February 2005

What is Tourette's Disorder?

Tourette's disorder (also known as Tourette's syndrome) is an inhertited neurological disorder characterized by tics. (A tic is a brief, recurrent, involuntary movement or vocalization that is of sudden onset and serves no apparent purpose). The symptoms of Tourette's disorder generally appear during childhood, and the symptoms frequently worsen during adolescence. The disorder is diagnosed three times more often in males than in females (NAMI). An estimated 100,000 Americans have full-blown Tourette's, and as many as 1 in 200 display partial expression of the disorder, such as chronic multiple tics or transient childhood tics (Pediatric Neurological Associates).

Diagnosing Tourette's Disorder

There is no brain test or laboratory test to determine if someone has Tourette's disorder. A professional must observe the patient closely and take a careful history of him or her. According to the Diagnostic and Statistical Manual of Mental Disorders (1994), Tourette's can be diagnosed in individuals who fit the following criteria:

•  Both multiple motor and one or more vocal tics have been present at some time during the illness, although not necessarily concurrently.

•  The tics occur many times a day (usually in bouts) nearly every day or intermittently throughout a period of more than 1 year, and during this period there was never a tic-free period of more than 3 consecutive months.

•  The disturbance causes marked distress or significant impairment in social, occupational, or other important areas of functioning.

•  The onset is before age 18 years.

•  The disturbance is not due to the direct physiological effects of a substance (e.g., stimulants) or a general medical condition (e.g., Huntington's disease or postviral encephalitis).

Symptoms of Tourette's Disorder

Symptoms of Tourette's disorder can be divided into three main categories: motor tics, vocal tics, and behavior problems. Motor tics can be characterized as either simple (i.e. fast, darting, and meaningless) or complex (i.e. slow, appearing to be purposeful). The first symptoms of Tourette's disorder are usually simple facial tics, such as eye blinking, grimacing, nose twitching, lip pouting. Other simple motor tics appear in time, and can include head jerking, neck stretching, foot stamping, or rapid jerking of any part of the body.

Complex motor tics can include hopping, clapping, touching people or things, arm thrusting, writhing movements, rolling eyes, making funny expressions, or making obscene gestures. Although rare, self-destructive behaviors such as hitting one's self, head banging, eye poking, and lip biting, may also occur. Complex motor tics often greatly impair a person's daily life, e.g., when a child must stab at a workbook with a pencil or must go over the same letter so many times that the paper is worn thin. (Bruun, Cohen, & Leckman, 1984).

Vocal tics can also be characterized as simple or complex. Simple vocal tics are meaningless sounds and noises such as coughing, barking, grunting, whistling, or hissing. Complex vocal tics are words and phrases that have real meanings. A common complex motor tic involves repeating a word or phrase one or more times. The words or phrases can sometimes be aggressive, socially unacceptable, or obscene. Both motor and vocal tics can be voluntarily suppressed for short periods and tend to disappear during sleep; however, they are often exacerbated by stress.

Many people with Tourette's disorder also have behavioral or developmental problems. These can include learning disabilities; sleep disorders; obsessive compulsive disorder (OCD), an intense need to perform certain acts repeatedly; and attention deficit-hyperactivity disorder (ADHD), difficulty concentrating and staying on task. Those youth who have a dual diagnosis of Tourette's and ADHD or ODD are often very disruptive, impulsive, and socially immature. Additionally, in adolescence and early adulthood, many patients with Tourette's experience shame, self-consciousness, sadness and extreme anxiety. They are often socially uncomfortable and/or socially isolated which can lead to major impairment in their academic and vocational functioning.

What Can Family/Caretakers Do?

1. Make certain that the youth has had a thorough physical to rule out any underlying physical cause for the tics e.g., Huntington's Disease, stroke post viral encephalitis, multiple sclerosis, head injury.
2. Become well informed about Tourette's by asking questions and reading about it.
3. Discuss the problem and possible solutions openly, honestly, and compassionately with the youth, other family members and school personnel.
4. With input from the youth and provider, discuss the most appropriate treatment plan for your family.
5. If possible get the youth a tape recorder or computer to use in the classroom.
6. Be patient with yourself and the youth.

What Can Mental Health Clinicians Do?

1. Ensure that the youth has a through assessment to determine whether there are multiple diagnostic issues e.g., ADHD; OCD;ODD; and /or LD.
2. Develop an integrated effective/evidence-based treatment plan with the youth and family that addresses the multiple issues the youth might have.
3. Explain the pros and cons of the use of medication especially the Antipsychotics (Neuroleptics) in the treatment of Tourette's disorder .
4. Explore the use of Cognitive Behavioral Therapy as an intervention if the youth has ADHD, OCD or ODD.
5. Help the youth and family work out a plan with school personnel to positively address academic and behavioral problems.

What Can School Personnel Do?

1. Obtain an assessment from an Occupational Therapist and use it to help plan the youth's academic environment.
2. Allow the youth to use a tape recorder and/ or computer in the classroom to record and /or complete assignments.
3. Give youth the option of oral or written tests.
4. Have realistic not lowered expectations for academic performance.
5. Develop an academic/ behavioral plan for the youth with input from the youth, family and mental health clinician
6. Become well informed about Tourette's by asking questions and reading about it.
7. With the youth, provide information to classmates about Tourette's disorder.
8. Have a no tolerance policy about harmful teasing and/or bullying.

 

References

American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington , DC : Author.

Bruun, R. D., Cohen, D. J., Leckman, J. F. (1984). Guide to the Diagnosis and Treatment of Tourette Syndrome . Retrieved February 17, 2005, from http://www.mentalhealth.com/book/p40-gtor.html

Pediatric Neurological Associates (n.d.) Retrieved February 17, 2005, from http://www.pediatricneurology.com/tics.htm

NAMI. (n.d.) Tourette's Syndrome . Retrieved February 17, 2005, from http://www.nami.org/Content/ContentGroups/Helpline1/Tourettes_Syndrome.htm

Useful Websites

National Tourette Syndrome Association, Inc.
This website provides support, research funding, and information for people with Tourette's. The site includes excellent information for parents, information for schools, and material geared towards kids. The National Tourette Syndrome Association also provides newsletters, mailing lists, and listings of physicians in the United States who treat Tourette's. http://www.tsa-usa.org/

Touretts-Disorder.com
This site aims to give hope and encouragement to those searching to understand Tourette's disorder. The site provides up-to-date resources for learning and teaching about Tourette's; raises awareness of Tourette's disorder to the public, patients, and professionals; discusses tough questions about the mental, physical, emotional and spiritual struggles of patients; and attempts to prevent some of the pain, hurt, and stigma associated with misunderstanding of the disorder. http://www.tourettes-disorder.com/

Tourette Syndrome “Plus”
This site was created by Leslie E. Packer, PhD, a NYS-licensed psychologist who specializes in Tourette's Syndrome. The site contains a wealth of information on Tourette's and its associated conditions for parents, teachers, and clinicians. http://www.tourettesyndrome.net/

Tourette's Syndrome—Now What?
This website was designed to help families better understand and interpret literature about Tourette's. The site includes stories from patients and families living with Tourette's, frequently asked questions, and information about summer camp programs for children with Tourette's. The site also contains general information about Tourette's disorder and advice for finding a physician or therapist who specializes in Tourette's. http://tourettenowwhat.tripod.com/

Local Support Groups

If you are in need of a local chapter referral in your area, please check the Tourette Syndrome Association TSA Chapter information from the Tourette Syndrome Association TSA website. www.tsa-usa.org