According to the CDC’s estimates, while approximately 1 in 50 school-aged children experience Tourette Syndrome or another Persistent Tic Disorder, only 50% of these children have received a diagnosis. Given that we know Tourette Syndrome (TS) is a life-long condition and that 83% of individuals living with TS and other tic disorders also experience co-occurring conditions such as OCD, ADHD, behavioral and/or anxiety issues, there is a high likelihood that many individuals in your area need of complex care that you and your colleagues can provide. As you know, their care journey must start with a diagnosis.
In the Fall 2023 Porter Novelli DocStyles survey, only 52% of healthcare providers, including pediatricians, were able to correctly identify the diagnostic criteria for Tourette Syndrome:
- Tourette Syndrome (TS), also known as Tourette’s Disorder: 1) At least 2 motor tics and at least 1 vocal (phonic) tic have been present, not necessarily at the same time. 2) Tics may wax and wane in frequency but have occurred for more than 1 year. 3) Tics started to appear before the age of 18. 4) Tics are not caused by the use of a substance or other medical condition.
- Persistent (Chronic) Motor or Vocal Tic Disorder: Either motor tics OR vocal tics have been present for more than 1 year; cannot be both motor and vocal tics.
- Provisional Tic Disorder: Motor and/or vocal tics have been present for less than 1 year, and have not met the criteria for TS, persistent (chronic) motor, or vocal tic disorder.
Learn More
Please explore the information below about Tourette Syndrome and Tic Disorders to learn how you can further support your patients. Below and across our site, you’ll find many free resources filled with the most up-to-date information on treatment options and more to share with your patients.
We also invite you to learn about our Medical Advisory Board, our Scientific Advisory Board, and our Centers of Excellence to find and learn about the many leading physicians and researchers who support our community.
Finally, if you’d like more information about these conditions or would like to get in touch with our Medical and Scientific team, please send us an email at [email protected].
What is Tourette Syndrome (TS)?
Tourette Syndrome (TS) is a neurodevelopmental disorder that becomes evident in early childhood or adolescence.
It is part of the spectrum of Tic Disorders and is characterized by motor and vocal tics. The current estimates are that 1 out of every 50 children has TS or another persistent Tic Disorder.
Treatment
Each person with Tourette Syndrome is an individual and will require an individualized treatment plan. It is important to note that not everyone with Tourette will need medical treatment and medical treatment needs can vary over time. While there is no cure for Tourette Syndrome, there are a number of treatments, including non-medicine behavioral treatments as well as medications, that can be effective at reducing tics or helping to manage co-occurring conditions. Of course, when making any treatment decisions, it is important that patients consult with a licensed medical provider. While the TAA cannot make medical recommendations, we provide general information.
Comprehensive Behavioral Intervention for Tics (CBIT)
The American Academy of Neurology’s first ever Treatment Guidelines for Tourette Syndrome and Tic Disorders listed CBIT as the recommended first line of treatment for Tourette Syndrome. CBIT is a non-medicated treatment consisting of three important components:
- Training the patient to be more aware of his or her tics and the urge to tic.
- Training patients to do competing behavior when they feel the urge to tic.
- Making changes to day to day activities in ways that can be helpful in reducing tics.
Many of these strategies are already commonly used in the management of TS symptoms. Many adults with TS report that they have come up with strategies similar to CBIT to manage their tics. CBIT takes the most effective concepts and blends them with strategies that aid people in learning the techniques quickly.
Learn more about CBIT.
Two Options for CBIT Training for Practitioners
The Tourette Association of America offers two options for practitioners to explore CBIT: No-Cost CBIT Overview Workshops.
Co-occurring Conditions
TS commonly has a number of other neurodevelopmental and neuropsychiatric conditions, including OCD, ADHD, behavioral issues, and anxiety, which may present before and cause more impairment than the tics themselves. These are referred to as co-occurring conditions.
CEU Webinars for Medical Providers & Allied Health Professionals
In collaboration with the CDC, the TAA is offering CEU credits via live & recorded webinars for those who are involved in the care of individuals living with Tourette Syndrome and for those who are interested in learning more about TS treatment and management. We invite physicians, nurses, nurse practitioners, occupational therapists, and psychologists regardless of Tourette Syndrome experience, to participate in these educational programs.
Additional Resources
Deep Brain Stimulation
Deep Brain Stimulation (DBS) is a potential treatment for certain Tourette Syndrome (TS) patients with severe motor or vocal tics affecting their quality of life, despite other treatments. While there’s significant media interest in DBS for TS, it raises many questions. We aim to address these and provide an update on its current state.
Toolkits
Managing TS: A Guide to Treatment for Care Providers
Living with TS: A Guide for Patients and Families
What is TS?
What is CBIT?
I have TS Card
Centers of Excellence
The Tourette Association of America’s Centers of Excellence (CofE) program recognizes medical institutions that offer the highest level of care, are undertaking groundbreaking research, are leaders in training and education and provide exceptional community outreach and advocacy for Tourette syndrome and other Tic Disorders. For more information or to become a CofE please visit:
Clinical Trials
The TAA supports clinical research and clinical studies to improve the quality of life for those affected by Tourette Syndrome. The studies below are listed for informational purposes only. Visit www.clinicaltrials.gov for a more comprehensive list of opportunities to participate in research studies in your area.
