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Part One

Column by John S. Hilkevich, M.A

Progress Since Publishing Our First Book

Innocent or guilty, few people would venture into a court proceeding, even for minor litigation, without an attorney. Even judges with a long history of law practice hire attorneys, or legal advocates, when faced with litigation. They, perhaps more than most, know that navigating a legal system that is basically adversarial and essentially complicated is best done with a team to avoid convoluted and detrimental outcomes. The mental health system has its own adversarial structure, given "managed care" providers, economic constraints to proper care, the multiplicity of medical models and often conflicting ways in perceiving patients and their needs. Take a page from the legal advice book: Enter into the mental health system with a different kind of advisor, a therapeutic advocate. This very need spawned the formation of the National Tourette Syndrome Association, which has ably advocated for Tourette syndrome persons and their families as a community, addressing the medical, mental health and educational professions as well as the general population. The role of "Therapeutic Advocate," however, is still an important idea to proliferate and establish for persons with Tourette syndrome, Obsessive-Compulsive Disorder, Attention Deficit Disorder and other neurologically based conditions.

In the Foreword to our first book, Don't Think About Monkeys, world-known neurologist Oliver Sacks, M.D. observed, "Some of the narratives in Don't Think About Monkeys are from young children or adolescents -- the first generation, as the editors point out, to get a prompt diagnosis of Tourette syndrome. Other accounts relate what used to be all but universal -- a delay of ten or twenty or more years, years of deep uncertainty, and sometimes accusations, before the diagnosis was made." The editors, Adam and I, perhaps should have emphasized that our children marked the first generation to be able to avail itself of the tremendous gains and dissemination of knowledge and of better informed doctors and psychologists. Indeed, far more adults and children are being properly diagnosed (in the United States and in only a certain few other countries) and treated/managed today. However, we are still far behind where I thought we would be since the publishing of Don't Think About Monkeys in 1992.

In my private practice, I see a number of persons whose behaviors are at least partially shaped by neurology and brain biochemistry. Of the ones who clearly exhibited symptoms of Tourette syndrome or OCD, every one of them had entered the counseling relationship with me with a misdiagnosis from their previous doctor. I took upon the role of therapeutic advocate for them and their families, consulting with psychiatrists and neurologists who I knew were familiar with Tourette syndrome and OCD, walking them through the process of reevaluation, and secured the proper diagnosis and treatment plan, to their great relief. The physicians, family and I then "journey" with the patient as a team, each of us addressing a different aspect of the patient's personhood: Pharmacology, personal growth, socialization, education, work, relationships, stress management, parenting, conflict resolution, life goals and the spiritual dimension all enter into the treatment plan.

On occasion, treatment prerogatives and family/social circumstances were such that I recommended the client's voluntary admission to an in-patient residential or psychiatric facility. My experiences with such treatment centers in caring for Tourette syndrome or OCD clients tremendously reinforced my resolve to not permit or refer my client for admission without the facility's treatment team including me in the plan and interventions. This resolve is not based on professional arrogance, for my colleagues and I have much to learn from one another, and I am forever a student. Rather, I was astounded at the prevalent practice in even highly reputable facilities of loading up clients with medications within days of admission and watching them change their behaviors, moods and cognitive processes and the staff accordingly readjusting diagnoses and completely missing vital issues in the clients' life. I have been also equally astounded at the number of times that I have pointed out something on the client's behalf (to which I am privy after months of working with the client versus the facility's one week) and garnering the response, "Oh, ok," resulting in the staff radically altering treatment plans and medication regimens on the spot. On one hand, I am grateful that these practitioners had the ears and humility to carefully consider another's input and that my reputation is such that my input carries weight and that is the strength and efficacy of an integrated team approach. On the other hand, this frequent reshuffling of diagnoses, medications, and interventions in response to a few comments from me seems to reflect a lack of focus or even professional confidence in what these treatment teams were doing with and to my clients. That worries me. It also underscores the importance of finding a therapist with a reputation of being familiar with and having treated these neurological syndromes and adopting him or her as not only the primary treatment practitioner but the therapeutic advocate as well if one must venture into the medical or educational world for additional services.

What to look forward to in the remaining parts of this column series: Anecdotes and case histories illustrating the points made in the introduction; the overuse of the ADD and ADHD diagnosis; school abuses; the differences between addiction and compulsion and disabilities in general and how their treatments are very different; genetic versus environmental; changing neurology with psychotherapy; the role of medication in treatment (when to and when not to); "alternative" treatments; and more.

JOHN S. HILKEVICH M.A. is director of Integrated Counseling Services and can be reached for consultation at COUNSERV@AOL.COM. He is co-editor of Don't Think About Monkeys On-Line Magazine and is preparing the second volume of the book series, some of which will be 'previewed' on-line and some of which will be new to the next book.

MONKEYS INTERACTIVE: Do you have a story to tell regarding Tourette Syndrome treatment and a miracle or crisis with an in-patient hospitalization? Drop us a line at SELIGMAN@SONIC.NET. Brief responses will be listed in our Reactions column - longer stories may be picked for future issues.

In October, 1997 we will be re-printing an article from the Southern California TSA newsletter by Donald Imbler describing a nightmarish HMO abuse situation involving his daughter with TS.