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Last Update 10/08/07

Tourette Syndrome—Now What? 
Raising awareness about the full spectrum of Tourette's disorder, with support and accurate information based on the latest research.
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Tourette's Syndrome Message Board and Blog!
(An online Tourette syndrome support group where you can meet adults, families and people with Tourette's Syndrome, keep up with the latest research, learn how to cope with Tourette's, and post your questions about Tourette's.)

Click on the links below for recent updates, latest research on Tourette's, and current Tourette's information
  Recent Tourette's Research Findings & Announcements
  Tourette Syndrome Books, Videos, DVDs
  Tourette's Hall of Fame/Shame
  Tourette FAQ and Quotable Quotes
  Tourette's stories in the Media and on the Internet
  Explaining Tourette's to children or talking about Tourette syndrome in the classroom



If you’re new to Tourette Syndrome, you’ve probably already discovered that the abundance of information available can be overwhelming; some of it fits and some of it doesn’t; and you may not even be aware that some of what you read is speculation, outdated, loaded with ascertainment bias, or just someone’s opinion, not backed up by research.  There are older books ostensibly about Tourette's syndrome with information that is significantly out of date or containing information disproven by more recent research.

Many websites list dozens of Tourette's syndrome books.  Where to start?  You’re not yet aware of any of the controversial areas surrounding Tourette syndrome research, so you may believe all that you read.  This is unfortunate, since the huge majority of everything in print is dedicated to the most severe expressions of Tourette's or may be based upon clinical populations that do not reflect your situation.  Yes, that even applies to books well-documented with medical journal references.  In the 1980s, some Tourette's research was heavily influenced by biased samples of the most severe cases of Tourette's.  Today, there is greater recognition of the FULL spectrum of Tourette syndrome, as the less severe cases are increasingly more likely to be detected and diagnosed.  Also, current research samples are more likely to segregate study populations by TS only, TS/OCD, TS/ADHD, etcetera, yielding more useful information depending upon diagnosis and more accurately sorting out the effects of comorbid diagnoses.

I hope the following tips will be helpful as you read the available Tourette syndrome books and literature:

• Slow down!  Read a bit, and then ASK QUESTIONS.  Others can steer you towards the appropriate reading for your situation and warn you about controversial topics or outdated info once you’ve got the basics.  Others can tell you the "Yes, but ..." that the literature may not spell out.

• Some of what you read will be out of date, less than accurate, generalized to the worst-case scenario, or will not apply to you or your child, so don’t let it confuse and overwhelm you.  ALWAYS check the publication date of anything you read!

• Be WARY OF ANYTHING PUBLISHED BEFORE about 1997 or 98.  While there are some very good older books, there will be areas where they are not likely to reflect current thinking or research about Tourette's.  Much of the earlier work was affected by ascertainment bias, in the era when only the most severe Tourette's, or Tourette Syndrome complicated by comorbid diagnoses and psychosocial or environmental factors, was likely to be diagnosed.  The association of a broad number of issues with Tourette's was certainly a setback and is not widely accepted or backed up by current research.  Nonetheless, the idea that Tourette Syndrome is a broad spectrum, encompassing other disorders, global dysinhibition, and many psychopathologies, is often seen in some Tourette Syndrome support groups and in some literature.  Unfortunately, even some relatively new literature associates things like global dysinhibition and "rage" with Tourette's, without scientific backing.  Newcomers might want to avoid this literature until they are well versed in current research about Tourette Syndrome.   You're better off relying on literature published in peer-reviewed medical journals.

Tourette's Syndrome : Tics, Obsessions, Compulsions : Developmental Psychopathology and Clinical Care, by James F. Leckman, Donald J. Cohen, John Wiley & Sons; November 1998.  A textbook well worth the cost for those familiar with Tourette Syndrome basics and ready for a comprehensive, up-to-date review of the medical research on Tourette's, written with a respectful, optimistic, uplifting and carefully scientific perspective.  With its thorough analysis of older and current research, this book shows how some of the older research went astray.  The authors showed foresight and wisdom in avoiding topics that have come to be associated with Tourette's in spite of research to the contrary. The contributors are Tourette Syndrome physicians and researchers affiliated with the TS/OCD clinic at Yale University, and this optimistic, respectful view of persons with Tourette Syndrome is a joy to behold!

Passing for Normal: A Memoir of Compulsion, by Amy Wilensky, Broadway Books, June 1999.  An autobiographical account of growing up with moderately severe undiagnosed OCD and Tourette's syndrome.  Ms. Wilensky provides a rarely-encountered autobiographical look at OCD/TS that does not use the conditions as excuses.  She provides a frank, honest appraisal and vivid descriptions of her OCD/TS.   She doesn't veer off into the territory of attributing issues in her life only marginally related to Tourette Syndrome as being due to her TS/OCD, as some other autobiographical accounts do.

Front of the Class, How Tourette Syndrome Made Me the Teacher I Never Had, by Brad Cohen, 2005.  An uplifting autobiographical account of growing up with severe Tourette's syndrome.  "As a child with Tourette’s, Brad Cohen was ridiculed, beaten, mocked, and shunned. Other children, teachers, and even sometimes family members found it difficult to be around him. His mother’s encouragement and his brother’s support were key elements that kept him going. College and then job hunting brought new challenges, but he continued to strive toward his goal to be a teacher and was rewarded when he was named Georgia’s First Class Teacher of the Year. "   Brad tells his story and lives his life without excuses and with optimism.

"Freeing Your Child from Obsessive-Compulsive Disorder: A Powerful, Practical Program for Parents of Children and Adolescents", Tamar E. Chansky, Ph.D. This book is a must-read even if your child does not have a diagnosis of OCD, giving helpful, practical parenting tips that apply to children with OCD and Tourette's.   You may also want to obtain, "How I Ran OCD Off my Land," a pamphlet for children, from the Obsessive-Compulsive Foundation (see Other Tourette's Links).  

On Playing a Poor Hand Well: Insights from the Lives of Those Who Have Overcome Childhood Risks and Adversities, by Mark Katz, W W Norton & Company; February 1997. An uplifting book about childhood resiliency written by an ADHD professional, but touching briefly upon Tourette Syndrome: a book full of strategies and research offering hope and optimism for children with neurological differences.

See also:  Books, Videos and Print Resources

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(Just a note:  this website was designed for newcomers to Tourette's syndrome, to be read through in page order. 
You can browse the pages in the order you desire, but if you're new to Tourette syndrome,
you may get a better overview by reading through the pages in order, by clicking on the Next Page links throughout.)

  Strengths and advantages associated with Tourette's syndrome
Medical literature supports the common lore that children with Tourette syndrome have uncommon gifts.

Growing up with Tourette's Syndrome:  Information for Kids
A new website about Tourette syndrome, with information targeted to ages 5–8, ages 9–13, and a section for parents.

HBO Documentary on Tourette's Syndrome   
I Have Tourette's but Tourette's Doesn't Have Me
Video clips of Tourette's syndrome HBO Documentary

First Five Things to Do After Your Child Is Diagnosed with Tourette Syndrome
I may not agree with all of them, but # 1 is interesting.

 Tourette Syndrome Research Article Summary

  Controversy, myth, and inaccurate information about Tourette syndrome
 Dr. Phil on Tourette's syndrome and Asperger's syndrome:  "Extreme Disorders" and brain imaging 
  Dr. Laura Schlessinger on Tourette's  
David Comings, M.D. - Hope Press - The Gene Bomb

Inaccurate definition of Tourette's Syndrome by Joseph Jankovic, M.D. in the New England Journal of Medicine
Deep Brain Stimulation, Tourette's Syndrome, and "Miracle Workers"
Disclaimer - Just a Mom !
I am not a medical person and am not qualified to give medical advice.
Please discuss your treatment with your personal physician.
PLEASE NOTE:  I am NOT affiliated with another Tourette's website which uses the tourettenowwhat name!
(Imitation is the sincerest form of flattery?  Or another webmaster trick to derive traffic from my name?)

A word about spelling

The official name of the condition, according to the DSM-IV-TR, 307.23, is Tourette's disorder. 
Tourette's is also referred to as TS, Tourette Syndrome, Tourette's syndrome, GTS, and Gilles de la Tourette's Syndrome.
Common misspellings are tourettes syndrome, tourretts, tourrettes, touretts, terrets, terets, turettes, turetts, turets, turetes and turrets syndrom.
Tourette's disease is a common misnomer (it's not a disease).
Tick is a common misspelling:  ticks are nasty critters that suck blood from dogs and people.  People with Tourette's disorder have tics.

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Tourette's Syndrome Research articles   |   Other Tourette Syndrome Links    |   International Links - Síndrome de Tourette en español – castellano
Dr. Laura on Tourette's Syndrome    |   David E. Comings, Tourette's and Hope Press     |    NEJM - Jankovic article on Tourette's Syndrome

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If you're looking for the Tourettes Syndrome Guy video or Tourettes Guy video clips:
they're not here, but please stay and browse for some accurate information about Tourette's syndrome.

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No part of this publication may be copied, re-printed, or used in any form without my prior consent.