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By James Leckman, MD
Receiving a diagnosis of Tourette Syndrome can be a difficult and uncertain time, and families can have many questions about TS, such as how to find the right treatment, and how to tell others about living with TS.
This article is intended for parents of children with TS and anyone who wants to know more about TS. Readers will learn about:
· TS and its characteristics.
· Why it is important and how to educate your child, family and friends, school staff, and others about TS.
· Available behavioral treatments and medicines, and how to find health care professionals who are knowledgeable about treating TS.
When Gilles de la Tourette first described this condition in the 1880s, he used the name “maladie des tics.” So what are tics? Tics are a bewildering collection of abrupt movements and sounds. They are sudden, rapid, motor movements or sounds that recur over and over again. Tics are often more easily recognized than precisely defined. Usually, tics can be easily mimicked and sometimes they can be confused with normal movements or sounds. However, they have a “stereotyped” quality which simply means that for any particular tic, it looks or sounds more or less the same each time it occurs. We think of tics as simply fragments of normal behavior that appear without any logical reason. Their sudden unexpected nature can excite surprise. If the observer (a parent, teacher, or a peer) does not know better, they may think that tics are being done “on purpose.” This can be very problematic.
Tics can be described based on their unique character, their location, and how frequently they happen. Another useful descriptor is the intensity or “forcefulness” of the tic, as some tics call attention to themselves simply by virtue of their exaggerated, forceful character. Finally, tics can also be described in terms of their “complexity.” Complexity refers to how simple or involved a movement or sound is, ranging from short, meaningless, abrupt fragments (simple tics) to ones that are longer, more involved, and seemingly more purposive in character (complex tics). Simple tics are sudden, brief (usually less than 1 second in duration), meaningless movements or sounds. Complex tics are also sudden, but more purposive appearing, movements of longer duration that can include “orchestrated” combinations of motor or vocal or motor and vocal tics. The observed range of tics is extraordinary, so that virtually any voluntary motor movement or vocalization can emerge as a tic.
For some of the reasons mentioned above, it is very important for a person with TS and those around them to “know” about what tics are and what the nature of the internal experience is for someone with tics. In our experience this will reduce the level of stress everyone is experiencing. It will help parents and teachers to be more understanding. It will also help the individual engage in treatment and ultimately to become more “accepting” of their tics. If the tics are noticeable in the school setting it is VERY important that the teachers be educated about TS. Likewise, teaching the other students can also make a big difference especially if this is done in the elementary school classrooms by knowledgeable individuals. In our experience teaching everyone involved about tics can make a real difference. Indeed, we consider it to be an important FIRST STEP in treating someone with TS.
The Tourette Association of America and its local chapters have done a great deal to get the word out about what TS is and what it is not. The Tourette Association’s website is a valuable resource for everyone. For individuals with TS, watching videos of peer advocates describing their tics can be especially important as it helps them realize that they are NOT ALONE. Many clinicians can be helpful, but unfortunately not all doctors and other professionals are as well informed as they should be. Or they may not take the time necessary to make sure that everyone knows as much as they should about TS. Often local Tourette Association chapters can help. For example, they may have individuals (professionals or other volunteers) who have experience doing “in-service” training for educators and classroom presentations to the child’s peers. In addition, we also frequently recommend that parents avoid spending time going on-line to watch videos of adults with TS. Many of these videos and some movies feature individuals with a very severe form of TS that can include saying or doing socially inappropriate behaviors like having a cursing tic or yelling out or doing something obscene. Fortunately, these tics are rare and affect no more than 5-10% of individuals with TS. But if a parent watches these videos, without knowing how rare these tics are, they may think that this will be part of what they will have to deal with in the future. This can be a real source of misunderstanding and STRESS that can affect everyone in the family.
More often than not an individual with both chronic motor and vocal tics, has more problems to face than just dealing with the tics. Indeed, quite often the social, emotional and academic outcomes we see are not synonymous with tic outcomes. Doctors use the term “comorbidity” to describe these co-occurring conditions. Some of the more common co-occurring conditions include Attention Deficit Hyperactivity Disorder (ADHD) or a particular form of Obsessive-Compulsive Disorder (OCD), but mood and anxiety disorders can also co-occur and a small proportion of children also have social and communication difficulties consistent with a diagnosis of Autism or Asperger’s syndrome. The ADHD seen in individuals with TS is largely indistinguishable from ADHD seen in children without a tic disorder, and the treatments used are largely the same. More often than not the OCD we see in individuals with TS is characterized by obsessions of symmetry and exactness and compulsions of needing to do and redo things until they are “just right”. They also are more likely to have worries about harm coming to themselves or to a close family member associated with a compulsive need to check to make sure everyone is “OK”. It also turns out that “tic- related” OCD is responsive to some cognitive-behavioral therapies, but it is often less responsive to the pharmacological agents used to treat other forms of OCD.
Yes and No. Educational interventions, as described above, can be VERY HELPFUL as a first step. Many professionals now consider C-BIT to be the first line treatment. Indeed, studies involving children and adults from across the United States have shown that at least 50% of children and 40% of adults are “much improved” or “very much improved” following C- BIT. However, skilled practitioners are required to implement C-BIT and there is a real shortage of well-trained providers. Efforts are under way to increase the number of
trained C-BIT providers in the United States. Pharmacological interventions can also behelpful, but we do not yet have an “ideal” anti-tic medication; one that works immediately and has no side-effects. Again trained practitioners are needed. Another ingredient for successful outcomes involves focusing on the WHOLE PERSON and their circumstances, particularly their family and friends, their academic or occupational pursits, and not just on their tics. This means we need to encourage individuals with TS as well as their families, friends and teachers to identify and build on their strengths and to keep their development on track. Indeed, we regularly encourage parents to spend at least as much time finding ways to build and enhance a child’s interests and skills as worrying about their tics. Many individuals with TS are bright and remarkably creative and sensitive to the needs of others. Indeed, many are DESTINED FOR SUCCESS in life despite their tics.
This can be a problem. While there are a number of centers of excellence in the US, more are needed. Ideally, given the life-long course of chronic tic disorders, the treatment team will be invested in providing a continuity of care. Having the necessary expertise with regard to educational interventions as well as C-BIT and various pharmacological treatments is also a key requirement. The Tourette Association, and especially the local chapters of the Association, can be a valuable resource as families can meet and speak with one another about the available therapeutic options in nearby locations.
Funding for this resource was made possible in part by the Centers For Disease Control and Prevention. The views expressed in written conference materials or publications and by speakers and moderators do not necessarily reflect the official policies of the Department of Health and Human Services, nor does the mention of trade names, commercial practices, or organizations imply endorsement by the U. S. Government.