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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.
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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. |
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