COVER

Growing up hyperactive

School is hard—and life harder—for those with attention deficit disorder

ROBERT SHEPPARD September 7 1998
COVER

Growing up hyperactive

School is hard—and life harder—for those with attention deficit disorder

ROBERT SHEPPARD September 7 1998

Growing up hyperactive

COVER

School is hard—and life harder—for those with attention deficit disorder

ROBERT SHEPPARD

Choosing his words carefully, Ken McCluskey describes his daughter Amber, growing up, as “a colossal pain in the ass.” It is said lovingly but also with a clinical air. McCluskey is a psychologist specializing in students at risk at the University of Winnipeg and Amber, now 22, is his special study. He and his wife, Andrea, have written a book about their daughter, Butterfly Kisses: Amber’s Journey Through Hyperactivity. It is funny, heartwarming and painful at the same time. Amber is one of those people—six to eight per cent of the population, most researchers estimate—who have what is now called ADHD: Attention Deficit Hyperactivity Disorder. She is

highly impulsive, has difficulty concentrating on anything for more than a few minutes and is prone to emotional outbursts or fits of frustrated rage. She is, says her father, “emotion on legs.” Schoolwork was a constant struggle; some subjects just had to be abandoned outright. And friends were hard to come by. Adolescents do not have much time for those who do not fit in, who appear to be show-offs and who cannot pick up on the teenage norms. There were teachers who wanted Amber out of their classes because she was so disruptive. The swimming instructor, the gymnastics coach and the Brownie leader had similar feelings. At 12, when her parents refused to put her on medication (she had reacted badly to Ritalin at an earlier age), Amber went sobbing to her school principal and asked to be “sterilized”—by which she meant isolated from the rest of her classmates behind some makeshift barrier to help her focus. Today, Amber is the mother of Hunter, a 15-month-old daughter, and gives talks at high schools and universities about what it is like growing up hyperactive. “My stories are really emotional for some people,” she says. “I still haven’t dealt with a lot of the rejection and anger.” And while she has not outgrown her hyperactivity—most researchers believe it is a lifelong affliction— she has learned to control it better: “When I have to wait for something I count ceiling tiles or lights—I’ve always been good at counting. I can tell you how many people in a room are wearing runners and how many sandals.” Amber McCluskey’s pent-up frustration, difficulties in socializing and learning problems are typical of those with ADHD. Sci-

entists say that as many as 40 per cent of individuals with severe attention deficit problems also have other learning disabilities. But McCluskey is something of a rarity: her disorder is found predominantly in males, and she did not grow up using the stimulants Ritalin or Dexedrine to help her cope. According to Health Canada, Ritalin consumption in this country has grown 637 per cent in the past 10 years. Much of this growth, however, reflects youngsters who are being diagnosed early and staying on the drug longer, well through their teenage years. New estimates suggest that as many as two million North American children use daily doses of Ritalin to improve their concentration skills, down from much higher estimates a few years ago. Re searchers now feel that roughly two per cent—possibly as many as three per cent—of school-age Canadians use Ritalin or some kind of powerful stimulant to get them through their day. At the very most, that means 145,000 kids.

It sounds ironic that a stimulant helps those who are already hyperactive and bouncing off the walls.

“It is a funny story, how this works,” admits Dr. Russell Schachar, senior scientist at Toronto’s Hospital for Sick Children. “Sometimes, I am not even sure I believe it myself.” Researchers at the Hospital for Sick Children have just received a $620,000 grant from the Medical Research Council of Canada to try to chase the genetic root of ADHD. To date, the evidence reveals that the brains of those with ADHD lack a neurochemical in the frontal lobe where attention and decision-making is concentrated. “We believe these people are actually underaroused,” explains Schachar. “The speediness is the body’s way of making some kind of adjustment for that.”

Ritalin, the popular trade name for methylphenidate, provokes the brain’s neurotransmitters and is cleansed by the body within four hours. Developed in the 1930s, it was used in the war effort by both the Nazis and Allied forces to keep soldiers alert, and has been prescribed for ADHD children since the 1970s. Side-effects can include sleep problems, loss of appetite and, in rare cases, facial tics. Some parents take their children off the drug during the summer months to help restore the weight that was lost during the school year. But for the 80 per cent of ADHD sufferers who can handle daily Ritalin use, “it is the gold standard of treatments,” says Dr. Stanley Kutcher, head of psychiatry at Dalhousie University in Halifax, “as effective as antibiotics” for other illnesses.

But while the short-term blessings of Ritalin are proven, there have been few studies of its long-term effects. And Schachar notes that there is no solid evidence that stimulant medicine has any impact on scholastic achievement. Teachers and parents tend to approve of the drug because it makes unruly kids more manageable and more social—which is not a bad thing. But it is not the easy ticket to good grades or even success at school.

Nor is it a cure that works solely on its own. “The line that is fed to a lot of parents is, You’ve got a problem,’ ” says Darlene Butcher, a mother of four boys, three of them with ADHD. “No. We’ve got a problem.” In Butcher’s mind, the “we” includes the local school, the school board, plus the specialist who does the initial evaluation. An armed forces family that has just moved to North Bay, Ont., the Butchers have seen it all: sleep disorders, psychiatrists, fights at school, teachers who could not cope with their sons in a class of 30, principals who felt the problem would just sort itself out.

Butcher believes that parents must learn to agitate on behalf of their children. In the case of their youngest son, Matthew, 12, they have worked out a plan where he can call his psychiatrist whenever he feels overwhelmed. They have created an individualized education plan

with his teachers so he can proceed with many projects at his own pace. And they have devised a set of common strategies and phrases for parents and teachers to use to try to calm him down. “Containment field” means that Matthew is to imagine himself in a box slowly lifting up the sides and bringing down the lid. “Grounded” is a signal for Matthew to sit and ground himself if he is overly excited. “Resistance is futile” means there are some things, such as homework, he just has to plow through.

There are alternatives to Ritalin, including physio-

therapy to try to stimulate certain parts of the brain, less distracting classroom settings, and diet. Many people believe that the disorder is created or at least fed by certain food additives or sugar, and the Internet is chockablock with ADHD macro-diets. But while Schachar believes that an altered diet may help some children, it appears to have a limited effect; isolating ADHD students from classroom distractions does not seem to have much impact on their learning habits either, the research says. “These kids are exhausting,” says Schachar. “They are tough to parent and they must be very hard on teachers. I don’t think there is a drug or a tool or a straitjacket that is strong enough to control some of them.” The research, too, seems to show that parenting is the key component in dealing with hyperactive kids. A recent study by the U.S. National Institute of Mental

Health examined 100 ADHD kids, aged 7 to 9, in Montreal and New York City over a period of two years. The children, all on Ritalin, were divided into three categories: those receiving no therapy; some therapy; and intensive behavioral therapy involving parents and teachers. Says McGill University child psychiatrist Lily Hechtman, who helped co-ordinate the study: “The surprising thing was that there was no substantial

differences among the groups.” Everyone made the same academic and social gains. In the end, the researchers could only conclude that families who were motivated enough to enrol their children in psychiatric trials had what it took to keep even their most hyperactive members bouncing in the right direction. The McCluskeys, like the Butchers, advocate a brand of positive parenting: modest goals and flexible structure. “Often what is negative in childhood can be very positive in adulthood,” Ken McCluskey says, speaking of Amber. “It is a small step from stubbornness to determination. Or from being a pain in the ass to a consultant widely admired for her high energy level.” In the long run, what McCluskey calls “kind firmness” may be the key to surviving the journey of hyperactivity. □