Tourette Syndrome

U.S. DEPARTMENT OF HEALTH 

AND HUMAN SERVICES

Public Health Service

National Institutes of Health

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Tourette Syndrome

What is Tourette syndrome?

T ourette syndrome (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 TS are typically 

noticed first in childhood, with the average 

onset between the ages of 3 and 9 years. 

TS occurs in people from all ethnic groups; 

males are affected about three to four times 

more often than females. An estimated 

200,000 Americans have the most severe 

form of TS, and as many as one in 100 exhibit 

milder and less complex symptoms such as 

chronic motor or vocal tics. Although TS can 

be a chronic condition with symptoms lasting 

a lifetime, most people with the condition 

experience their worst tic symptoms in their 

early teens, with improvement occurring in 

the late teens and continuing into adulthood.
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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. Simple tics include eye 

blinking and other eye movements, 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. More 

complex vocal tics include words or phrases. 

Perhaps the most dramatic and disabling tics 

include motor movements that result in selfharm such as punching oneself in the face 

or vocal tics including coprolalia (uttering 

socially inappropriate words such as swearing) 

or echolalia (repeating the words or phrases 

of others). However, coprolalia is present 

only in a small number (10 to 15 percent) of 

individuals with TS. Some tics are preceded 

by an urge or sensation in the affected muscle 

group, commonly called a premonitory urge. 

Some with TS 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.
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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 TS? 

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 patients experience peak 

tic severity before the mid-teen years with 

improvement for the majority of patients 

in the late teen years and early adulthood. 

Approximately 10 to 15 percent of those 

affected have a progressive or disabling 

course that lasts into adulthood.

Can people with TS control their tics?

Although the symptoms of TS are involuntary, some people can sometimes suppress, camouflage, or otherwise 

manage their tics in an effort to minimize 

their impact on functioning. However, 

people with TS 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. 
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What causes TS?

Although the cause of TS 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 TS, the cause of the 

disorder is likely to be equally complex. 

What disorders are associated with TS?

Many individuals with TS experience additional neurobehavioral problems 

that often cause more impairment than the 

tics themselves. These include inattention, 

hyperactivity and impulsivity (attention deficit 

hyperactivity disorder—ADHD); 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. People with TS 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 TS. In addition, although most 

individuals with TS experience a significant 

decline in motor and vocal tics in late adolescence and early adulthood, the associated 

neuro-behavioral conditions may persist. 

Given the range of potential complications, 
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people with TS are best served by receiving 

medical care that provides a comprehensive 

treatment plan. 

How is TS diagnosed?

T 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. 

However, atypical symptoms or atypical 

presentations (for example, onset of symptoms 

in adulthood) may require specific specialty 

expertise for diagnosis. There are no blood, 

laboratory, or imaging tests needed for diagnosis. In rare cases, neuroimaging studies, 

such as magnetic resonance imaging (MRI) 

or computerized tomography (CT), electroencephalogram (EEG) studies, or certain blood 

tests may be used to rule out other conditions 

that might be confused with TS when the 

history or clinical examination is atypical. 

Many patients obtain a formal diagnosis of 

TS only after symptoms have been present 

for some time. The reasons for this are many. 

For families and physicians unfamiliar with 

TS, 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 patients are self-diagnosed after they, 

their parents, other relatives, or friends read 

or hear about TS from others. 
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How is TS treated?

Because tic symptoms often do not cause impairment, the majority of people with 

TS require no medication for tic suppression. 

However, effective medications are available 

for those whose symptoms interfere with 

functioning. Neuroleptics (drugs that may 

be used to treat psychotic and non-psychotic 

disorders) are the most consistently useful 

medications for tic suppression; a number 

are available but some are more effective 

than others (for example, haloperidol 

and pimozide).

Unfortunately, there is no one medication 

that is helpful to all people with TS, nor 

does any medication completely eliminate 

symptoms. In addition, all medications have 

side effects. Many 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 dyskinesia called tardive 

dyskinesia is a movement disorder distinct 

from TS that may result from the chronic 
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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 

effectiveness 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 is sedation. 

However, given the lower side effect risk 

associated with these medications, they 

are often used as first-line agents before 

proceeding to treatment with neuroleptics.

Effective medications are also available to 

treat some of the associated neurobehavioral 

disorders that can occur in patients with 

TS. Recent research shows that stimulant 

medications such as methylphenidate and 

dextroamphetamine can lessen ADHD symptoms in people with TS without causing tics 

to become more severe. However, the product 

labeling for stimulants currently contraindicates the use of these drugs in children with 

tics/TS 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 TS or a family 

history of TS and will clarify this issue. 
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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 patients. 

Behavioral treatments such as awareness 

training and competing response training 

can also be used to reduce tics. A recent 

NIH-funded, multi-center randomized control 

trial called Cognitive Behavioral Intervention 

for Tics, or CBIT, showed that training to 

voluntarily move in response to a premonitory urge can reduce tic symptoms. Other 

behavioral therapies, such as biofeedback or 

supportive therapy, have not been shown to 

reduce tic symptoms. However, supportive 

therapy can help a person with TS better 

cope with the disorder and deal with the 

secondary social and emotional problems 

that sometimes occur.

Is TS inherited?

Evidence from twin and family studies suggests that TS 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 TS. 
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Genetic studies also suggest that some forms 

of ADHD and OCD are genetically related 

to TS, but there is less evidence for a genetic 

relationship between TS and other neurobehavioral problems that commonly co-occur 

with TS. It is important for families to 

understand that genetic predisposition may 

not necessarily result in full-blown TS; 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 TS symptoms. 

The gender of the person also plays an 

important role in TS gene expression. At-risk 

males are more likely to have tics and at-risk 

females are more likely to have obsessivecompulsive symptoms. 

Genetic counseling of individuals with TS 

should include a full review of all potentially 

hereditary conditions in the family.

What is the prognosis?

Although there is no cure for TS, the condition in many individuals 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. Individuals 

with TS have a normal life expectancy. TS 

does not impair intelligence. Although tic 

symptoms tend to decrease with age, it is 

possible that neurobehavioral disorders 

such as ADHD, OCD, depression, generalized 

anxiety, panic attacks, and mood swings can 

persist and cause impairment in adult life. 
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What is the best educational setting for 

children with TS?

Although students with TS 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, 

students should be placed in an educational 

setting that meets their individual needs. Students may require tutoring, smaller or special 

classes, and in some cases special schools. 

All students with TS 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 child’s 

symptoms interfere with his or her ability 

to write. Untimed testing reduces stress 

for students with TS. 

What research is being done?

Within the Federal government, the National Institute of Neurological 

Disorders and Stroke (NINDS), a part of 

the National Institutes of Health (NIH), is 

responsible for supporting and conducting 

research on the brain and nervous system. 

The NINDS and other NIH components, such 

as the National Institute of Mental Health, 

the Eunice Kennedy Shriver National Institute 

of Child Health and Human Development, 

the National Institute on Drug Abuse, and 
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the National Institute on Deafness and Other 

Communication Disorders, support research of 

relevance to TS, either at NIH laboratories or 

through grants to major research institutions 

across the country. Another component of the 

Department of Health and Human Services, the 

Centers for Disease Control and Prevention, 

funds professional education programs as 

well as TS research. 

Knowledge about TS 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. 

Genetic studies. Currently, NIH-funded 

investigators are conducting a variety of largescale genetic studies. Rapid advances in the 

technology of gene discovery will allow for 

genome-wide screening approaches in TS, 

and finding a gene or genes for TS would be a 

major step toward understanding genetic risk 

factors. In addition, understanding the genetics 

of TS genes may strengthen clinical diagnosis, 

improve genetic counseling, lead to the clarification of pathophysiology, and provide 

clues for more effective therapies. 

Neuroimaging studies. 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 TS and related conditions. 
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Neuropathology. There has been an increase in 

the number and quality of donated postmortem 

brains from TS patients 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 TS. 

Clinical trials. A number of clinical trials 

in TS have recently been completed or are 

currently underway. These include studies 

of stimulant treatment of ADHD in TS and 

behavioral treatments for reducing tic 

severity in children and adults. Smaller 

trials of novel approaches to treatment such 

as dopamine agonists and glutamatergic 

medications also show promise. 

Epidemiology and clinical science. Careful 

epidemiological studies now estimate the 

prevalence of TS to be substantially higher 

than previously thought, with a wider range 

of clinical severity. Clinical studies are 

providing new findings regarding TS and 

co-existing conditions. These include subtyping studies of TS and OCD, an examination of 

the link between ADHD and learning problems in children with TS, 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 TS 

science involves the relationship between 

TS and autoimmune brain injury associated 

with certain streptococcal infections or other 

infectious processes. There are a number of 

epidemiological and clinical investigations 

currently underway in this intriguing area.
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Where can I get more information? 

For more information on neurological disorders or research programs funded 

by the National Institute of Neurological 

Disorders and Stroke, contact the Institute’s 

Brain Resources and Information Network 

(BRAIN) at: 

BRAIN

P.O. Box 5801

Bethesda, MD 20824

800-352-9424

www.ninds.nih.gov

Information also is available from the 

following organization:

Tourette Syndrome Association

42-40 Bell Boulevard, Suite 205

Bayside, NY 11361-2820

718-224-2999

888-4-TOURET (486-8738)

http://tsa-usa.org
NIH Publication No. 12-2163 January 2012

NIH . . . Turning Discovery Into Health

Prepared by:

Office of Communications and Public Liaison

National Institute of Neurological 

Disorders and Stroke

National Institutes of Health

Department of Health and Human Services

Bethesda, Maryland 20892