The TSA frequently receives reports from individuals or practitioners that they or their patients have uniquely benefited from a new or different treatment for the symptoms of Tourette syndrome or co-occurring conditions. Although these reports can vary, they tend to have several features in common:
1. The practitioner or patient reports substantial and unexpected benefits.
2. The practitioner or patient believes that the approach they have used is responsible for all the benefits that are observed.
3. Those reporting benefits often report long histories of failed attempts using routine or even expert medical or psychological care.
4. The approach described is not part of the best practice of medicine or psychology.
5. They report their experience to alert others to potential benefits because the best practice of medicine has neglected such approaches or even actively suppressed them.
6. They are skeptical of scientific research because they assert it takes too long, is too difficult, and delays help for people who are currently suffering.
All would acknowledge that our treatments for TS are far from perfect, so it is understandable that people may be attracted to new or alternative therapies. However, while some new assessment and treatment advances may work for some individuals and could become tomorrow's best practice of medicine, there is also a long and documented history in medicine of treatments that, while initially successful, turn out to be not as good as expected when rigorously evaluated. In addition, there are unscrupulous individuals who prey on peoples' fear of current medical practices and hopes for miraculous, low side effect, treatments, yet they promote treatments that are not effective. Further, such treatment can be harmful as they are often unregulated, are of questionable purity, can have unanticipated side effects, or delay utilization of effective treatments, thereby prolonging suffering. Since strong sales practices and rhetoric can be very persuasive to those who are suffering and feeling powerless, we encourage people with Tourette syndrome and their families to become sophisticated consumers of medical knowledge and to think critically about claims for new or miraculous treatments.
The TSA's longstanding position is that we support the development of new and innovative assessment and treatment approaches that are rigorously evaluated using state of the art scientific methods. When we receive anecdotal reports about new treatments, we are grateful for those who have benefited but we do not evaluate these claims, nor do we support, endorse, or recommend these new approaches to others. Rather, we encourage practitioners of these methods to submit proposals through our research grant process for independent evaluation by scientific experts. We also have a standing offer to help practitioners design the evaluation of their assessment and treatment methods so that they have a better chance of passing widely accepted scientific standards.
The TSA has published a brochure on alternative therapies for individuals with Tourette syndrome, and we would recommend this as a useful source of further information on this topic.