A Cursing Brain? The Histories of Tourette Syndrome

It is a bit odd to read a book about a topic that I have studied for the better part of 20 years. A Cursing Brain? is well written and meticulously documented. It wonderfully illustrates how the historical succession of causal explanations from early in the 19th century to the mid-1990s has transformed the categorization and treatment of motor and vocal tics and allied symptoms.

Kushner nicely captures the range of symptoms and the hazards associated with efforts to separate tics from obsessions and compulsions. This is a congenial perspective and consistent with the view that these symptoms represent a hypersensitivity to a select, but changeable, set of somatic sensations and environmental stimuli.

Edward Shorter, in his blurb on the jacket cover, states that this is “a book that families with Tourette’s patients will find useful.” Although this may well be true, I can only say that greater attention to the subjective experience of the Tourette sufferer would have made the book even more valuable for these families. For example, in 1980 Joseph Bliss (1) published one of the most extensive personal statements concerning the faint sensory urges that so often precede the performance of tics. An appreciation of these premonitory sensory urges can be enormously helpful for parents and educators because it will encourage them to seek the origins of tics within the complexities of somatic awareness rather than within a willful and conflicted psyche.

The occurrence of tics in bouts is another less appreciated but equally fundamental feature. Preliminary data suggest that this on-again off-again pattern of temporal occurrence is nonrandom and probably fractal in character. The result is a self-similarity in the temporal patterning of tics regardless of the time scale during which the tics are monitored, so that the bouts of tics occur in bouts and the bouts of bouts-of-tics occur in bouts. With longer time scales, such as weeks to months, the waxing and waning of tics reflects the same multiplicative process. As with the premonitory urges, an appreciation of the fractal nature of tics can be enormously helpful for physicians, parents, and educators as they decide what to do in response to the confusing ebb and flood of tics. For example, without a clear understanding of this feature, physicians risk placing their patients on new medications or unnecessarily increasing the dose of medications that will be unneeded in a matter of weeks, if not days.

In contrast, Kushner’s emphasis on the key role of the Tourette Syndrome Association and the rich legacy of Arthur and Elaine Shapiro is appropriate and timely. Arthur was a unique figure in American psychiatry—equally passionate about Tourette’s and the mysteries of placebo response. He is still revered by his colleagues as the first dean of modern Tourette syndrome researchers. Indeed, having been diagnosed by Arthur is generally regarded as a badge of distinction, if not honor, by the older generation of Tourette’s patients. Similarly, the impact of the Tourette Syndrome Association, Bill and Eleanor Pearl, and their daughter-in-law, Sue Levi-Pearl, is difficult to overstate. The Tourette Syndrome Association, with its enlightened determination to empower families and do the best by the Tourette patient, continues to be a model of what an advocacy organization can be. Further, its early emphasis on research and its role in convening international symposia in 1982, 1992, and again in 1999 have done much to advance our understanding of this disorder. Personally, it was in the heady atmosphere of the First International Symposium that my commitment took root. An idealizing mentor and a series of small start-up grants from the Tourette Syndrome Association nurtured this interest. Subsequently, a growing circle of articulate and challenging patients has sustained my commitment.

In several respects, I found A Cursing Brain? illuminating—particularly with regard to the evolving French psychiatric tradition and its continued devotion to Freudian principles. Although overstated, the insistence that “tics become an integral part of a person’s psychic life” (p. 158) rings true. Further, once established, tics, like children, have a life of their own, and environmental and family factors can and do have considerable influence. A supportive family that maintains its idealization of the child despite his or her tics can expect a very different outcome from the family that is deeply embarrassed and responds with punishment and humiliation.

Kushner’s belief in the potential of autoimmune mechanisms to illuminate the etiology of some fraction of tic and obsessive-compulsive disorder cases is also on target. This will be particularly true if there is confirmation of the recent observation of Joseph Hallett and associates (2) that bilateral striatal infusion of sera from a subset of Tourette syndrome patients (previously determined to have high levels of circulating antineuronal antibodies) results in the emergence of motor and vocal stereotypies in experimental animals.

My only major critique of this volume is its omissions. There is no mention of several leading investigators. In the case of the autoimmune story, the groundbreaking contributions of Susan Swedo, Henrietta Leonard, and Judith Rapoport are given little more than a footnote. The genetic studies that have spanned the greater part of the past two decades serve merely as a straw man in Kushner’s account. There is a colorful history there. One could recount a contentious tale and detail the seminal roles of Kenneth Kidd, David Pauls, Donald Cohen, Roger Kurlan, and David Comings, among others.

To write a history of the cursing brain and not consider further the contributions of Edward Bird, Harvey Singer, Christopher Goetz, Mary Robertson, Joe Jankovic, Mark Riddle, John Walkup, Bradley Peterson. and Randy Sallee on one side and Ann Young, Michael Conneally, and Neal Swerdlow on the other is to pass over much of the process and scientific progress of the past two decades. Most of all, to limit the role of Donald Cohen, who first introduced clonidine treatment in the later 1970s (a drug that has since become the most widely prescribed agent to treat tic symptoms [see http://www. cw.bc.ca/mentalhealth/tic/catsdrug.asp]) to a few anecdotes is regrettable. I am biased, as he was and is my mentor. His effective leadership in the Tourette syndrome world has been instrumental in encouraging doctors to listen to patients, inspiring the formation of a formidable multidisciplinary team of investigators, and advising the Tourette Syndrome Association in many of its most successful ventures. The omission of Cohen is all the more remarkable given his longstanding effort to find a middle ground between the occasional dogmatism of psychoanalysis and the reductionistic tendencies of neuroscience. Cohen’s 1982 article (3) is emblematic of his efforts to bridge this divide. Highlighting Cohen’s contributions and his focus on the whole child would have balanced the scales and made for a better read as well as a more accurate historical narrative.

In sum, this is a well-written and engaging story. My version would have been different, but Kushner’s account is one that is well worth reading.