Some experts say that attention deficit hyperactivity disorder (ADHD) is an epidemic. Others, that it doesn't even exist. Some point to studies that show alarmingly high percentages of schoolchildren—especially boys—taking anti-ADHD drugs like Ritalin. The disorder is undertreated, the U.S. surgeon general has said. Too many toddlers are being treated for it with drugs, the White House declared last spring, announcing a conference on the topic.
The controversy has made it practically impossible for parents who are concerned about their child to figure out what to do. So many opinions cloud the debate that it's difficult to extract the few facts that are known. This is especially unfortunate, because if one thing is clear, it's that whether a child is properly diagnosed with ADHD and treated effectively—or treated at all—depends largely on his parents' active involvement.
Gurney Williams III is a science lecturer and award-winning journalist who writes frequently about health issues.
A Tricky Disorder
When Carol and Marc Pinard used to see bedraggled parents at the mall who were unable to control their running-around-like-crazy kids, or when they read newspaper reports about the "epidemic" of hyper boys on medications such as Ritalin, their automatic response was, "Those kids don't need drugs, they need better parents." But their view began to change when their youngest son, Jim, started to have problems in kindergarten.
He'd always been an active child, his mother says, who chose "preschool activities that involved running, jumping, shouting. He was never the kid in the corner quietly reading a book." But it's normal for 3-and 4-year-olds to go for active rather than sedentary play. It wasn't until kindergarten, when expectations changed but Jim's behavior didn't, that problems emerged. "He'd be distracted by kids walking in the hall or by a bug outside the window," says Carol. "He couldn't control his impulse to talk in class, not just to other kids, but to the teacher. He'd routinely shout out the first thing that entered his head, whether it was appropriate or not." And while his schoolwork didn't suffer—he kept up academically—his behavior disrupted the class and his ability to make and keep friends.
Things were difficult at home, too: "We'd send him upstairs to put on his pajamas, and he'd forget what he was doing before he left the room," Carol says. But it didn't occur to either parent that anything might be medically wrong until one day, a friend suggested that they find out whether Jim had ADHD. Then in first grade, Jim was increasingly disruptive in class. So the Pinards read a few books and discovered very quickly that his behavior closely matched the description of the disorder. Carol called several child psychiatrists "right out of the phone book," she says, and relatively quickly found Josephine Elia, M.D., an ADHD specialist at the Children's Hospital of Philadelphia. After testing Jim, she confirmed their suspicions of ADHD, and prescribed a stimulant called Adderol. It wasn't until the medication started to work that the Pinards shed their assumptions about the causes of behavioral problems in some children.
Although the Pinards ended up at a large hospital specialty practice, pediatricians or family doctors, who make the majority of the diagnoses of ADHD, should be capable of recognizing and treating it, says Dr. Elia. "They take care of most childhood ailments," she says. "Colds. Fevers. And attention deficit symptoms. I don't see that as a problem."
But many parents and doctors may be uncomfortable diagnosing a child whose symptoms seem simply to be that he can't sit still, follow directions, or color within the lines. ADHD is, after all, merely a collection of behaviors. There's no virus to look for, no blood test to administer. "It's just what people observe," Dr. Elia says.
This is why some view ADHD as a cultural disease more than an actual medical condition—and argue that boys are diagnosed with it three times more frequently than girls because society has become intolerant of behavior that used to be dismissed with a simple "boys will be boys." Other critics have suggested that diagnosing unruly children with a medical condition is merely an excuse for uninvolved parents who don't know how to discipline.
Identifying the Facts
By now, most experts are in agreement that ADHD is not a hoax, a myth, or a cultural construct. A council of the American Medical Association reported two years ago that ADHD "is one of the best-researched disorders in medicine." The American Academy of Child and Adolescent Psychiatry (AACAP) and the American Academy of Pediatrics (AAP) have each drawn up detailed guidelines for diagnosis and treatment of the condition. While there's no consensus on exactly how many children have it, the AAP estimates that the actual rate in 6- to 12-year-olds is between 4 and 12 percent.
ADHD didn't just pop up in the 1990s. Although the names for the underlying problem have morphed over the decades—from "minimal brain dysfunction" in the 1940s to "hyperactive child syndrome" in the 1950s and "attention deficit disorder" in the 1970s—researchers and parents have been perplexed by this condition since at least 1902, when the first medical descriptions of hyperactivity appeared.
The narrow focus on hyperactivity began to shift in the 1980s, when the American Psychiatric Association's authoritative Diagnostic and Statistical Manual of Mental Disorders for the first time listed attention problems and impulsivity as possible facets of the same syndrome.
Difficulties of Diagnosis
A century of study, though, does little to reassure concerned parents. Nor does it comfort others who, despite a doctor's diagnosis, may just assume their child is suffering from nothing more than youthful exuberance. Can doctors accurately identify ADHD when human behavior lies on a continuum and the line between normal and abnormal impulsiveness, activity, or dreaminess is often unclear? Yes. Long experience with the disorder has yielded reliable standards for diagnosis.
The problem is that parents can't count on these guidelines to be used consistently. According to a 1998 report by the National Institutes of Health (NIH), there are wide variations in the methods of diagnosis, depending on the type of doctor you see and even where you live.
Since diagnosis amounts to a judgment call, identifying sufferers—the first step in helping them—requires careful evaluation. An interview with the parent is the core of the assessment process. "Parents are the primary informants, the main channel of information used to make a diagnosis," says Jeffrey Halperin, Ph.D., an ADHD researcher affiliated with the Mount Sinai School of Medicine, in New York City. It can take an hour just to review with parents the child's medical history, looking for possible cases or symptoms of ADHD in other family members (studies show it often runs in families). Doctors also look for signs of physical problems, such as epilepsy, or of family crises (death, job loss, a recent move) that can trigger behavioral problems that may be mistaken for ADHD.
Some clinicians deliver the diagnosis after one interview, but ideally, a doctor's debriefing is only the beginning. Since the disorder is most commonly diagnosed when a child reaches school age (less frequently in preschool), input from his teacher or nonparental caregiver is essential. Symptoms that appear only at school or at home may indicate that the problem is not ADHD, but something related to the setting.
In addition, a third or more of children with ADHD face other psychological difficulties, according to the AAP (the AACAP estimates that this number might run as high as two-thirds). Childhood depression may show up as agitation, causing a hasty clinician to see only ADHD and prescribe a medication that won't solve—and may even exacerbate—the more serious problem.
Unfortunately, the careful interview and search for coexisting conditions can be sidetracked by the schedules many doctors follow today. "I was giving a lecture last year to adolescent-medicine practitioners about how to diagnose children, when someone raised her hand," says Glen Elliott, Ph.D., M.D., director of child and adolescent psychiatry at the University of California, San Francisco. "She said, 'We're scheduling two patients every 15 minutes. How can we possibly do what you're suggesting in seven-and-a-half minutes?' " You can't, Dr. Elliott told her. That's the problem.
The Risk of Misdiagnosis
Teachers began telling Patricia White that her daughter, Sarah, was afflicted with ADHD when the little girl was a 4-year-old preschooler. "She had a really hard time sitting still," says White, a home-care coordinator in Jackson, MI. "She'd zip and zing from one thing to another. I kind of blew it off, though. I thought, "There's nothing wrong with my kid.' " Pointing to the girl's short attention span and inability to follow directions in class, Sarah's kindergarten teacher suggested she be tested. Her first-grade teacher said Ritalin might calm Sarah down. "She was doing basically fine in school, so I said, 'No tests. No Ritalin,' " White says.
Although White was able to withstand the teachers' pressure, she did discuss Sarah's behavior with a pediatrician. Because it "only partly fit" what White knew about ADHD, she pushed him to consider alternative causes for the behavior problems. And when White reported, in the course of the pediatrician's evaluation, that Sarah snored, he referred the mother and daughter to neurologist Ronald Chervin, M.D., acting director of the Sleep Disorders Center, at the University of Michigan, in Ann Arbor.
What their pediatrician knew—but many still don't—is that sleep disorders in children can frequently result in ADHD-like symptoms. Dr. Chervin did confirm that Sarah was a restless sleeper, and after she spent a night being monitored in a sleep laboratory, Sarah was found to be suffering from sleep apnea. Every couple of minutes as she slept, she would stop breathing, sometimes for more than 30 seconds at a time before twitching and gasping. The sleep disruption—often undiagnosed in children—left her exhausted during waking hours. Her hyperactivity, Dr. Chervin suggested, might ultimately have been just her way of trying to jazz herself up so she could stay awake during the day.
Within two weeks of starting treatment (using a machine to keep her airway open to maintain a steady flow of air into her throat as she slept), Sarah was sleeping soundly; within a month, her ADHD symptoms had vanished. "Teachers said she made a remarkable improvement," White says. They stopped talking about ADHD.
Cases such as Sarah's, although rare in the opinion of many ADHD experts, are good examples of why an accurate diagnosis depends so much on active parental involvement. They're warning flags that schools, parents, and clinicians may be rushing to find a disorder that isn't there and missing one that is. Impaired vision or hearing, neurological problems in the wake of a playground head injury, and even poor nutrition can lead to incorrect diagnoses. And, warns the AACAP, some children may simply be at the high end of the normal range of energy and activity or have a difficult temperament, not ADHD.
No one knows the extent to which the disorder is being overly diagnosed. A recent study of almost 1,300 children and their parents showed that about 5 percent of 9- to 17-year-olds had been diagnosed, a percentage consistent with the NIH's estimates of ADHD prevalence. Only about one in eight of the children with ADHD had been given stimulant drugs such as Ritalin. So, claims of rampant overmedication seem to be unsupported as well. But the NIH's report does conclude that because of inconsistent diagnostic practices, some children are undiagnosed, while some are diagnosed unnecessarily and are, as a result, medicated unnecessarily. It's not known what percentage of ADHD evaluations lead to a misdiagnosis.
Drugs: Miracle or Menace?
Every doctor who treats ADHD—and many a parent—has stories to tell about how medication has changed a child's life for the better.
But even if drugs bring about a miraculous transformation, they're only the first small step toward managing the problem. "Treatment isn't just a Ritalin prescription," says Dr. Elliott. The best ADHD therapy for a child is a long-term program, usually with behavioral coaching as well as medication and regular follow-up sessions with doctors for as long as he is on medication, which may be until well into the teen years, or possibly even longer. Unfortunately, studies suggest that U.S. clinicians too often don't meet this ideal. To ensure that a child gets the care he needs, parents must:
Shed a fear of medication. "The duration from onset of symptoms to intervention is usually five to six years," says Joseph Biederman, M.D., chief of pediatric psychopharmacology at Massachusetts General Hospital, in Boston. "Too often, parents are afraid of using a controlled substance to treat their children."
Studies of stimulants' risk, conducted for more than 60 years, are reassuring. More is known about their use in children than that of any other drug, according to the AACAP guidelines. The vast majority of kids with ADHD enjoy clearer thinking and calmer behavior after starting medication. (There can be side effects, such as decreased appetite, sleep disturbances, abdominal pain, and headaches, but these can often be corrected by changing dosages or switching to another drug.)
Look beyond drugs. Although research indicates that medication with a psycho-stimulant is the single most effective treatment for ADHD, a nondrug treatment -- such as a parent's posting colorful stars on a chart for completion of daily tasks or homework, or talk therapy—can help it along (see "Talking to a Child About ADHD").
And even the usually effective drugs present some risk and have limits. Improvements in behavior, in attention, and in short-term memory don't automatically lead to higher academic achievement.
Continue to talk to the doctor. Treatment guidelines for doctors stress the need for strong doctor-parent communication while the child is on medication. But one out of four children treated for ADHD gets no follow-up care, says Kimberly Hoagwood, Ph.D., associate director of child and adolescent research at the National Institute of Mental Health, in Bethesda, MD. Her research reveals that the amount of follow-up care actually declined from the late 1980s until the mid-1990s.
Some doctors simply order their offices to send a new prescription automatically every month. "They say, 'See you in a year,'" Dr. Elliott adds. "And that approach is like asking for trouble."
Drugs for Toddlers?
The White House jumped into the fray last March after a report in the Journal of the American Medical Association showed the dramatic increases between 1991 and 1995 in the number of prescriptions for psychotropic drugs (medications that affect the mind) written for children ages 2 to 4. In one region that was studied, Ritalin use rose threefold in the four-year period. Are doctors unnecessarily foisting drugs on our youngest citizens? Political hype aside, it's too early to tell.
The main researcher for the study, Julie Magno Zito, Ph.D., associate professor of pharmacy and medicine at the University of Maryland, in Baltimore, says that while she is concerned about her findings, she doesn't yet know whether they point to a problem. "My study can't be seen as pro- or anti-Ritalin, good and bad guys."
That said, neither the AAP nor the AACAP has guidelines for diagnosing ADHD in children younger than 6. Behavior that is unacceptable in school-age children may be considered normal for toddlers and preschoolers.
Clearly, enormous strides are yet to be made, in both discovering causes for the disorder and ensuring proper diagnosis and treatment. There will be progress—but it will be made despite, rather than because of, the hype.