Frequently Asked Questions FAQs
The Tourette Association of America aims to answer Frequently Asked Questions (FAQs) about Tourette Syndrome and Tic Disorders.
What is Tourette Syndrome?
Tourette Syndrome is a neurodevelopmental disorder that affects children, adolescents and adults. The condition is characterized by sudden, involuntary movements and/or sounds called tics. Tics can range from mild/inconsequential to moderate and severe, and are disabling in some cases. Average age of onset is 7-years-old, but tics must appear before age 18 for a diagnosis. Males are affected 3 to 4 more times than females.
How is Tourette Syndrome diagnosed?
Tourette is diagnosed by a doctor or other professionally-trained care providers through careful and often repeated clinical examinations. There is no clinical or laboratory test available for diagnosing Tourette. However, a person with suspected Tourette may undergo MRI or other tests to rule out other possible causes of their tics.
What are the most common symptoms?
Symptoms vary from person to person and can range from mild to severe. It’s not uncommon for symptoms to change frequency over short time periods or to disappear for extended time periods (wax and wane). Common motor tics include: eye blinking, head jerking and facial movements. Common vocal tics include: throat clearing, sniffing and tongue clicking.
What is the prevalence of Tourette Syndrome and Tic Disorders?
Current research estimates that 1 in 100 school-aged children in the U.S. have Tourette or another Tic Disorder. Based on 2010 U.S. census data, the prevalence for Tourette in school-aged children in the US is .6% (or 6 per thousand) in the U.S. for school-aged children (ages 5-17).
Is TS inherited?
There are scientific studies suggesting that Tourette is genetic and is inherited as a dominant gene that is passed from parent to child. However, there is no conclusive evidence that’s widely accepted by the scientific community.
What is Coprolalia?
Coprolalia is an extreme and rare case of Tourette often sensationalized by the media. It is the involuntary utterance of obscene and socially unacceptable words and phrases. It is relatively rare in individuals with Tourette (only 10% of those diagnosed have this symptom), is not required for diagnosis, and does not persist in many cases.
Do people with Tourette Syndrome have other problems in addition to tics?
Individuals with Tourette often have co-occurring conditions, most commonly Obsessive-Compulsive Disorder (OCD), Attention Deficit-Hyperactivity Disorder (ADHD), anxiety and learning difficulties
Who treats Tourette Syndrome?
Tourette can be treated by a variety of professionals. Most commonly Tourette is treated by both medical doctors (which include neurologists and psychiatrists) and allied professionals (which include psychologists, social workers, counselors and occupational therapists). It is recommended that your first point of contact be your physician who should be able to make referrals if appropriate.
How is Tourette treated?
Many individuals with Tic Disorders do not need or seek treatment, while others require multiple therapeutic interventions to manage tics and symptoms of co-occurring conditions. Treatment is generally considered when tics are painful, distressing, interfere with social, academic or professional life. When needed, treatment strategies for Tourette may include medication and/or behavioral intervention. Surgical treatments (i.e. deep brain stimulation) continue to be developed and should only be considered for the most severe, drug-refractory, cases of Tourette.
Is someone with Tourette Syndrome able to live a normal life?
The word “normal” is subjective, but yes, while it is possible that tics and associated disorders can make some situations more difficult, not everyone is the same. Tourette can be very different from person to person. Not only are the tics different from person to person, but one of the characteristics of Tourette is that tics change with time. Some people have very mild Tourette, so much so, that it can be barely noticeable. Others have very severe tics which can be disruptive to the person’s ability to do certain things (depending on what the tics are), embarrassing for the person or disruptive to those around the person with Tourette. Additionally, because tics are repetitive, sometimes people have tics that become painful. This being said, there are many people with Tourette who do lead very productive, successful and happy lives.
Is Tourette Syndrome a disability?
This is a complicated question due to a number of factors. Any condition can essentially be a disability if it is disabling to the individual who has it. The Americans with Disabilities Act (ADA) states: “Disability means with respect to an individual, a physical or mental impairment that substantially limits one or more of the major life activities of such individual; a record of such impairment or being regarded as having such impairment.”
Symptoms in Tic Disorders can range from mild to severe and in some cases, can be self-injurious, debilitating and markedly reduce the quality of life. Tourette is only named specifically in the Individuals with Disabilities Education Act (IDEA) which states: “…we do believe that Tourette syndrome is commonly misunderstood to be a behavioral or emotional condition, rather than a neurological condition. Therefore, including Tourette syndrome in the definition of other health impairment may help correct the misperception of Tourette syndrome as a behavioral or conduct disorder and prevent the misdiagnosis of their needs…”
Disability is determined by the criteria of the agency, company or organization that is defining it. The Social Security Administration’s definition is on several points and assesses individual functioning on various levels on a case by case basis before determining if the person meets the criteria to receive benefits.
Do students with Tourette Syndrome have special educational needs?
People with Tourette are just as intelligent as those in the general population, but many have special education needs. Tics, ADHD, learning disabilities, disruptive behavior, anxiety and mood disorders can all interfere with learning. Treatment to reduce these symptoms can help improve the educational results of people with Tourette. Those with specific learning problems can often be helped by the use of specialized educational techniques that fit the learning profile of the child. When school problems cannot be resolved, an educational evaluation may be needed. A student who is identified as “other health impaired” under federal law is entitled to an Individualized Education Plan (IEP) which addresses specific educational problems in school. An IEP can minimize the effects of learning difficulties that are keeping the student from performing up to his or her potential.
What kind of help does the Tourette Association offer?
We provide information about Tourette to anyone who is interested in learning more.
- Information and Referral Services are available to help answer questions about Tourette and find resources for people with Tourette and Tic Disorders.
- We publish newsletters and produce brochures and videos that discuss in detail many of the frequently asked questions.
- For individuals looking for referrals, the Association keeps state by state listings of physicians and therapists who have expressed an interest in working with people with Tourette and other disorders.
- We have an Education Advisory Board that might be able to help answer education related questions or offer suggestions.
- In an effort to increase the public and professional awareness and sensitivity to Tourette, we also organize programs for educators and medical professionals about Tourette as well as exhibits where we distribute our literature.
- We also have local Chapters and Support Groups in most states, to provide support locally to people with Tourette and their families.