[DNYUZ] In the early 1990s, James Swanson was working as a research psychologist at the University of California, Irvine, where he specialized in the study of attention disorders. It was a touchy time for the field. The Church of Scientology had organized a nationwide protest campaign against the psychiatric profession, and Ritalin, then the leading medication prescribed to children diagnosed with attention deficit hyperactivity disorder, was one of its main targets. Whenever Swanson and his colleagues gathered for a scientific conference, they were met by chanting protesters waving signs and airplanes overhead pulling banners that read, “Psychs, Stop Drugging Our Kids.”
It was true that prescription rates for Ritalin were on the rise. The number of American children diagnosed with A.D.H.D. more than doubled in the early 1990s, from fewer than a million patients in 1990 to more than two million in 1993, almost two-thirds of whom were prescribed Ritalin. To Swanson, at the time, that increase seemed entirely appropriate. Those two million children represented about 3 percent of the nation’s child population, and 3 percent was the rate that he and many other scientists believed was an accurate measure of A.D.H.D. among children.
Still, you didn’t have to be a Scientologist to acknowledge that there were some legitimate questions about A.D.H.D. Despite Ritalin’s rapid growth, no one knew exactly how the medication worked or whether it really was the best way to treat children’s attention issues. Anecdotally, doctors and parents would observe that when many children began taking stimulant medications like Ritalin, their behavior would improve almost overnight, but no one had measured in a careful, large-scale scientific study how common that positive response was or, for that matter, what the effects were on a child of taking Ritalin over the long term. And so Swanson and a team of researchers, with funding from the National Institute of Mental Health, began a vast, multisite randomized controlled trial comparing stimulant treatment for A.D.H.D. with nonpharmaceutical approaches like parent training and behavioral coaching.
Swanson was in charge of the site in Orange County, Calif. He recruited and selected about 100 children with A.D.H.D. symptoms, all from 7 to 9 years old. They were divided into treatment groups — some were given regular doses of Ritalin, some were given high-quality behavioral training, some were given a combination and the remainder, a comparison group, were left alone to figure out their own treatment. The same thing happened at five other sites across the continent. Known as the Multimodal Treatment of Attention Deficit Hyperactivity Disorder Study, or M.T.A., it was one of the largest studies ever undertaken of the long-term effects of any psychiatric medication.
The initial results of the M.T.A. study, published in 1999, underscored the case for stimulant medication. After 14 months of treatment, the children who took Ritalin every day had significantly fewer symptoms than the ones who received only behavioral training. Word went out to clinics and pediatricians’ offices around the country: Ritalin worked. This was good news not only for families with children who struggled with attention issues but also for the corporations that offered them pharmaceutical solutions. In the years after the study’s initial publication, Swanson began consulting for drug companies. He advised Shire, which manufactured Adderall, a similar stimulant medication, on how to formulate an extended-release version of its product, so that children could take just one pill each morning instead of needing to visit the school nurse’s office in the middle of the day.
Though Swanson had welcomed that initial increase in the diagnosis rate, he expected it to plateau at 3 percent. Instead, it kept rising, hitting 5.5 percent of American children in 1997, then 6.6 percent in 2000. As time passed, Swanson began to grow uneasy. He and his colleagues were continuing to follow the almost 600 children in the M.T.A. study, and by the mid-2000s, they realized that the new data they were collecting was telling a different — and less hopeful — story than the one they initially reported. It was still true that after 14 months of treatment, the children taking Ritalin behaved better than those in the other groups. But by 36 months, that advantage had faded completely, and children in every group, including the comparison group, displayed exactly the same level of symptoms. Swanson is now 80 and close to the end of his career, and when he talks about his life’s work, he sounds troubled — not just about the M.T.A. results but about the state of the A.D.H.D. field in general. “There are things about the way we do this work,” he told me, “that just are definitely wrong.”
I’ve spent the last year speaking with some of the leading A.D.H.D. researchers in the United States and abroad, and many of them, like Swanson, express concern over what they see as a disconnect between the emerging scientific understanding of A.D.H.D. and the way the condition is being treated in clinics and doctors’ offices. Edmund Sonuga-Barke, a researcher in psychiatry and neuroscience at King’s College London, described the situation in personal terms. “I’ve invested 35 years of my life trying to identify the causes of A.D.H.D., and somehow we seem to be farther away from our goal than we were when we started,” he told me. “We have a clinical definition of A.D.H.D. that is increasingly unanchored from what we’re finding in our science.”
Despite the questions these scientists have begun to raise, the growth of the diagnosis shows no signs of stopping or even slowing down. Last year, the Centers for Disease Control and Prevention reported that 11.4 percent of American children had been diagnosed with A.D.H.D., a record high. That figure includes 15.5 percent of American adolescents, 21 percent of 14-year-old boys and 23 percent of 17-year-old boys. Seven million American children have received an A.D.H.D. diagnosis, up from six million in 2016 and two million in the mid-1990s.
Now, however, some scientists have begun to argue that the traditional conception of A.D.H.D. as an unchanging, essential fact about you — something you simply have or don’t have, something wired deep in your brain — is both inaccurate and unhelpful. According to Sonuga-Barke, the British researcher, the traditional notion that there is a natural category of “people with A.D.H.D.” that clinicians can objectively measure and define “just doesn’t seem to be the case.”
A.D.H.D. is defined in the D.S.M. as a neurodevelopmental disorder, but the symptoms of A.D.H.D. can be produced by a variety of environmental causes as well. Difficulty sitting still and sustaining attention can also be symptoms of a serious head injury, fetal alcohol syndrome, childhood lead exposure, early trauma and more. There is also a high rate of overlap between the symptoms of A.D.H.D. and those of other psychiatric disorders, including depression, anxiety, dyslexia and autism. Although the D.S.M. specifies that clinicians shouldn’t diagnose children with A.D.H.D. if their symptoms are better explained by another mental disorder, more than three quarters of children diagnosed with A.D.H.D. do have another mental-health condition as well, according to the C.D.C. More than a third have a diagnosis of anxiety, and a similar fraction have a diagnosed learning disorder. Forty-four percent have been diagnosed with a behavioral disorder like oppositional defiant disorder.
This all complicates the effort to portray A.D.H.D. as a distinct, unique biological disorder. Is a patient with six symptoms really that different from one with five? If a child who experienced early trauma now can’t sit still or stay organized, should she be treated for A.D.H.D.? What about a child with an anxiety disorder who is constantly distracted by her worries? Does she have A.D.H.D., or just A.D.H.D.-like symptoms caused by her anxiety?
Sonuga-Barke goes further, arguing that the entire decades-long quest for a biomarker has been “a red herring” for the field. He understands his colleagues’ desire to find airtight evidence for the biological nature of A.D.H.D. that could help them defend the diagnosis against those who would dismiss it altogether. “In the field, we’re so frightened that people will say it doesn’t exist,” he says. “That this is just bad parenting, from the right, or this is just a product of our postindustrial society, from the left. We have to double down because we’re terrified of what will happen to the kids who can’t get the meds. We’ve seen the impact they can have on people’s lives.”
But the reality, he says, is that “there literally is no natural cutting point where you could say, ‘This person has got A.D.H.D., and this person hasn’t got it.’ Those decisions are to some extent arbitrary. That doesn’t mean that the suffering associated with A.D.H.D. is imaginary, it just means it’s on a continuum. And that is the conundrum — the empirical crisis — for A.D.H.D.”
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