Tourette’s
This webpage is all about Tourette syndrome
(also called Tourette's syndrome, Tourette's
disorder, Gilles de la Tourette syndrome, GTS,
or more commonly, Tourette's or TS):

What is Tourette’s?

Tourette’s (TS) is a neurological disorder characterized by repetitive, stereotyped, involuntary
movements and vocalizations called tics. The disorder is named for Dr. Georges Gilles de la Tourette,
the pioneering French neurologist who in 1885 first described the condition in an 86-year-old French
noblewoman.

The early symptoms of TOURETTE’S are almost always noticed first in childhood, with the average onset
between the ages of 7 and 10 years. TOURETTE’S occurs in individuals from all ethnic groups; males are
affected about three to four times more often than females. It is estimated that 200,000 Americans have
the most severe form of TOURETTE’S, and as many as one in 100 exhibit milder and less complex
symptoms such as chronic motor or vocal tics or transient tics of childhood. Although TOURETTE’S can
be a chronic condition with symptoms lasting a lifetime, most individuals with the condition experience
their worst symptoms in their early teens, with improvement occurring in the late teens and continuing
into adulthood.

What are the symptoms?

Tics are classified as either simple or complex. Simple motor tics
are sudden, brief, repetitive movements that involve a limited
number of muscle groups. Some of the more common simple tics
include eye blinking and other vision irregularities, facial grimacing,
shoulder shrugging, and head or shoulder jerking.  Simple
vocalizations might include repetitive throat-clearing, sniffing,
or grunting sounds. Complex tics are distinct, coordinated patterns
of movements involving several muscle groups. Complex motor
tics might include facial grimacing combined with a head twist and
a shoulder shrug. Other complex motor tics may actually appear purposeful, including sniffing or touching
objects, hopping, jumping, bending, or twisting. Simple vocal tics may include throat-clearing, sniffing or
snorting, grunting, or barking. More complex vocal tics include words or phrases.  

Perhaps the most dramatic and disabling tics include motor movements that result in self-harm such as
punching oneself in the face or vocal tics including coprolalia (i.e., uttering swear words) or echolalia (i.e.,
repeating the words or phrases of others). Some tics are preceded by an urge or sensation in the affected
muscle group, commonly called a premonitory urge. Some with TOURETTE’S will describe a need to
complete a tic in a certain way or a certain number of times in order to relieve the urge or decrease the
sensation.

Tics are often worse with excitement or anxiety and better during calm, focused activities. Certain
physical experiences can trigger or worsen tics, for example tight collars may trigger neck tics, or hearing
another person sniff or throat-clear may trigger similar sounds. Tics do not go away during sleep but are
often significantly diminished.  

What is the course of TOURETTE’S?

Tics come and go over time, varying in type, frequency, location, and severity.  
The first symptoms usually occur in the head and neck area and may progress
to include muscles of the trunk and extremities. Motor tics generally precede
the development of vocal tics and simple tics often precede complex tics.  Most
clients experience peak tic severity before the mid-teen years with
improvement for the majority of clients in the late teen years and early
adulthood. Approximately 10 percent of those affected have a progressive
or disabling course that lasts into adulthood.  

Can individuals with TOURETTE’S control their tics?

Although the symptoms of TOURETTE’S are involuntary, some individuals can sometimes suppress,
camouflage, or otherwise manage their tics in an effort to minimize their impact on functioning. However,
individuals with TOURETTE’S often report a substantial buildup in tension when suppressing their tics to
the point where they feel that the tic must be expressed. Tics in response to an environmental trigger can
appear to be voluntary or purposeful but are not.

What causes TOURETTE’S?

Although the cause of TOURETTE’S is unknown, current research points to abnormalities in certain brain
regions (including the basal ganglia, frontal lobes, and cortex), the circuits that interconnect these regions,
and the neurotransmitters (dopamine, serotonin, and norepinephrine) responsible for communication
among nerve cells. Given the often complex presentation of TOURETTE’S, the cause of the disorder is
likely to be equally complex.

What disorders are associated with TOURETTE’S?

Many with TOURETTE’S experience additional neurobehavioral
problems including inattention; hyperactivity and impulsivity
(attention deficit hyperactivity disorder—ADHD) and related
problems with reading, writing, and arithmetic; and obsessive-
compulsive symptoms such as intrusive thoughts/worries and
repetitive behaviors. For example, worries about dirt and germs
may be associated with repetitive hand-washing, and concerns
about bad things happening may be associated with ritualistic
behaviors such as counting, repeating, or ordering and arranging.  
Individuals with TOURETTE’S have also reported problems with
depression or anxiety disorders, as well as other difficulties with
living, that may or may not be directly related to TOURETTE’S.  
Given the range of potential complications, individuals with
TOURETTE’S are best served by receiving medical care that
provides a comprehensive treatment plan.

How is TOURETTE’S diagnosed?

TOURETTE’S is a diagnosis that doctors make after verifying that the patient has had both motor and
vocal tics for at least 1 year.  The existence of other neurological or psychiatric conditions can also help
doctors arrive at a diagnosis.  Common tics are not often misdiagnosed by knowledgeable clinicians.  But
atypical symptoms or atypical presentation (for example, onset of symptoms in adulthood) may require
specific specialty expertise for diagnosis. There are no blood or laboratory tests needed for diagnosis, but
neuroimaging studies, such as magnetic resonance imaging (MRI), computerized tomography (CT), and
electroencephalogram (EEG) scans, or certain blood tests may be used to rule out other conditions that
might be confused with TOURETTE’S .  

It is not uncommon for clients to obtain a formal diagnosis of TOURETTE’S only after symptoms have
been present for some time. The reasons for this are many.  For families and physicians unfamiliar with
TOURETTE’S, mild and even moderate tic symptoms may be considered inconsequential, part of a
developmental phase, or the result of another condition.  For example, parents may think that eye
blinking is related to vision problems or that sniffing is related to seasonal allergies.  Many clients are
self-diagnosed after they, their parents, other relatives, or friends read or hear about TOURETTE’S from
others.  

These include childhood-onset involuntary movement disorders such as dystonia, or psychiatric disorders
characterized by repetitive behaviors/movements (for example, stereotypic behaviors in autism and
compulsive behaviors in obsessive-compulsive disorder — OCD).

How is TOURETTE’S treated?

Because tic symptoms do not often cause impairment, the majority
of individuals with TOURETTE’S require no medication for tic
suppression. However, effective medications are available for those
whose symptoms interfere with functioning. Neuroleptics are the
most consistently useful medications for tic suppression; a number
are available but some are more effective than others (e.g.,
haloperidol and pimozide). Unfortunately, there is no one
medication that is helpful to all individuals with TOURETTE’S,
nor does any medication completely eliminate symptoms.  In
ddition, all medications have side effects.

Most neuroleptic side effects can be managed by initiating treatment slowly and reducing the dose when
side effects occur. The most common side effects of neuroleptics include sedation, weight gain, and
cognitive dulling.  Neurological side effects such as tremor, dystonic reactions (twisting movements or
postures), parkinsonian-like symptoms, and other dyskinetic (involuntary) movements are less common
and are readily managed with dose reduction. Discontinuing neuroleptics after long-term use must be
done slowly to avoid rebound increases in tics and withdrawal dyskinesias. One form of withdrawal
dyskinesia called tardive dyskinesia is a movement disorder distinct from TOURETTE’S that may result
from the chronic use of neuroleptics. The risk of this side effect can be reduced by using lower doses of
neuroleptics for shorter periods of time.  

Other medications may also be useful for reducing tic severity, but most have not been as extensively
studied or shown to be as consistently useful as neuroleptics.  Additional medications with demonstrated
efficacy include alpha-adrenergic agonists such as clonidine and guanfacine. These medications are used
primarily for hypertension but are also used in the treatment of tics. The most common side effect from
these medications that precludes their use is sedation.

Effective medications are also available to treat some of the associated neurobehavioral disorders that
can occur in clients with TOURETTE’S.  Recent research shows that stimulant medications such as
methylphenidate and dextroamphetamine can lessen ADHD symptoms in individuals with TOURETTE’S
without causing tics to become more severe.  However, the product labeling for stimulants currently
contraindicates the use of these drugs in kids with tics and those with a family history of tics. Scientists
hope that future studies will include a thorough discussion of the risks and benefits of stimulants in those
with TOURETTE’S or a family history of TOURETTE’S and will clarify this issue.  For obsessive-
compulsive symptoms that significantly disrupt daily functioning, the serotonin reuptake inhibitors
(clomipramine, fluoxetine, fluvoxamine, paroxetine, and sertraline) have been proven effective in some
clients.  

Psychotherapy may also be helpful. Although psychological problems do not cause TOURETTE’S, such
problems may result from TOURETTE’S. Psychotherapy can help the person with TOURETTE’S better
cope with the disorder and deal with the secondary social and emotional problems that sometimes occur.
More recently, specific behavioral treatments that include awareness training and competing response
training, such as voluntarily moving in response to a premonitory urge, have shown effectiveness in small
controlled trials.  Larger and more definitive NIH-funded studies are underway.   

Is TOURETTE’S inherited?

Evidence from twin and family studies suggests that
TOURETTE’S is an inherited disorder. Although early
family studies suggested an autosomal dominant mode
of inheritance (an autosomal dominant disorder is one
in which only one copy of the defective gene, inherited from one parent, is necessary to produce the
disorder), more recent studies suggest that the pattern of inheritance is much more complex.  Although
there may be a few genes with substantial effects, it is also possible that many genes with smaller effects
and environmental factors may play a role in the development of TOURETTE’S.

Genetic studies also suggest that some forms of ADHD and OCD are genetically related to TOURETTE’S,
but there is less evidence for a genetic relationship between TOURETTE’S  and other neurobehavioral
problems that commonly co-occur with TOURETTE’S . It is important for families to understand that
genetic predisposition may not necessarily result in full-blown TOURETTE’S; instead, it may express
itself as a milder tic disorder or as obsessive-compulsive behaviors. It is also possible that the gene-
carrying offspring will not develop any TOURETTE’S symptoms.

The sex of the person also plays an important role in TOURETTE’S gene expression. At-risk males are
more likely to have tics and at-risk females are more likely to have obsessive-compulsive symptoms.

Individuals with TOURETTE’S may have genetic risks for other neurobehavioral disorders such as
depression or substance abuse. Genetic counseling of people with TOURETTE’S should include a full
review of all potentially hereditary conditions in the family.

What is the prognosis?

Although there is no cure for TOURETTE’S, the condition in many
people improves in the late teens and early 20s. As a result, some
may actually become symptom-free or no longer need medication
for tic suppression. Although the disorder is generally lifelong and
chronic, it is not a degenerative condition. People with TOURETTE’S
have a normal life expectancy. TOURETTE’S does not impair
intelligence. Although tic symptoms tend to decrease with age, it is
possible that neurobehavioral disorders such as depression, panic
attacks, mood swings, and antisocial behaviors can persist and cause
impairment in adult life.

What is the best educational setting for kids with TOURETTE’S?

Although children with TOURETTE’S often function well in the regular classroom, ADHD, learning
disabilities, obsessive-compulsive symptoms, and frequent tics can greatly interfere with academic
performance or social adjustment. After a comprehensive assessment, children should be placed in an
educational setting that meets their individual needs. Children may require tutoring, smaller or special
classes, and in some cases special schools.

All children with TOURETTE’S need a tolerant and compassionate setting that both encourages them
to work to their full potential and is flexible enough to accommodate their special needs. This setting
may include a private study area, exams outside the regular classroom, or even oral exams when the
youngster's symptoms interfere with his or her ability to write. Untimed testing reduces stress for
children with TOURETTE’S.

What research is being done?

Within the Federal government, the leading supporter of research on
TOURETTE’S and other neurological disorders is the National Institute
of Neurological Disorders and Stroke (NINDS). The NINDS, a part of the
National Institutes of Health (NIH), is responsible for supporting and
conducting research on the brain and central nervous system.

NINDS sponsors research on TOURETTE’S both in its laboratories at the
NIH and through grants to major medical institutions across the country.
The National Institute of Mental Health, the National Center for Research
Resources, the National Institute of Youngster Health and Human
Development, the National Institute on Drug Abuse, and the National Institute on Deafness and Other
Communication Disorders also support research of relevance to TOURETTE’S. Another component of the
Department of Health and Human Services, the Centers for Disease Control and Prevention, funds
professional education programs as well as TOURETTE’S research.

Knowledge about TOURETTE’S comes from studies across a number of medical and scientific disciplines,
including genetics, neuroimaging, neuropathology, clinical trials (medication and non-medication),
epidemiology, neurophysiology, neuroimmunology, and descriptive/diagnostic clinical science.

•     Clinical trials.  A number of clinical trials in TOURETTE’S have recently been completed or are
currently underway.  These include studies of stimulant treatment of ADHD in TOURETTE’S and
behavioral treatments for reducing tic severity in kids and adults. Smaller trials of novel approaches
to treatment such as dopamine agonist and GABAergic medications also show promise.

•     Epidemiology and clinical science. Careful epidemiological studies now estimate the prevalence of
TOURETTE’S to be substantially higher than previously thought with a wider range of clinical severity.
Furthermore, clinical studies are providing new findings regarding TOURETTE’S and co-existing
conditions.  These include subtyping studies of TOURETTE’S and OCD, an examination of the link
between ADHD and learning problems in kids with TOURETTE’S , a new appreciation of sensory tics,
and the role of co-existing disorders in rage attacks. One of the most important and controversial areas
of TOURETTE’S science involves the relationship between TOURETTE’S and autoimmune brain injury
associated with group A beta-hemolytic streptococcal infections or other infectious processes. There are
a number of epidemiological and clinical investigations currently underway in this intriguing area.

•     Genetic studies. Currently, NIH-funded investigators are conducting a variety of large-scale genetic
studies. Rapid advances in the technology of gene finding allows for genome-wide screening approaches in
TOURETTE’S, and finding a gene or genes for TOURETTE’S would be a major step toward understanding
genetic risk factors. In addition, understanding the genetics of TOURETTE’S genes will strengthen clinical
diagnosis, improve genetic counseling, lead to the clarification of pathophysiology, and provide clues for
more effective therapies.

•     Neuroimaging studies. Within the past 5 years, advances in imaging technology and an increase in
trained investigators have led to an increasing use of novel and powerful techniques to identify brain
regions, circuitry, and neurochemical factors important in TOURETTE’S and related conditions.

•     Neuropathology.  Within the past 5 years, there has been an increase in the number and quality of
donated postmortem brains from TOURETTE’S clients available for research purposes.  This increase,
coupled with advances in neuropathological techniques, has led to initial findings with implications for
neuroimaging studies and animal models of TOURETTE’S.
Dealing With Tourette’s —

Many individuals don't understand what TOURETTE’S is or what causes it, so they
might not know what to make of someone who has TOURETTE’S. And if individuals
stare, it can feel embarrassing or frustrating. Individuals with TOURETTE’S might
have to explain their condition a lot or have to deal with individuals thinking they're
strange. Although it's not easy to have TOURETTE’S, there's good news — the tics
usually get milder or go away during adulthood.

In the meantime, if you have TOURETTE’S, it can help to focus your energies on
something else. Some of the things teens with TOURETTE’S can do include:

•     Embrace your creativity. Creative activities such as writing, painting, or making music help focus the
mind on other things. There's speculation that the composer Mozart had TOURETTE’S.

•     Find support. The Tourette’s Association sponsors support groups with others who understand the
challenges of TOURETTE’S.

•     Get involved. Some individuals say that when they're engrossed in an activity, their tics are milder
and less frequent. Sports, exercise, or hobbies are great ways for teens to focus mental and physical
energy. Some well-known athletes have TOURETTE’S.

•     Give a helping hand. Dealing with TOURETTE’S often makes individuals more understanding of other
individuals's feelings, especially other teens with problems. Use your special sensitivity by volunteering.

•     Take control. Individuals with TOURETTE’S can feel more in control of their lives by researching
TOURETTE’S , asking their doctors plenty of questions, and taking an active role in their treatment.

Each person with TOURETTE’S will cope differently with its physical, emotional, and social challenges.
Because TOURETTE’S doesn't usually restrict activities, though, individuals with the condition can enjoy
themselves and pursue their dreams and goals in just the same way their friends do.