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Tourette Syndrome (FAQ)

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Answers to questions families often have about caring for their child with Tourette syndrome

What is Tourette syndrome and what causes it?

Tourette syndrome (TS) is a childhood-onset neurological condition with both motor and phonic (vocal) tics, although not necessarily at the same time, lasting for at least a year. Most people diagnosed with TS will also have one or more non-tic-associated conditions, including attention deficit hyperactivity disorder (ADHD), obsessive compulsive disorder (OCD), anxiety, learning problems, sleep disorders, depression, and anger dysregulation. Onset of the signs and symptoms of these conditions can precede, co-occur with, or follow the onset of tics. These conditions usually pose greater risk to the neuro-developmental, psycho-social, and behavioral well-being of the child than do the tics.

What are the symptoms of Tourette syndrome?

The tics may involve movements in almost any body part, including neck twisting, blinking, shoulder shrugging, sniffing, throat clearing, hair flinging, twirling, and others. They typically first emerge between 4 and 7 years of age and, over time, may evolve from simple to complex and from just motor to motor and/or phonic. Associated behavioral or neurodevelopmental conditions may precede, occur with, or begin after the tics have emerged.

How is it diagnosed?

There is no diagnostic test to confirm TS. The diagnosis is made by history and by clinical exam.

What is the prognosis?

As children mature, many will show fewer symptoms of TS. Some will have no symptoms of TS as adults. More details can be found in the Medical Home Portal Tourette Syndrome, prognosis section.

What is the risk for other family members or future babies?

The cause of TS is poorly understood, although both genetic and environmental factors influence variations in the expression of the signs and symptoms of tics and associated conditions.

What treatments/therapies/medications are recommended or available?

Because tics wax and wane over time, a "wait and see" approach often makes sense. A minority of patients will require direct intervention for tic suppression. The Medical Home should assess the need for pharmacotherapy for tics and refer to specialists as needed. Children with TS and their families will have different thresholds for when they feel the tics should be treated based on comfort with the tics, family expectations, and the presence or absence of associated conditions. Associated conditions, such as ADHD and anxiety, will often cause the child more problems than the tics themselves and any child with TS should be evaluated for these conditions by a behavioral health professional.

How will my child and our family be impacted?

Parents of course worry about the impact of the tics with their child's friends, at school, and on their child's self-esteem. The attitude of the parents is important in how the child feels about himself and discussion with a local support group, your child's physician, or a counselor may be helpful for your child and/or you and your spouse.

Why do children with TS sometimes shout obscenities and ethnic slurs?

Coprolalia (involuntary swearing) occurs in fewer than 15% of people with TS. These symptoms appear to be due to an uncontrollable urge to "voice the forbidden," even when the person with TS does not feel anger. [Tourette: 2007].

Will my child with TS need special education?

Children with TS have the same IQ distribution as the entire population. However, special education support and accommodations may be helpful and indicated for children with the problems associated with TS, including attention and learning problems. See Educational information (TSA).

Resources

Information & Support

Related Portal Content
Tourette Syndrome
Assessment and management information for the primary care clinician caring for the child with Tourette syndrome.

Care Notebook
Medical information in one place with fillable templates to help both families and providers. Choose only the pages needed to keep track of the current health care summary, care team, care plan, health coverage, expenses, scheduling, and legal documents. Available in English and Spanish.

For Parents and Patients

Support

Tourette Association of America
Information regarding the diagnosis and treatment of TS, as well as research, educational concerns, and much more.

General

Genetic Conditions: Tourette Syndrome (MedlinePlus)
Information for families that includes description, frequency, causes, inheritance, other names, and additional resources; from the National Library of Medicine.

Gilles de la Tourette Syndrome (NIH)
Database search that gives links to abstracts, full-text journals, books, and reports about TS; National Institutes of Health.

Ask the expert newsletters (TSA)
Articles written by professionals that address questions about treatment, coping, and medical issues affecting people with TS and their families.

Services for Patients & Families in Idaho (ID)

For services not listed above, browse our Services categories or search our database.

* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.

Studies

Children with Tourette Syndrome (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Authors & Reviewers

Initial publication: October 2012; last update/revision: October 2015
Current Authors and Reviewers:
Author: Lynne M. Kerr, MD, PhD
Funding: The Medical Home Portal thanks the 2011-2012 URLEND Medical Home Portal trainees group for their contribution to this page.

Page Bibliography

Tourette Syndrome Association.
What is Tourette syndrome? and TS: Frequently Asked Questions.
Tourette syndrome association; (2007) https://tourette.org/about-tourette/overview/faqs/. Accessed on 11/04/2022.
Basic information regarding the diagnosis of TS as well as information about the TS Association for individuals and families with TS