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More good points, SL. I was so intrigued that he ventured to redefine Tourette's in a major journal, that I missed that he also had his own definition of coprolalia, or left the impression that learning disabilities were behavioral issues.

Ellen, as always, you raise excellent and well-presented points.

Neither of my sons could ever be considered as having anything close to behavioral problems or disturbances. Quite the opposite: they are both well known as being among the nicest, most well-behaved, sociable and well-adjusted boys in their classes and among their peers. Each of them has been in hot water at school only a couple of times, all related to not stopping mildly noticeable vocal tics (humming, whistling, gulping). Does their TS not count, according to Jankovic's defintion? Should they be punished for vocal tics, or labeled as having behavioral problems because of vocal tics?

My son's TS first became noticeable following a post-traumatic event, in which he saw a child die, and was made to feel responsible. For a very long time, no one considered what later became obvious: he was ruminating on and obsessing about the deaths because of his TS and OC tendencies.

We saw multiple doctors who did not pick up on TS, as they were all subject to extreme misconceptions about what TS is (see my About Us page). Until we understood that my son had TS (something we only became aware of initially because of a friend), we did not know how to approach his grief and resulting post-traumatic depression. So, although my son could not be described today as having significant impairment, and could never be described as having behavioral disorders, he most certainly had a period of time of deep grief and obsessive suffering due to his TS-related ruminations and moderately-severe tics.

Jankovic's definition of TS would have deprived my son of the understanding and correct treatment that he needed in order to become the fine, well-behaved young man that he is today. No one, back then, wanted to acknowledge that a well-behaved, well-liked child could have Tourette's. Jankovic's article will only help further the misconceptions that will prevent boys like mine from getting adequate treatment and understanding, and will help further the stigma already associated with Tourette's. Worse, as that diagram promotes the notion of "lumping" everything under the TS umbrella, rather than "splitting" in order to better understand issues leading to impaired functioning, many children may receive incomplete or inaccurate diagnoses of all of their conditions, leading to improper treatment.

Quote:

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This is why the Venn diagram is so distressing to me because it comes from a highly respected physician who is looked to as *expert* in the field of TS.

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While this is distressing, what ultimately concerns me much more is the TSA's apparent silence on this matter. If they don't represent us, who does?

Us, I guess.
Via the power of the internet.

On another board, someone pointed out that they were really bothered by Jankovic's statement of "not being able to control their temper," (p. 1186 of article, second column) and added: "That's like saying that people with TS are "not able to control urges."

Yep.

Jankovic made a lot of statements in that article that are moving us backwards from things the TSA has already had to correct in the past, and towards the notion of persons with TS as being angry, rageful, and unable to control their behavior.

Another friend and annoyed humorist on a.s.t. gets credit for this site for the suggested intellectual level of any future colored diagrams submitted to the NEJM:

Neuroscience coloring book

Joseph Jankovic, M.D., who serves in an advisory capacity for the Tourette Syndrome Association, published a diagram and definition of Tourette's in the New England Journal of Medicine with a misleading representation of Tourette's syndrome. "Figure 1. Clinical Hallmarks of Tourette's Syndrome. The diagnosis is based on the occurrence of tics along with behavioral disorders, including attention - deficit -- hyperactivity disorder (ADHD) and obsessive - compulsive disorder (OCD). Other behavioral disorders include anxiety and mood disorders, learning disorders, sleep disorders, conduct and oppositional behavior, and self-injurious behavior." (Jankovic J. Tourette's syndrome. New England Journal of Medicine, October 18, 2001; 345:1184-92.)

Figure 1 makes an impressive first visual impact, with a Venn diagram showing Tourette's lying at the intersection of tics, ADHD, OCD, and behavioral disorders.

When the misleading information was pointed out by another physician in a letter to the editor of NEJM, Dr. Jankovic's response acknowledged the correct diagnostic criterion for Tourette's, but defended his representation of Tourette's nonetheless.

The article was further picked up and endorsed in an article in the American Family Physician.

A family member of a client of Dr. Jankovic reported on an internet bulletin board that, when questioned about this article, Jankovic defended his article and she reports that he stated that "it was also approved by upward of ten leading professionals, including Dr. xxxxxxx, and the TSA." (Name xxx'd out as I have not verified this hearsay and do not consider it worthy of repeating.)

To my knowledge, the TSA has made no effort to correct or refute the notion, put out nine months ago in a major medical journal, that a diagnosis of Tourette's includes behavioral disorders.

The entire incident, including the text of the article and letters to the editor, is elaborated here:

tourettenowwhat.tripod.co...icNEJM.htm

I urge the TSA, its Board of Directors, and Medical and Professional Advisory Boards to take steps to correct and refute the widespread publication of this misrepresentation of Tourette's syndrome.

In its unique position to advocate for persons with Tourette's syndrome, it is shocking that the TSA has allowed this misleading definition of Tourette's to go uncontested, or to think that members of TSA Advisory Boards subscribe to these notions of Tourette's.

The notion that a diagnosis of Tourette's must include the behavioral disorders, as listed in the article by Jankovic, can lead to further underdiagnosis and misdiagnosis of the condition, as well as further stigmatization of those who have Tourette's. It will not help family physicians recognize TS in family practice. It is incumbent upon the TSA and its spokepersons and representatives to publish accurate information about TS, to further understanding of the condition, and to help lessen the stigma already attached to the condition. These kinds of inaccurate representations of the condition have long contributed to the unnecessary stigmatization of persons with Tourette's: it seemed that this sort of thing had stopped since the mid-90s.

I hope the TSA and its representatives will take a stand for accuracy in published information about Tourette's, and refute this misleading information in order to help minimize the already unnecessary stigmatization of persons with Tourette's.

To: ts@tsa-usa.org, josephj@bcm.tmc.edu, fp@aafp.org, cormierb@psychiatry.wustl.edu, comments@nejm.org

I am writing because a misleading and stigmatizing representation of Tourette's syndrome was published recently in the New England Journal of Medicine. This inaccurate definition of Tourette's will hinder accurate diagnoses in family practice of patients with Tourette's. It further unnecessarily stigmatizes persons with Tourette's by inaccurately attaching "behavioral disturbances" as part of the diagnosis. It is surprising that the NEJM would allow publication of an article which has an error in the basic definition of the condition, particularly when there is ample research literature refuting the claims made by Joseph Jankovic, MD, in this article.

The current diagnostic criteria for Tourette's is listed here:

http://www.behavenet.com/capsules/disorders/touretteTR.htm
Diagnostic criteria for 307.23 Tourette's Disorder

A. Both multiple motor and one or more vocal tics have been present at some time during the illness.

B. The tics occur many times a day 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 onset is before age 18 years.

D. The disturbance is not due to the direct physiological effects of a substance or a general medical condition.

The article in question, psychiatry.wustl.edu/Resources/LiteratureList/2001/November/Jankovic.pdf included a Venn diagram showing Tourette's to lie at the intersection of tics, ADHD, OCD, and behavioral disturbances, and stated the following:

"The diagnosis is based on the occurrence of tics along with behavioral disorders, including attention - deficit -- hyperactivity disorder (ADHD) and obsessive - compulsive disorder (OCD). Other behavioral disorders include anxiety and mood disorders, learning disorders, sleep disorders, conduct and oppositional behavior, and self-injurious behavior."

Jankovic J. Tourette's syndrome. New England Journal of Medicine, October 18, 2001; 345:1184-92.

This information is inaccurate: only tics are required for a diagnosis of Tourette's. I hope steps will be taken to rectify this inaccurate and unnecessary representation of persons with Tourette's syndrome.

Include your personal story here

Further information is included here:
http://tourettenowwhat.tripod.com/JankovicNEJM.htm