatry works. I want to examine what this may mean for the questions healthcare asks, the explanations given space, how resources are used and what help is offered.

The series is my attempt to examine that development step by step, without denying either the difficulties or the help people may have received through the diagnosis.

The behaviours came before the diagnosis

Historical accounts often mention the Scottish physician Alexander Crichton. At the end of the eighteenth century, he wrote about attention and its disturbances. A little over a hundred years later, in 1902, the British paediatrician George Frederic Still described a group of children with, among other things, restlessness, difficulties concentrating and problems with self-control.

It is tempting to say they were describing ADHD. We do not know that. These people were examined in another era, with other concepts and other assumptions about normal and abnormal behaviour. We cannot make a modern diagnosis of historical cases on the basis of brief descriptions.

The texts do show, however, that doctors have long tried to understand children whose attention, activity and impulses have caused substantial difficulties. They show that the behaviours did not begin with today’s diagnostic manuals. They do not show that today’s criteria are given by nature.

From brain damage to brain dysfunction

After the First World War, severe behavioural changes were noted in some children who had survived encephalitis lethargica, the epidemic brain inflammation also known as sleepy sickness. They could have difficulty concentrating, regulating their level of activity and controlling their impulses. The association with an established neurological illness strengthened the idea that similar behaviours in other cases were also due to brain damage.

At the end of the 1940s, the term brain damaged child began to be used. It was followed by Minimal Brain Damage, MBD. The problem was that the conclusion that there was brain damage gradually came to be drawn even when no damage had been demonstrated.

At a meeting on child neurology in Oxford in 1962, it was therefore recommended that the word damage be abandoned. The meeting’s conclusions were published the following year, and during the 1960s Minimal Brain Dysfunction became established instead. Damage was replaced by dysfunction. This was more than a change of name. The earlier term had sounded like an explanation, even though the behaviours themselves could not show that brain damage was present.

Here we see a recurring problem in the history of the diagnosis. A collection of observed difficulties is given a name that also implies a cause. When the cause cannot be substantiated, the category needs to return to describing what can actually be observed.

Treatment came before today’s diagnosis

In 1937, the child psychiatrist Charles Bradley published a study that would later become highly influential. At the residential treatment centre where he worked, children underwent neurological examinations that could cause severe headaches. Bradley tried the amphetamine preparation Benzedrine to relieve the headaches. It did not have that effect. Schoolwork and behaviour did, however, improve in some of the children.

In the published study, 30 children with various behavioural problems received Benzedrine for one week. Around half showed a clear improvement in their school performance. The children did not have ADHD according to any modern diagnostic manual. That diagnosis did not exist. The study was small, brief and conducted in a very particular care setting.

Bradley’s findings nevertheless became an important precursor to the later use of stimulant medication. At the same time, the study had limited influence in the decades that followed.

The sequence is worth noticing. A drug effect on certain behaviours was observed before today’s diagnosis had been created. That means neither that the drug proved a particular underlying illness nor that the treatment had no value. Symptoms can be influenced without the treatment response establishing why they arose.

When the name and boundaries changed

In the American diagnostic manual DSM-II, published in 1968, the symptom pattern was called hyperkinetic reaction of childhood. The wording emphasised overactivity and described the condition as a reaction in childhood.

With DSM-III in 1980 came a different model. Diagnoses were defined through clearer symptom criteria and the category was named ADD, Attention Deficit Disorder, with or without hyperactivity. The emphasis had shifted from visibly disruptive activity to attention and impulse control.

The system changed again as early as 1987. DSM-III-R introduced the name ADHD, Attention Deficit Hyperactivity Disorder, and revised the earlier classification. DSM-IV, published in 1994, later divided the diagnosis into predominantly inattentive, predominantly hyperactive-impulsive and combined types.

DSM-5, published in 2013, retained the 18 core symptoms but made several other changes. The age by which symptoms had to have been present moved from before seven to before twelve. Adults needed to meet fewer symptom criteria than children. Subgroups began to be called presentations, and ADHD could now be diagnosed alongside co-occurring autism within the manual’s system.

The WHO system has also used other boundaries and names. ICD-10 referred to hyperkinetic disorders and in some respects set narrower requirements. ICD-11 uses the name ADHD and the same three main presentations as the modern DSM tradition.

Sweden also had its own Nordic line of development. MBD gained considerable influence during the 1970s. When the concept was abandoned because it implied an unsubstantiated cause, DAMP, Deficits in Attention, Motor control and Perception, was developed during the 1980s. DAMP also emphasised motor control and perception and was used mainly in the Nordic countries. It was not synonymous with ADHD. During the 2000s, ADHD became the dominant term in Sweden too.

This is not simply a succession of new words for exactly the same thing. Which symptoms were emphasised, which combinations were required, when the difficulties had to have begun and which concurrent diagnoses were allowed have all changed. The category has been shaped by new research, clinical needs and decisions within classification systems.

What history shows, and what it does not

History shows that the difficulties are older than the diagnosis. It also shows that the category we now call ADHD is not timeless. It has emerged through repeated choices about which behaviours to group together, where to draw boundaries and how much the name should say about the cause.

That does not mean the suffering is unreal. It does not mean every diagnosis is wrong or that treatment cannot help. Nor does it show that the pharmaceutical industry invented ADHD. The commercial role that medication and diagnostic assessment later came to play is a different question from the origins of the diagnosis.

But history makes an overly simple story difficult to sustain. ADHD has not been discovered as an unchanging thing. The diagnosis has been constructed and revised to describe a pattern of real difficulties. It can therefore be useful without being a complete explanation of why a particular person has them.

That is where the next part begins.

This is part 1 of 6 in the series When the diagnosis becomes bigger than the understanding. The next part concerns the difference between describing a pattern of symptoms and explaining a person’s difficulties.