A Quick Tour of Tourette’s

1. A Quick Tour of Tourette’s By Lisa Coon, Ann Jo Cosgrove, Melanie Dunn, and Edward Golden

2. What is Tourrette’s Syndrome? • A video • http://www.tsa-usa.org/

3. Both multiple motor and one or more vocal tics have been present at some time during the illness, although not necessarily concurrently. (A tic is a sudden, rapid, recurrent, nonrhythmic, stereotyped motor movement or vocalization.) 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. C. The disturbance causes marked distress or significant impairment in social, occupational, or other important areas of functioning. D. The onset is before age 18 years. E. 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). DSM-IV Diagnostic Criteria

4. Why does it occur? • Tourette’s Syndrome is a neurological disorder • Therefore, little is known about it’s cause • One theory is that persons with Tourette’s Syndrome (TS) have basil ganglia that are not fully functioning. The basil ganglia relay information to and from the cerebral cortex. It is thought that this area of the brain is responsible for regulating chunks of behavior. • TS can be passed from parent to child.

5. Thought to be “nervous habits,” allergies, or unexplained colds. • Tic may disappear and then reappear in a different fashion. • May emerge and worsen (“waxing”) and then decrease (“waning”). • Can take years to properly diagnose due to constant changes. • Uncomplicated TS is not generally in need of special education. It can be accompanied by other conditions such as ADHD.

6. Comorbidity • Obsessive Compulsive Disorder • Attention Deficit- Hyperactivity Disorder • Elevated depression; anxiety disorders; social and emotional difficulties • When faced with Comorbidity, the clinician must decide whether, for example, if lining up the finger with the corner of the wall is a tic or a compulsion.

7. School Aspects Academics in school • Average IQ is normal • Students with TS do not have clearly delineated learning disorders • Forty percent of children and adolescents who have TS also have attention problems and 30 percent have academic difficulties. • Problem areas • attention • organizing • handwriting skills • behavioral

8. Specific Educational Problems in School • Educational Evaluation • Development of an IEP: Individualized Educational Plan • Category of Other Health Impaired • Additional educational support (one-to-one aide)

9. One-to-one paraprofessional (aide, teacher assistant) • support students and their educational, social and emotional growth • to learn the specific skills that will allow him to become more independent.   • organizational techniques; self-advocacy skills, methods of reducing anxiety, etc. (Giordano, 2002) 

10. Research Studies • National Institute of Neurological Disorders and Stroke (NINDS) • Genetics • Neurotransmitter studies • Environmental studies • Alternative therapies and nutritional aspects (Health News Flash, 2002)

11. In general may have: Motor and Vocal Tics that range from simple to complex Handwriting problems Learning disabilities Medication side effects and fatigue Lethargy, lack of interest, decrease in coordination Behavioral Aspects Actual and perceived isolation from peers Obsessive/compulsive disorder Attention difficulties Stress increases symptoms Different areas of difficulty

12. What to Look For: • 1 in every 5 children will have a tic at one point. • Child may not be aware of the tic. • First tics are simple motor tics of the head, face, neck, shoulders, or simple phonic tics. (Ex: eye blinking- upon examination- no glasses needed). • Take notes and report if behavior may be interfering with learning.

13. Tips for Teachers • Recognize the student’s strengths • Model acceptance by not looking distracted or disturbed. Don’t comment on them publicly. This may cause tics to escalate. • Provide peer education (Ex: class meetings) to reduce chance of being teased or rejected by peers

14. Tips for Teachers • Speak with parents, previous teachers, the students and professionals about what types of accommodations have previously worked and not worked • Be alert to tic interference during reading, writing, and math work. • Don’t punish, they are uncontrollable. (Packer, L. 2003)

15. Placement in the classroom • Where student is most comfortable • Least stressful place • With a “buffer zone” for large motor tics • Allow for safe movement around the room • Provide a rest area • Eliminate unnecessary distracting items on desk

16. Placement in the classroom cont… • Frequent breaks for problems with fatigue and attention • Schedule academics in regards to possible medication side affects • Snacks may be helpful • Permanent pass/signal for student to leave the room. Avoid asking student to leave. (Wilson, Shrimpton, 2003)

17. Presentation of material • Assistance with directions, written and verbally • Multi-sensory, hands on approach • Books on tape or have another person read the material • Some students may benefit from reading aloud • Use a ruler for keeping place in a book • Chunk material

18. Producing material • Provide extended time • Take tests in a separate location • Word processor, spell checker, or scribe • Tape record oral presentations • Voice dictation software • Use of calculator • Use grid paper for math problems (Bergeson, Kelly, Riggers, Maire 1999)

19. Behavior Issues • Increase self esteem • Small group instruction • Reduce stressful situations • Encourage involvement in enjoyable activities (sports, music) • Teach coping skills • Be sensitive/aware of uncomfortable situations. (Ex: library, assemblies -have them sit close to exit) • Provide adult supervision in less structured part of day if teasing is present.

20. Behavior Issues cont… • Behavior management plan with reasonable expectations • Consequences for inappropriate behavior, not tics • Organizational problems • use a homework planner • ensure clear home/school communication

21. TS & The Law • a recent study found that TS was implicated in more than 150 legal cases tried in state and federal courts between 1985 and 2003 • the study concluded that TS rarely leads to criminal behavior, but patients with TS are at risk of being involved in the legal system

22. TS & The Law • TS patients frequently exhibit increased symptoms in high stress situations and consequently exacerbate legal or administrative responses to their behavior • TS patients may blurt out inappropriate “confessions” and behave in a negative way toward administrators and legal authorities

23. TS & The Law • TS patients are frequently responding to internal OCD symptoms rather than authorities in these high stress disciplinary encounters • A database of 3,500 TS patients showed that 15% had troublesome conduct and oppositional defiant disorder

24. TS & The Law • TS patients were significantly more likely to vandalize, fight, abuse drugs or alcohol and steal • Certain behaviors, such as starting fires, shouting and physically attacking correlated with patients that were also ADD

25. TS & The Law • TS patients with coexistent ADHD are at increased risk of socially unacceptable and potentially criminal behavior • Most criminal cases are resolved before or at the trial level, and therefore do not get “reported” in the case law. The 150 cases are the “tip” of the iceberg.

26. TS & the Law - Conclusions • Response to students with TS should be made by qualified personnel with designated authority to make such responses. • Sec. 504, ADA, and IDEA guidelines apply to TS students as with any other special education students (Jankovic, J., Kwak, C., PA-C, Frankoff, J.D. 2006).

27. Teachers • Watch for symptoms • Don’t make excuses • Get help!

28. Teacher Resources • Great Websites: www.lifesatwitch.com & www.tourettesyndrome.net Cited References: Bergeson, T, Kelly, T., Riggers, M., Maire, J. Tic Disorders and Tourette Syndrome School Care Plan, Office of Superintendent of Public Instruction Education Support. Washington State January 1999 Bruun, R., Cohen, D., & Leckman, J. (2002) Guide to the Diagnosis and Treatment of Tourette Syndrome: TOurette Syndrome and Other Disorders.( retrieval July 14, 2006) http://www.tsa-usa.org/resarch/guidetodiagnosis.html Giordano, K.J. Advocating for an Aide. (2002)Tourette Syndrome Education Advocacy (retrieval July 23, 2006 http://www.tsusa.org/educ_advoc/advocating%20for%20an%20aide.htm Jankovic, J., Kwak, C., PA-C, Frankoff, J.D. (2006). Tourette’s Syndrome and the law. Journal of Neuropsychiatry. 18(1). Health NewsFlash Your Personal Research Assistant (2002) Tourette Syndrome Information – Fact Book (retrieval July 23, 2006) http://www.healthnewsflash.conditions/tourette.syndrome/php#education Long, P. (2005) Tourrette Disorder: American Definition.  (retrieval July 14, 2006) http://mentalhealth.com/dis1/p21-ch)$.html Packer, L. (2003). Tips on dealing with tics in the classroom. Retrieved July 8, 2006, http://www.schoolbehavior.com/Files/tips_tourette.pdf Wilson, J.2003, Shrimpton, B., Increasing the Effectiveness of Education for Students with Tourette Syndrome, Melbourne University (retrieval July 23, 2006) http://www.tourettesyndrome.net/Files/Wilson2003.pdf