Published in The Washington Post Magazine, June 17, 2011
It’s a struggle for Andrew Fraser just to be here.
He is sitting politely in the dining room of a Silver Spring church, where each Thursday morning all 36 students at the tiny Quaker middle school Andrew attends gather for silent meeting. The season is midwinter and the group, described by the school’s headmaster as mostly “bright underachievers,” is midway between childhood and teenagerdom. Some are dressed plainly, looking like kids whose clothes were picked by their parents; some wear camouflage and Eminem T-shirts. In the opening moments of worship, the room is remarkably quiet.
The silence is finally broken by a teacher who mentions that in this season of short days, ancient cultures treasured light, which explains why winter celebrations center on lavish displays of it. In the Quaker tradition, you pray for someone by “holding him in the light,” and the teacher suggests that the students of Thornton Friends Middle School might do that now.
A boy raises his voice to hold his mother and little sister in the light. His father, he says, is leaving the family — “he says he hates me.” Soon others chime in, sharing worries about sick grandparents and aggrieved friends. Some of it is very moving. But after a while a certain adolescent silliness creeps in. Andrew, a rail-thin eighth-grader dressed in white pants and a white T-shirt with a blue skateboarding jacket, announces he is holding in the light a gym teacher who twisted his knee. A girl holds her hamster in the light because “he’s even getting too old to crack his own peanuts.”
Andrew has been struggling to get into the light his whole life. At 6 months he fell off the growth curve; in his toddler years, rough textures and loud sounds vexed him. When he was in second grade, a psychiatrist declared Andrew to have the worst case of “attention deficit disorder” he’d seen in 27 years. Andrew ricocheted and fidgeted through grade school, unable to tolerate more than a few minutes in class. He couldn’t bear to write. He left his seat constantly. He got into scuffles all the time.
Home life wasn’t much better. The Fraser home, a Rockville rambler with a sunken den, frequently shook with Andrew’s tantrums. One morning, when Andrew was in fourth grade, he went after his older sister with a knife. Another, he was so enraged at life that he ripped the folding doors off his closet and threw them into the back yard, where he stomped them into slivers. Most mornings Andrew was a reptile coiled in his room, so unready to face the cruel exposures of the school day that his father had to dress him.
Yet Andrew could be a nice kid — open, friendly, communicative. For that grace his teachers and therapists never entirely gave up on him. “Through it all, Andrew was liked,” says his mother, Wendy.
His parents took him to a psychiatrist who diagnosed attention deficit hyperactivity disorder (ADHD) with “co-morbidities” — depression and possible conduct disorder. There were drugs to treat each malady.
By the summer before middle school, when he was all of 11 years old, Andrew was on an enormous dose — 70 milligrams — of Ritalin for his ADHD, plus two antidepressants, Prozac and Pamelar, and the anti-hypertensive Clonidine, to counter the side effects of Ritalin. To make sure his heart could stand the stimulation of so much Ritalin, Andrew had his blood pressure checked weekly. Yet he seemed as distracted, irritable and unhappy as ever. Sometimes the drugs seemed to be making things worse. His father, Bruce, a stockbroker, and Wendy, a nursing administrator, were at wit’s end.
“He’d cry. He’d threaten to jump out of the car. It was hard to see how he’d make it in middle school,” Wendy recalls.
That summer, she got a call from counselors at a day camp that Andrew was attending. Her son had threatened to run into the street, they said, and was marauding around the place with a branch, intimidating counselors and other kids. Come get him. So they did. But this time, when they took Andrew to his psychiatrist, it was clear they had arrived at a threshold. The psychiatrist suggested putting him on a fifth drug, the antipsychotic Risperdal, whose side effects, the doctor explained, included tics, tremors and the risk of permanent brain damage.
Andrew’s parents were floored. “He didn’t try to hard-sell us,” Bruce recalls, but it dawned on them that ever-stronger behavioral drugs were all the psychiatrist had to offer. And Risperdal was “the last club in his bag.”
Children who are hyperactive and distracted, who can’t focus on what’s in front of them or control their behavior, have always been with us. They entered the medical lexicon in 1902, when a British physician, George Frederic Still, described a group of children with “morbid defects of moral control.” Still thought he could detect a child’s moral propensities by taking measurements of his skull. Since then, the medical definition of this disorder has certainly undergone many revisions. But in some ways it has come full circle.
For years, the textbooks called it minimal brain dysfunction, then hyperkinetic syndrome of childhood. In 1972, Virginia Doug-las, a Canadian researcher, characterized it as attention deficit disorder, and her terminology became the accepted way of referring to children like Andrew Fraser. It was part of a turning point in child psychiatry toward defining mental illnesses more on the basis of observable behaviors and less on a patient’s life history. This approach located the problem in the child’s brain — separated it, in a way, from the child’s character. That opened the way for large-scale use of medication to change the behaviors.
In 1980 the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders broke ADD into two main categories — attention deficit with or without hyperactivity. By the 1994 edition, the disorder was called ADHD — attention deficit hyperactivity disorder — and the diagnosis was both more nuanced and broader. By some estimates, 10 percent of school-age boys in the country (and a much smaller percentage of girls) could fit into that definition.
The scientists who study ADHD believe these children are predisposed to it by particular patterns of brain chemistry, with most cases having some sort of genetic basis, others possibly the result of environmental factors during pregnancy or after birth.
Because there are no blood-borne proteins that define when a kid has ADHD, no lumps on the head or in it, no physical marks of any kind that clearly distinguish a child with ADHD from anyone else, the diagnosis remains controversial in society at large, even as the number of children — and, increasingly, very young children — who are treated for it is skyrocketing.
Once upon a time, kids like Andrew were termed “fidgety Phils,” or “behavior cases,” and were stuck in the corner or the principal’s office until they shaped up or left school. Some went on to become corporate executives. Others became jailbirds. Many struggled with the responsibilities of adult life, but others basically got it out of their systems after puberty.
Today an estimated 3 million children in this country have been diagnosed with ADHD — including perhaps 200,000 between age 2 and 4. With numbers like these it is not surprising that the diagnosis is controversial or that it has become enmeshed in many of the cultural battles of the past two decades, America’s fretful internal argument over the proper way to parent and educate the young.
While scientists struggle to provide a unifying theory of what’s different about the brains of children with ADHD, critics charge that it’s wrong to view these kids’ behavior as pathological in the first place; the fault lies with overcrowded schools, stressed-out parents with little time for the children and a society that wants to dull its rough edges and is intolerant of anything but success. Other, less radical critics of the system still believe that ADHD is severely over-diagnosed in America.
At the heart of the controversy over hyperactive disorder is that most children diagnosed with it get the same treatment: a stimulant.
Stimulants have been used to treat hyperactivity and learning disabilities since 1937 when an Oregon scientist named Charles Bradley noticed that Benzedrine perked up the attention levels of several children in the special school where he worked.
It wasn’t until the 1960s that doctors began regularly treating hyperactive children with methylphenidate — trade name Ritalin. Researchers had long reported that Ritalin at low doses had a paradoxical effect — it was “speed” that slowed children down. Eventually it was recognized that stimulants had the same effect on almost everyone: They improved short-term concentration. It was just that people with ADHD needed more help focusing than the rest of us.
There was a brief backlash against Ritalin in the 1970s, when some studies suggested it might stunt a child’s growth, but later research indicated those worries were overblown, and by the early 1990s, when society had generally embraced the idea that many problems could — and should — be dealt with by a pill, Ritalin had taken off again.
Even the biggest proponents of drug therapy agree that drugs work best in combination with behavioral modification and talk therapy. But talk is not cheap in the era of managed health care. And the thing about Ritalin and other stimulants is, they get results. Study after study has shown that low-dose stimulants will improve short-term concentration and reduce impulsivity and fidgetiness in about three-quarters of the kids who get them, as long as they’re on them. These kids will often do better in school. They won’t anger and alienate friends and teachers as much. That makes their parents saner. As a result of these things, the children often feel better about themselves.
How does Ritalin work? As with much about ADHD, no one is exactly sure, but it is evident that Ritalin increases the availability of dopamine, a chemical that’s key to movement and attention and other nervous functions, to certain cells in the brain. By adding to the dopamine pool, the drug seems to speed the flow of impulses through the circuits that help people control the instinct to respond to each and every stimulus. In a way, you could say that Ritalin strengthens willpower.
Or, as Ellen Kingsley, the mother of a 13-year-old who has been on ADHD drugs since age 5, puts it: “It enables him to do the things he wants and needs to do and would not be able to do.” Kingsley, a former Channel 9 consumer reporter who now lives in Houston and puts out a magazine about ADD, says her son T.K. would never have made it through school without drug therapy. Like many parents of children with ADHD, Kingsley is impatient with people who don’t recognize that kids like hers are deeply impaired and need help. “I could give him all the therapy in the world, but it won’t sink in without medication because he can’t attend to the task,” Kingsley says.
Parents with a morbidly hyperactive or inattentive child, most specialists agree, should be no more reluctant to try Ritalin than to give eyeglasses to a nearsighted child, if Ritalin will calm their child and improve his or her life. But among the millions of parents who have put their children on a permanent ration of behavior-modification drugs, many have undoubtedly had to overcome an initial queasiness and feeling of guilt. Laura and Barney Gault certainly did last fall, when a pediatrician suggested that their son, Sam, might need to be medicated.
“My first thought was denial,” recalls Barney, Sam’s father. “He’s a kid — you aren’t going to do this to my son. And then I was a little sad. I was thinking, ‘Are we going to alter his personality?’ “
It is a dreary winter evening in the cafeteria at Olde Creek Elementary School in Fairfax, and Sam’s den leader, Jeff Bush, is attempting to get Sam and eight other rambunctious 9-and-10-year-old Webelos to drill for their civics merit badge. The den leader’s presentation isn’t really pulling in the audience. The boys, a few in their blue uniforms with yellow kerchiefs, most in ordinary kid clothes, are popping up and down in their seats like ducks in a shooting gallery. They all seem to be talking at the same time, except for the kids who are falling off their chairs. Bush’s questions invite an array of non sequiturs.
“Who is the vice president?” he asks.
“Sore Loserman!” one scout responds.
“Can a 14-year-old be president?” someone else jumps in.
“My sister could be president. Cool!!”
“Your eyebrows look like the weatherman on Channel 9.”
At the far end of the table, quietly fabricating spitballs and loading them into a straw, sits Sam Gault. You wouldn’t necessarily know that he’s the one with ADHD. He doesn’t seem hyper. And he’s very focused — not on Jeff Bush, unfortunately, but he’s very focused on his spitballs. He fires across the room at his mother, Laura, and narrowly misses.
Laura, with short blond hair and dangling earrings, is keeping a close eye on her son. Sam is the shortest in the group, thin and gap-toothed, with blue eyes and diaphanous skin. On the previous Saturday, the den took a field trip to a firehouse. During the tour Sam got bored and started making silly remarks: “Is this an atomic bomb?” he asked about a high-pressure hose. “Is this a nuclear weapon?” Finally the fire chief turned and scolded him. Laura finds such incidents painful and hopes that, eventually, Sam will be embarrassed, too, and change his behavior. “When kids are continually singled out, it just whittles away at their self-esteem,” she says.
It was partly concern about self-esteem that led the Gaults to take Sam in for a psychiatric evaluation more than a year ago, when he was 8 and in third grade. Sam was bright and thoughtful and didn’t do poorly in school, but he couldn’t sit still. Time and again, his second-grade teacher reported that Sam had trouble following through with her instructions. He raised a ruckus in the halls and played the class clown. He literally climbed the walls at times. Sam was an inquisitive, detail-oriented child, but his mind had a way of meandering from the critical to the banal. You could hear it in his speech as he drifted from one topic to the next — teachers, Game Boys, his ADHD — without clearly completing his thoughts on any of them.
Laura Gault had had forebodings before Sam was diagnosed with ADHD. She felt that Sam’s ADHD might have had a hereditary connection — Sam’s paternal grandfather, who’s now in a nursing home, probably had ADHD, though in his era, of course, such a thing was not recognized. Even as an adult, he was impatient and impulsive like Sam, and sometimes he blurted out off-color remarks in mixed company.
And that’s partly what bothered Laura about her son — the social improprieties. “I noticed that the other kids would be acting out, but they could stop when an adult said stop,” she says. “Sam really couldn’t stop. He’d just continue to wiggle.”
Kids who wiggle too much stand out in a big classroom, where sheer management is a real challenge. Sam’s class had 28 other children.
After Sam was diagnosed with moderate ADHD, the Gaults were urged by their pediatrician to start out with a behavioral modification routine. They got his teacher to provide daily reports on Sam, and rewarded good behavior with trinkets — a Pokemon card here, a trip to the ice cream parlor there, a sleepover for being especially on-task. But within a couple months it was clear this regimen was not enough to motivate Sam. That’s when the Gaults turned to Adderall, which last year surpassed Ritalin to become the most prescribed stimulant in America.
“He didn’t have the maturity or ability to control his behavior on his own,” says Laura. So Sam began taking the drug just after Thanksgiving 1999, and his parents waited to see how it would affect him. Tonight, as his den leader winds up the civics session and the games begin, the effects of Adderall have long since worn off, and Sam is lost in his own world. The boys have cleared tables away and divide into teams for sock ball, which is dodge ball using balled-up socks. Everyone runs around, yelling and throwing sock bombs at the kids on the opposing team. Sam wads up a pair of socks to make what he calls a “megabomb.”
“Throw it, Sam!” shout two of his friends.
Sam does not respond. He is carefully folding the edges of the sock to make a rounder, more compact megabomb. One quality of Sam’s mental architecture, it’s plain to see, is a certain perfectionism. For better or worse, Adderall hasn’t done anything to change that.
“Come on, throw it, Sam!”
Finally he throws and — whack! — the sock bomb smacks a boy named Chris as he attempts to flee.
Teammates cheer. Sam betrays no emotion but lets out a belch of conquest. “He’s very proud of that,” Laura says, rolling her eyes.
Notwithstanding that ADHD can be a serious disease, the diagnosis of ADHD in America is an inexact science shaped in large part by the socioeconomic milieu of the kid in the middle of it. All it takes is a look at the diagnostic guide to see that.
The guide divides ADHD into three types: inattentive, hyperactive/impulsive or combined. A hyperactive diagnosis requires that the child exhibit six symptoms from a list that includes fidgeting, frequently leaving classroom seat, interrupting often, excessive climbing and running about, excessive talking, inability to quietly engage in leisure activity, acting “as though driven by a motor.” An inattentive diagnosis is for children with symptoms that include failure to listen, failure to follow through, tendency to lose things, etc. It’s clear that subjective judgment enters into any diagnosis — almost anyone with a child could imagine him or her meeting the diagnostic criteria, on a bad day at least.
To be sure, the diagnostic guide also requires that to be ADHD, the symptoms must exert a significant impact on the child’s life at home and school. But “significant impact” requires a context and that’s where the controversy about ADHD begins.
Every November, just after parent-teacher conference days in many schools, Barbara Ingersoll, a leading ADHD diagnostician in Bethesda, begins to get calls from parents. Ingersoll, a psychologist, performs assessments of children that parents can use to procure medications, therapy or classroom accommodations — all tools employed to get ADHD children through school with a modicum of success.
“After the parent-teacher conferences, when the honeymoon’s over,” the parents start seeking assessments, she says. “Wouldn’t it be great if we had schools that let them be themselves?” she asks a bit facetiously. “But it ain’t going to happen. You can’t let them run amok.”
Often, it’s not the parents but the schools that drive the diagnosis. The principal of an elite Washington private school several years ago gave the parents of a 5-year-old kindergartner a gentle bit of advice that was almost an ultimatum. The child, who had a photographic memory of almost anything ever read to him and who could spend hours working on art and science projects, was unable to sit still in the classroom. The school referred him to another D.C. psychologist — not Ingersoll — for an assessment that lasted three hours, cost about $2,500 and resulted in what the parents viewed as a preordained conclusion: Their son had ADHD. “He may need to be on Ritalin,” the principal said, “to stay in the school.”
The family decided to get a second opinion. A child psychiatrist at Washington’s Children’s National Medical Center rolled his eyes when he heard about the diagnosis. ADHD was a “garbage can label,” he told them, the diagnosis for any kid who was out of the box. Their boy was too young to be diagnosed definitively, he said, and the diagnosis wasn’t a trivial matter.
Ritalin could mask an underlying condition, or it could cause serious side effects. The kindergartner had tics, and children with tics sometimes developed full-blown Tourette’s syndrome after going on Ritalin.
Deep in their guts it felt wrong to the parents and they worried it would stifle their son’s nascent creativity. When he was reassessed at a clinic two years later, the ADHD label turned out to be wrong. The boy was dyslexic. He wouldn’t sit still in school, it turned out, because he couldn’t make sense of the words put in front of him. In the meantime, the family had switched their child to a public school in Maryland.
What almost happened to this family captures society’s fear of Ritalin, that the drug is being used to convert spirited children into docile sheep. But for most children on medication, the real problem isn’t that the “meds” turn them into robots; it’s that they rarely work as one would hope. At least half of the children diagnosed with ADHD also suffer from complex mixtures of other problems — learning disabilities, anxiety, depression — that can mandate a complex mixture of other drugs.
Theoretically, you can find a drug to treat each symptom. But the relationship between a behavior and the underlying biological facts isn’t cut and dried, particularly in children.
Sometimes, Ingersoll acknowledges, she sees children with mood disorders who’ve been misdiagnosed as ADHD and put on high doses of stimulant that leave them subdued and distant. “You get better behavior, but it’s using medicine as a chemical straitjacket,” she says. “You get zombies.”
Others wonder if some of the “co-morbidities” described by the psychiatrists are caused by the medicines themselves. “Here’s the conundrum — I put you on stimulants because you’re running around the classroom too much and you’re too impulsive and in people’s faces,” says Julie Magno Zito, a professor at the University of Maryland School of Pharmacy who tracks the growing tendency to prescribe mind drugs for preschoolers. “About three months later, it looks like the treatment works, and then you go home at night and need medication to go to sleep. Enter Clonidine to help you sleep. Now we’ve gone from one drug to two. I have to worry about interactions, a wider spectrum of side effects. Then after a couple months it becomes apparent that you cry more easily, you’re more sensitive. Now somebody says, ‘He needs an antidepressant.’ Now you’re on three drugs. We could call it co-morbid depression. But to me it’s equally possible that it’s behavioral medicine toxicity. You probably wouldn’t have the insomnia and crying if the other drugs were not on board. You can’t just keep treating symptom by symptom.”
Last February, Zito and a colleague, Daniel Safer, a child psychiatrist at Johns Hopkins University, made headlines when they published an article in the Journal of the American Medical Association that tracked a threefold increase in the use of stimulants, antidepressants and other psychotropic drugs among 2- to 4-year-old Medicaid patients from 1991 to 1995. The article set off a new round of critical news stories about overuse of psychotropic drugs. And like previous Ritalin scares, the uproar put many physicians and parents who believe the drug can save lives on the defensive.
“When you ask me why I put a child on four drugs, I say look at asthmatics,” says Larry Silver, a former NIH official who now has a large child psychiatry practice in Rockville. “With asthma you have multiple maintenance and emergency drugs, and there’s a reason for each of the psychotropic medicines, too.”
“The people who tend to criticize the use of these medications,” he adds, “are usually in the media, or people who’ve never had to live with or treat the patients.”
For a long time, Andrew Fraser and his parents hewed to this logic and followed the pharmaceutical trail wherever their psychiatrist advised them it led. They spent thousands of dollars and hundreds of hours in therapy and classes and doctor’s appointments for Andrew. But when the psychiatrist suggested Risperdal, with its terrible potential side effects, it was a step too far.
“We’ve got to try something else,” Bruce Fraser told his wife.
And so they stepped out of the mainstream and into the Bethesda office of Peter Breggin, who provided an unexpected answer to the problem of their son.
“Andrew,” Breggin said, looking at the thin, freckled-faced boy with twinkly blue eyes sitting in front of him, “they say you’re mentally ill, my friend. But actually you’re a brat.”
Peter Breggin, whose office is within mortar distance of the National Institute of Mental Health, is the bete noire of psychiatrists. He has written several books attacking the misdiagnosing and overmedicating of America’s children. Some view him as his profession’s prickly conscience, but his point of view, that there is no such thing as ADHD, is a fringe one among psychiatrists. Many of them believe that his crusading ways have done more harm than good by driving parents away from treatments that could help sick kids. Yet at least a few parents with difficult children view him as a savior who gives voice to their doubts and worries.
Breggin, who looks vaguely like comedian Steve Martin and speaks with a New York accent, believes that ADHD is essentially a “bunch of behaviors that make it difficult to teach kids in a big classroom. That’s all it is! You wouldn’t have a parent coming in and saying, ‘Joey squirms in his seat.’ What parent would claim that was an illness? It’s the teacher saying, ‘You’re out of control, take some Ritalin.’ “
Most of the worst symptoms of ADHD, he believes, are caused by the drugs that are used to treat it. “Once psychiatry went in the direction of drugs, it basically lost its knowledge and skills,” he says. “If you look at the leading psychiatric journals today, there’s nothing about family therapy, child development, how to handle an out-of-control kid. It’s all about drugs. They act as if children don’t need parents, they need drugs! Quite literally! We’ve abandoned our kids.”
Breggin is the medical consultant in three separate class action lawsuits that were filed last September on behalf of children medicated with Ritalin. The lawsuits, filed in New Jersey, Texas and California by some of the same lawyers involved in anti-tobacco litigation, accuse Novartis Pharmaceutical Corp., the maker of Ritalin, the American Psychiatric Association, and CHADD, an advocacy group for people with ADHD, of conspiring to poison America’s children.
Those being sued have called the lawsuits unfounded and have defended Rita-lin as a good drug and its use as good medicine. “It’s ludicrous to think that by seeking science-based advice for our problems we are conspiring to medicate the nation’s children,” said Clarke Ross, the head of CHADD (Children and Adults with Attention-Deficit/Hyperactivity Disorder).
“Breggin’s effect has been to make families wary of medical treatment,” says Laurence Greenhill, a Columbia University child psychiatrist who is leading a clinical trial of Ritalin for preschoolers, which he hopes will provide a means of testing Breggin’s theory that Ritalin itself causes brain changes that scientists attribute to ADHD. “He feels that the kids don’t get enough tender loving care, they aren’t hugged enough. But he doesn’t believe in evidence-based medicine and that’s the standard now.”
The Frasers had had enough of evidence-based medicine when they first stepped into Breggin’s office on October 26, 1998, and they instantly took to him and his message. Breggin told them that “in the overload of daily issues we’d failed to pay attention to teaching basic human dignity,” Bruce recalls. “Breggin saw a lack of attention had been paid to the basic nurturing of a child. I didn’t take umbrage. It sounded reasonable.”
In the first few months of 1999, Breggin took Andrew off the medications, one by one. In family and individual therapy, at $175 a crack, he told the Frasers that Andrew had to learn to act civilized. He could learn to check his impulses, to pay attention, to show respect. Willpower was his to grasp. Wendy and Bruce had to love him tough and tender. The Frasers were happy to toss out the biological psychiatry, with its talk of titration and syndromes and EEG patterns. Ceremoniously, in the presence of his parents, Andrew flushed the leftover pills down the toilet: Out with impersonal chemicals! Human beings rule!
But Andrew did not immediately improve. He struggled through a year at a public middle school in Rockville, then a year in a Montgomery County special ed program. Finally, this fall, Andrew began something new — Thornton Friends. The small Quaker school in Silver Spring was created expressly for kids with promise who had trouble sitting still or paying attention, kids who got teased or harassed in traditional schools, kids who were a little different — but reachable. Thornton Friends stressed individual growth and community feeling. “We want to help people understand themselves and find a style that works for them,” says the headmaster, Michael DeHart.
Roughly one-third of the kids in Thornton’s middle school are on psychotropic medications of some kind, DeHart says. He agrees with Breggin, who has written positively about Thornton, that the surge in prescription drug use in children reflects our society’s anxiety to produce kids who fit expectations, and its inability to create schools that handle their needs. But he also believes — unlike Breggin — that drugs sometimes are necessary. “It’s clear to us that some kids, in order to make it work here, need to be on medication. That’s where we kind of part ways with Peter.”
When Andrew arrived at Thornton, the administrators were up to the challenge of educating a drug-free Andrew. But it wasn’t a lovefest. In his first three months Andrew showed little patience and a lot of anger. In the middle of English once, he’d gotten up and yelled that he hated poetry.
“I’m not going to say Andrew needs toicated, and I’m not going to say he doesn’t,” says Jonathan Meisel, the principal of the middle school. “There have been times when it’s been very difficult for him. He’s very easily distracted. Does that mean it’s not worth continuing to try being off them? I’m not sure. Ultimately, is this the right place for him to be as a student, medication aside? We don’t know.”
Sitting on the couch in Meisel’s office, fiddling with the soles of his tennis shoes, Andrew says he is embarrassed to tell old friends he goes to this school. “I hate it here,” he says matter-of-factly. “A lot of kids here have a lot of problems. They feel like they don’t fit in. They are like really big dorks.”
At the same time, Andrew, now 13, knows he never wants to take medication again. He hated himself on drugs: “Nothing seemed fun; everything seemed boring.” His goal is to get back to public school, which he knows will be impossible unless he shapes up. “I don’t want to, but I think I’ll end up here,” he says. “I’m going to try to make do with what I’ve got.”
Do Andrew and Sam do what they do because of flaws in the wiring of brain circuits that inhibit inappropriate action, or is the apparent difference in their brains more in the nature of an evolutionary mismatch with modern life, an alternate state of readiness that represents a holdover from prehistoric times when extremely alert, impulsive people presumably had advantages in the struggle to survive? These are two of the untestable hypotheses of pop psychology concerning ADHD.
This much is clear: Our brains evolved with a great deal of variation. If children’s height was as variable as the size of their brains, some would be giants stooping to get in the classroom door each morning while others would barely be tall enough to reach their computer keyboards.
That fact poses one of the formidable challenges for researchers such as Xavier Castellanos, a doctor who has been studying ADHD for a decade in the child psychiatry branch of the National Institute of Mental Health in Bethesda. “Some kids’ brains are twice the volume of those of other kids, with both completely normal and healthy,” he says. “There’s a wide range in brain volume that we don’t understand.”
For the past several years, Castellanos has been studying the brains of ADHD children as they appear in magnetic resonance imagery (MRI). He’s doing the measurements to see if size can tell us something about the seat of abnormality. The current theory is that ADHD may derive from abnormal neural circuits linking the frontal lobes, the deep brain structures called the basal ganglia, and the cerebellum.
But Castellanos, 47, with a gray beard and wire-rim glasses, is the first to admit how few facts have been established. “The problem with neuroscience at this point is that everything in the brain seems to be related to everything else,” he says. “It’s like you’re attempting to make out which notes of a symphony come from the different instruments, but you are listening from the hall through the wall with a stethoscope.”
Castellanos and others have found that the brains of children with carefully diagnosed ADHD are approximately 4 percent smaller, on average, than those of healthy children. Some parts of the brains of ADHD children can be particularly small — the posterior-inferior vermis, a tiny segment of the cerebellum, for instance, is 10 to 15 percent smaller, on average. Castellanos doesn’t want to make too much of that — or too little. For the record, he doesn’t know what that teaspoon-size region of the brain does.
But he was extremely excited when a study published last May found that in macaque monkeys the posterior-inferior vermis was packed with dopamine receptors. That’s interesting to Castellanos because an inadequate supply of dopamine is believed to hamper attention and self-control. So the smallness of the posterior-inferior vermis in ADHD kids might mean a shortage of the right neural circuitry.
The smaller the brain size in these children, the worse the ADHD symptoms tend to be. But there’s an awful lot of variation, Castellanos says. Two-thirds of the brains of ADHD children are indistinguishable, in size, from those of healthy kids. If you’re a skeptic, you say size has nothing to do with it.
Similar caveats cover the genetic work on ADHD so far. “My favorite nightmare is there are going to turn out to be 300 or 500 genes, each of which contributes a couple percent of risk here and there,” Castellanos says. The leading candidate gene for ADHD is a variant of the gene known as DRD4. This variant apparently causes a receptor on certain brain cells to have trouble sucking dopamine out of brain synapses. That presumably slows the feedback messages in the brain that inhibit impulses. But you can’t call it a defective gene because it turns out fully 30 percent of the U.S. population has it, and not all of those people have been diagnosed with ADHD. And not everyone with ADHD has that particular DRD4 gene variant.
Moreover, the population of ADHD patients with that gene form might even have a relatively mild set of symptoms. In a study published last year in the Proceedings of the National Academy of Sciences, researchers at the University of California at Irvine found to their surprise that among ADHD patients, the ones with the “ADHD” form of the DRD4 gene were actually less impaired than study participants who had a normal DRD4 gene.
At least two drug companies are said to be working on DRD4-related drugs that could be used to improve the brain circuitry of ADHD patients. But Jim Swanson, one of the UC-Irvine professors involved with the study, has an intriguing hypothesis that the ADHD patients with the suspect DRD4 variant might be the subgroup that benefits most from behavioral modification strategies — rather than medication.
Because it was treatment, rather than diagnosis, that was the most contentious element of the ADHD debate, the National Institute of Mental Health set out to settle the issue of how best to treat ADHD by funding a six-site, 14-month study comparing Ritalin with behavioral modification and combined therapy. The researchers who designed the study included Ritalin advocates like Columbia’s Laurence Greenhill and behavioral modification proponents such as Swanson.
Published in December 1999, the study found that, overall, combined therapy worked best, but drugs alone were significantly more effective than behavioral modification therapy alone.
Swanson was surprised. “We thought intensive behavior modification would meet or beat the medication effects, and it didn’t,” he says. “We have to face the facts.”
But there was another way of looking at the study. More than one-third of the 145 kids in the study who were treated with behavioral techniques alone improved their ADHD symptoms. Which means, in Swanson’s words, “If there are 3 million kids medicated in the United States, maybe 1 million of them could have a good response to non-drug therapy.”
And that would be a good thing. Because the drugs have side effects, and they don’t work perfectly, and there will always be parents who, for a variety of reasons, refuse to give their kids mind-altering chemicals.
“I don’t think the reluctance to medicate children is ever going to go away,” says Norman Fost, a pediatrician who heads the medical ethics program at the University of Wisconsin medical school. “After all, as Woody Allen said, the brain is the second most important organ. You can get a new body part and feel much better, but if your brain gets screwed up it’s you who gets screwed up. Your brain is who you are.”
Before she started him out on Adderall 16 months ago, Laura Gault wrote a letter to Sam that explained his disorder and compared the drug to the glasses a nearsighted kid would have to wear. She wanted him to have something to look at in case he started to worry about being called ADHD.
Sam tried to avoid telling friends at school that he had the condition; one reason his parents chose to give him Adderall was that it was long-acting. A single dose, it was hoped, would get him through the entire school day. Kids on Ritalin, which the body metabolizes faster, often have to see the school nurse at lunchtime to get a booster dose — and Sam felt that would be embarrassing.
In the first month on the drug, Sam lost four pounds, and he was a skinny boy to begin with. “I was very concerned about that,” Laura recalls. “You can tell a child to eat, but you can’t make them eat.”
“But,” she says with a shrug, “it did help with his behavior.” Sam no longer seemed compelled to pester his neighbors in class. He could walk from room to room without climbing the walls or rattling a pen along the lockers.
But the tiny blue 5-milligram pill he takes at breakfast wears off by 2 p.m., and from that point Sam’s teachers and parents use their wits and wisdom to keep Sam on track. One evening a week, Sam attends a group therapy session with other children with ADHD who need help learning how to act appropriately in social settings. He says he doesn’t like it, but he clearly tunes in — you can tell by his recall of some details.
“If you see two people having a conversation there are six things you do,” he recites. “First, you stand near them. Then you move closer, and smile. Then you see if they smile back. If they do, then you smile again. Then if you know something about what they’re talking about, you join in the conversation, but maybe just a small comment at first.”
Laura doesn’t give Sam the medication on weekends or evenings, mainly because she worries about his weight. Too, she doesn’t want him to be on medication forever. “Our goal is eventually to get him off,” she says. “From what I’ve read, a lot of boys, once they go through puberty can . . . not outgrow it exactly, but the hyperactivity can be less.
“In the meantime I want him to learn how to cope.”
For now coping begins with the pills, which clearly have an effect. Sam forgot to take his medication the first day back at school after winter break this year — and the teacher noticed right away. He couldn’t sit still and his attention wandered. Which got Laura thinking again about the dosage. “I’ve been kind of waiting to see if there’s a need to increase it,” she says.
Before Thornton Friends’ two-week winter break, Jonathan Meisel had written up a contract for Andrew. It was a one-page list of do’s and don’ts, and it essentially stipulated that if Andrew’s behavior didn’t improve, he was out of the school.
One thing the contract required was more frequent therapy, and so Andrew began seeing Breggin weekly, instead of every few months. But the new system also made a concession: Instead of writing by hand, which was torture for Andrew as it is for many ADHD kids, he was allowed to bring a laptop to school so he could type his notes.
All in all, it was a challenge.
The family drove to South Carolina to visit Bruce’s parents for part of the school vacation. The trip went smoothly. One evening, back in town but before he returned to school, Andrew joined his father and a family friend in a sort of woodshed behind the friend’s house. While the adults drank cognac and smoked cigars, they talked with Andrew about his future. “You could just tell how excited he was to be treated as an adult,” Bruce says, “and at the end my friend said, ‘This is a good kid. He doesn’t need to be in special education.’ “
Recently, Andrew has begun to feel he has a goal in life. He downloads music from the Internet and burns CDs for his friends, earning a little money that way. He’s been thinking he’d like to take a mail-order computer course. “That’s what I’d like to do when I’m older,” he says, “become a computer programmer.”
In written evaluations submitted at the end of the third week of the new trimester, all of Andrew’s teachers had noted a remarkable turnaround. “Andrew has developed some qualities in the science classroom since holiday break that I have not usually seen,” one teacher wrote, “ — improved attentiveness to discussion and explanation, more thoughtful questioning and answering, and decreased distractions with other students.”
Randy Mackiewicz, Andrew’s foreign language teacher, went further. “We’re proud of Andrew’s progress,” he wrote.
His parents are keeping their fingers crossed.
“It took a lot of people — his teachers and friends and therapists and family and him — to get this far,” Wendy says. “We feel like he’s turned a corner.”
This story was originally published on March 18, 2001. Read an update here.