Q. What is Tourette Syndrome?
A. Tourette Syndrome (TS) is a neurological disorder
characterized by tics -- involuntary, rapid, sudden movements or vocalizations that occur repeatedly in the same way. The
- Both multiple motor and one or more vocal tics present
at some time during the illness although not necessarily simultaneously;
- The occurrence of tics many times a day (usually in
bouts) nearly every day or intermittently throughout a
span of more than one year; and
- Periodic changes in the number, frequency, type and
location of the tics, and waxing and waning of their severity. Symptoms can sometimes disappear for
weeks or months at a time.
- Onset before the age of 18.
The term, "involuntary," used to describe TS tics is
sometimes confusing since it is known that most people with
TS do have some control over their symptoms. What is not
recognized is that the control, which can be exercised
anywhere from seconds to hours at a time, may merely
postpone more severe outbursts of symptoms. Tics are
experienced as irresistible and (as with the urge to sneeze)
eventually must be expressed. People with TS often seek a
secluded spot to release their symptoms after delaying them
in school or at work. Typically, tics increase as a result of
tension or stress, and decrease with relaxation or
when focusing on an absorbing task.
2. Q. How would a typical case of TS be described?
A. The term typical cannot be applied to TS. The expression
of symptoms covers a spectrum from very mild to quite
severe. However, the majority of cases can be categorized
3. Q. Is obscene language (coprolalia) a typical symptom of TS?
A. Definitely not. The fact is that cursing, uttering obscenities,
and ethnic slurs are manifested by fewer than 15% of people with TS. Too often, however, the media seize upon this
symptom for its sensational effect.
4. Q. What causes the symptoms?
A. The cause has not been established, although current
research presents considerable evidence that the disorder
stems from the abnormal metabolism of at least one brain
chemical (neurotransmitter) called dopamine. Undoubtedly,
other neurotransmitters, e.g. serotonin, are involved as well.
5. Q. How is TS diagnosed?
A. A diagnosis is made by observing symptoms and by
evaluating the history of their onset. No blood analysis or
other type of neurological testing exists to diagnose TS.
However, some physicians may wish to order an EEG, MRI,
CAT scan, or certain blood tests to rule out other ailments that might be confused with TS. Rating scales are available for
assessment of tic severity.
6. Q. What are the first symptoms?
A. The most common first symptom is a facial tic such as
rapidly blinking eyes or twitches of the mouth. However,
involuntary sounds such as throat clearing and sniffing, or tics of the limbs may be initial signs. For a minority, the disorder
begins abruptly with multiple symptoms of movements and sounds.
7. Q. How are tics classified?
A. Two categories of tics and several other examples are:
Motor -- Eye blinking, head jerking, shoulder shrugging and
Vocal -- Throat clearing, yelping and other noises, sniffing and tongue clicking.
Motor -- Jumping, touching other people or things, smelling,
twirling about, and only rarely, self-injurious actions including
hitting or biting oneself.
Vocal -- Uttering words or phrases out of context and coprolalia (vocalizing socially unacceptable words).
The range of tics or tic-like symptoms that can be seen in TS is very broad. The complexity of some symptoms is often
perplexing to family members, friends, teachers and employers who may find it hard to believe that the actions or vocal
utterances are involuntary.
8. Q. How is TS treated?
A. The majority of people with TS are not significantly
disabled by their tics or behavioral symptoms, and therefore
do not require medication. However, there are medications
available to help control the symptoms when they interfere
with functioning. The drugs include haloperidol (Haldol),
clonidine (Catapres), pimozide (Orap), fluphenazine (Prolixin, Permitil), and clonazepam (Klonopin). Stimulants such as
Ritalin, Cylert, and Dexedrine that are prescribed for ADHD may increase tics. Their use is controversial. For obsessive
compulsive traits that interfere significantly with daily functioning, fluoxetine (Prozac), clomipramine (Anafranil),
sertraline (Zoloft), risperidone (Risperdal), and paroxetine (Paxil) are prescribed.
Dosages which achieve maximum control of symptoms vary for each patient and must be gauged carefully by a doctor. The
medicine is administered in small doses with gradual increases to the point where there is maximum alleviation of symptoms
with minimal side effects. Some of the undesirable reactions to medications are weight gain, muscular rigidity, fatigue, motor
restlessness and social withdrawal, most of which can be reduced with specific medications. Side effects such as
depression and cognitive impairment can be alleviated with dosage reduction or a change of medication.
Other types of therapy may also be helpful. Psychotherapy can assist a person with TS and help his/her family cope, and
some behavior therapies can teach the substitution of one tic for another that is more acceptable. The use of relaxation
techniques and/or biofeedback can serve to alleviate stress reactions that cause tics to increase.
9. Q. Is it important to treat Tourette Syndrome early?
A. Yes, especially in those instances when the symptoms are viewed by some people as bizarre, disruptive and frightening.
Sometimes TS symptoms provoke ridicule and rejection by peers, neighbors, teachers and even casual observers.
Parents may be overwhelmed by the strangeness of their child's behavior. The child may be threatened, excluded from
activities and prevented from enjoying normal interpersonal relationships. These difficulties may become greater during
adolescence -- an especially trying period for young people and even more so for a person coping with a neurological
problem. To avoid psychological harm, early diagnosis and treatment
are crucial. Moreover, in more serious cases, it is
possible to control many of the symptoms with medication.
10. Q. Do all people with TS have associated behaviors in addition to tics?
A. No, but many do have one or more additional problems
which may include:
Obsessions which consist of repetitive unwanted or
Compulsions and Ritualistic Behaviors which occur when a person feels that something must be done over and over
and/or in a certain way. Examples include touching an object with one hand after touching it with the other hand to "even
things up" or repeatedly checking to see that the flame on the stove is turned off. Children sometimes beg their parents to
repeat a sentence many times until it "sounds right."
Attention Deficit Disorder with or without Hyperactivity
(ADD or ADHD) occurs in many people with TS. Children may show signs of hyperactivity before TS symptoms appear.
Indications of ADHD may include: difficulty with concentration; failing to finish what is started; not listening; being easily
distracted; often acting before thinking; shifting constantly from one activity to another; needing a great deal of supervision;
and general fidgeting. Adults too may exhibit signs of ADHD such as overly impulsive behavior and concentration
difficulties and the need to move constantly. ADD without hyperactivity includes
all of the above
symptoms except for the high level of activity. As children with ADHD mature, the need to move is
more likely to be expressed by restless, fidgety behavior. Difficulties with concentration and poor impulse control
Learning Disabilities may include reading and writing
difficulties, problems with mathematics, and perceptual
Difficulties with impulse control which may result, in rare
instances, in overly aggressive behaviors or socially
inappropriate acts. Also, defiant and angry behaviors can
Sleep Disorders are fairly common among people with
TS. These include frequent awakenings or walking or talking
in one's sleep.
11. Q. Do students with TS have special educational
A. While school children with TS as a group have the same IQ range as the population at large, many have special
educational needs. Data show that many may have some kind of learning problem. That condition, combined with attention
deficits and the difficulty coping with frequent tics, often call for special educational assistance. The use of tape recorders,
typewriters, or computers for reading and writing problems, untimed exams (in a private room if vocal tics are a problem),
and permission to leave the classroom when tics become overwhelming are often helpful. Some children need extra help
such as access to tutoring in a resource room.
When difficulties in school cannot be resolved, an educational evaluation may be indicated. A resulting identification as "other
health impaired" under federal law will entitle the student to an Individual Education Plan (IEP) which addresses specific
educational problems in school. Such an approach can significantly reduce the learning difficulties that prevent the
young person from performing at his/her potential. The child who cannot be adequately educated in a public school with
special services geared to his/her individual needs may be best served by enrollment in a special school.
12. Q. Is TS inherited?
A. Genetic studies indicate that TS is inherited as a dominant gene (or genes) causing different symptoms in different family
members. A person with TS has about a 50% chance of passing the gene to one of his/her children with each
separate pregnancy. However, that genetic predisposition may express itself as TS, as a milder tic disorder or as
obsessive compulsive symptoms with no tics at all. It is known that a higher than normal incidence of milder tic disorders and
obsessive compulsive behaviors occur in the families of TS patients.
The sex of the offspring also influences the expression of the
gene. The chance that the gene-carrying child of a person with TS will have symptoms is at least three to four times higher for
a son than for a daughter. Yet only about 10% of the children who inherit the gene will have symptoms severe enough to
ever require medical attention. In some cases TS may not be inherited, and cases such as these are identified as sporadic
TS. The cause in these instances is unknown.
13. Q. Is there a cure?
A. Not yet.
14. Q. Is there ever a remission?
A. Many people experience marked improvement in their late teens or early twenties. Most people with TS get better, not
worse, as they mature, and those diagnosed with TS have a normal life span. As many as 1/3 of patients experience
remission of tic symptoms in adulthood.
15. Q. How many people in the U.S. have TS?
A. Since many people with TS have yet to be diagnosed,
there are no absolute figures. The official estimate by the
National Institutes of Health is that 100,000 Americans have
full-blown TS. Some genetic studies suggest that the figure
may be as high as one in two hundred if those with chronic
multiple tics and/or transient childhood tics are included in the
16. Q. What is the history of TS?
A. In 1825 the first case of TS was reported in medical
literature with a description of the Marquise de Dampierre, a
noblewoman whose symptoms included involuntary tics of
many parts of her body and various vocalizations including
coprolalia and echolalia. Later, Dr. Georges Gilles de la
Tourette, the French neurologist for whom the disorder is
named, first described nine cases in 1885. Samuel Johnson, the lexicographer, and Andre
Malraux, the French author, are
among the famous people who are thought to have had TS.
Q. What is the current focus of research?
A. Since 1984, the TSA has directly funded important research investigations in a number of scientific areas relevant to TS.
Recently, studies have intensified to understand how the disorder is transmitted from one generation to the next, and
researchers are working toward locating the gene marker for TS. That focus has been enhanced by the efforts of a TSA-
supported international group of scientists who have formed a unique network to share what they know about the genetics of
TS and to systematically cooperate to unravel the unknown.
Additional insights are being obtained from studies of large
families (kindreds) with numerous members who have TS. At the same time, investigators continue to study specific groups
of brain chemicals to better understand the syndrome and to identify new and improved medications.
Q. What type of services for families exist?
A. Local TSA affiliates and support groups allow families to
exchange ideas and feelings about their common problems.
Often family therapy is helpful. Parents of a child with TS have to walk a fine line between understanding and overprotection.
They are constantly faced with deciding whether or not certain actions are the expression of TS or just poor behavior.
Parents then must determine the appropriate response. For socially unacceptable behavior, a child should be encouraged
to control what he/she can whenever possible, and try to substitute what is more socially acceptable. Parents are urged
to give their children with TS the opportunity for as much independence as possible, while gently but firmly limiting
attempts by some children to use their symptoms to control those around them.
Q. What is the Tourette Syndrome Association?
A. TSA, founded in 1972, is the only national voluntary non-
profit membership organization dedicated to:
- Identifying the cause;
- Finding the cure; and
- Controlling the effects of TS.
Members include individuals with the disorder, their relatives
and other interested, concerned people. The Association
develops and disseminates educational material to individuals,
professionals and to agencies in the fields of health care,
education and government; coordinates support services to
help people and their families cope with the problems that
occur with TS; funds research that will ultimately find the cause
of and cure for TS and, at the same time, lead to improved
medications and treatments.
- Offers direct help to TS families in crisis
situations through its Information and Referral
- Organizes workshops and symposiums for
scientists, clinicians and others working in the
field of TS
- Promotes public awareness and understanding
- Maintains a database of allied professionals
- Sponsors the Tourette Syndrome Brain Bank
Program involving collection of sorely needed
tissue for scientific research
- Serves many thousands of members throughout
the USA and abroad
- Increases the knowledge and sensitivity of health
care professionals to TS through exhibits at
conferences, the dissemination of literature and
the organization of national meetings
- Develops and maintains state-by-state lists of
doctors who can diagnose and treat TS, as well as medical referrals in other countries; lists of allied
professionals (psychologists, social workers) by
state; ABA lists of pro-bono attorneys by state;
advocate lists by state; and lists of health
insurance resources by state.
- Organizes and assists local chapters and support
groups throughout the US and around the world
- Represents the interests of members to the
government on critical policy issues including
orphan drugs, health insurance and employment
20. Q. Why become a member of TSA?
- To help reduce stigma by supporting TSA in its
efforts to increase public understanding of TS
- To help bring about the early identification and
proper treatment of TS
- To receive the quarterly TSA Newsletter
containing the latest information on treatment,
research programs and scientific discoveries
- To join other families at meetings to discuss
common problems and offer mutual support
- To obtain discounts on publications
- To support TSA advocacy programs
- To become eligible for discounted registration
fees at TSA National Conferences
- To help conquer Tourette Syndrome
The Tourette Syndrome Association has an extensive list of
publications and video tapes that discuss in detail many of the topics touched
upon in this pamphlet. Full descriptions are contained in the
TSA Catalog of Publications. *
The above questions and answers are intended to provide
basic information about TS. They are not intended to, nor do
they constitute medical advice. Readers are warned against
changing medical schedules or life activities based on this
information without first consulting a physician.
Our programs of research, professional and public education, and family services are made possible through the generosity
of our donors.