Blog About Tourette Syndrome - Tourette's Disorder

Monday, October 08, 2007

Strengths and advantages associated with Tourette's syndrome

Strengths and advantages associated with Tourette's syndrome

Tourette syndrome occurs along a spectrum—that is, its severity ranges from mild to severe. The majority of cases are mild and require no treatment; the impact may be so mild that casual observers might not realize the person has Tourette's. Most people with Tourette syndrome lead productive lives with no barriers to personal or professional achievement. Intelligence and lifespan are normal and the overall prognosis is positive, although a minority of people with Tourette's have severe symptoms that persist into adulthood (1).

Tics peak in severity at around age 10; there is typically a steady decline in tic severity throughout adolescence, when one half to two-thirds of children with TS experience a reduction or complete resolution of tic symptoms. These results were found in a cohort of patients with TS encompassing all levels of highest-ever tic severity and including comorbid diagnoses; several of the subjects had very high initial severity and comorbid diagnoses of OCD and ADHD. A study of 46 19-year-olds with TS found that the symptoms of 80% had only minimum to mild impact on their overall functioning. A follow-up look at 31 adults with Tourette's found that all had completed high school, 71% were employed full-time or pursuing higher education, and 52% finished at least two years of college.

Severe Tourette syndrome persisting into adulthood is a rarity. Although Tourette's can be difficult for this group, discussions with adults in the Tourette syndrome community reveal that not everyone wants treatment or a "cure", particularly unless they know what else they may "lose" in the process. Some believe that there may even be latent advantages associated with the genetic vulnerability and that Tourette's is associated with heightened creativity. Adults are also concerned that the process of "curing" TS could result in cognitive losses (2).

Research supports advantages associated with Tourette syndrome.

A study of 11 adults with TS found that they could visually bisect a line more accurately than control subjects (have a ticcer hang all your pictures quickly without a tape measure).

A study of eight children with Tourette syndrome found they were much quicker at certain mental grammar skills than children without TS. The underlying brain differences that lead to tics may also lead to "other rapid behaviors, including the cognitive processing of rule-governed forms in language and other types of procedural knowledge". Michael Ullman, PhD, said, "These children were particularly fast, as well as largely accurate, in certain language tasks. This tells us that their cognitive processing may be altered in ways we have only begun to explore, and moreover in a manner that may provide them with performance that is actually enhanced compared [to] that of typically-developing children". Six of the eight children studied had "TS-only"; two of the eight had ADHD, one of whom also had OCD.

Martha Denckla, MD, of Johns Hopkins University School of Medicine reports that there is evidence supporting the clinical folklore that children with "TS-only" (40% of children with TS, according to Denckla) have unusual gifts; neuropsychological studies reveal advantages in children with TS-only. A study of full-scale IQ showed that children with TS-only had higher IQ scores than predicted by statistical models, relative to their parents' intelligence. She says, "there is reason to give some credence to common clinical lore, namely, that these children are unusually intellectually gifted youngsters who show no cognitive deficits." She also reported that none of the children with pure Tourette syndrome (TS without co-occurring conditions) had learning disabilities.

Another study of motor function found that 76% of children with TS-only were faster than average on timed motor coordination; similar results were not found among children with TS with co-occurring attention deficit hyperactivity disorder.

A controlled study of 13 people with TS found that cognitive control was enhanced in people with Tourette's (without ADHD) because a lifetime of suppressing tics results in more efficient control of inhibitions. A follow-up study confirmed the result that individuals with Tourette's exhibit greater cognitive control than age-matched subjects. The enhanced cognitive control in the TS group was found in spite of there being a statistically-significant slight advantage in the average IQ of the age-matched controls. Subjects with ADHD were excluded from the sample and controls were also screened to eliminate ADHD.

When ADHD co-occurs with TS, social, behavioral and academic difficulties may be present. Many studies have shown that behavioral disturbances seen in TS are actually caused by co-occurring ADHD and not the TS itself, and that learning disabilities may be secondary to ADHD as well. Denckla argues that there is a case for categorizing "pure TS" separately from "TS plus ADHD" and that "it is important to inform the parents of [children with pure Tourette syndrome], who comprise 40% of all children with Tourette syndrome, that their future is not burdened with the same issues as those of the remaining 60% of children who have comorbid ADHD with Tourette syndrome." She also says that treatment for TS plus ADHD need not differ from treatment for ADHD alone.

1. Walkup JT, Mink JW, Hollenback PJ, (eds). ''Advances in Neurology, Vol. 99, Tourette Syndrome.'' Lippincott, Williams & Wilkins, Philadelphia, PA, 2006, p. xv.

2. Leckman JF, Cohen DJ. ''Tourette's Syndrome—Tics, Obsessions, Compulsions: Developmental Psychopathology and Clinical Care.'' John Wiley & Sons, Inc., New York, 1999, pp. 408–409.

Strengths and advantages associated with Tourette syndrome

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Tuesday, March 14, 2006

Medical Incredible and Miracle Workers: Brain surgery for Tourette's syndrome

Deep Brain Stimulation, Tourette's Syndrome, and "Miracle Workers"

DBS is an experimental, potentially dangerous, expensive treatment for Tourette Syndrome. Brain surgery is not likely to become a widespread option for the treatment of tics, and will not likely ever be an option for the vast majority of people with Tourette's -- children who eventually outgrow their tics anyway.

Two programs aired on national television in March, 2006, featuring brain stimulation surgery (DBS) for patients severely affected by Tourette Syndrome (an extremely rare minority).

Medical Incredible on Discovery Health cable channel, featured a 50-year-old man with severe Tourette Syndrome, who had the Deep Brain Stimulation implant surgery at Yale University. Miracle Workers on ABC, featured a 19-year-old woman who also underwent the DBS surgery. The Tourette Syndrome Association was not involved in the development of either of these programs; however, the Medical Incredible program featured the patient of a well-respected Tourette syndrome expert from one of the premiere Tourette's clinics in the world.

Before the two segments aired on March 13th, the TSA issued a news release about the procedure and the programs, stating that DBS "should be viewed as experimental treatment" for "a very small minority of severely affected people with TS".

You can see an illustration and description of Deep Brain Stimulation here. The surgery is more established as a treatment for Parkinson's than it is for Tourette's: a discussion of the surgery and some of the problems encountered with its use can be read here. More information about the risks associated with DBS is provided by

You can read the Tourette Syndrome Association statement on Deep Brain Stimulation here. Neal R Swerdlow, MD, PhD, Department of Psychiatry, UCSD School of Medicine, and the outgoing chairman of the TSA Scientific Advisory Board, commented in Tourette Syndrome: Current Controversies and the Battlefield Landscape, Current Neurology and Neuroscience Reports, 2005, 5:329-331

The most recent controversy in TS treatment relates to the use of deep brain stimulation (DBS). Effective in Parkinson's disease and some dystonias, DBS has been used in only a handful of TS patients, with one of them receiving high-profile media coverage. Neither the efficacy nor the safety of DBS in TS is known, and neither electrode placement nor stimulation parameters have been studied systematically. A TS Association task force is in the process of publishing recommendations on these issues, as well as on others related to DBS trials, including subject selection criteria and neuroimaging protocols.

The Tourette Syndrome Association, Medical Letter 2004, pages 22-23, contained a discussion of Deep Brain Stimulation for Tourette's Syndrome, "Issue of the Issue," authored by Donald L. Gilbert, M.D., M.S. Some excerpts from that discussion are included here.

"DBS was approved in the US for Parkinson's Disease and Essential Tremor in 1997, and approved for Idiopathic Dystonia in 2003. DBS is not approved for Tourette Syndrome." Deep Brain Stimulation should be considered "highly experimental" for several reasons:

• "the best placement of the stimulator in the brain is uncertain".
• "the Cleveland-area patient who received DBS manifested symptoms that are unusual, even in severe TS," so the benefit to this "unusual patient may not occur in other patients with TS".
• three adults showed less benefit from DBS in the Netherlands. "DBS is not free of adverse effects ... there may be serious short-term (bleeding in the brain, infection) and long-term (device failure, need for surgery to replace batteries, other unknown outcomes) risks". "We do not know whether ... complications will occur in TS patients with head and neck tics", which could cause "DBS electrodes to break or erode through the skin at a very high rate".
• "most patients that seek medical attention for TS are children or adolescents", but symptoms "often get milder in late teenage or adults years". It is not currently possible to predict which children will have severe symptoms in later life. "The use of DBS in severely affected children or adolescents is not warranted".
• the procedure requires long-term, expert monitoring, is expensive, and is not currently covered by insurance.
• "conclusions about short and long term benefit of DBS for severe TS are premature".

Miracle Workers: some comments

The March 13, 2006, ABC, Season 1, Episode 2 airing of Miracle Workers featured a 19-year-old woman from Poway, California, Emily Bresler. Emily has a severe case of Tourette syndrome, which is extremely rare in adulthood, since tics remit or improve for most children with Tourette's as they pass through adolescence. Emily acknowledges that 3/4 of people with tics "grow out of it", and that she is in the "unlucky minority". Emily's mother says, "she's hurting herself, and I can't take it anymore". When some of Emily's tics are shown, her mom says, "every time you do that, it hurts me". Her father, who had Tourette's syndrome as a youngster, mentions the guilt he lives with for transmitting the hereditary condition to Emily. Parental guilt, or parental difficulty in accepting tics, is a factor in the clinical care of Tourette's syndrome patients. However, unlike some of the sensationalized television talk shows about "extreme disorders", we were shown a loving, supportive family, and Emily's tics were portrayed factually, without sensationalism.

Although it is mentioned that tics as severe as Emily's occur in an "unlucky minority", the show never discusses how extremely rare it is, or mentions a more typical course of tic severity for most patients with Tourette's syndrome. Emily is described by one of the nurses associated with the show as having one of the severest cases of Tourette's she has ever encountered: it is not clear how many cases a nurse who may not be affiliated with a Tourette's specialty clinic may have seen. Emily's symptoms, as shown, did not strike this viewer as one of the severest cases ever seen.

One of the doctors states that tics come from "abnormal impulses from a small area of the brain", the size of a bb. The exact brain mechanisms involved in Tourette's syndrome are not known with great precision, and the TSA has indicated that the best placement of the stimulator is uncertain. The very serious risks, and ongoing issues with using brain surgery to "cure" tics, are never fully detailed on the show. The need for long-term expert monitoring, or future surgeries to replace batteries, was not mentioned. Unlike the other patient in the same segment (Adrian, a child with life-threatening scoliosis), it isn't really made clear that Emily's condition is not life threatening, that the risks associated with Deep Brain Stimulation are extreme, or that many young adults do learn to live successfully with tics and without the need for life-threatening surgery. The Health Issues section of the Miracle Workers' website does not discuss the risks, or provide information about Tourette's syndrome as experienced by most patients. The doctor mentions that there have been fewer than a dozen of these surgeries performed (in fact, far fewer than a dozen), and that results so far are very encouraging. In fact, the results of the surgeries done in the Netherlands were less encouraging, and this seems to be a premature statement based on the number of successful outcomes to date, considering that little is know about the long-term outcome for any of these patients. Emily was provided with pharmaceutical assistance for life, but the show did not make clear what medications are needed or why, and who would pick up the costs for the long-term monitoring needed, especially since she lives in California, while her surgery was performed at Tulane University in New Orleans.

Emily was a delightful, spunky, beautiful and courageous woman, who will perhaps prove (over time) to be a pioneer in the treatment of Tourette's. The surgery appears to have worked for her, and I hope her long-term prognosis is good. It appears to have been a "miracle" for her, but the promise of the show for most persons with Tourette's may be misleading. I would have felt much better about the show if the surgery had been done on a mature adult, who has fully come to terms with life with tics and had time to make a life-risking decision. What the show did not say is that the vast majority of Tourette's is mild, occurs in children who most often see tics remit or subside in adulthood, and that extreme tics in adulthood are a very rare minority. For those reasons, dangerous and expensive brain surgery to correct tics is not likely to become a widespread option for most people with tics any time soon. Although Emily was admirable, this show for me was not a "tear jerker" as promised: it was just another example of less than accurate portrayals of life with and treatment options for Tourette syndrome.

Medical Incredible: some comments

The March 13th episode of Discovery Health Channel's Medical Incredible provides a counterexample to the Miracle Workers program. It features 50-year-old Steve Blackman, a patient of the highly-respected Tourette syndrome expert, James F. Leckman, MD, at Yale University. The contrasts between this show and Miracle Workers are numerous.

Steve Blackman truly has a very rare, severe, violent, and life-threatening case of Tourette syndrome. He is not a young adult: he is 50 years old, has tried extreme alternatives (like having some of his muscles removed to lessen his tics), and has shown the capacity to successfully adapt to life with tics (he is an EMS technician). This is truly a man with a severe and violent case of Tourette's, who has tried everything, whose life may be at risk from the violent nature of his tics, who already has nerve damage from the tics, and for whom the risks of surgery appear to be warranted. Steve represents a patient old enough and experienced enough to be making a life-altering or life-threatening decision about treatment of his very severe Tourette's syndrome.

In contrast with the surface glitz and subtly misleading portrayal of Tourette syndrome on Miracle Workers, this show, to me, is a tear jerker. The weariness in Steve's face and body, from a lifetime of truly painful and severe tics, is heartwrenching. The show describes Steve as tormented and living in hell, which is painfully obvious from the video clips. Steve's level of symptom severity should provide context for the glitzier (and likely more widely viewed) Miracle Workers production, which in contrast, appears to be promoting brain surgery for tics somewhat prematurely.

Discovery Health Channel features Dr. Leckman speaking about Tourette syndrome. Accurate information about all aspects of Tourette syndrome is provided, including information about the more typical progression of tics for most patients. There is no misleading or inaccurate medical information.

This program is not for the weak of heart, or frightened parents of children newly-diagnosed with Tourette's. It doesn't provide the sugar-coated, tear-jerker, glitzy, happily-ever-after production of Miracle Workers. What it does provide is an accurate discussion of typical Tourette's syndrome, from a recognized and experienced Tourette syndrome expert, and a look at a truly rare and severe case of Tourette's, for which extreme intervention is warranted. Unfortunately, the show does have a "freak show" quality, because of the other medical issues included in the same segment. For a realistic appraisal of the applicability of deep brain surgery for Tourette's syndrome, I recommend Medical Incredible over the "Holllywood" portrayal of Miracle Workers. According to their website, Medical Incredible will air again on March 19th and March 20th.

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Tuesday, January 17, 2006

"Extreme" Disappointment with Dr. Phil on Tourette's

Dr. Phil on Tourette's Syndrome and Asperger's

Dr. Phil ran a segment on January 17, 2006, titled Extreme Disorders, about Tourette's syndrome and Asperger's. His guests representing Tourette's -- Craig (with TS), accompanied by his fiancée Amy -- were composed, gracious, personable, charming, well-spoken and humorous. They could not have represented people with Tourette's better, both in character and in their responses to leading questions (that sometimes came across as negative and baiting) about life with severe tics and coprolalia.

But, Dr. Phil repeatedly referred to both conditions (Tourette's and Asperger's) as "extreme." He never mentioned that most people with Tourette Syndrome have mild symptoms, or that severe Tourette's disorder in adulthood is rare. Dr. Phil constantly turned his conversation to more sensationalized aspects and severe symptoms of both conditions (repeatedly emphasizing extreme anger and violence in Asperger's syndrome, and coprolalia in Tourette Syndrome -- never noting that it occurs in a small minority of persons with Tourette's). Craig and Amy saved the day, with their calm and compassionate demeanor and responses.

The segment on Asperger's syndrome was particularly discouraging, because it involved issues (ineffective parenting, marital problems, and possibly unmentioned diagnoses) that went beyond the actual diagnosis of Asperger's. It linked Asperger's to extremely violent behaviors, and talked about parents hating their son and wanting him out of the family. It showed video clips of parents behaving abusively towards their son -- I always wonder, if parents behave that way when on camera, how do they treat the boy off camera? The boy had remarkably more insight into his family dynamic than either of the parents.

As the first (Asperger's) segment approached its conclusion, we found what the show was really about -- the upshot was brain imaging (SPECT) as a diagnostic technique and a means of informing treatment for Asperger's and Tourette's syndrome ! Dr. Phil appears to leave the parents of the boy with Asperger's the impression that a diagnostic brain scan will be the beginning of the road to correct treatment for their son ! His mom gets teary-eyed when Dr. Phil mentions that they're going to get a brain scan for her son, so they can find out "exactly what's going on."

In spite of his guest doctor's (a Dr. Hipskind - a name never encountered in Tourette's research) more measured answer about how well established this technology is for diagnostic purposes, Dr. Phil implies that interpretation of SPECT results has reached a level of being useful in diagnosis and treatment of DSM conditions. He even states that it is a "mainstream thing." Dr. Hipskind's website doesn't claim he can diagnose Tourette's, or make treatment decisions, based on a brain scan, but Dr. Phil leads us (and the parents of the boy with Asperger's) down that path.

Dr. Hipskind's website, promoted on the Dr. Phil show and webpage, is about SPECT imaging (Single Photon Emission Computed Tomography). SPECT is a brain imaging technique which evaluates brain activity by tracing blood flow through various regions of the brain. In some DSM conditions, it is currently useful as a research tool, for observation of the brain's activity in groups of people with a common condition or disorder, and identification of areas of the brain which are and are not functioning properly within that group, and relative to "normal" controls. Is the understanding of SPECT information to a point that it can be useful in practice for diagnosing and treating individuals? The answer for Tourette's syndrome, is "not yet."

This is an easy-to-understand explanation of the limitations of brain imaging (SPECT) from a lecture by Russell Barkley, an ADHD expert, posted at

HOST: What is your knowledge and opinion of the SPECT scan for AD/HD diagnosis?

DR. BARKLEY: Well, first of all, let’s start with the fact that on SPECT scans, when you study groups of people with AD/HD, you are able to show that the group of AD/HD individuals show somewhat less blood flow to those regions of the brain that I mentioned to you on that slide, so that SPECT scans can be useful research tools for studying groups of people. Note the emphasis on the word group. What clinicians do, on the other hand, is they diagnose individuals. They classify cases. That is a very different enterprise. And therefore you could take a test that is useful for studying groups and find that it is useless for classifying the people in the group. At this point in time there is no evidence that SPECT scans can be used for accurate diagnosis of AD/HD. There are a couple of people on the lecture circuit who will tell you that based on their clinical experience that this is possible. But these people have not published their findings in peer-reviewed journals and subjected their claims to good scientific review. And until they do, their claims should be viewed as skeptical as any other claims being made by somebody who’s promoting a particular point of view.

So at this point SPECT scanning would not be useful in any way. It would be a waste of money, in fact, for the diagnostic workup of somebody with AD/HD because we don’t have norms for SPECT scanning and we cannot tell on the SPECT scan whether or not your SPECT scan is particularly abnormal unless it’s grossly abnormal, and we certainly can’t use it for subtyping your AD/HD and predicting your response to treatment because there is zero, not a single study anywhere in the literature, on the use of SPECT scanning for subtyping and the prediction of treatment response in people with AD/HD. At this point it remains an unproven assertion, but I know that there are some people out here who I will not mention who love to do this. So at this point it’s a useful research tool. We’re actually doing some research with SPECT scanning ourselves at the moment, but I would never recommend it for diagnostic purposes.

The same explanation applies to Tourette's syndrome. Brain imaging techniques have identified differences in brain volumes between groups of patients with Tourette's syndrome and "normal" controls, but this technology currently is not useful for diagnosing and treating individuals with Tourette's syndrome. And, there is no medication or treatment targeted at coprolalia (Craig's most troubling symptom), even if the brain imaging information was useful.

Tourette's syndrome received a more favorable portrayal than Asperger's, but the credit for this doesn't go to Dr. Phil, who repeatedly emphasized coprolalia and led questioning in negative directions. Fortunately, Craig and Amy didn't cooperate in Dr. Phil's apparent plan to paint Tourette's with one color: they were excellent spokespersons for the condition, and all-round delightful people. Craig, by his calm presence and demeanor and apparent good character and integrity; and Amy as his charming and personable fiancée, conveyed that ... yep .. they were better than regular folks ... they were great people, and a really nice couple! This, quite simply, spoke for itself and potentially undid any damage that this show may do. I couldn't help but note that the Tourette's community had been well served by Craig and Amy, while the Asperger's community didn't have the benefit of having a spokesperson who could stand up to Dr. Phil.

Now, to the damage that was done: never mind that most people with Tourette's syndrome don't have coprolalia, that Tourette's can't be diagnosed in practice with information from a brain scan, and treatment cannot yet be guided by brain imaging. Worse is that Dr. Phil appears to either be determined to present less-than-complete and accurate information about Tourette's syndrome, its diagnosis and its treatment, or simply has not got a very thorough research staff. Surely, they could have located the National Tourette Syndrome Association as a credible source of information about the condition? Instead, Dr. Phil refers viewers to his website for more information about Tourette's, where he quotes the controversial David Comings.

According to Dr. Phil's webpage about Tourette's syndrome:

Recognize the Symptoms:
Rapid eye blinking, facial grimacing
Head jerking, crotch touching, or other muscle tics
Throat clearing, barking, sniffing
Squeaking, or other kinds of repeated vocal noises

Short attention span.
Learning disabilities or dyslexia
Behavioral problems
Short temper, confrontational and oppositional defiance
Unable to take no for an answer, tantrums over nothing
A lot of phobias
Anxiety attacks
Inappropriate sexual behavior
— From Tourette Syndrome and Human Behavior by David Comings, Hope Press "

Hope Press is the vanity press founded by David Comings, MD, which allowed him to self-publish and market his views after he encountered opposition from peers and in peer-reviewed journals.

The diagnostic criteria for Tourette's disorder do not include the symptoms listed by Dr. Phil and David Comings, MD. The symptoms of Tourette's are motor and vocal tics, which may sometimes be accompanied by obsessions or compulsions. Attention-Deficit/Hyperactivity Disorder and Obsessive-Compulsive Disorder (OCD) are conditions associated with Tourette's, but they are not necessary for the diagnosis, and not all persons with Tourette's will have these symptoms. David Comings' list includes some symptoms of other conditions, which may occur along with tics in some individuals, but are not widely believed to be associated with Tourette's. Dr. Phil could have offered on his website a link to an official source of information about Tourette's syndrome, such as the Tourette Syndrome Association. One might question why he chose to include a controversial definition from David Comings, MD., rather than provide less sensationalized information about the condition to his viewing audience. Sensationalism sells?

Some of the issues with Comings' published work on Tourette's:

"In a remarkable series of papers by Comings and Comings in the Journal, a number of claims are made that have profound implications for future research on Gilles de la Tourette syndrome (TS). Their assertions fall outside of the mainstream of the very extensive TS literature that has developed over the past 2 decades. The novelty of the conclusions and the visibility of their presentation require that the papers receive thorough discussion."

{followed by a lengthy discussion of methodological problems with Comings' work}

"He concludes that it has not escaped his attention that the reason disorders of disinhibition are so common 'is that they are (1) genetic, (2) dominant, and (3) result in disinhibition, especially of sexual activity.' Aspects of this statement are unfounded, particularly his comment concerning sexual activity. In the first six reports in the series, the authors present no data to demonstrate that individuals with TS are sexually disinhibited in a way that would result in increased frequency of the disorder. Specifically, they do not provide any family data to show that TS patients have larger than average family sizes. In fact, data presented in these papers suggest that the TS patients' sexual activity is not different from that of controls. To attach such a label to individuals who have already suffered tremendously because of their illness is at best insensitive; to do so without having any data to substantiate the claim is inexcusable.In summary, any one of these methodological difficulties is sufficient to weaken considerably the conclusions offered by Comings and Comings. All of them together make it impossible to accept as valid any of the results presented and raise serious concerns regarding the integrity of the peer review process for these papers." Pauls DL, Cohen DJ, Kidd KK, Leckman JF. Tourette syndrome and neuropsychiatric disorders: is there a genetic relationship? Am J Hum Genetics, 1988 Aug;43(2):206-17.

His guests, Craig and Amy, really saved the day, but Dr. Phil nonetheless has furthered an inaccurate description of the symptoms and diagnosis of Tourette Syndrome, and left viewers with impressions about brain imaging which are bound to disappoint, or cost parents poorly-spent money on a technology that is not there yet. But what the heck -- Craig and Amy are going to get some expensive, cool color pictures of his brain as a souvenir for a wedding gift !!

Dr. Phil is now in the company of others who have made irresponsible representations of Tourette's syndrome in the media, like "Dr. Laura" on Tourette's Syndrome, Touched by An Angel, and Ally McBeal.

Dr. Phil (Phillip Calvin McGraw) on other DSM conditions

Response from CHADD: Dr. Phil on AD/HD, Major Blunders, Some Positives"CHADD watched the program and responded to Dr. Phil with concern about many of his non-scientific recommendations."

Misinformation about OCD from the OC Foundation, Ask the Experts:"Dr Phil needs to catch up with current practice. Systematic desensitization is a method that was developed many years ago for treatment of phobias and it has been tried but not found to be highly effective for OCD."

NAMI Blasts Dr. Phil from the National Alliance for the Mentally Ill:"Dr. Phil’s conduct is serious enough to warrant investigation by a relevant board of licensure."

Dr. Phil on other issues
Project Race: from the Executive Director
Scarborough - Natalie Holloway and Diet lawsuits

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Friday, December 30, 2005

About "Dr. Laura Schlessinger" and Tourette's Syndrome

Does Her
" Never To Be Humble Opinion"
Contribute to
"One of the Saddest Things in Her Life ?"
Viewing the "Dr. Laura" Tourette's incident in perspective
following her interview on Scarborough Country, MSNBC

"There are probably more Internet hate sites about me than Charles Manson. In fact, I don't think there are any hate sites about Charles Manson, but if you call up my name on one of these things, you will find hundreds of thousands of just demeaning, hateful, hostile, ugly things about me, and I walk around sometimes in circles trying to think, gee, I am trying to help people lead better lives. Why does that engender so much hate? So, I have had to come to peace with there are forces that are against goodness, and what I think is basic common sense truth. And you have to be able to stand up against that wind. " (1)

So claimed "Dr. Laura" Schlessinger when she was interviewed on MSNBC's Scarborough Country to promote her upcoming, appropriately-named theatrical event, In My Never To Be Humble Opinion. It is billed as a two-act, one-woman show where she will share her opinions on "everything from childbirth to death." The pre-publicity gives the impression we are to see a more open, personal side of "Dr. Laura." She revealed a bit of this in her interview with Joe Scarborough, when she almost teared up as she admitted that ...

"... it's one of the saddest things in my life that I don't have a relationship with God right now." (1)

Right now?
Or never?

No, hopefully not never -- God doesn't give up that easily, even on someone prideful and arrogant, who apparently vows "never to be humble." Does Laura Schlessinger really want a relationship with God, and is the lack of one really her greatest sadness, or are these interview admissions really about promoting her upcoming show and herself to a large segment of her followers? It's hard to tell.

This is a woman who apparently just doesn't get it. Compounding her history of moral and spiritual confusion (5), she seems to see no connection between her behavior, her lack of a spiritual relationship with the God she professes to embrace, and her image problems. She presents herself as a victim of the internet age, comparing herself to the serial killer Charlie Manson, even while acknowledging her own lack of humility in the title of the show she's promoting! She sees herself, apparently, as a victim in a role in which her own actions play no part. Not surprisingly, she's assumed the victim role before, in discussing the Tourette's incident. (2) "Dr. Laura" seems to have no cognizance of how her own actions and behaviors are connected to her image, and would have us believe that she advocates only "basic common sense truth," while anyone pointing out when she is simply wrong about medical facts must be a "force against goodness." She doesn't seem to understand that she is accountable for her actions, particularly when they are wrong, and/or can harm others. Where was this "common sense goodness" when she made assumptions about a child with Tourette's, making pronouncements and judgments based on inaccurate medical information, and reversing all of her professed family "standards" to insist that the child be excluded from an important family event? She did this without apparently having even a basic, fundamental knowledge or understanding of Tourette syndrome or the circumstances actually experienced by this child in this family.

Perhaps it never occurs to her that some people may find some of her own pronouncements "hateful, hostile, and ugly?" Perhaps her arrogance doesn't leave room for such ideas to enter into her consciousness. Or perhaps she's just playing to a segment of her audience, in order to increase ratings and promote her show.

Further, because she is viewed as being aligned with the religious right (in spite of her professed lack of a relationship with God), she contributes to unfavorable impressions of those with the political and religious orientations she pretends to represent.

Let's review the facts of the Tourette's incident, as it provides an example of how Dr. Laura herself is responsible for "engendering so much hate."

In the infamous Tourette's incident of so many years ago, Laura Schlessinger employed a double standard as soon as she heard the dreaded "T" word. She reversed her previous statements and positions about the importance of family not taking sides, and drew hasty conclusions about the child as soon as she heard the caller was referring to a child with Tourette's syndrome. After a LOT of protest over her inaccurate and judgmental response, she took a second chance to address the issue on a subsequent show, but then aired even more damaging and inaccurate information about Tourette's disorder! The transcripts of those shows, and a record of her attempts to rewrite this history into something different, are now part of her documented history. (3) She never personally apologized on air or on her website, she never personally fully retracted her inaccurate statements, and she never made amends for the harm done to people with Tourette's syndrome. What did occur is that a post allegedly representing her views was made to an internet message board, with no means of verifying that it came from her or represented her views, and containing statements which she personally did not make on air or on her website. So, was the apology from her or from her "handlers?"

Contrast this, for the sake of argument, with how it could have gone, were it not for "Dr. Laura's" own pride, arrogance and apparent inability to repair damage done. In a different, (not uncoincidentally) little known incident, a columnist made an unfortunate reference to Tourette's in one of her articles. She received some published and other private protests and comments on her article, in which she used Tourette's as an analogy to describe a politician's stupid comments. In response to my e-mail to her, I received an immediate reply, which included among other things, two simple sentences:

"I'm sorry for my insensitivity. It was dumb." (4)

How easy was that?

End of story, right there, just that simple. Just as simply, "Dr. Laura" could have apologized and and used her radio format to correct the inaccurate and hurtful information she put out about Tourette's in her first show. Instead, she used her credentials "as a scientist" (she's not a medical doctor, or a psychologist) to air incorrect information about Tourette's syndrome a second time.

So why is a straightforward apology and admission of error so hard for "Dr. Laura?" Is there, per chance, a connection between the things she acknowledged to Joe Scarborough, and her inability to make amends when her wrongful, inaccurate information brings harm to others? Isn't there is a reason that pride is considered a great downfall? Is there a connection between her arrogance and spiritual yearning? These aren't questions for a rocket scientist, but the connection seems to have escaped Laura Schlessinger.

Let's look at some more of what she said in her interview with Joe Scarborough.

"I really immersed myself in Judaism to the point that I had a Orthodox conversion, and let me tell you, when I do anything, you know me well enough to know, it's 120 percent. I had great hats, I mean. I wore—I did Shabbos. I did everything, and I was never—it's very sad for me to say this, it upsets me to this day, but as hard as I worked and as hard as I tried and as hard as I prayed and as hard as I immersed myself, I didn't get there, and it's a great sadness to me ... " (1)

Well, wearing the hat doesn't get one a relationship with God, nor does pursuing a relationship with Him through our own self-directed hard work and goals. Humility and submission to the will of a greater power doesn't seem to have entered "Dr Laura's" conscious awareness of Desirable Ways to Approach God. How can one expect to find a relationship with God in the presence of pride and arrogance?

If a relationship with God is truly what Dr. Laura seeks (and not just more publicity), the way out of her greatest regret and sadness is not that hard to find. It's there for the asking and for the taking. But a first step is putting aside "never to be humbled" pride and arrogance. Dr. Laura might even consider a starting place for practicing humility: setting the record straight for one small child with Tourette's, who wanted to attend his aunt's wedding. Humbling one's self is a good start towards learning to submit to God's will.

But ... What does "Dr. Laura" want more -- the ratings or the relationship? Or, stated another way: can she ever allow herself to be wrong?

Dr. Laura Schlessinger, this is to you: the child was young, impressionable, easily scarred and damaged, with his whole life ahead of him. The acceptance of his family could be his first step towards a healthy outcome, and family rejection could be the first step towards a life of despair. You were misinformed, hasty, judgmental and wrong in your medical facts and assumptions about the child. When given the chance to become informed, and do the right thing, you didn't take advantage of that opportunity. Some might even say you were "demeaning, hateful, hostile, and ugly" to people with Tourette's syndrome. You had the chance to make a difference. You consciously chose not to do the right thing. You are accountable -- to the families with Tourette's, to your audience, and, yes, even to God. Taking you to task for medical misinformation is not "hateful" ... it is holding a public person, who enjoys a wide audience, accountable for disseminating misinformation in ways that can bring further harm to persons already living with a stigmatizing condition. You have turned your failure, and your mean-spirited response to that sister-of-the-bride, into a situation where you have convinced yourself that you are the victim of the internet, and that it is others who are just "bound to hate." Another name for this narcissistic behavior is denial.

It's really not that hard to Go and Do the Right Thing. Or is it? As Dr. Laura might say:

Don't forgive those who wronged you unless they evince Remorse, Responsibility, and Repair (her "three R's"). (6)

Another example of Dr. Laura not following her own advice? She accuses those of who hold her accountable of being "forces against goodness," yet she demonstrated no remorse, reponsibility, or repair in her response to the Tourette's debacle.

I'm not sure how her forgiveness policy fits in with most religious doctrine, but that is between her and God.

(1) Transcript of MSNBC's "Scarborough Country," December 29, 2005.
(2) Dr. Laura claims the "victim role" in Tourette's incident.
(3) Dr. Laura on Tourette's, transcripts and incident of May, 2001.
(4) Kathleen Parker Tourette's Response
(5) Dr. Laura Loses Her Religion
(6) Wikipedia: Laura Schlessinger


TSNW - TSNowWhat - Tourettenowwhat - Tourette Syndrome Now What

Monday, December 19, 2005

Tourette's "Genetic Breakthrough" - The SLITRK1 Gene

"Genetic Breakthrough Yields Clue to Tourette Syndrome"
Putting the new findings about the SLITRK1 Tourette's Gene Into Perspective

There was a big splash in the media about a "genetic breakthrough" with respect to Tourette's syndrome. Some of the media reports went so far as to leave the impression that *the gene* for Tourette's had been found, and that, consequently, a "cure" might be forthcoming.

In order to put this Tourette's gene finding into perspective, it may be instructive to look at some of the more serious, official press releases and articles about the SLITRK1 genetic finding.

"Pursuing genetic analysis of one boy with TS with a known chromosomal abnormality, the group was able to pinpoint a gene (SLITRK1) on Chromosome 13 that is associated with some forms of TS." (1)

"A bad break that apparently gave a young boy Tourette syndrome ... a boy who had an inversion in chromosome 13: A portion of his chromosome had an orientation opposite that of normal chromosomes. The boy was the only member of his family with Tourette syndrome and the only one with the inversion." (2)

" ... the researchers focused on identifying an individual with both TS and a chromosomal abnormality." (4)

"They compared the gene to a wider TS population of 174 people. The team found an abnormal DNA sequence in one family and the identical, very rare change in the DNA sequence in two unrelated people." (3)

"Searching for the same gene in the genome of 174 other individuals with TS revealed three individuals with the same mutation. " (4)

"Taken together, these converging results suggest that this gene is associated with some forms of TS in some families." (1)

"The researchers stressed that the discovery only explains one in 100 people who have Tourette's Syndrome." (8)

" ... the gene is responsible for at most a small fraction of Tourette cases. Other researchers warn that the findings, although interesting, remain tentative. 'Each piece of the evidence is intriguing but not on its own conclusive,' says UCLA geneticistNelson Freimer. 'To what degree can the pieces be combined to make a persuasive case? Opinions will differ on that.' " (2)

"Scientists remain uncertain of the ultimate impact of the research. 'In terms of how characteristic it is of the Tourette's population as a whole, the jury is still out,' King said." (4)

Summarizing this information from "official" sources:

A. The identified boy had a chromosomal abnormality.

B. No one else in his family had Tourette's syndrome.

C. Of 174 people studied, the chromosomal mutation was found in a total of 3 people (1 percent to 2 percent).

D. Tourette's syndrome researchers and experts ackowledge that the findings pertain to some individuals, some families, and a small fraction of Tourette's syndrome cases (about 1 in a hundred).

E. Opinions among Tourette's experts and researchers vary as to the relevance and significance of this finding.

A more confusing aspect of the way this finding has been presented has to do with what is known as "tourettism," which refers to secondary causes of tics, that may mimic Tourette's syndrome. We find indications throughout the medical literature that chromosomal mutations are a known cause of tourettism, which mimics Tourette's, but may be different from primary, inherited, genetic Tourette syndrome.

Here is some information about tourettism:

"Motor and phonic tics are most frequently due to Tourette syndrome, but there are many other causes of tics ... Genetic and chromosomal disorders, such as Down's syndrome, neuroacanthocytosis, and Huntington's disease were associated with tics ... To understand the physiopathology of tics and Tourette syndrome, it is important to recognize that these may be caused or associated with other disorders." (7)

"Pathologic tics (secondary [tourettism]) * Infections - Encephalitis, Creutzfeldt-Jakob disease * Sydenham chorea * Drugs - Stimulants, levodopa, carbamazepine, phenytoin, phenobarbital, antipsychotics (tardive tics) * Toxins - Carbon monoxide * Developmental - Static encephalopathy, mental retardation syndromes, chromosomal abnormalities * Other - Head trauma, stroke, neurocutaneous syndromes, chromosomal abnormalities, schizophrenia, neuroacanthocytosis degenerative disorders." (5)

"Several conditions, termed tourettism, may mimic Tourette's syndrome. Drugs, including stimulants, levodopa (Dopar, Larodopa), and antiepileptic medications (eg, phenytoin [Dilantin], carbamazepine [Atretol, Epitol, Tegretol], lamotrigine [Lamictal]), may cause tourettism. ... Neuroleptic medications with potent dopamine2 (D2) antagonist activity (eg, haloperidol [Haldol]) may cause tardive tourettism, which presents with delayed and often permanent tics identical to Tourette's syndrome. Other causes of tourettism include infections (eg, Creutzfeld-Jakob disease, encephalitis), toxins (eg, carbon monoxide), Huntington's disease, head trauma, stroke, neuroacanthocytosis, chromosomal abnormalities, cerebral palsy, neurocutaneous syndromes, and schizophrenia. " (6)

This information may help put this Tourette's genetic finding into perspective. It is likely that the boy's chromosomal mutation is unrelated to the Tourette's gene(s) that most people with tics have inherited, particularly since no one else in his family has Tourette's, and the SLITRK1 gene was not found in 98% of the study sample of people with tics. Whether or not this finding is related to tourettism and will ultimately be helpful in identifying the gene(s) associated with Tourette's syndrome remains to be discovered.

(1) TSA: Genetic Breakthrough Yields Clue to Tourette Syndrome
(2) TSA: Teenager’s Odd Chromosome Points To Possible Tourette Syndrome Gene
(3) Researchers at Yale Identify a Genetic Link to Tourette's Syndrome
(4) Yale Daily News: Genetic mutation is linked to Tourette's
(5) e-medicine article on Tourette Syndrome
(6) PostGraduate Medicine: Is It a Tic or Tourette's?
(7) Secondary tics and tourettism
(8) Science Daily

Tourette Syndrome - Now What?
TSNW - TSNowWhat - TouretteNowWhat - Tourette's Syndrome Now What?

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