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Understanding Tourette Syndrome

Group of smiling children outside around a tree

The more people know, the better equipped they are to improve the lives of everyone living with Tourette.

People living with Tourette syndrome (TS) often face challenges, such as co-occurring conditions including attention-deficit/hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), discrimination, exhaustion, bullying, and uncertainty. Despite these challenges, many people with Tourette are high achievers, resilient, and lead rich and fulfilling lives. An accurate diagnosis, treatment, and support for individuals and their families are the key to this success.

There are many ideas and misconceptions about Tourette syndrome (TS)—what it is, how it affects individuals who have it, and what it means to everyone around them. This is why CDC works to understand TS and its effect on individuals, families, and the community. Here’s what we have learned so far.

  • About 140,000 children aged 6 to 17 years in the United States have ever been diagnosed with TS.1 Because only about half of children with Tourette are diagnosed, the actual number may be twice as high — 300,000 — and even more have another tic disorder.
  • TS affects children’s physical, mental, and emotional well-being and can negatively impact their health, education, employment, family, and friendships.
  • People with TS have many healthcare needs including healthcare visits, special educational services, medication, and psychological and behavioral counseling.
Logo for Tourette Syndrome Awareness Month

It is Tourette Syndrome Awareness Month!

CDC’s Work to Understand Tourette Syndrome

TS is a public health concern and CDC is working to learn more about TS and to help improve the health and well-being of people with Tourette. CDC’s research and partnerships focus on identification, education and outreach, treatment, and support of people living with Tourette.

Identifying and Screening for Tourette Syndrome

TS is difficult to diagnose and it can be difficult to find healthcare professionals knowledgeable about the condition. Better screening is important, considering the number of people with TS who also show signs of other co-occurring conditions such as depression, ADHD, OCD, and autism spectrum disorder.

CDC is working to improve screening and identification tools by evaluating

  • The Motor or Vocal Inventory of Tics, which collects parent, child, and teacher reports of tics. CDC is working to learn whether this tool is useful to pediatricians to improve identification of tics and tic disorders.
  • The Detection of Tic Symptoms (DoTS), which can help identify tic disorders within research and clinical settings. Parents or children complete the short DoTS form to report the presence, characteristics, and duration of movements, sounds, tics, and habits.
  • The Diagnostic Interview Schedule for Children (DISC), a standardized interview, which is being revised to improve the diagnosis of tic disorders.

Understanding the Effects of Tourette Syndrome

CDC uses data to better understand when tic symptoms start, and how they are diagnosed, treated, and affects those with TS. Data from the National Survey of Children’s Health (NSCH) were recently published in the Journal of Developmental and Behavioral Pediatrics describing how TS and other conditions affect how children perform in school. The study found that having other conditions along with TS was related to having difficulty in school and needing special educational services.

Working with the Community to Improve Outreach, Treatment, and Support for Tourette Syndrome

Strong partnerships are a critical part of CDC’s work, which is why CDC’s works with the Tourette Association of America to

  • Increase access to CBIT (Comprehensive Behavioral Intervention for Tics), an evidence-based behavioral therapy for TS that works to reduce tics. The Tourette Health and Education Outreach program sponsors workshops to train healthcare professionals to offer CBIT.
  • Provide education and outreach efforts. This includes evidence-based information and education programs for individuals, families, and health and education professionals.
  • Offer resources to help individuals and families living with Tourette including school resources, coping with bullying, and finding medical providers.
  • Improve acceptance and reduce stigma through the Tourette Association Youth Ambassador Program. This program gives teens an opportunity to learn how to advocate for and talk about Tourette and tic disorders with their peers and in their community.

Understanding TS helps reduce stigma and improve access to care, to make sure that diagnosis is timely, and ultimately helps children with Tourette to lead more healthy and productive lives.

It is Tourette Syndrome Awareness Month!

Emma Moburg

Emma Moburg shares her story about how the TAA Youth Ambassador Program is making a difference for her and others living with Tourette Syndrome.

I have Tourette syndrome and have lived with the diagnosis of TS for 5 years. I’ve had tics my whole life, but at 10 years old, I was finally given an answer to what I had. All the noises I made and all those uncontrollable movements, were given a name. Tourette syndrome.

One thing I have always had trouble with is telling my peers about my Tourette–even some of my closest friends. I was scared about the outcome, so I always kept the name hidden. As I’ve gotten older, the tics haven’t gone away, but I deal with them the best I can. I have HOPE. I realize that despite the challenges ahead of me, I can do this. I had 2 choices when I was diagnosed: I could play the victim or I could make the decision to live boldly with the challenges that I faced.

Five years ago, I was a scared victim of Tourette syndrome. Just one year ago, I was able to speak on Capitol Hill in Washington DC about TS. I did not let Tourette win! One thing that Tourette has done for me is given me the determination to succeed and to help others, especially my brother, Charlie, who was diagnosed with Tourette two years ago.

Since my trip to Washington DC, I have had the opportunity to talk to healthcare providers, human resources professionals, medical students, and most important, kids. Meeting the children and families with Tourette in DC was an eye opener, and I decided that I wanted to make a difference in the way people looked at me and others affected by this disease. The tools I was given in the Youth Ambassador Program gives me the strength to stand up and tell my story. It has been amazing seeing the way just telling my story effects people and they seem to want to understand better what makes me “Tic”. I’ve learned that Tourette will never be as strong as my will. I have chosen to deal with it, learn from it, and grow from it. Why me? Because I can.


References

  1. Based on survey data from the 2011-12 National Survey of Children’s Health.
  • Claussen AH, Bitsko RH, Holbrook JR, Bloomfield J, Giordano K. (2018). Impact of Tourette syndrome on school measures in a nationally representative sample. Journal of Developmental & Behavioral Pediatrics 39(4), 335–342.
  • Tourette Association of America (2016) Stories that inspire. Retrieved from Stories That Inspire 05.21.2018
  • Bitsko, RH, Holbrook, JR, Visser, SN, Mink, JW, Zinner, SH, Ghandour, RM, Blumberg, SJ (2014). A National Profile of Tourette Syndrome, 2011-2012. J Dev Behav Pediatr 35(5), 317-322.
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