The Boy Who Started It All

In 1989, Dr. Judith Livant Rapoport ’55, now director of childhood research at the National Institute of Mental Health, published The Boy Who Couldn’t Stop Washing: The Experience and Treatment of Obsessive- Compulsive Disorder (Dutton). The book’s gripping case histories reveal how pervasively OCD can disrupt children’s lives—and their families’. Never out of print and issued in paperback in 1997, the groundbreaking book continues to sell 10,000 to 15,000 copies a year, Rapoport says.

Rapoport has treated nearly 1,000 children and adolescents with OCD in the past 20 years. She wrote her first paper on OCD as an undergraduate at Swarthmore, for Peter Madison’s Honors seminar in psychopathology. In those days, however, only psychological theories were covered.

“What I’m most proud of,” she continues, “is that the book demonstrated that OCD, which had been considered very, very rare, was more common than bipolar disorder or schizophrenia.” When Rapoport began her work in 1976, she says, few articles discussed OCD; now there are thousands. Moreover, today, “just about every psychology and psychiatry department across the United States and Canada offers treatment for OCD,” she says.

Helping Kids With OCD

About 2 percent of the U.S. population—some 4 million people—have OCD, Rapoport says. More than a quarter of them are children. Sadly, many who could be helped never find the appropriate resources.

For those who are fortunate enough to obtain an accurate diagnosis, much can be done, Chansky says. Yet like adults, kids with OCD typically consider their compulsive behavior shameful and hide it. Although OCD is far better understood than ever, it is often undiagnosed or misdiagnosed as another mental disorder, such as schizophrenia.

“We are in a crisis situation in this country,” Chansky says. “So few people know how to treat OCD. I advise on an e-mail list all over the country. Many people have to drive for three hours or go for intensive treatment during the summer because there is no help nearby.”

Treatment is crucial, Chansky says, and tailored to the child. For the girl who feared that she wanted to kill herself or rape someone, Chansky made an audiotape containing statements such as “I’m a rapist. I want to hurt people. I don’t care how people feel.” The opposite was true, Chansky says. “This is a girl who embodies all that is good in the world—bright, creative, caring.” The girl was instructed to listen to the tape for 15 minutes every night. Its constant repetition habituated the child to her fears until they grew less compelling. “After a while, the anxiety comes down,” Chansky says. “The parents were doubtful, but this method is the cutting edge. It works.”

Chansky describes a young boy who stopped answering questions because he was afraid that he might respond with a lie. His reluctance to speak “made therapy sessions very difficult,” she says. In therapy sessions, she taught him to “boss back Brain Bug,” as he has named his OCD, so that he can be “normal and free and not have this problem any more,” she says.

Finding the Right Help

Even when an experienced therapist is found, Chansky has observed, the parents’ role is seriously underappreciated. Eager to communicate with concerned parents she couldn’t reach in person, Chansky wrote Freeing Your Child From Obsessive-Compulsive Disorder: A Powerful, Practical Program for Parents of Children and Adolescents (Three Rivers Press, 2001). “My book is the first to be written for parents about their role,” says Chansky.

The response has been strong and far-flung—from Canada, France, and all over the United States. On a typical day last fall, Chansky received calls from parents in three distant states. “They felt the book had ‘saved their lives’ by explaining what was wrong with their child and what they could do to help,” she says.

“Parents want and need information,” continues Chansky, who feels that being the mother of two has deepened her understanding of parents’ frustration. “Too often, parents are left in the waiting room and not brought into the process, even though they have the most time and influence with their kids and can expedite the recovery process if they are included in the treatment.”

An early hope is that no treatment is needed. “The million-dollar question for a parent of a kid with OCD is: ‘Will it go away?’” Chansky says. The answer is: Probably not. “We don’t know why some kids outgrow it, and others don’t,” she says. For most children with OCD, symptoms will wax and wane throughout their lives. For those whose OCD persists, Chansky notes, “we don’t talk about cure because the condition is chronic. But especially with early intervention, we can get good results.” With treatment, symptoms can be reduced by 50 to 80 percent.

It was, in fact, the gratifying ability to help children with anxiety disorders that lured Chansky to the field. First, her Swarthmore adviser Jeanne Marecek, for whom she did research in her senior year, acted as a role model for “finding work that means something to you and enjoying it.” Later, as a doctoral student in clinical psychology at Temple, Chansky began working with anxious children. “I loved it right away because the kids were really getting better,” she says.

Who Gets OCD and Why?

The average age of onset of OCD is young adulthood—19.5 to 22 years—but it can start much earlier. Case studies exist for children as young as age 2, says Chansky. More boys than girls are affected, although women seem to catch up by adulthood.

As with most mental disorders, causes are elusive. As Chansky describes it in her book: “OCD comes from a biochemical mishap in the brain. Part of the brain sends out a false message of danger and rather than going through the proper ‘screening process’ to evaluate the thought, the brain gets stuck in danger gear and cannot move out of it. The emergency message circuit keeps repeating and is ‘immune’ to logical thought.”

The neurotransmitter serotonin carries information from one nerve cell in the brain to another. An insufficiency of serotonin causes message circuits to malfunction, so that the circulating message never stops. One receptor site for serotonin is in the basal ganglia, the part of the brain that contains the thought-filtering station. An injury to the basal ganglia results in OCD symptoms. Medications that treat OCD help keep serotonin available, expediting message delivery.

Research sponsored by the National Institute of Mental Health has found an intriguing link between OCD and strep throat. Antibodies to streptococcal infections, investigators learned, harm the same parts of the brain that are affected in OCD. They named this phenomenon pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS). Occurring between age 3 and puberty, PANDAS may account for one-third of cases of OCD in children—the same proportion, as it happens, that Chansky sees in her practice.

Identifying and Treating OCD

How can a parent tell whether a child’s habits are normal? The extreme and repetitious behavior of a child with OCD is usually fairly obvious (see “Distinguishing OCD From Habits of Childhood”). Spending more than an hour a day on rituals and feelings of deep distress also indicate that treatment is warranted. The child who must endlessly pack and repack her book bag every day before going to school or the one who sprays his books with Lysol when he gets home—both patients of Chansky—needs help.

“My job as a therapist,” Chansky says, “is to help children and parents see that all the symptoms distill down to the same issue: They are about doubt that seems unbearable instead of uncomfortable.” That’s true of adults, too, but “because kids’ experiences are different, they don’t latch onto the same things,” thus making it more difficult for parents to understand their motives. In situations that might lead an adult with a contamination obsession to worry about “germs,” a child might worry about a color (such as red, the color of blood), a texture, or people. Such fears may be incomprehensible to the parent yet make perfect sense to the child—who may be unable to articulate his feelings.

Treatments That Work

For many years, OCD was presumed to be a purely psychological problem. The condition’s physiologic basis became clear, however, when 70 percent of people with OCD in a 1986 Columbia University study improved dramatically while taking the antidepressant clomipramine (Anafranil). In the 1990s, positron emission tomography (PET scans) revealed that either medication or behavior therapy alters metabolic activity in the brains of people with OCD.

Five drugs, including fluoxetine (Prozac), are now used for OCD. “All the drugs approved in adults seem to work in children,” Rapoport says. If a medication hasn’t started to work within a few weeks, the dosage may be increased. If that doesn’t help, another medication may be tried.

With or without medication, OCD is usually best treated with behavior therapy. The goal of behavior therapy is to empower people with OCD to transform their own behavior, rendering the intolerable en-durable. With the help of a trained therapist—whether a psychiatrist, psychologist, or other mental health professional who is experienced in treating children with OCD—the child identifies his or her obsessions and compulsions, rates them by severity, and learns how to reduce their regularity and power.

Chansky has had success with behavior therapy techniques in children as young as age 4. She notes a growing consensus that such therapy can teach children to resist their OCD. Children learn to “boss back” these impulses, to name and defy them (“You can’t get me, Repeater Man”), to “break the rules” of the OCD. “Behavior therapy prepares children for slips or recurrences,” Chansky says. “The relapse rate with medications is higher.”

“The initial techniques of exposure and response prevention are still best,” Rapo-port says. Children are exposed to the sources of their obsessions or to situations that trigger them, then encouraged not to employ their usual compulsions to calm the resulting anxiety. The child observes that no harm results. Over time, the child develops a tolerance for the presence of what causes the fear.

Last spring, Chansky treated an 11-year-old boy, obsessed by symmetry and perfection, who typically spent an hour tying his shoes and arose at 4 a.m. to iron his clothes. His assignment: to come to his next ap-pointment wearing clothes that hadn’t been ironed. “This was torture for him,” Chansky says. “He put on his shoes with his eyes closed and did not retie them in the car. His anxiety went up at first, but it will go down by itself.”

The child himself must feel in charge of the symptom that is being worked on. “If I tell him what to do,” Chansky explains, “I become just like the voice of OCD, bossing him around.” Therapy should not replicate the feeling of being out of control, she says.

“The number one thing that needs to happen for kids is recognizing that their OCD thinking is different from their other thinking,” Chansky continues. “Even 4 year olds can identify OCD thought. It gives them a different feeling in their stomach or elsewhere in their body. They need to make that identification so that they won’t invest the same amount of energy in that as in a math problem.” Once the feeling has been identified, “They should get involved in something else so that the feeling will pass.” Kids are taught to “relabel the situation and wait it out,” she says.

Treatment lasts for four to six months, on average, but can be much shorter. “I’ve had kids who just needed a handful of sessions to get through it,” Chansky says. Beyond quelling OCD symptoms themselves, treatment “has implications spilling over into self-concept,” she observes. Children may attribute their OCD symptoms to being “crazy, perverted, or sick” and withdraw from society. “That’s a mistake you don’t want to leave uncorrected,” she warns.

For the youngest OCD patients, “a more purely behavioral tack is taken,” says Chansky, whose center treats many 3 year olds and their families. Parents are taught to address the child’s symptoms. In a child who often complained of feeling sticky or dirty, for example, parents might prevent routine hand wiping or washing. “The parents orchestrate the approach,” Chansky explains.

“Most important when OCD is noted in a young child,” she says, “is to consider the possibility of PANDAS and have the child evaluated.” A significant sign of PANDAS, Chansky notes, is the sudden onset of symptoms or tics in a child who has shown no OCD tendencies before. Because OCD develops more typically around ages 10 to 12, its appearance in very young children signals a greater likelihood of a physiologic trigger such as strep or Lyme disease.

Because children with OCD are in distress, their families, striving to adapt to the demands of the disorder, may arrange their lives around protecting the child. A trained therapist can help them to stop “enabling” and effect constructive changes.

“A lot of times, families are bewildered,” Rapoport says. With therapy under way, “siblings are reassured instead of resenting the child who is ruining the family fun. Almost always, information and openness are better than not. Siblings take the situation personally and negatively.” Yet when enlisted to help, they tend to seize the opportunity. If sisters or brothers are suffering because of a sibling’s OCD, Rapoport says, she may ask the parents to bring them to family therapy sessions.

Families may feel encouraged to know that overcoming OCD can increase a child’s empathy toward others. “Many of my ‘graduates’ who are now in college,” Chansky says, “are going into psychology.”

Chansky stresses the poignancy and seriousness of OCD and the struggle required to resist it. She taught the girl who imagined glass in her food to recognize the difference between a “good warning” and an “OCD warning”—“mistakes that the brain is making”—and how to respond to both. Chansky explained that food wasn’t really full of glass but full of the girl’s ideas about glass. Taking containers of formerly rejected foods to her therapy sessions, the girl slowly began to eat increasingly complex and hard foods.

The boy who feared chemicals was eventually able to put nail polish on his own nails in Chansky’s office. “He was an athlete with a shelf full of soccer and baseball trophies,” she says. As he used the polish, she reports, he gave her a rueful look and said, “‘You see how much I want to get better?’”

Marcia Ringel, a writer and editor in Ridgewood, N.J., is a regular contributor to the Bulletin. Her most recent article was the September cover story on high-stakes testing.