Tourette Syndrome

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Alert! Alert! 
Because NICHCY’s website will only remain online until September 30, 2014, most of its rich content has moved to a new home, the Center for Parent Information and Resources (CPIR), where it can be kept up to date. 

The new address of the fact sheet on Tourette Syndrome at the CPIR is:
http://www.parentcenterhub.org/repository/ohi-tourette/

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August 2009

The Individuals with Disabilities Education Act (IDEA), our nation’s special education law, defines 14 categories of disability under which a child may be found eligible for special education and related services. One of those categories is “Other Health Impairment,” or OHI, for short. Within OHI’s definition, numerous disabilities and medical conditions are explicitly named. Tourette syndrome is one such.

This short resource page accompanies NICHCY’s fact sheet on Other Health Impairment and provides a brief overview of Tourette syndrome and connections to sources of additional information.

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A Brief Look at Tourette Syndrome

Tourette syndrome is a neurobiological disorder characterized by tics (involuntary, rapid, sudden movements) and/or vocal outbursts that occur repeatedly. It’s an inherited, neurological disorder that is first noticed in childhood, usually between the ages of 7 and 10. The syndrome is four times as likely to occur in boys as in girls.

Tourette sydrome was once strongly associated with the exclamation of obscene words or socially inappropriate remarks. In fact, only a small minority of people with Tourette’s have this symptom. For most, Tourette’s involves:

  • tics, along a range of simple (e.g., rapid eye-blinking, facial grimacing, shoulder-shrugging) to complex (involving several muscle groups, such as hopping, bending, or twisting); and
  • vocalizations, also along a range of simple (throat-clearing, sniffing, grunting) to complex (involving words or phrases).

It’s estimated that 2% of the population has Tourette syndrome. This may be a conservative estimate, since many people with very mild tics may be unaware of them and never seek medical attention. A study by Kurlan, McDermott, et al. (2001) indicates that over 19% of children in regular education classes have tics and over 23% of children in special education classes have tics.

What about treatment? According to the National Institute of Neurological Disorders and Stroke’s fact sheet on the syndrome (listed below, under resources):

Because tic symptoms do not often cause impairment, the majority of people with TS require no medication for tic suppression. However, effective medications are available for those whose symptoms interfere with functioning.

Are children with Tourette syndrome automatically eligible for special education and related services? The plain answer is: No. Eligibility will depend on several factors and a careful study of the evaluation results. As IDEA makes clear in its definition of “other health impairment,” having the syndrome is not the only condition to be met for eligibility. (For one, the child’s educational performance must be adversely affected as a result of the syndrome.)

Interestingly, Tourette syndrome was explicitly added to this disability category in the 2004 Amendments to IDEA.  According to the U.S. Department of Education, the syndrome was specifically named in the definition of “other health impairment” because:

…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. (71 Fed. Reg. at 46550)

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Resources of More Information on Tourette Syndrome

National Tourette Syndrome Association
http://tsa-usa.org/

Tourette Syndrome “Plus”
http://www.tourettesyndrome.net/

Tourette Syndrome Fact Sheet
from the National Institute of Neurological Disorders and Stroke
http://www.ninds.nih.gov/disorders/tourette/detail_tourette.htm

Información en español.
http://tsa-usa.org/aTSA_Espanol/bienvenidos.html

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NOTICE: NICHCY is going away, but its resources are not. Find hundreds of legacy NICHCY publications, as well as our training curriculum on IDEA 2004, in the Center for Parent Information and Resources' Library at http://www.parentcenterhub.org/resources. This website will remain available until September 30, 2014. After that date, web visitors will be automatically redirected to http://www.parentcenterhub.org.