Dear Ms. Rohman,
We are writing in response to your article, “Northwestern Investigators Develop New Therapy for Autism Subtype.” We commend you for raising awareness about the importance of effective treatment for individuals with autism spectrum disorder (ASD) and for highlighting new advances in genetic research. We were very interested to learn more about the research that Dr. Peter Penzes and his team are conducting on the ASD subtype Phelan-McDermid syndrome. Given that Phelan-McDermid syndrome is known to be caused by a specific genetic mutation, it is possible that genetic therapies could help individuals with this syndrome in the future.
However, it is clear that this research is still in its early stages, and drug trials have not yet been conducted with human participants. As of now, most science-based treatments for people diagnosed with ASD involve teaching new skills using behavioral, speech, and occupational therapies. We urge readers to use caution when extrapolating the results of preliminary drug trials conducted with non-human animals to individuals with ASD. At present, there are over 500 distinct marketed interventions for autism, the vast majority of which lack scientific support. This can make it challenging for individuals with ASD and their families to identify those therapies that are likely to be safe and effective. This genetic-based treatment takes a different approach to treating ASD that has not yet been scientifically validated. We look forward to reading future research by Dr. Penzes and his colleagues as they further evaluate this treatment.
One more thing I would like to bring to your attention involving this article is the likening of ASD to a disease that can be managed with medication. ASD should not be labeled as a disease, and therapies for ASD are not designed to “improve disease management.” Rather, ASD is a lifelong neurodevelopmental condition, the disabling features of which can be ameliorated using therapies that emphasize the teaching of new skills.
In closing, we at the Association for Science in Autism Treatment thank you for the time and effort that was put into this article and for bringing this new research to the attention of the public. Our website includes a dedicated page for medical professionals and includes an array of resources that may help medical professionals stay informed about the state of the science with respect to the hundreds of treatments for ASD. We invite you to share this information with your readers.
Sincerely,
Kyle R. Hummel, Extern
Dr Erin Leif, PhD, BCBA-D
Association for Science in Autism Treatment
