Receiving a Diagnosis of Tourette Syndrome

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.

What is Tourette Syndrome?

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.

What are some of the other important things to know about TS? Well there are lots of things to keep in mind. Let me mention a few:

• Tics come and go during the course of a day and they often have what the doctor’s call a “waxing and waning” course over weeks to months. This can be confusing to everyone. We often look for the cause of why things have gotten worse, but often it is hard to tell. A person’s “repertoire” of tics can change and new tics can appear quite suddenly.
• Tics are also “suppressible”, especially for older children and adults. This can be a good thing, but it can also be a source of confusion for parents and teachers. For example, if a teacher or a parent doesn’t know about TS and tics, they may ask the child to stop doing that or making that sound and the child does. But then a few minutes later the same tic is back and the parent or teacher may think the child is making the tic on purpose which then can cause the child to be punished or criticized in public. This can also set the stage for the child to be bullied or harassed by their classmates.
• Tics are what we call “suggestible”, so if someone started talking about tics a person with TS may suddenly start having one or more of the tics in their “repertoire”.
• Tics usually have their onset in the first ten years of life. Boys are more commonly affected than girls. Rarely do tics start before 3 to 4 years of age. Importantly, for a majority of individuals the period of worst-ever tic severity usually falls between the ages 7 and 15 years of age. After that the tics often become less troublesome over time so that by the early 20’s many people think that they have completely “outgrown” their tics. Only 10-15% of individuals with TS have a “severe” form of the illness as adults. However, having TS can be a real challenge especially if the tics are so forceful that they call attention to the person. Sometimes tics have to be done in a way that is “just-right” and often the individual feels a fleeting and momentary sense of “relief”.
• Tics are usually worse during periods of fatigue, stress, and excitement. For example, sometimes tics can be worse at the time of a birthday party or a holiday. They can also be more problematic when the person is all alone in their room in the evening before they fall asleep. The tics themselves can be a source of stress. They can call attention to the person. This leads being embarrassed and, as mentioned above, this also can lead to a child being unwittingly disciplined by parents or teachers and/or to being harassed or bullied by peers. In some cases this can become a vicious cycle.
• Importantly, tics disappear during periods when a person is doing something that requires focused attention and as goal-directed bodily motion like playing a musical instrument or playing Ping-Pong. This can be very helpful to know especially when the person with TS is going through a bad spell of tics as they can take a break.
• Tics are typically gone during sleep.
•  Many individuals with TS have a heightened sensitivity to faint sensations and usually by the age of 10 years most individuals are aware of a hard to describe “urge” that precedes a tic. Often these urges can be located on the body where the tic is about to occur. We have found that helping children, parents and teachers learn more about these urges can be very helpful. This is because it “gives a reason why” the child or the adult is doing the tic in the first place. It is especially important for the individual with TS, because an awareness of these “premonitory” urges is a basic part of one of the more successful treatments for tics – Comprehensive Behavioral Intervention for Tics (C-BIT).

How important is it for you, your family and others (teachers and peers) to know about TS?

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.

What is the best way for someone to learn about tics and Tourette syndrome?

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.

Is Tourette syndrome limited to someone just having chronic motor and vocal tics? Is that the whole story?

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.

Are there good treatments for Tourette syndrome?

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.

How can you find the best care?

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.