"We lived with it," says Tim, of his daughter's behavior--the tantrums, the hitting, covering herself in Vaseline head to toe, day after day. He and his wife Charlene took parenting classes through their church and tried to be fair and firm. "We thought maybe she was just strong willed," Charlene said. By the time they put four-year-old Erin in preschool near their home in a town south of Los Angeles, "she couldn't keep her hands to herself," Charlene says. "She would hit other kids. And she would hug anyone at any time. She would hold hands when other kids didn't want to. She would do pesky, bothersome things to kids, like touching their hair or their sweaters. It was as if, since she couldn't make friends, she was saying, 'I'm going to get you to relate to me.'" In class she was not able to stay focused, even though the teacher-to-student ratio was 1 to 3.
Is there a parent in America who has heard the talk or read the best sellers about attention-deficit/hyperactivity disorder (ADHD) and the drugs used to treat it without wondering about his or her child--the first time he climbs onto the school bus still wearing his pj's or loses his fifth pair of mittens or finds 400 ways to sit in a chair? The debate goes straight to the heart of our expectations and values. How dreamy is too dreamy? Where is the line between an energetic child and a hyperactive one, between a spirited, risk-taking kid and an alarmingly impulsive one, between flexibility and distractibility? What if a little pill makes everything a bit easier, not just for severely impaired kids but for those who teachers say are a little too spacey or jumpy or hard to settle down? Is there something wrong with the kids--or is there something wrong with us?
For years Ritalin has been a godsend for children who were so hot-wired they were simply unreachable, and unteachable. In severe cases, the benefits of Ritalin (and the family of related drugs) on these children's ability to function and learn and cope are so direct that advocates say withholding the pills is a form of neglect.
"I used to take her fingers from her face and tell her, 'This is Mom. This is Planet Earth. This is today, and you need to brush your teeth,'" recalls Natasha Kern, a Portland, Ore., literary agent who identified her daughter Athena's troubles early on. These are the kids who get expelled from nursery school for disrupting every story circle and demolishing every Lego tower. Parents despair at seeing their children sad or lost or cast out; they hate themselves when they lose their tempers after the sixth meltdown of the day. These kids can be very bright, very charming--and impossible to live with. "They think of things that are fun and creative at the rate of about 10 per second," says Kern. "While you are trying to put out the fire they set toasting marshmallows on the stove, they are in the bathtub trying to see if goldfish will survive in hot water."
But it is not the severe cases so much as the borderline ones--the children who occupy that gray area between clear dysfunction and normal unruliness--who raise the tough ethical issues, both public and private. The pace at which Ritalin use has been growing has alarmed critics for a while now. Some doctors find themselves battling anxious parents who, worried that their child will daydream his future away, demand the drug, and if refused, go off to find a more cooperative physician. Some parents feel pressured to medicate their child just so that his behavior will conform a bit more to other children's, even if they are quite content with their child's conduct--quirks, tantrums and all.
Many doctors won't discuss the matter publicly because the issues are so hot. Production of Ritalin has increased more than sevenfold in the past eight years, and 90% of it is consumed in the U.S. Such figures invite the charge that school districts, insurance companies and overstressed families are turning to medication as a quick fix for complicated problems that might be better addressed by smaller classes, psychotherapy or family counseling, or basic changes in the hectic environment that so many American children face every day. And the growing availability of the drug raises the fear of abuse: more teenagers try Ritalin by grinding it up and snorting it for $5 a pill than get it by prescription.
"Let's not deny Ritalin works," says J. Zink, Ph.D., a Manhattan Beach, Calif., family therapist who has written several books on raising children and who lectures extensively around the country. "But why does it work, and what are the consequences of overprescribing? The reality is we don't know."
For parents, even harder than the abstract social questions are the very personal ones they confront when they see or hear that their child is struggling. Will Ritalin help? Will it change her personality? Is it fair for me to make this choice for him? Does it send the signal that she is not responsible for her behavior? Is the teacher suggesting it just to make her own day easier? Will he have to take it forever? What if all children would be a little happier, perform a little better if they took their pills like vitamins every morning? Do we have a problem with that?
Given all the debate about how to diagnose ADHD and how to treat it (and the same for its related condition, attention-deficit disorder, or ADD), experts in the field believed it was time to convene a kind of science court to sort through the evidence and arguments on all sides. So last week in Bethesda, Md., several hundred doctors, experts and educators gathered for a long-awaited consensus conference held by the National Institutes of Health to examine the data on how well Ritalin works. Conclusion: very well--better than researchers imagined--but in ways and for reasons that are still not entirely clear (see box).
And yet the real consensus that emerged was how much we still need to learn. The experts warned that not enough is known about the risks and benefits of long-term Ritalin use; that there is too little communication between doctors, teachers and parents; and that a pill alone is no magic bullet. Some combination of behavioral therapy and medication seems to be most helpful for children with the severest problems, but there is no data to determine what combinations work best.
Her parents took Erin to a psychiatrist just before her fifth birthday. "He saw us for 45 minutes," Charlene says. "He read the teacher's report. He saw Erin for 15 minutes. He said, 'Your daughter is ADHD, and here's a prescription for Ritalin.' I sobbed." Charlene had a lot of friends who did not believe in ADHD and thought maybe she and Tim were just being hard on Erin. "I thought, 'Maybe there is something else we can do,'" Charlene says. "I knew that medicine can mask things. So I tore up the prescription." Tim thought that it was possible the doctor's diagnosis was too hasty and didn't want to believe it. "Part of us said, 'How can he look at a kid for 15 minutes and judge?'" Says Charlene: "I believed she had ADHD, but I knew we needed a two-pronged approach."
Among the most eloquent in his skepticism about the use of Ritalin for children who are not severely disabled is Dr. Lawrence Diller, author of Running on Ritalin (Bantam Books; $25.95). He wonders whether there is still a place for childhood in an anxious, downsized America. "What if Tom Sawyer or Huckleberry Finn were to walk into my office tomorrow?" he asks. "Tom's indifference to schooling and Huck's 'oppositional' behavior would surely have been cause for concern. Would I prescribe Ritalin for them too?"
In Diller's view, many Americans are so worried about their jobs, the marketplace and their children's chances for success that they place impossible pressures on kids to perform, at younger and younger ages. "In order for them to succeed, we make them take performance enhancers," Diller says. "A society that depends on medication to cope does so at its own risk."
There used to be different niches for people with differences in talent, skills and personality, he argues, but Americans are becoming more and more programmed to force their children into a mold. "There is an emotional cost, and eventually there will be a physical cost of taking square and rectangular people and fitting them into round holes," he says. "Performance enhancers--Ritalin, Viagra and Prozac--will remain popular until people question this goal."
Three days after Erin started kindergarten, her parents got their first call from the teacher. "She was a sweet lady. She tried to work with us," Charlene recalls. "But she said, 'I've been teaching 40 years, and I've never seen a child like this.'" Adds Tim: "You could see Erin was trying to sit still, but she was trying all these different ways--rocking, lifting one leg, sitting on her hands." Because California law requires that schools provide appropriate education for each child, the parents met with school officials. After evaluating Erin, they said she was not a "special needs" child and could be treated in the classroom. "The only ones who did not believe that were us and the teacher," says Tim. "ADHD does not mean you are missing a limb. She looked normal, but she was slightly off."
Given the explosion in ADHD diagnoses and Ritalin use over the past decade, the disorder is surprisingly ill defined. No one is sure that it's a neurochemical imbalance that can be corrected with medicine, much the way daily insulin shots help diabetics. There is no blood test, no PET scan, no physical exam that can determine who has it and who does not. For many children, Ritalin is the answer simply because it works. "It's a fixed, stable, low-dose drug," says Dr. Philip Berent, consulting psychiatrist at the Arlington Center for Attention Deficit Disorder in Arlington Heights, Ill. He argues that critics who claim diet, exercise or other treatments work just as well as Ritalin are kidding themselves. "The quickest way to end that criticism is to spend a week with a hyperactive child," Berent says. "We aren't talking about kids who ODed on Halloween candy. The protocol for diagnosing ADD [and ADHD] is very well defined."
But it's not hard to find doctors feeling a little queasy about the process. An evaluation needs to be so nuanced that the checklist of symptoms used by experts can seem like a terribly mechanical method for judging a condition so individual and personal. For borderline kids, a thorough professional assessment is essential.
Tim and Charlene kept resisting putting their daughter on Ritalin. "You don't want your kid to personify the rumors--that the medication makes them dopey or slow," Tim says. "That's the stereotype. All my co-workers and family had opinions that were antimedication." But a year ago, they finally tried it. "It was awesome," says Tim. "It worked great." At least for a while, until they discovered that Ritalin heightened Erin's obsessive-compulsive disorder. "She would turn the lights on and off seven times. She would flush the toilet four times and stop; then three times and stop; then four times and stop. There was a numerical sequence."
So long as it doesn't do any damage, what's the harm in giving even mildly distracted or willful kids a pharmaceutical boost? For one thing, doctors say, there is still some concern about side effects, such as decreased appetite, insomnia or the development of tics. "A very small percentage of children treated at high doses have hallucinogenic responses," the NIH experts concluded, arguing that more research is needed to shape guidelines for doctors and parents. For many families, of course, such risks seem a small price to pay for the enormous relief Ritalin can offer.
But the parents with the most firsthand experience see other, more subtle effects as well. Though Ritalin use can boost young children's self-esteem just by helping them "fit in," teenagers often struggle with their self-image, wondering if their whole personality is shaped by a pill. Some parents balk at giving their child a drug related to "speed," even if it isn't addictive.
Other parents talk about a "Ritalin rebound" and find themselves struggling with whether the drug's benefits outweigh its costs. Kathleen Glassberg, a computer-software sales representative in Long Island, N.Y., used to dread her 12-year-old daughter's return from school each day--and the two-hour crying jag that followed. "She'd hold herself together all day, but the minute she got home she'd have this breakdown," Glassberg says. Glassberg has carefully built an after-school routine of household tasks and time-management techniques to help her daughter focus. "You'd be asking the impossible to have my child come home, have a snack and do her homework right away. So instead, she comes home, lays her books down, and we go for a walk around the block. It gives her time to vent and re-attune herself."
Last spring Erin's parents took her off Ritalin and enrolled her at UC Irvine's Child Development Center, a model program that specializes in ADD and ADHD. She attended the school's summer program. "It was a horrid summer," Tim recalls. "Behavior modification was controlling a lot of things, but the impulsivity would snowball. She would be told not to touch something--whether a car's gearshift or a radio or a computer. You'd say 'Don't touch,' and she would look at you and you could see she heard, but you'd see her hand slowly moving toward it--and she knew if she touched it, she would have to take a time out or lose her TV privileges--but she would touch it anyway. And when the consequences happened, she would have an hourlong temper tantrum. It made for a no-fun life."
There is also some argument about the age that treatment should begin. Nearly half a million prescriptions were written for controlled substances like Ritalin in 1995 for children between ages 3 and 6. "Kids ages 4 to 5 are just as impaired as older children, so there is no reason not to treat them," says William Pelham Jr., director of clinical training in the department of psychology at the State University of New York at Buffalo. He adds, however, that before a physician treats such a young child with stimulants, he should begin by suggesting techniques parents can use to control his or her behavior.
But this is where treatment too often falls apart. Even doctors who have seen Ritalin's positive, sometimes miraculous effects warn that the drug is no substitute for better schools, creative teaching and parents' spending more time with their kids. Unless a child acquires coping skills, the benefits of medication are gone as soon as it wears off. "You can't just give medicine and fail to teach," says Stephen Hinshaw, director of the clinical psychology training program at the University of California, Berkeley. Drug treatment may set the stage, but studies suggest that children need constant reinforcement to help them control their impulses: through behavioral therapy, special education, family therapy or a combination of all three.
Even doctors who think ADHD may be underdiagnosed and are convinced of Ritalin's broad benefits emphasize the need to integrate drugs and behavior therapy. But it doesn't matter that children benefit from a multifaceted response if their health insurance won't pay for it. The trend over the past few years has been clear: the percentage of children with an ADHD diagnosis walking out of a doctor's office with a prescription jumped from 55% in 1989 to 75% in 1996. The number receiving psychotherapy fell from 40% in 1989 to 25% in 1996. "The reason Ritalin use has gone up is that we are in an era when psychiatric services are devalued and therapy is not paid for by insurance companies," says Jeff Goodwin, a former pediatrician who teaches at Walter Reed Junior High School in North Hollywood, Calif. "It is easier for physicians to prescribe a drug and categorize a disorder as hyperactivity than it is to deal with the problem. Health services are being cut back, so you have doctors saying, 'Take this and live happily ever after.'"
That is all the more reason for parents to gather as much information as they can, get a second opinion--and a third--before starting medication. In part it helps ensure that no one has unreasonable expectations about what drugs can and cannot do. And it increases the chances that treatment will be tailored to a child's individual needs. Vanderbilt University pediatrician Dr. Mark Worlaich hopes forums like the NIH conference last week will help correct some of the misinformation he sees every day. "The real issue that sometimes gets lost is that kids need to be successful in their activities."
In August Erin began taking Luvox for her obsessive-compulsive disorder, and in early October she started on Adderall, a combination of various stimulants. "For 4 1/2 weeks, we've seen heaven on earth," says Tim. "We have a semblance of family life." They spent a day recently at a church festival. "There were a lot of people there," Charlene says. "Normally that would produce a lot of anxiety for someone who has ADHD. But Erin had a great time." She can play games longer, take car trips, do homework. "I have a child I can relate to who is hearing me," Charlene says. "I'm not always in an adversarial situation." The fact that the medication seems to be working has liberated Charlene from irrational guilt. But she also sees that everything in Erin's life matters. The school. The behavior therapy. The rules and structure. The time and energy she and Tim devote to every waking hour. For them, the little pill is a wonderful tool, but they have had to learn to use it wisely.