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TOURETTE'S SYNDROME BOOKS
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some of it fits and some of it doesn’t; and you may not even be aware that some of what you read is speculation, outdated, loaded with ascertainment bias, or just someone’s opinion, not backed up by research. There are older books ostensibly about Tourette's syndrome with information that is significantly out of date or containing information disproven by more recent research.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 Others can steer you towards the appropriate reading for your situation and warn you about controversial topics or outdated info once you’ve got the basics.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• Some of what you read will be out of date, less than accurate, generalized to the worst-case scenario, or will not apply to you or your child, so don’t let it confuse and overwhelm you.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).See also: Books, Videos and Print Resources
(Just a note: this website was
designed for newcomers to Tourette's syndrome, to be read through in page order.
Growing up with Tourette's
Syndrome: Information for Kids
HBO Documentary on Tourette's Syndrome Tourette
Syndrome Research Article Summary
Tourette's Syndrome - Now What?
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