Kevin J. Black, M.D., one of the staff physicians at the Washington University Movement Disorders Clinic, is on the TSA's Physician Referral List. Some of you know him from our support group meetings. Here he answers some questions from our readers for general information. Since each person is different, you will want to contact your personal physician for specific medical advice.

1. Q: Have you read Susan Hughes's book What Makes Ryan Tick? (Members of our
support group feel that it is must reading for those in the medical field working with families
with Tourette Syndrome.)
A: I borrowed a copy at the MOTSA meeting in February. It was very interesting.
Most of all, the book really takes you into the life of one parent. Her son Ryan is described
as having severe symptoms, including tics, obsessions, compulsions, poor attention, and
marked difficulty suppressing socially inacceptable impulses, including violence. I think the
book would be most valuable giving people an idea of how challenging it can be at times to
raise such a child. On the other hand, there is good balance as to some of the positive
aspects. For instance, I really appreciated the author's introduction of Ryan with 3 pages of
sincere praise (pp. 7-9). The book also raises some thought-provoking questions. There are 2
main points I would make from this book. (1) The question of whether a child is responsible
for his behavior is usually the wrong question. (2) Behavioral interventions for children as
complex as Ryan will probably require extra expertise and patience.
(1) In dealing with ordinary situations and ordinary children our society often tends to
focus on punishment for misbehavior. However, when someone isn't fully responsible for his
behavior, punishment seems inappropriate. On the other hand, there is the tension of having to
live in the real world and not have people hurt or perhaps even unduly annoyed by abnormal
behavior. This conflict comes up a number of times in the book (e.g. pp. 17, 65, 89, 101, 105,
140, 231, 236, 247). In my opinion trying to figure out whether a person is responsible for a
given action in such a complex situation is extremely difficult. Besides, it's an issue for which
doctors don't have all the answers. What's usually more important is a different question
that's usually easier to answer: What works?
If telling someone to stop doesn't work, then it's irrelevant whether it's their fault;
you've learned that telling him to stop won't help. If it does work, it still doesn't prove it's
their fault. Even if you think someone is at fault, will punishment help? (Usually not.) Or will
you get more results with rewards for good behavior, or with specific medication?
Compulsions probably aren't anyone's fault, but does it help more to let them happen, or to
prevent them (p. 89)? These are the more relevant questions. I have appreciated many of the
wise comments from parents at the MOTSA support group meetings on this topic and look
forward to more.
(2) I think the biggest value of the book for physicians or psychologists is the clear
demonstration by Ms. Hughes that ordinary behavioral treatments which may work for
ordinary children may not work for a child who is as symptomatic and complicated as Ryan
was. She lets you clearly understand the frustration of trying one's hardest to follow well-
meant advice from teachers, counselors, psychologists, and physicians, and then having it
backfire. Plus, much of the advice seemed to conflict, as she summarizes on p. 37: "we were
damned if we did and damned if we didn't."
I don't think this implies that behavioral treatments don't work for ADHD or OCD or
tics or violence. There is clear evidence to the contrary, at least for ADHD and OCD. I do
think Ryan's story shows how much training, observation, planning, and patience (on the part
of everyone) may be needed before a behavioral treatment plan has a chance of succeeding.
Here are a few other random comments on the book:
As many of you have said, "Tics aren't the problem. We can live with the tics. It's the
ADHD, OCD and all the other behavioral stuff that causes all our trouble" (p. 5).
Pastors can sometimes help (p. 69).
About insurance equity for psychiatric illness (p. 286): Her comments are right on!
Finally, never let somebody do research on you without your prior informed consent
(p. 17). This is considered unethical.

Kevin Black MD