TOURETTE SYNDROME: Myths and Facts

By Roger D. Freeman, MD
Chair, TSFC Professional Advisory board

Ten years ago most professionals had never heard of Tourette Syndrome (TS), or if they had, they would likely have said that they had never actually seen a case. To them this was not surprising, since TS was reputed to be rare. This was IGNORANCE, and we combated it with great success. Now we have another problem as a result of that success: CONFUSION. This affects all of us, professionals, parents and the general public.

At this still rather primitive stage of our knowledge, controversy is to be expected. Although we sometimes forget to do so, what is controversial should be labeled as such. I have included here a few of the areas that need clarification.

FACT: Tourette Syndrome is a Fuzzy Concept

For scientific and research purposes we need criteria or definitions, but these do not necessarily coincide with what persons with TS feel they "have." And since we do not know the precise mechanism of TS, or have a test for it, this leaves lots of opportunities for confusion.

Here are some problems:

• Although tics are typically described as "rapid," and "purposeless," some are not.
• The boundary between complex tics and compulsions is not sharp.
• To be officially diagnosed with TS you need to have more than one motor and at least one phonic tic. There is no good indication that there is any difference between those who have TS and those who have only one motor tic and a phonic tic, or have multiple motor tics and no phonic tics. The definition is set by a committee, and has changed over time. Most persons with mild and uncomplicated TS are not diagnosed and do not enter the statistics of any clinic or organization.
• Although tics are said to be worse when under "stress" or tension, why do children and adults automatically show less when in a doctor's office? This is quite unclear.
• The literature repeatedly says that tics "disappear during orgasm." I have been unable to find a single reference to this most intriguing research! (Is it just repeated without evidence?)

FACT: Tic Disorders are Inherited

As mentioned above, the boundaries of what we diagnose as Tourette Syndrome are arbitrary. We know that other tic disorders and probably OCD are more common in families with a TS member. Therefore it is not TS (as a "thing") that is inherited, but a tic spectrum disorder, of which what we call "TS" is a relatively uncommon part. If you have TS, the chance of one of your children having a tic spectrum disorder is approximately 50% for males and 30% for females. The chance of having TS could be much less, and if your child does develop TS, it's likely to be simple and mild (since that is more common), rather than extreme. There is some evidence that if there is a tic spectrum disorder on both sides of the family, there is a greater likelihood of more severe symptoms. This area is still very confusing for new parents and for genetic counseling.

MYTH: Coprolalia is necessary for Diagnosis (or is Common)

For those unfamiliar with Tourette Syndrome diagnosis, this is one of the worst of the myths. It is of course often the most dramatic symptom that catches the media's attention, but it only occurs in a minority of cases and is often short lived, rather than chronic. This myth may lead to misdiagnosis or delayed diagnosis, as well as prejudice against persons with TS.

Co-morbidity -- What is "Associated" with Tourette Syndrome?

continue: Myths Surrounding the Personalities of People With Tourettes

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Reviewed: 03/2006