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Data & Statistics

* The data on this page are from the study, “A National Profile of Tourette Syndrome, 2011-2012.” unless otherwise noted. [Read article]  [Read article on findings for 2007-08 data]2

A CDC study has found that 3 of every 1000 children 6 through 17 years of age have been diagnosed with Tourette syndrome.In the United States

  • It is not known exactly how many people have Tourette Syndrome (TS). A Centers for Disease Control and Prevention (CDC) study has found that 1 of every 360 children 6 through 17 years of age and living in the United States have been diagnosed with TS based on parent report; this represents about 138,000 children. Other studies using different methods have estimated the rate of TS at 1 per 162 children.

  • Among children with TS, 37% have been reported as having moderate or severe forms of the condition.

  • TS affects people of all racial and ethnic groups.

  • Boys are affected three to five times more often than girls.

  • A TS diagnosis is twice as likely among non-Hispanic White people than among Hispanic and non-Hispanic Black people.

  • A diagnosis of TS is twice as common among children 12 through 17 years of age as among those 6 through 11 years of age.

Co-Occurring Conditions

  • Among children diagnosed with TS, 86% also have been diagnosed with at least one additional mental health, behavioral, or developmental condition, such as:
    • Attention-deficit/hyperactivity disorder (ADHD), 63%;
    • Behavioral or conduct problems, 26%;
    • Anxiety problems, 49%;
    • Depression, 25%; 
    • Autism spectrum disorder, 35%;
    • Learning disability, 47%;
    • Speech or language problem, 29%
    • Intellectual disability, 12%, and
    • Developmental delay affecting his or her ability to learn, 28%.

  • More than one-third of people with TS also have obsessive-compulsive disorder.3,4

Prevalence of co-occurring conditions and disorders among children with TS
Data on 65,540 US children aged 6-17 years from the 2011-2012 National Survey of Children's Health

 Prevalence of co-occuring conditions and disorders among children with TS

Life Course

In most cases, tics decrease during adolescence and early adulthood, and sometimes disappear entirely; however, many experience tics into adulthood and, in some cases, tics can become worse in adulthood.4, 5

  • One study that followed youth with TS over time found that at 18 years of age, almost half (47%) of the youth had been tic-free the week before they were interviewed, just over 10% had minimal tics, over a quarter (28%) had mild symptoms, and 11% had moderate to severe tics.2,3

Public Health Impact of TS

Presentations from the 5th International Scientific Symposium on Tourette Syndrome about the public health impact of TS are available online. These presentations include results from the 2009 CDC study on the prevalence of TS1, the prevalence and health service use of individuals with TS, the disability associated with tics in community samples, and priorities as judged by people with TS.

Video excerpts from these presentations »

References

  1. 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.
  2. Centers for Disease Control and Prevention. Prevalence of diagnosed Tourette Syndrome in persons aged 6-17 years - United States, 2007. MMWR Morb Mortal Wkly Rep. 2009; 58(21): 581-5.
  3. Leckman, JF, Zhang, H, Vitale, A, Lahnin, F, Lynch, K, Bondi, C, et al. Course of tic severity in Tourette Syndrome: the first two decades. Pediatrics. 1998; 102(1 Pt 1): 14-19.
  4. Eapen, V, Crncec, R. Tourette Syndrome in children and adolescents: special considerations. J Psychosom Res. 2009. 67(6): 525-32.
  5. American Psychiatric Association. Diagnostic and statistical manual of mental disorders: Fifth edition, DSM-5, Washington, DC; 2013.

 

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