The Minnesota Tourette Syndrome Association has had many years of experience helping children with Tourette Syndrome (TS) to receive an appropriate education in spite of their disability. This is especially challenging when, in addition to the tics associated with TS, the child also has associated behavioral difficulties such as obsessive-compulsive behavior, impulsiveness, attention problems, aggression, socialization problems, or other socially unacceptable behavior.
Based on our experience we find that the special needs of children with TS are not appropriately met by placement in school programs for children with emotionally caused behavior problems, [in Minnesota, Emotional Behavior Disorder (EBD)]. Most such programs are not designed for children with neurological impairment such as TS. The philosophy, perspective, and interpretation of behavior used in those programs are inappropriate for children with TS and can be extremely detrimental. This article presents alternative behavior management strategies which are more effective with these children.
Tourette Syndrome is a neuro-behavioral disorder, and TS-related socially unacceptable behavior in children with TS is neurological in origin—the result of neurological dysfunction in the part of the brain, which controls sensory, emotional, and motor activities. Besides causing fine and gross motor problems, this neurological impairment (medically termed psycho-biological disinhibition) can negatively affect relationships, emotional development, and socialization.
This neurological explanation of behavior is quite different from the psychogenic interpretation in which socially unacceptable behavior is viewed as the result of psychological problems. For psychological problems it is a matter of developing a program to assist in overcoming the behaviors.
However, because TS is a neurological, not a psychological disorder, the educational focus cannot be on overcoming the disorder. Rather, the educational focus must be on developing lifelong coping skills, which, together with appropriate medication, can effectively improve the functioning and the lives of children with TS. These coping skills usually involve environmental modification rather than behavior modification of the individual.
On average, the most difficult years for the child with TS are between the ages of seven and sixteen, although experience indicates that 75% of children with TS show improvement during adolescence. The neurological system does some self-correcting or “catching up” during puberty so that around the ages of 15 or 16 we begin to see much more behavior control.
Education planning throughout the school years is critical. Programming for goals must be seen in terms of years, not months. We need to develop realistic expectation in helping children to develop coping skills and to build self-control. A pro-active approach is necessary for children with TS to succeed. Pro-active behavior management strategies are those that plan ahead for difficulties, provide structure and support, and modify the environment to set the child up for success. By contrast, reactive behavior management techniques are those that react to behavior after it has happened by giving a reward, or by using such techniques as cost response or “time-out,” which are seen by the child as punishment.
For the child with TS we need to set up the environment to prevent loss of control, to provide support and structure, and to work with the child to stay in control, rather than waiting for him to lose control and then punishing him. Behavior plans need to be flexible and creative, as symptom change, or wax and wane. Even with a proper behavior management plan in motion, some behavior problems may be unavoidable. These children need to be educated in spite of their behavioral symptoms. This presents a definite challenge to the educational system.
Methods That Do Not Work
Maturity and self-esteem are key factors in the improvement of behavior of children with TS, not behavior modification or other psychological intervention. Self-esteem is lost when a child is expected to perform in a program in which, as a result of his neurological disability, he is destined to fail.
Children with TS often have “temper tantrums.” This is not due to emotional problems, efforts to get attention, or inappropriate learned behavior. Rather, the child may lose control when he becomes overstimulated. This can be compared to a computer that overloads and shuts down. Another cause of a tantrum can be the interruption of a compulsion. The child may not be able to verbalize what is going on inside, but he may be experiencing extreme anxiety, and feels as though he “will explode” if he cannot complete the compulsion. When tantrums happen repeatedly, it may be showing us that our program is not addressing the child’s needs and program modification may be necessary.
Behavior modification techniques, which are commonly used with children in emotional behavior disorder placement, are highly controversial when used with children with TS. These techniques include reward and punishment, and children with TS usually cannot perform for reward or punishment, at least consistently. Parent report that this has been tried unsuccessfully many, many times.
A typical example of such a behavior modification technique is to give a reward for a “good bus ride.” This is often an unrealistic expectation. Bus rides, lunch rooms, the playground, and any loud, unstructured under-supervised setting are typical “set-ups” for the child with TS to lose control, resulting in a variety of inappropriate behavior—yelling, hitting other children, laughing uncontrollably, standing up, or breaking bus rules. Many children with TS cannot be expected to have a “good bus ride.”
Moreover, in addition to being ineffective, such reward-and-punishment behavior modification techniques can further exacerbate low self-esteem and feelings of powerlessness in the child with TS.
“Time out” is a frequent school response to loss of behavioral control. “Time-out” should not be used with a child with TS as a sanction or punishment, or to deny positiive reinforcement. Studies show that “time-out” drives up aggression in children. If a child with epilepsy had a seizure, we would not think of putting him in a room alone until it was over. In the same way, the child with TS often needs an adult to be with him when he is out of control. These children are aware of their lack of control, and usually are afraid. TS behavior is neurological caused and is not purposeful. Why do we punish a child with TS for losing control?
Another technique commonly used in “emotional behavior disorder” school placement programs is to require the earning of privileges such as recess and other physical or social activities. Physical activity is extremely important in building inhibitory control in children with TS. It is as necessary for their programming as food and water. Denying physical activity to the child with TS is a “set up” for behavior problems. It is like taking away the wheelchair of a physically impaired child until he walks a block. Similarly, social interaction is necessary for the development of the child with TS; he should not be restricted from assemblies, etc., as punishment for behavior problems.
The fact that the symptoms of Tourette syndrome wax and wane presents another problem that is not appropriately addressed by the use of traditional behavior management techniques. The waxing and waning of the tics of Tourette Syndrome is often accompanied by great variation in the ability of a child with TS to control behavior and, therefore, is often accompanied by waxing and waning of inappropriate behaviors, impulsiveness, lack of subjective insight, and an increase in obsessive-compulsive symptoms. With traditional programming, expectations of behavior would not typically be adjusted downward to accommodate the child’s lessened ability to exercise control over his own behavior. Instead, consequences or punishment would be given to the child in an attempt to bring his behavior back to previous levels. Imagine how helpless and powerless a child feels knowing that he was able to behave much differently a month ago, and now he is constantly failing.
Methods That Do Work
Teachers of the physically or other health impaired child (in Minnesota, designated as POHI teachers) are best trained to address the needs of the child with Tourette Syndrome. They are trained with a neurological perspective, teaching children to cope with their life-long disability. The Emotional Behavior Disorder (EBD) philosophy, in contrast, tries to change behavior in children who are unable to control it.
A calm, moderately structured classroom is best suited for the child with TS. The goal is to build inhibitory control. The program should provide positive role modeling, adult supervision, and much positive reinforcement and building of self-esteem. Children with TS typically feel more confident and secure, and can perform better, with adults than with their peers. Adults should be seen as regular partners in helping children to develop coping skills and to build self-control, by establishing realistic expectations and using pro-active techniques.
For the child who is out of control, a pro-active strategy would be to have a “safe place” set up for the child. It can be used to prevent escalating behavior when the child does lose control, he may be helped by calm reassurance of support and acceptance. Messages like, “I will help you through this,” or “you will gain control” may encourage him. The child should have the choice to use this “safe place” when he needs it, and cognitive therapy might focus on teaching cues for when the “safe place” would be used. By this he learns that he can begin to take care of himself, which builds personal power and responsibility for the disability. This place should be seen as a privilege, not as a punishment. It should be remember that the child’s ability to remove himself may vary with waxing and waning of symptoms.
In dealing with incidents of unacceptable behavior such as the example of the school bus ride, a pro-active technique would be to provide alternative transportation to school, or to allow the child to walk to school if feasible. Such a pro-active approach is important in starting off the day in a positive, inhibition-building, calming way.
A child with TS should never be restricted from assemblies, etc., because of behavior problems. If a social event is over-stimulating for the child, a pro-active approach should be used, such as an aide assisting the child, in order to help him maintain control during the activity. Or his time at the activity may need to be shortened.
As the symptoms of Tourette Syndrome wax and wane we need to be able to be flexible and adjust expectations of behavior. This should be explained to the child since he, too, needs to understand the waxing and waning of his symptoms are severe.
Often hyperactivity and obsessive-compulsive behavior need to be allowed and ignored, as are tics. Changes in the classroom should be minimized. Having substitute teachers, room arrangement changes, or change in classroom routine often precipitates a major setback in behavior control.
Role-playing may be helpful as a consequence for unacceptable behavior. Children with TS often need to have information on appropriate responses reinforced over and over, especially if they have difficulty processing incoming information. Giving honest feedback about behavior, without value judgment or anger, may help the child process what has happened. Using logical and natural consequences without shame and blame, and working it through cognitively with the child, builds awareness of responsibility in the child. Use problems as teaching opportunities, but do not expect instant results.
No medication or behavior management plan will cure Tourette Syndrome or eliminate all difficulties. However, if the pro-active behavior management techniques are used we are assured that the child is being set up for success. Self-esteem remains intact and the focus can be on teaching skills for coping with TS. Children often need help in accepting TS, and in learning to compensate for areas of difficulty. Obsessive-compulsive symptoms, attention problems, and behavior problems need to be addressed from the neurological perspective. With proper medication, positive school programming, and maturity we will see successful results.
This article was written by Tracy Hearle
