In second grade, Paul couldn’t stay in his seat — and his rigorous South Florida private school had lots of seat work. After counseling with the principal, a series of visits to therapist followed. They probed issues from allergies to home stability before concluding that Paul, who is now 13, had attention deficit hyperactivity disorder.
While the family scrambled to learn more, the school tried to adapt. But there was no way Paul could stay at a desk for 40 minutes. He was soon struggling with reading comprehension, and his parents and teachers feared he would be left behind.
Paul’s mother would love to have enrolled Paul at a Montessori school, with its flexible curriculum and emphasis on body movement. But their city had none. And a public school would have been less attentive and no less dull. They toyed with homeschooling, but she couldn’t fit it into her own work schedule as a writer.
Medication was the next step. It wasn’t easy, Paul’s mom said. But she and her husband knew they somehow had to help him fit in and keep pace with his fellow students. They felt his education and career hung in the balance. So he ended up on Concerta, a variant of Ritalin. Both are powerful stimulants closely linked to amphetamines.
Still, the family worried about addiction and possible health effects of long-term use, a fear that still dogs them. Paul does thorough medical checkups every three months, including electrocardiograms.
Now 13, Paul has been using prescription stimulants off and on for six years. His parents have tried everything from folk remedies to Omega 3. Nothing worked. They lived on Google, looking for options. They took breaks from the medication. But sooner or later Paul would always come back and say, “Mom, I want to go back on the 'focus pill.' ”
Paul and his family have lots of company in this nervous leap into branded focus drugs. ADHD diagnosis rates for school age kids keep climbing, the Centers for Disease Control reports. As of 2011, 6.4 million kids had been diagnosed. In 2003, 7.8 percent of kids aged 4-17 had been diagnosed with ADHD. That number jumped to 9.5 percent in 2007 and to 11 percent in 2011. The ADHD drug prescription market jumped even more sharply, from $4 billion U.S. sales in 2007 to to $7.9 billion in just four years, IMS Health reports.
Is the rise of ADHD diagnosis signs of an epidemic — or a product of mass hysteria? And are the ubiquitous stimulants used to treat the condition a blessing or a curse? Experts argue, kids struggle, parents worry — and the jury remains out.
Sharply rising ADHD diagnosis rates are raising the blood pressure of Dr. Keith Conners, the emeritus Duke University psychiatrist and icon in ADHD circles. Conners was a pioneer in the field, publishing his first paper on Ritalin treatment in 1963. He developed the widely used Conners ADHD diagnostic test. Now he wishes it were used less often.
Conners is perturbed that 11 percent of school-age kids have received an ADHD diagnosis. “The best evidence for occurrence among kids” he said, “is about 2 to 3 percent. But there’s lots of bad evidence going as high as 20 percent. It depends on what kind of evidence you prefer.”
Even assuming a given diagnosis is correct, Conners said, an effective treatment program requires frequent monitoring to adjust dosages as patients get older. Sometimes doctors agree to higher doses because of pressure from patients and parents who enjoyed the modest bump in mood and focus, and simply want more of that effect.
Doctor shopping can follow, especially in the college years. “Pretty soon, these kids are getting into a dangerous range,” Conners said. He notes the case of Richard Fee, an aspiring medical student, profiled in The New York Times, who used ADHD drugs as a crutch to improve his grades. Fee ended up killing himself after going through forced but unmonitored Adderall withdrawal. Doctors had finally stopped giving him prescriptions after he had abused the drug to improve his school performance for an extended period.
And the drugs are everywhere on college campuses. Conners asked his son, who graduated from Duke University last year, how easy it is to get unprescribed Ritalin there. “Let me put it this way,” his son answered. “If you ask three kids for Ritalin, two of them will hand it to you right then.”
A social problem?
And yet, some reject the whole framework of ADHD as an illness.
Among the skeptics is Dr. Gary Greenberg, a psychotherapist and the author of “The Book of Woe,” which profiles the chaos in the psychiatric profession as it crafted its new diagnostic guidelines, the “DSM V,” which was released last year. Those new guidelines significantly loosened ADHD definitions, which critics say will lead to more dubious diagnoses.
ADHD is not an illness, Greenberg argues. There is no blood test, no brain scan, no x-ray for it. It is, he says, just a label we give to kids who are ill-suited for our increasingly narrow and unnatural educational and career options. Greenberg speaks passionately against using drugs to treat a problem imposed by poorly adapted social institutions.
“At the risk of being cliché,” Greenberg said, “we are facing a perfect storm.” Distractions are everywhere, especially the Internet, which exploded since 1994. Then we have the push for ever more “rigor” in the classroom. We are making enormous demands on the children, especially the boys. And schools don’t have the time or resources to deal with it.”
Dr. Elias Sarkis, a family psychiatrist in Gainesville, Fla., agrees with Greenberg that there is no real pathology involved with ADHD, that it is really just our way of saying that some kids are not designed to sit for hours in a classroom or work a desk job. And yet, Sarkis sees no real way around diagnosis and treatment.
“School is a very difficult environment for children with ADHD," he said, “but there is no use blaming modern complexity. There is no place in today’s economy for the yeoman farmer on a two-acre farm. If my kid were ADHD, I wouldn’t sacrifice him while waiting for the world to change.”
Born in Lebanon with French as his first language, Sarkis attended medical school in France and has close ties to the French psychiatric community. French psychiatrists are extremely averse to using drugs, and Sarkis often gets in vigorous debates with his friends and colleagues there.
French psychiatrists prefer to treat ADHD with “play therapy,” a form of drug-free therapy that Sarkis says works well for anxiety disorders. “Play therapy can be a powerful tool,” Sarkis said. But he views it as a clumsy half measure with extreme ADHD.
Sarkis guesstimates real ADHD incidence at between 6 and 8 percent of school-age kids. “But I am not an epidemiologist,” he hastens to add.
Whether the real number is closer to 3 percent, as Keith Conners says, or 7, as Sarkis guesstimates, few disagree that the 11 percent of school-age children, with rates still climbing, is too high.
Conners says he has many friends who are primary care doctors caught in a crossfire. One told him he only gets 15 minutes to diagnose a child, and only a few minutes at a time for follow up. That’s all the insurance companies will pay for.
Most primary care doctors never get a chance to explore stress from the street environment or chaos or abuse at home, Conners says. Nor do they have time to offer the kind of behavioral management of psychotherapy that more complex cases would demand. The drugs, he says, often become a mask, covering real problems that go unaddressed.
Those who can afford better care get a deeper probe. Sarkis spends at least an hour on initial diagnoses, in addition to the Conners exam that probes for underlying symptoms. But he knows most doctors don’t have that luxury. And he is well aware that false diagnoses often result.
It doesn’t help, Sarkis said, that the Centers for Disease Control Web page for ADHD flatly asserts that there is “no evidence” that ADHD can be caused by “eating too much sugar, watching too much television, parenting or social and environmental factors such as poverty or family chaos.”
While that statement may be technically true, Sarkis said, “The signals are all wrong.” The CDC website is aimed at parents and teachers who are looking for clues about how to interpret classroom misbehavior. Often these do have environmental or social causes, Sarkis says.
Real ADHD, in contrast, will be very evident very early in life, Sarkis says, and careful therapists spend a lot of time exploring early life. “I often ask how active the fetus was,” Sarkis said, noting that he sees a connection between prenatal hyperactivity and future ADHD. “More often than not I get a positive response,” he said. And both kids and adults with ADHD are extremely active in their sleep as well. “The sheets won’t stay on the bed,” he said.
But Sarkis watches closely for indicators of neglect, abuse or stress at home. He is particularly attuned to girls who were sexually abused. “When the brain is preoccupied trying to make sense of something like that, it can’t really concentrate on school work,” he said.
There is widespread agreement that casual ADHD diagnosis can alternately pathologize normal childhood and mask serious problems. The use of drugs in both cases has spawned a cultural meme, reflected in the lyrics of a recent song by British indie rock singer Paolo Nutini:
This kid’s too vibrant. (Give him some Ritalin.) Oh, he’s giggly. / He makes mischief. (Give him some Ritalin.) And he has to be told. / He can be disruptive. (Give him some Ritalin.) He can be antsy. / Oh, but let’s not forget, the kid’s only 5 years old.
The Centers for Disease Control offers a parallel rough list for parents who wonder about their child: “A child with ADHD might daydream a lot, forget or lose things a lot, squirm or fidget, talk too much, make careless mistakes or take unnecessary risks, have a hard time resisting temptation, have trouble taking turns, have difficulty getting along with others.”
This checklist, Greenberg notes, sounds suspiciously like anyone who ever attended grade school. He laments an economic decline that has destroyed skilled trades that used to be available to those who didn’t want to stare at books. His own teenage son would qualify as true ADHD, Greenberg said, and was “miserable” in the classroom before he switched to a technical school.
“The fact that these common traits turn up as criteria of a mental disorder says at least as much about the society that makes these demands, and the parents and teachers who fervently wish their children to meet them, as it says about the medical or pharmaceutical industry,” Greenberg said.
“There is no such thing as ADHD,” Greenberg said, again staking his outlier position. “Is it so important that everyone learn how to push paper as grown-ups? This is all about preparing children for the information society in a world full of electronic distractions.”
“I don’t disagree with all of that,” said Scott Kollins, now Conner’s successor as director of the ADHD program at Duke University. But unlike Greenberg, Kollins does view ADHD as a real condition that if undiagnosed can breed serious dysfunction, including anxiety and depression that lead to self-medication with drugs and alcohol.
Kollins says his clinic routinely spends four to five hours with a single patient, running them through a battery of tests and surveys, looking, for example, at family context and developmental history. He readily notes that he runs a “boutique specialty clinic” that uses the “gold standard,” and that such rigor is out of reach for most parents and medical professionals who are asked to diagnose on the run.
Kollins worries that popular overreaction against ADHD diagnoses presents a challenge, and that some recent treatments of the topic by journalists have been oversimplified and inflammatory. In particular, he pointed to a series of articles by Alan Schwarz at The New York Times.
Kollins reacted very strongly to that series, calling it a “disservice to medicine” that was “biased” and “reckless,” and arguing that it “polarized the issue to sell newspapers."
Kollins is as concerned about kids who never get diagnosed who actually have ADHD as much as he does about those who are mistakenly diagnosed who don’t have it. The false negatives are, he believes, probably about equal in number to the false positives. And failing to diagnose and treat can leave a bright child depressed and adrift, often leading to self-medication and substance abuse.
Overdiagnosis, misdiagnosis and underdiagnosis are all problems, as Kollins sees it. “You get well-intentioned clinicians who are doing the best they can in a broken system,” Kollins said.
Some people just skip the doctor and self-diagnose. Tom Metge, now 32, and his mom self-diagnosed his ADHD when he was quite young, but they chose not to seek formal diagnosis, partly because his mother was already reluctantly taking medication for a bipolar disorder, and both of them disliked the resulting dependency.
Today, Tom is a successful software engineer who recently accepted a nice job offer from Apple and is moving his family from Utah to Cupertino, Calif., this month.
Metge did it almost entirely without drugs, but he often has struggled. He dropped out of college during his junior year after a disastrous semester put him on academic probation. Family and financial pressures contributed to the fiasco, but ADHD was a major factor, he says.
A driven mass of good-humored nervous energy and a lifelong insomniac, Metge says he has a “black hole” in his head, a memory problem that makes him lose the thread of what he means to be doing.
After dropping out of college, Metge began working in technical support for a tech start-up, moving up to quality assurance and then to programming. In essence, he finished his college education on the job.
Metge keeps a notebook by his computer at work and takes notes on every step along the way, like Hansel trailing breadcrumbs. He took up Iron Man competitions because he felt the intense daily training regimen would translate to focus and control in other areas of his life. It did.
He does not see his ADHD as an illness, but rather just one part of his own genetic makeup. “I have compensating strengths,” he said. “ADHD is part of me, but it’s not me.”
Still, it remains a challenge. He recently went through a stressful career transition with another start-up company that intensified his “black hole” and left him depressed and struggling. For the first time in his life, he took an ADHD prescription, choosing Vyvanse because its controlled release makes it less addictive. Metge took it off and on for a year — using it to re-establish his own equilibrium before dropping it altogether and relying once again on his own coping strategies.
Though Paul has relied more on his “focus pills” to date, he and his family mirror Metge in blending determination to overcome with a realistic view of the challenges. At 13, Paul is already debating his career options. He loves to work with his hands. He loves working in the kitchen and he would like to be a chef, but he realizes that path might have a lower salary ceiling.
He says he wants to attend his parents’ alma mater, a prominent southern state university. His mom is not coddling him. Paul will start at a private high school this fall and is very aware that now his grades count. He knows it will not be easy.