FAQs
General FAQs
(Please click the question to reveal the answer)
1. What is Tourette Syndrome?
Tourette Syndrome: Tourette Syndrome (TS) is a neurological disorder characterized by tics-involuntary, rapid, sudden movements that occur repeatedly in the same way. To receive a diagnosis of TS, a person must have both multiple motor and one or more vocal tics, not necessarily simultaneously, throughout a span of more than one year. Tics periodically change in the number, frequency, type and location, and wax and wane in their severity. While most people with TS have some control over their symptoms for seconds to hours at a time, suppressing them may merely postpone more severe outbursts. Tics are experienced as irresistible and (as the urge to sneeze) eventually must be expressed. Tics increase as a result of tension or stress and decrease with relaxation or concentration on an absorbing task. TS frequently exists in a co-morbid state with ADD, ADHD, OCD, Learning Disabilities or Anxiety Disorder. Although Tourette Syndrome is not generally considered life threatening, it is frequently described as being life tormenting.
2. Is there a doctor or a psychiatrist who has experience and knowledge about Tourette Syndrome that you could refer me to?
We have a list of neurologists, pediatric (child) neurologists and psychiatrists that have been recommended by our members. Call our office or email us for a recommendation. Be sure to tell us where you live so that we can help to guide you to an M.D. who lives close to you. We can also refer you to a psychologist, social worker or a lawyer if you have a need for their expertise.
3. I would like to meet and talk with other adults about Tourette Syndrome. Do you have a support group that I could join?
There are several support group leaders that are located at various locations. Each leader is willing to talk to you and help to guide you to finding answers to your questions and concerns. Refer to Support Groups for more detailed information. You can also contact our office and ask. You can also attend and participate in State Board meetings and related activities, and volunteer to work with other TS volunteers at health fairs and fundraisers.
The following has been reprinted from the Winter 2008 (Vol. 36 No. 3) Quarterly Newsletter of the National Tourette Syndrome Association, Inc.
Expert Answers to 10 Questions about TS
1. Is there a medical test to determine whether someone has TS?
Tourette Syndrome cannot be diagnosed by a blood test or by scans of the brain. While there is strong evidence for hereditary causes of Tourette syndrome, there is no genetic test available. The condition is common enough and the features are so well known that an experienced physician can determine if a person has TS without needing a special test.
TS is a condition characterized by repetitive involuntary movements (called motor tics) or sounds (called vocal tics). A diagnosis of TS is made if a person has had motor and vocal tics beginning in childhood and lasting for at least one year. A physician makes the diagnosis after getting a detailed history and examining the patient to rule out less common conditions that might be causing the tics.
People with TS may be able to temporarily suppress a tic, but the movement or sound will eventually occur - either when their attention is shifted, or because of uncomfortable feelings or urges that are relieved only after performing the tic. This means that an individual with TS really cannot help making the movements or sounds involved with TS symptoms.
- David Shprecher, D.0. - University of Rochester, Department of Neurology
2. Can TS be diagnosed because of differences seen in the anatomy of the brains of people with TS?
The short answer is "no, not at this time." However, the TSA continues to support some very promising studies in both neuroimaging and in brain pathology. These may be the fields of study most likely to provide us with information that can lead to a way to confirm TS diagnoses. While there are some intriguing data coming from these investigations, we do not as yet have results that are definitive enough to serve as a reliable diagnostic tool.
In fact, currently there is no specific biological test of any kind that can diagnose TS with assurance - even when we look to genetics and DNA analysis for answers. Disorders such as TS, which have symptoms that are both neurological and behavioral, are highly complex. Scientists agree that to uncover the basic causes of these conditions, we need to be able to pinpoint several genes, all of which contribute to causing the conditions in question.
- Sue Levi-Pearl - Vice President, Medical and Scientific Programs, TSA
3. Does everyone who has tics have TS?
No, everyone who has tics does not have TS. There are many types of tics that people might have, and expressing them does not necessarily mean someone has TS. If we limit our discussion to school age children only, our best estimate is that TS affects about 6 children per 1,000 or about 0.6%. The current definition of TS requires that both motor and vocal tics be present and they persist for more than a year.
The purpose of the one year requirement is to establish that the tics of TS are persistent and not transient. Children who have motor tics that last for more than a year - but do not have vocal tics - are diagnosed with Chronic Motor Tic Disorder (CMTD). This group frequency may be as high as 6 per 1,000 children. Taken together, CMTD and TS add up to just over 1%. By contrast, transient tics are quite common in school age children.
Over the past several years, studies have concluded somewhat different estimates that range from 10 to 20% for transient tics. It is possible that some of these children with transient tics will go on to develop CMTD or TS, but most do not. The difference in the frequency of transient tics and CMTD as opposed to TS in children is large, very large. If even half of the children with transient tics went on to develop a chronic tic disorder CMTD and TS would be as high as 5%. In a given child with transient tics, it is difficult, perhaps impossible, to predict whether that child will go on to develop TS. However, the odds are that the transient tics will go away.
- Lawrence Scahill, MSN, Ph.D. - Associate Professor of Nursing & Child Psychiatry, Yale Child Study Center, and member of the TSA Medical Advisory Board
4. Can symptoms of TS be controlled?
The tics of TS are usually considered involuntary. However that does not mean that the patient has absolutely no control over their tics. Indeed, even untreated patients are sometimes able to suppress their tics for various periods of time. Recent research disproved the old belief in a "rebound effect." In other words, we have learned that when a previously suppressed tic is finally allowed to come out, it is not stronger or longer lasting than usual.
Behavioral therapy for TS teaches patients various strategies to gain control over their tics. Patients are taught how to increase their awareness of tics, learn how to cope with factors that make their tics worse, and how to engage in substitute behaviors instead of expressing unwanted tics. They also learn relaxation exercises and engage in relapse prevention training to ensure that they can maintain their gains after therapy has ended.
The goal of this treatment is not to cure TS, but to teach the patients powerful tic management skills. Very encouraging is the fact that behavior therapy has not been evaluated in at least four controlled studies and all had positive results.
- Sabome Wilhelm, Ph.D. - Associate Professor, Harvard Medical School and Director, OCD and Related Disorders Program, Massachusetts General Hospital
5. Why do some people with TS use foul language when they really don't want to use it?
First is important to realize that coprolalia - the inappropriate language that is sometimes associated with TS - does not always include cursing. Common to all forms of coprolalia is its social inappropriateness. For example, shouting, "I have a bomb!" while seated on an airplane while in flight is not foul language, but it certainly is an inappropriate outburst.
Coprolalic behavior is still mysterious and little studied, but there are some promising first steps. Studies of songbirds show links between the deep brain structure of the basal ganglia and the bird's sensitivity to social context and vocalization. We cannot rush from animal models to humans, but we can appreciate the potential for new possibilities.
The basal ganglia holds special interest for TS because this brain structure is implicated in many movement disorders. Recent brain imaging studies of humans also show involvement of the basal ganglia and the thalamus in language processing.
Most likely, the final answer is much more complicated than the current, partial answers. Much is already being researched with the promise of a fuller understanding of TS - both its motor behavior and its social behavior.
- Shlomit Ritz Finkelstein, Ph.D. - Currently researching Coprolalia at Emory University
6. Is brain surgery used to treat Tourette Syndrome?
The answers are, "Yes" and "No".
Yes- a handful of people with TS and their families have seen (on TV), experimental brain surgery has been done for very unusual cases of TS with extremely severe symptoms that cannot be reduced by medications. The surgery, called deep brain stimulation (DBS), involved placement of deep brain electrodes into areas of the brain believed to be important for movement control. A small number of adult TS cases have been described on television shows, with the misleading claim that DBS is a "cure." A somewhat larger, but still overall small number of cases, have been reported in the peer reviewed medical literature.
No- In the United States, DBS surgery is approved, by the FDA for three conditions: Essential Tremor, Parkinson's Disease, and Dystonia. It is currently being investigated for some other neurological and psychiatric conditions, however it is not approved for TS, and there are currently no large scale studies to determine whether DBS surgery is safe and effective for TS. In the vast majority of TS cases, consideration of trying brain surgery and implantation of electrical devices would not be appropriate.
- Donald L. Gilbert M.D., M.S. - Director, Tourette Syndrome Clinic Cincinnati Children's Hospital Medical Center and member of the TSA Medical Advisory Board
7. Do people with TS have symptoms other than tics?
While a diagnosis of TS requires the presence of motor and phonic (vocal) tics, most people with TS will also have non-tic symptoms that appear to be related to TS. Often, these symptoms are specific or severe enough to meet diagnostic criteria for other neurological or psychiatric conditions. Most commonly, these associated conditions include Attention Deficit Disorder with or without Hyperactivity, Obsessive Compulsive Disorder and Generalized Anxiety Disorder.
In addition, people with TS are more likely than those without TS to have problems with mood, sleep efficiency, learning and movement skills coordination. Furthermore, tics and non-tic symptoms can cause significant distress and impairment in social, academic or work functioning. The symptoms of these associated conditions and the distress or impairment they may cause should be carefully considered, evaluated, managed and monitored in all patients who are followed for concerns related to their diagnosis of TS.
- Samuel H. Zinner, M.D. - Associate Professor - Pediatrics, University of Washington and member of the TSA Medical Advisory Board
8. Does having TS limit job opportunities?
I have always taken the philosophical approach that my having TS is irrelevant and I think this is particularly true in the area of your career. People with TS are doctors, lawyers, actors, accountants - every profession. TS tics may limit an individual's choice but no more, and usually a lot less, than other qualities. Your talent, ambition, personality and discipline play a greater role in determining your potential success in any given field. Not your tics.
You may dream of taking center stage at the Metropolitan Opera House and sing along with Renee Fleming on your iPod, but unless you have the voice, musical ability and the drive and determination of diva, you"re unlikely to make it in opera. You might also have a mean jump shot, but if you stop growing at 5'9", your basketball career has limits. TS is a little like that one-octave range voice or your height, it's a part of you, but it doesn"t define you.
Young people with TS should explore all their interests and talents and never let having TS inhibit their dreams. When it comes to career opportunities TS is just one, and I think a very small, factor in the equation.
- Paul Devore, CFP, CLU - CEO of FMS Financial Partners, Inc. and President, Pacific Insurance Management Corporation Director on the national TSA Board of Directors, and past Chairman of TSA
9. Can people with TS go to college?
Absolutely, yes. TS does not impair a person's intelligence, or prevent one from going on to achieve a higher education (even at the doctorate level). Oliver Sacks followed a neurosurgeon in his book, An Anthropologist on Mars who operated successfully despite having fairly severe symptoms of TS. Peter Hollenbeck is a successful Ph.D. neuroscientist who has written about, and given speeches about how he coped with his TS symptoms.
Most people with TS find that their tics decrease significantly by the time they reach college age. For those whose symptoms do not, their tics can be better tolerated by educating their teachers and peers about TS, along with judicious use of medication under the guidance of a physician familiar with TS.
Attention Deficit Disorder (ADD) is very common in TS, and while some people may have compensated well because of their above average intelligence, ADD can first become a problem in the complex social environment of college. By understanding that "multi-tasking," organization, and time management can be impaired in ADD, one can focus on developing these skills and take advantage of such aids as electronic calendars to avoid missed assignments. People with TS should also beware of "obsessive traits," a tendency to immerse themselves in subjects that interest them at the expense of others.
- David Shprecher, D.O.,University of Rochester, Department of Neurology
10. Do children with TS need accommodations in school?
There is no simple answer to this question because there are many factors that determine the need for accommodations. It is crucial to have the proper evaluations done, look at the interference of tics, obsessions and associated disorders to determine appropriate accommodations and services.
The re-authorization of IDEA has been very helpful to students with TS, as TS is now officially listed under the category of Other Health Impaired. In addition, students no longer need to have failing grades or a discrepancy between verbal and performance IQ to qualify for an IEP.
A frequently made mistake is not looking at all aspects of TS. We often overlook the educational impact of even mild tics. A simple eye-blinking tic makes it impossible for a child to read or write and creates a need for accommodations such as a scribe. Students with ADHD can be very disorganized and have difficulty paying attention. A student with OCD may constantly write and erase words or count things over and over in their head, making it difficult to concentrate. Dysgraphia is a common handwriting disability, making it extremely difficult to write which results in illegible handwriting and/or the inability to copy things correctly or to organize thoughts on paper.
All of these difficulties cause frustration that can look like just bad behavior. If the school treats it as bad behavior, the child is denied the accommodations that could correct the situation.
