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REMEMBER
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| 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 |
TOURETTE'S SYNDROME LINKS
Websites and online information about Tourette's! But you may have no
way of filtering all this information if you’re new to Tourette Syndrome.
Even more so than with literature in print, online information is fraught with inaccuracies, misinformation, or worst-case scenarios. Some websites start off with good intentions of covering the full spectrum of Tourette's syndrome, then go on to overlook the vast majority of persons with Tourette's syndrome and ONLY discuss issues that affect the minority (self-injurious behaviors, uncontrollable rage, learning disabilities, etc.). These sites are needed and very helpful, but there’s very little written for or about most people with Tourette Syndrome.
You don’t often hear the brighter side of Tourette syndrome online or in support groups. The folks who are doing well with Tourette's don’t have as much motivation to put up a website as the folks who have it tougher or the folks who support those tougher cases. That doesn’t mean that the prognosis for Tourette Syndrome is a negative one — just that the positive stories aren’t as likely to be told because those people have less need for support and are more likely to be out just living their lives.
Some groups become imbued (through self-selection of the most complicated cases) with a negative, biased view of Tourette's. Their own situation may make it harder for them to view Tourette's syndrome any other way. Unfortunately, all too often the scare mongering of such groups chases away the persons with less complicated Tourette Syndrome, as they hear at times little information that pertains to them along with the insistence that their or their child's condition will deteriorate, etc. For some who believe strongly that most of their issues can be attributed to or explained by a Tourette's diagnosis, it can be almost impossible for them to realize that their issues may have an origin other than Tourette's or that many folks with Tourette Syndrome don’t have these same issues.
The potential explanatory power of diagnostic categories, at times, can lure families and professionals into attributing more to the disorder than is reasonable. In our experience, this is particularly true when a child's development has been encumbered with other difficulties such as pervasive developmental disorders, dyslexia, or disruptive behavior problems. Leckman, James F. and Cohen, Donald J., "Tourette's Syndrome -- Tics, Obsessions, Compulsions: Developmental Psychopathology and Clinical Care," John Wiley & Sons, Inc., 1999, p. 36.
All you can do is QUESTION everything you read or hear to help you find your own place on the spectrum. Chat rooms can be an excellent place for friendly support, but be sure to verify the accuracy of information obtained in these informal settings. Be wary of those places where the accuracy of information cannot be questioned or challenged and posts have little in the way of actual medical or journal references. Also, be wary of places where journal references are in abundance, but the posters don't seem to understand how to interpret the relevance of what they're posting or the limitations in journal studies based on the design methodology. And, watch for boards that are run by non-profit organizations that may have an agenda to promote: ask yourself where the donations are going, and who is really benefiting from the "non-profit" status.
Before visiting the sites below, remember to save this site as a bookmark so
that you can return to it!
Tourette Syndrome Association, Inc.
Tourette's Articles - from the Tourette Syndrome Foundation of Canada
Tourette BlogSpot - Minimizing Confusion: Concepts applicable to an understanding of Tourette's and comorbid disorders that are often unavailable in books, written by Roger D. Freeman, M.D.
Tourette's Syndrome Message Board - Join an upbeat support group to chat about the optimistic prognosis for most people with Tourette syndrome, including an FAQ, Announcements, Media, and Research forums.
Blog about Tourette's Syndrome - Tourette's Disorder - commentary about Tourette's syndrome
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. The best and safest place to visit with your children for information directed at children.
Tourette Syndrome "Plus" - Information about educational advocacy and comorbid conditions which may accompany Tourette's syndrome.
HealthCentral.com, information about Tourette Syndrome from the "Best Doctors" section. This is an exceptional question and answer format from Dr. Lawrence W. Brown, Co-director, Pediatric Neuropsychiatry Program, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
Many
Kids with Tourette's Get Better With Time - Another
journal study showing that most children with tics improve as they pass through
adolescence.
Complementary
and Alternative Medicine in the Treatment of Tourette's
Definitions and Classification of Tic Disorders —The Tourette Syndrome Classification Study Group developed a classification of tic disorders that is more helpful for research purposes.
The TIC/CATS data: TS or TS "plus," what's the difference?
INTERNATIONAL LINKS
(español, castellano, others):
links to Tourette Syndrome websites outside of the United States or in languages other than
English.
PANDAS: Some information about Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus infections.
(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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