Editorial Note: This post is a review by Johanna Ryan of Alan Schwarz’s just released ADHD NATION: Children, Doctors, Big Pharma, and the Making of an American Epidemic.
Watching the triumphant final chapter of Michael Phelps’ Olympic swimming career last month, you couldn’t help admiring certain strengths that went beyond the merely muscular. The rigorous four-year training plan that allowed him to push his aging body (for an Olympic swimmer, thirty-one is downright geriatric) to go for the gold one more time.
The determination. The discipline. The focus.
Seeing him on TV with his fiancée and newborn son, confidently planning his future, you might be surprised to learn that millions regard Michael Phelps as having a dangerous, even life-threatening brain disease. Or that his decision to stop taking stimulant medication in his early teens remains controversial to this day.
Phelps’ “disease,” of course, is Attention Deficit Hyperactivity Disorder or ADHD, diagnosed when he was eleven years old. In his 2008 autobiography, Phelps revealed that he had stopped taking Ritalin at age 13 (with the support of his mother and doctor). He credited the structure imposed by his sport for helping him overcome his hyperactive, distractible tendencies—and even referred in passing to the Ritalin as a “crutch.”
While some ADHD skeptics cheered, the medical establishment reacted with horror. So did mental-health nonprofits, notably CHADD (Children and Adults with Attention Deficit Disorder). When the young champ was arrested for marijuana possession in 2009, and entered a rehab program after a drunk-driving charge in 2014, the critics pounced. In a recent column in Psychology Today magazine, psychologist Stephanie Sarkis scolded those who supported Phelps’ decision to stop taking Ritalin:
“While I have not personally treated Phelps, there is overwhelming scientific evidence that when ADHD is not treated with stimulant medication, your chances of substance abuse increase dramatically. When brain chemicals are low, the body finds a way to replace them.”
ADHD was “a biological, neurological, and genetic disorder,” Sarkis warned, and ADHD medications were just as vital as insulin for diabetics. The column ended with a shout-out to “the 11 million of us in the United States that do have ADHD,” including Phelps.
As of 2013, that includes 15% of American children, and 20% of boys. It also includes at least 10,000 toddlers aged three and under, as well as millions of newly-diagnosed parents and grandparents.
How on earth did we get here? That’s the question Alan Schwarz tackles in his new book, ADHD Nation.
The ADHD industrial complex
Schwarz begins by making clear that he’s not a radical ADHD skeptic. It’s a real medical condition, he says, and for some severely affected children the meds can be a godsend. Yet we know far less about this disorder than its promoters would have us believe. We don’t know for sure that it’s genetic. We don’t know what causes it. Most importantly, there is no objective test to distinguish those with “genuine ADHD” from those who are just a bit more active, or distractible, than average. Nor can we reliably tell the “ADHD child” from the child who acts up due to troubles at home, anxieties at school or simply being the youngest kid in his grade. Diagnosing ADHD remains a profoundly subjective project, influenced by social expectations, economic pressures and drug marketing campaigns.
Schwarz tells the story of how those forces led to the rise of an “ADHD Industrial Complex” through the career of one of its architects, psychologist Keith Conners. Conners’ initial studies in the late 1960’s of the potential benefits of Ritalin for children with severe behavioral problems did not attract much interest. The problem was known as “hyperkinetic reaction of childhood” or “minimal brain dysfunction,” and many parents reacted with alarm to efforts to medicate schoolchildren.
In 1980, the American Psychiatric Association’s DSM-III diagnostic manual redefined it as ADHD, based on a broad and somewhat confusing checklist of both “inattentive” and “hyperactive” behaviors. ADHD was estimated to affect between 2-3% of schoolchildren. By 1989, however, a streamlined checklist developed by Dr. Conners was being used by pediatricians and family doctors to diagnose the disorder, usually in a single office visit.
The rise of the ADHD advocacy group CHADD, and its success in adding ADHD to the list of disorders qualifying children for special-education funds, further fueled the rise in diagnoses. In 1995 a TV documentary revealed CHADD’s major source of funding: the makers of Ritalin, then Ciba-Geigy, now Shire Pharmaceuticals the makes of Adderall. Despite the temporary furor, CHADD’s industry-funded work spreading ADHD “awareness” continued to shape the views of parents, teachers and health professionals. Drug companies piled on with ads depicting the meds as panaceas for childhood problems from poor grades to temper tantrums and failure to take out the garbage.
One of ADHD Nation’s highlights is Schwarz’ dissection of a key 1999 study that changed the national conversation on stimulants and ADHD. Known as the “MTA Study,” it was hailed as showing that the pills were clearly superior to psychological therapies or school and home modifications. Here are the actual rates of “significant improvement” that study found in four randomly assigned groups of children with ADHD:
- Medication + therapy: 68%
- Medication alone: 56%
- Therapy alone: 34%
- “Neither”: 25%
As Schwarz points out, this meant that 44% of kids treated with meds alone failed to show significant improvement. Moreover, the kids counted as getting “neither” were not untreated. Rather, they received whatever “usual care” their doctors recommended – which in most cases meant stimulants! Yet their uninspiring results were not factored into the study’s view of medication. While the MTA Study was publicly funded, the experts enlisted to carry it out, by 1999, almost all had extensive ties to drugmakers – including Dr. Keith Conners.
Schwarz adds that a study lasting just over one year may have underestimated what behavioral therapies could do. It also oversold the benefits of medication: A 2009 followup of the “MTA Study” failed to find any significant differences between the original randomized treatment groups after three years! The group a child was assigned to “did not predict functioning six-to-eight years later,” the authors concluded.
Yet the official story was one of triumph: “Study Says Drugs Best Help for Attention Deficit,” as one headline put it. For drug companies and their allied medical experts, this message was pure gold. It also resonated with other social forces: managed-care insurance companies that balked at paying for extended therapies, not to mention cash-strapped public schools under pressure to cut their budgets. As one physician observed: “We’ve decided as a society that it’s too expensive to modify the kid’s environment. So we have to modify the kid.”
By 2013, the APA’s diagnostic manual estimated that about 5% of school-aged children had ADHD – but the actual rate of diagnosis was three times that amount and growing. Dr. Conners, now retired, came to regret his own role in this ADHD boom, calling it “a national disaster of dangerous proportions.”
The prescriptions, and the damage
Schwarz’ account of the overselling of ADHD is vividly and skillfully told, but it’s nothing particularly new. The scandal over the drug-industry ties of leading researchers in child psychiatry, particularly the group around Joseph Biederman at Harvard, has been covered in depth, as has the story of CHADD and the campaign to spread “ADHD awareness.”
ADHD Nation’s real contribution may be its focus on the damage done to a growing number of teens and young adults treated with stimulants. Schwarz introduces us to two young addicts whose problems started with a doctor’s prescription for Ritalin or Adderall. Both were almost certainly mis-diagnosed, and their paths to addiction may be more common than we suspect.
At fourteen, Jamison Monroe was a top student and star athlete actively recruited by St. John’s, the leading private high school in Houston. There he faced intense competition from classmates whose families, like his, all expected them to aim for elite Ivy League colleges – and got his first “D” on a biology exam. Jamison panicked. Then he borrowed a pill from a classmate diagnosed with ADHD, and thought he’d found a solution.
Jamison took the lead in his own misdiagnosis. He persuaded his mother to have him evaluated for ADHD, then easily convinced the doctor with carefully rehearsed complaints of distractibility, sagging grades and difficulty sitting still. He walked out with a prescription for Adderall, a newly patented amphetamine for ADHD that was actually just a repackaged version of an older weight-loss pill known as Obetrol.
At first Adderall looked like a win-win. Jamison got his grades back on track, and he found it easy to balance his demanding school schedule, the football team and a fun social life. Soon, however, he began taking extra pills – and discovered that combining alcohol and Adderall allowed virtually unlimited “partying.” Before long he was expelled from his elite high school, and his grades and behavior were increasingly erratic. It wasn’t till he got to college, however, that his frat brothers taught him a new trick: grinding up his Adderall and snorting it like cocaine.
Kristin Parber, by contrast, became a casualty of ADHD overdiagnosis long before her first act of “substance abuse.” After thriving in a flexible, learn-by-doing Montessori preschool, Kristin transferred to a strict private grade school, and trouble set in. By age eight she was prescribed Ritalin to control her hyperactive behavior, conflicts with other kids and classroom underperformance.
The little girl told every adult in her life that she hated the pills – and while her classroom behavior improved, schoolwork remained a struggle. The root of her problem, she now feels, was not ADHD but anxiety, which the Ritalin only made worse. By age eleven Kristin was on three medications for three “disorders”: Ritalin for ADHD, Xanax for anxiety and Lexapro for depression. Such multi-drug treatments for children, once unthinkable, became commonplace by the early 2000’s, and unrecognized problems with stimulants may have played a major role.
By her early teens, Kristin was crushing and snorting her Ritalin, mixing it with alcohol and street drugs, much like Jamison Monroe. Both went through multiple rehab stays before their addictions to their “medicine” were recognized and dealt with. Both now work at a treatment center started with support from the Monroe family, one of many now treating young people with prescription drug addictions.
This problem is often dismissed by drawing a line between proper medical use of the drugs, and illicit “abuse” by those who buy them on the black market. However, as Jamison’s and Kristin’s stories illustrate, many cases of abuse start with a doctor’s prescription – and quick-and-dirty “checklist” diagnoses like the one Jamison Monroe obtained are widespread. The line between “patient” and “addict” is blurrier than we think. In an April 2015 story for the New York Times, Alan Schwarz examined the price paid by growing numbers of adults using ADHD drugs to get ahead at work: Treatment stays for prescription stimulant addiction are on the rise, and emergency room visits for “nonmedical use” of the pills tripled from 2005 to 2011.
For a few, the consequences can be fatal: Schwarz tells the tragic story of Richard Fee, a Virginia college student who scored an Adderall prescription in college by checking the right boxes. Fee’s medically-endorsed amphetamine habit led to rapid addiction, paranoid delusions, and finally to his suicide in 2011.
Where do we go from here?
Some critics of mainstream psychiatry will dismiss Alan Schwarz book because of its first sentences: “ADHD is real. Don’t let anyone tell you otherwise.” Certainly Schwarz’ acceptance of the idea that ADHD is a proven, biological disease entity has its contradictions: He admits that its basis in “some sort of dysfunction among chemicals and synapses in the brain” is no more than a theory, and one open to manipulation. However, for severely affected children, the drugs may provide important benefits, and many have used them without evidence of harm.
At the book’s end, Schwarz suggests that outright ADHD denialism is not just unwise but “simply doomed.” The drugs are “here to stay,” he says. What we should concentrate on is beating back a tsunami of overdiagnosis that is motivated more by commercial interests than science.
“Whether it’s just one child or today’s six million,” Schwarz concludes, “if we’re going to tell a kid that he has a permanent, potentially devastating brain disorder, we’d better damn well be right.”
Michael Phelps, Nicole Johnson and baby Boomer.