Cover

Reclaiming the Good Life

Early diagnosis and counselling are helping kids with behavioural and neurological disorders

D’Arcy Jenish May 15 2000
Cover

Reclaiming the Good Life

Early diagnosis and counselling are helping kids with behavioural and neurological disorders

D’Arcy Jenish May 15 2000
Fred Atkinson is a soft-spoken educator whose voice swells with pride when he talks about the students who attend Landmark East School in Wolfville, N.S., about 100 km southwest of Halifax. This year, 45 children aged 10 to 18 are enrolled, their parents paying up to $29,000 in tuition, says Atkinson, the institutions headmaster. The students come from across Canada and from Singapore, Hong Kong, Bermuda, Britain, the United States and elsewhere, drawn by the school’s reputation for treating and educating children with learning disabilities and attention deficit hyperactivity disorder. Over the past two decades, 80 per cent of Landmark’s 600 or so students have completed high school—and almost three-quarters of those graduates have gone on to college or university. “The children who knock on our door have reached the disaster point in school and the community,” says Atkinson. “They firmly believe they’re failures.”

That is understandable. Life can present overwhelming challenges for a child with learning disabilities, ADHD or one of several other debilitating neurological conditions, such as autism, obsessive-compulsive disorder and schizophrenia. All too often, such children find themselves surrounded by exasperated parents, impatient teachers and teasing peers. They frequently perform poorly at school, make few friends and become disruptive due to anger and depression. Left untreated, these disorders can lead to tragic consequences. “Our jails are full of people with learning disabilities,” says Linda Siegel, a psychologist at the University of British Columbia in Vancouver. “And many adolescent suicides are the result of learning disabilities that have not been adequately diagnosed.”

Experts facing the daunting challenge of giving those children a normal life say they can effectively treat—but not cure—most neurological disorders with intensive counseling. They can achieve the best results with an early diagnosis—before age 3 in the case of autism or in the first years of elementary school for those with learning disabilities or ADHD—followed by treatment in a structured and intensive program.

Unfortunately, medical professionals say, the diagnosis comes too late, if at all, for too many children, who then reach adulthood without receiving adequate help. As a result, significant numbers of young people leave the educational system poorly equipped for the labor force. According to the best available estimates, up to 10 per cent of children suffer from learning disabilities—including dyslexia and other impediments to acquiring language or math skills—while three to five per cent have ADHD. Other developmental disorders like autism, obsessive-compulsive behavior and schizophrenia are much less common, each affecting less than one per cent of children.

Last fall, at age 22, Patrick McGoran, a street musician and aspiring poet, gave school one more try. Unemployed after working on and off at a call centre for three years, McGoran enrolled in an adult education program at a Toronto high school and began taking courses at four levels, from Grades 9 through 12. He lasted a month. It was, McGoran admits, the 10th time he had quit school. His troubles began in Grade 1 when he was placed in a class for emotionally disturbed children, but his real problem became clear only when he was 12. That’s when specialists diagnosed McGoran with a disability known as small motor skill deficiency, which made writing nearly impossible. “I just couldn’t put anything down on paper,” recalls McGoran. “But the teachers figured if I could read and speak well, I should be able to write. They told me I was lazy or didn’t care, then they put me in behavioral classes.”

Parents and teachers are often at a loss to cope with learning disabilities. Typically, says Nancy Heath, an assistant professor of educational psychology at McGill University in Montreal, those youngsters are of average intelligence or above, and can possess good social skills. But once they are placed in an academic setting, their deficiencies become apparent. For some, learning to read is a great challenge because they have difficulty with the sounds of letters. Some report that they perceive letters backwards, or cannot discern the spaces between words. Others have problems writing and spelling, or picking up such basic tools of arithmetic as adding and subtracting.

Researchers attribute those disabilities to disorders of the central nervous system, although science has not yet determined the precise nature of the problem. Affected children cannot entirely overcome their disabilities, but they can acquire basic language and math skills if they receive one-on-one help from a qualified instructor. “If you teach phonics systematically, a child’s reading and writing will benefit significantly,” says Heath. “But it’s like the person who’s missing a leg. Even if they function well with a prosthesis, it will never be the same as having both legs.”

Through treatment, children with linguistic disabilities can be taught to produce the standard written documents—such as resumes and business letters—required to obtain employment. They can succeed in the workplace by choosing careers in fields, such as sales, that require strong verbal, rather than written, skills. But when disabilities go unrecognized, children tend to lose self-esteem in elementary school because they cannot keep pace in the classroom, and can become seriously depressed as adolescents. “They are perceived by peers as being incompetent,” says Richard Cummings, executive director of the Toronto-based Integra Foundation, a children’s mental health center. “A lot of these kids are severely bullied.”

The Ritalin figures are startling. In 1994, according to the Ottawa-based Canadian Institute for Child Health, pharmacists dispensed just under 27 million pills of the stimulant commonly used to treat children with ADHD. Four years later, the number had more than doubled to 56 million, graphic evidence, say some psychotherapists, that too many children are being diagnosed with ADHD. “Parents go to the family doctor and complain that their child is too active, or they can’t control him,” says Robin Alter, a clinical psychologist in the Toronto suburb of Thornhill. “The doctor makes a cursory assessment based on a checklist of symptoms, decides he’s ADHD and puts him on Ritalin. This is horrible.”

The most recent list of symptoms, published in 1994 by the American Psychiatric Association, includes behavior that almost every parent has witnessed. A child with an attention deficit will, among other things, make careless mistakes in school, have trouble listening, lose things and avoid tasks requiring sustained concentration. The hyperactive or impulsive child—especially a boy—tends to fidget frequently, run in situations where walking would be more appropriate, talk excessively, interrupt others and have difficulty waiting his turn. The challenge, some therapists say, is to distinguish between the inattentiveness and restlessness that is typical for an age, and behavior persistent and disruptive enough to affect a child’s ability to function at home, in school or in social situations.

Parents are prepared to accept risks associated with Ritalin because of the dramatic improvement it brings

While the diagnosis may be subjective, American researchers have found clear neurological differences between average children and those with the disorder. Over the past decade, several studies based on brain scans of up to 1,000 children have shown that the pre-frontal lobe—the part responsible for inhibitory functions—is smaller and less active in those previously diagnosed with ADHD than in children selected at random. The differences are not large enough to allow doctors to make a diagnosis by looking at the image of a child’s brain. But the research does help explain why Ritalin works: it normalizes the part of the brain that controls the ability to pay attention.

While doctors say the drug is not addictive, they do concede there can be side-effects, such as irritability, sleep loss and nervous tics. Many parents are prepared to accept those risks because of the dramatic improvement in the conduct of their children. Calgary mother Ryta Wolf-Watkins, 42, who works full time as an accounting consultant, says that without Ritalin her nine-year-old son, Tyler, can’t sit still in class, won’t do homework, talks constantly and behaves so impulsively that family outings are difficult. “His quality of life is 150-per-cent better when he is on his medication,” she says. “People don’t even know he has a problem.”

But should parents be pursuing other approaches even as their child takes Ritalin? Some experts, including Landmark’s Atkinson, insist that medication should go hand in hand with intensive counseling to deal with a child’s underlying behavioral problems. Gabrielle Weiss, a psychiatrist at B.C. Children’s Hospital in Vancouver, says that while counseling doesn’t alleviate the core symptoms of a disorder that is likely neurological, it can deal effectively with the accompanying depression and poor self-esteem. Weiss, who has conducted studies involving ADHD children over the past two decades, says hyperactivity and impulsiveness usually begin to recede naturally by ages 11 to 14, as children become more conscious of the consequences of their behavior. Nevertheless, some symptoms—inattentiveness, lack of organizational skills and fidgeting—can resurface once a person stops taking Ritalin, or reaches adulthood. “Their lives,” says Weiss, “can be impaired by the disorder.”

Lisa Steinman always knows when it’s time for her deep-breathing exercises. She can feel tension rising within her to the point where she wants to explode in anger. And it can happen over things that others might find only mildly irritating—a child crying, or teenagers jostling on a city bus. Steinman, a 26-year-old Toronto woman, is autistic. Her years in high school were so difficult that even now she prefers not to discuss them. Through years of counseling, however, she has learned to deal with the volatile emotions that frequently accompany the disorder. That allowed her to complete a community college program teaching secretarial and administrative skills. She now holds down two part-time clerical jobs, one with the Geneva Center that offers support to people with autism. “I am easily startled and distracted,” she says. “But I have strategies to calm myself down.”

Autism appears in several different forms, from mild to severe, which are known collectively as pervasive development disorder. Its most common symptoms: delayed or limited speech, difficulty acquiring basic social skills, and unusual rituals such as flapping hands or rocking incessantly. Individuals with the mildest form, known as Asperger’s syndrome, can become very accomplished. In the worst forms of autism, children who never learn to speak and have unpredictable temper tantrums may require institutional care as adults. “It affects a child’s ability to play, to interact with people, to have friends,” says Hamilton child psychiatrist Peter Szatmari.

Autism is an extraordinarily complex disorder. Szatmari says most researchers attribute it to the interaction of defective or mutated genes with an environmental agent, perhaps a toxin or a virus, while the fetus is developing in the womb. Psychologist Susan Bryson of York University in Toronto is participating in a large American-led study to examine a theory that autism results from an interruption in neurological development within the first four weeks of pregnancy. “We really don’t know what causes this disorder,” says Bryson. “We’re hoping that eventually we can make some progress in terms of improved treatment and even prevention.”

For now, medical professionals recommend intense intervention, preferably while a child’s brain is still developing. Ideally, says Szatmari, children should be diagnosed by age 3 and begin receiving at least 20 hours of treatment weekly from a team that includes a speech pathologist, a psychologist, a psychiatrist and a special-education teacher. But in fact, he notes, most youngsters are diagnosed from ages 5 to 7. There are, however, encouraging signs. The Ontario government is preparing a program, with a budget of up to $ 19 million annually, to provide children 3 and under with as much as 40 hours of treatment per week. Similar, though smaller, projects are in the works in Prince Edward Island, Newfoundland and Manitoba.

Another group of neurologically based disorders—mental illnesses—can have a devastating impact on the lives of children and their parents. Schizophrenia is most commonly associated with adults, and usually appears after the age of 15. But in a few rare cases—less than one in 3,000 children, according to North Vancouver child psychiatrist Thomas Barnett—the disorder appears before age 12, almost invariably causing “a tremendous deterioration of the personality.”

A far more common disorder, which affects as many as one in 50—is trichotillomania, distinguished by compulsive picking and pulling at the sufferer’s own body. These youngsters may attack their arms until they have torn away the skin and damaged the underlying tissue, or they may tear out patches of their hair. Treatment usually involves a combination of drugs and habit reversal training to develop strategies for controlling the hands until the destructive urge passes.

An equally common condition is obsessive-compulsive disorder. Randi Shelson, 48, a children’s entertainer from the Toronto suburb of Ajax, says her son Corey, now 12, began to exhibit symptoms at age 5. He refused to drink from glasses he believed to be dirty, became increasingly obsessed with the notion that his food and drink could be contaminated, and at one point refused to eat for three days. “His behavior kept getting more disruptive,” says his mother. “Dinnertime was a nightmare.” Therapists say the disorder typically appears in boys aged 5 to 8 or in adolescence, but generally does not affect girls until they reach their teens. Powerful, intrusive thoughts cause extreme anxiety and lead to repetitive and ritualized behavior as a means of coping.

Corey Shelson started on medication at 7, but without success. Doctors usually prescribe one of several drugs that regulate the operation of neurotransmitters known as serotonin, which act as couriers carrying messages. Researchers believe those transmitters break down in some children due to a combination of genetic factors and stress. Corey reacted badly to three different prescriptions, throwing tantrums and even threatening to kill himself. Now he is improving under a psychologist’s behavior-modification program.

That therapy teaches patients to confront the source of their obsessions. In most cases, says Toronto psychotherapist Steven Singerman, it can reduce the intensity and frequency of the symptoms by as much as 80 per cent. Left untreated, however, sufferers often drop out of school, quit their jobs or break off social relationships. “It won’t disappear completely,” he cautions. “But we can help a person regain their life.” And that, as with other advances in treating children’s behavioral and neurological disorders, brings a measure of happiness to patients, along with immense relief to their families.


Uncontrollable tantrums

Janice Arsenault is feeling desperate. A year ago, a psychiatrist found a cause for her son Joey’s frequent rages that brought suspensions from school and created havoc at home. He would scream, kick, punch and threaten his mother with a knife and other weapons. Joey, now 11, has a condition known as oppositional defiant disorder that renders him incapable of bowing to the wishes of the adults in his life. Since that diagnosis, he has been taking an antidepressant drug that reduces the frequency of tantrums, but does not eliminate them. Late last month, Arsenault, a 37-year-old secretary and single mother of two boys in Toronto, had to call the police when Joey blackened one of her eyes in a dispute over where he would sleep. And where is the professional help? The best Arsenault has been able to arrange for Joey is a monitoring appointment with a psychiatrist every three months. “Finding counseling is almost impossible,” she says, “until our children seriously break the law.”

Arsenault says she can’t afford an available option—private counseling sessions with a psychologist. But doing without treatment could have dire consequences. Children with oppositional defiant disorder are typically argumentative and frequently lose their tempers. By adolescence or early adulthood, many are in trouble with the law over fights, property damage or other issues. For now, says Arsenault, Joey’s anger is usually directed at her. “He’s not a big child,” she adds, “but when he gets into one of these rages he’s got a lot of power behind him.” Without more treatment, she fears, his fate will be in the hands of the legal system. D’Arcy Jenish