Data & Statistics on Tourette Syndrome

* The data on this page are from the study, “A National Profile of Tourette Syndrome, 2011-2012.” unless otherwise noted. [Read articleexternal icon]1 [Read article on findings for 2007-08 data]2

Did you know? 6 in 7 children with Tourette Syndrome have another mental, behavioral, or developmental disorder

How many children have Tourette Syndrome?

We do not know exactly how many people have Tourette Syndrome (TS).

  • Studies that included children with diagnosed and undiagnosed TS have estimated that 1 of every 162 children (0.6%) have TS.
  • A CDC study using parent report found that 1 of every 360 (0.3%) children 6 – 17 years of age in the US have received a diagnosis of TS; this is about 138,000 children.
  • This suggests that about half of children with TS are not diagnosed.
  • Among children diagnosed with TS,
    • 37% have been reported as having moderate or severe forms of the condition.
    • Boys are three to five times more likely to have TS than girls. People from all racial and ethnic groups can have TS. Non-Hispanic white children are twice as likely to have a TS diagnosis as Hispanic and non-Hispanic black children.
    • Children 12 – 17 years of age are twice as likely to have TS as children 6 – 11 years of age.
What parents say about Tourette and development

A recent survey of parents of children with Tourette syndrome found1

  • Parents typically first noticed tics in children at about 6 years of age on average (in early elementary school).
  • The average time from initially noticing tics to receiving a diagnosis of Tourette syndrome was about 2 years.
  • The average age when Tourette symptoms were most severe was 9 years of age.
  • Most parents reported their child’s tics were noticeable to strangers.
  • How much tics interfere with daily functioning was linked to how severe the symptoms were.
  • Almost 70% of parents reported that major changes, like starting a new school, moving into a new class, or being tired made their child’s tics worse.
  • About half of the parents reported that exercise or quiet hobbies made tics better.

Read moreexternal icon

How many children with TS have another disorder?

  • Among children diagnosed with TS, 86% also have been diagnosed with at least one additional mental, behavioral, or developmental disorder, such as:
    • 63% had ADHD.
    • 26% had behavioral problems, such as oppositional defiant disorder (ODD) or conduct disorder (CD).
    • 49% had anxiety problems.
    • 25% had depression.
    • 35% had autism spectrum disorder.
    • 47% had learning disabilities.
    • 29% had speech or language problems.
    • 30% had developmental delays.
    • 12% had intellectual disabilities.
  • More than one-third of people with TS also have obsessive-compulsive disorder.3,4
  • 42.6% have at least one co-occuring chronic health condition.

Life Course of TS

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

CDC is working to understand TS and to improve the health and wellbeing of people with TS. Learn about what public health can do to bridge the gaps in knowledge to help individuals with Tourette Syndrome.

References

  1. Wolicki SB, Bitsko RH, Danielson ML, Holbrook JR, Zablotsky B, Walkup JT, Wood, DW, Mink JW. Children with Tourette Syndrome in the United States: Parent-reported diagnosis, co-occurring disorders, severity, and influence of activities on tics. Journal of Developmental and Behavioral Pediatrics. Published online before print July 10, 2019external icon.
  2. Centers for Disease Control and Prevention. Prevalence of diagnosed Tourette Syndrome in persons aged 6-17 years – United States, 2007. MMWRpdf icon 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.