MAKING THE TRANSLATION
New research debunks Tourette’s syndrome myths and lays the groundwork for a behavioral intervention.
By Sadie F. Dingfelder
Monitor Staff
Monitor on Psychology
Volume 37, No. 12 December 2006
Most researchers agree that the roots of Tourette’s syndrome are largely biological. The disorder’s characteristic tics—head jerks, eye blinks and grunts, to name a few—seem to stem from abnormalities in the basal ganglia or with dopamine function. What’s more, people with the disorder generally experience tics as involuntary, which would seem to make Tourette’s a poor candidate for behavior therapy, notes psychologist John Piacentini, PhD, director of the Child OCD, Anxiety and Tic Disorders program at the University of California, Los Angeles .
“For the last 50 years, Tourette’s has been considered a neurological disorder with very little role for behavioral interventions,” Piacentini says.
However, attitudes are changing, he says. Though previously people believed that the tics of Tourette’s could only be stopped by medication, new research indicates that environmental contingencies play a role in tic expression. For instance, people suppress tics if they are rewarded for doing so, according to several recent studies.
This finding is promising, but a barrier remains: Many medical professionals still falsely believe that holding in tics leads to an explosion of tics later, notes Michael Himle, a fifth-year graduate student and Tourette’s syndrome researcher at the University of Wisconsin–Milwaukee .
“There is a lot of belief out there that when a child suppresses their tics, what you get is a rebound effect,” Himle says. “Some professionals have used this to caution against the use of behavior therapy.”
Research by Himle and others is countering that belief, and, as a result, funding agencies are now taking a serious look at nonpharmacological treatments for Tourette’s. In fact Piacentini and his colleagues recently received about $6 million in grants from the National Institute of Mental Health to try out a new behavioral technique for treating Tourette’s. The treatment, known as the Comprehensive Behavioral Intervention for Tics, (CBIT) combines behavior therapy with an attempt to root out anything that might be inadvertently rewarding tic attacks.
“This is a really exciting time,” Piacentini notes. “We are…developing behavioral interventions for what at root cause is a neurological disorder.”
Debunking myths
Fifty-five percent of medical professionals believe that Tourette’s tics can’t be controlled and 77 percent believe that if tics are suppressed, they will be even worse later, according to a 2004 survey published in Cognitive and Behavioral Practice (Vol. 11, No. 1, pages 298–305). The survey of 78 neurologists, family practitioners, psychiatrists and clinical psychologists showed that many members of the medical community held beliefs about Tourette’s syndrome that were false or untested, says study author Douglas Woods, PhD, a University of Wisconsin–Milwaukee psychology professor.
“It’s almost Freudian, this idea that you can try to repress an unwanted urge, and the more you suppress it the more it will bubble up somewhere else,” Woods notes.
Woods and his student Himle set out to test those assumptions. In a study published in a 2005 issue of Behaviour Research and Therapy (Vol. 43, No. 1, pages 1443–1451), they rewarded seven children, ages 8 to 11, for suppressing their tics. They told the children a “tic detector” would reward them with a token for every 10 seconds they did not tic. They also said the tokens were worth a few cents each, but regardless of their performance, all the participants received $2 at the end of the study.
While the children believed the tic detector worked automatically, a behind-the-scenes experimenter actually controlled the dispensing of the tokens. The tics exhibited by the participants in the study—which included throat clearing, nose scrunching and grunting—were too complex and subtle to be detected by a machine, Woods notes.
Before introducing the tic detector, the researchers recorded the frequency of the children’s tics. Afterward, they also “turned off” the machine for five minutes and instructed the participants to tic freely, to measure any rebound effect.
They found that the children were able to suppress their tics—they expressed a tic during 16 percent of the 10-second intervals when they were being rewarded, as opposed to 50 percent of the intervals at the beginning of the experiment. Though the children returned to a high rate of tics once they thought the machine was off, they flinched and grunted less after the suppression period than they did at the beginning of the experiment.
That same year, another study—published in Behavior Modification (Vol. 29, No. 5, pages 716–745)—showed no rebound effect for tic suppression in five people with Tourette’s syndrome, ranging in age from 7 to 20. In that study, psychology professor Raymond Miltenberger, PhD, and his colleagues.at North Dakota State University asked the participants to consciously suppress their tics for 30 minutes while watching television or while holding a conversation with an experimenter. In both cases the participants were only modestly able to control themselves—though some were much better than others. And, during a 30-minute period afterward they did not tic more than they had at the beginning of the experiment.
“There is really no support for a rebound effect, based on that study,” says Miltenberger. “And what we found is that kids have variable ability to control their tics to begin with.”
In addition to debunking the rebound myth, the studies demonstrate that environmental factors can influence the expression of Tourette’s syndrome, says Woods.
The findings also show that people can control their tics—especially if rewards are involved, Woods adds. That is an important foundation for therapy; however, chasing after clients with a coin-dispensing “tic suppressor” would not be a good way to help them control their behavior, he notes.
Tools for tic suppression
Most people with Tourette’s are treated with drugs, says Roger Kurlan, MD, a psychiatry professor and Tourette’s syndrome researcher at the University of Rochester .
“Behavioral interventions for tics…have never been shown to have more than modest potential benefit,” he notes. For that reason, people with Tourette’s are generally prescribed medications like risperidone, an antipsychotic, or clonidine, a blood pressure medication. The drugs do reduce tics, but the side effects are often worse than the symptoms they treat, says Woods.
“The antipsychotics have a 70 to 80 percent tic reduction, but the side effects are abysmal,” he notes. “They experience weight gain and fatigue, have dry mouths—and a lot of parents just don’t want to put their kids on medication.”
The time is ripe for an alternative treatment, says Piacentini. So he is leading a consortium of scientists who are using the basic science foundation to develop a new behavioral treatment for the disorder. Currently, they are testing CBIT with 120 adults and 120 children in a randomized controlled trial funded by the National Institute of Mental Health, with administrative support from the Tourette Syndrome Association.
The intervention hinges on findings that show Tourette’s tics can be affected by environmental and internal reinforcement. While a tic attack in the lab might be discouraged by a token reward system, in school it might be discouraged by the likelihood of teasing. Or, alternately, a child who gets out of doing household chores due to a tic attack might tic more when it’s time to wash dishes, notes Joyce Chang Lee, PhD, a clinical psychologist who is applying the CBIT treatment as part of her postdoctoral fellowship at the University of California, Los Angeles.
“We try to change those things and stress that the child be treated as normally as possible,” Lee says. For instance, parents might let children take a break if they have a tic attack during chore time, but should send them back to finish afterward, she says.
In addition to removing external rewards, Lee and her colleagues teach children to break the internal reward system for doing tics. Many people with Tourette’s syndrome report a premonitory urge or sensation right before they flinch or flail, notes Lee. So, over the course of eight one-hour sessions, she teaches them to be aware of that feeling and then perform a quick countermeasure to quash the tic.
For instance, one child she worked with would feel tension build up in his arm right before he flung it outward. Lee taught him to hold his arms tightly by his side whenever he started to feel that tension build.
The training tends to weaken tics over time, Lee says.
“Usually what happens is, once they use the competing response, the premonitory urge fades away,” she notes.
The treatment addresses the symptoms of Tourette’s, not its root causes. But it can make a big difference in the lives of people with the disorder, Woods says. In fact, pilot data show that people who undergo the treatment have a 30 to 60 percent reduction in their tics—an improvement that is comparable to many medications, he says.
And giving children tools to control their tics can reduce embarrassment and social stigma, Lee says.
“My first time working with children with Tourette’s was a difficult experience because they have behaviors that are so distressing for them; it was really hard to watch,” says Lee. “But it has been so rewarding to see the changes that have been made and the improvements in their lives.”