Hi all!
I’m back from a very very very (did I say VERY?) hot trip to NYC! Success on several counts! A wonderful rendezvous with John Foxe and Sophie Molholm, members of our Scientific Work Group who have moved to Albert Einstein College of Medicine, Yeshiva University where they have been given an amazing new suite with all sorts of equipment and space to study multisensory integration. We are just so delighted to have them on the Sensory Processing Disorder Scientific Work Group! I gave a presentation that was supposed to be for a few folks in the lab and turned out to be for about 100 people at the Children’s Evaluation and Rehabilitation Center which included many physicians. There was a very warm reception to the information.
Second, the Science Writers in New York (SWINY) group met. I arrived completely drenched from a sudden rain shower in which I was trying to hail a taxi! The talks were supposed to be 10 minutes long. I showed a 1-minute video to set the tone of the “story” and then about 15 slides of our research and findings from members of the Scientific Work Group. Can you imagine condensing the incredible amount of information we have gathered into the 9 remaining minutes?
The audience was full of questions, and we had a lively discussion with Dr. Shaffer, who is Professor of Psychiatry and Pediatrics, and Chief, Division of Child and Adolescent Psychiatry, Columbia University Medical Center and even more important to our mission, chair of the Disorders in Childhood and Adolescence Work Group (e.g., dealing with ADHD and related disorders) for the DSM-V. He was talking mostly about what the Diagnostic and Statistical Manual (DSM) is all about and the disorder he is trying to see included which is related to non-suicidal issues in teens (basically cutting and other self-mutilation activities).
We also were very interested to hear from Dr. Andy Shih, who is Vice President of Scientific Affairs at Autism Speaks, about the reasons Asperger’s is suggested to be withdrawn in favor of a more general category called “Autism Spectrum Disorders.” Finally, we were joined by Jennifer Brout, a psychologist and mother of a child with Sensory Processing Disorder, and her daughter, Emily, who talked in public for the first time about what SPD meant to her life.
Dr. Shih was very understanding and supportive about our work and discussed the importance of continuing our advocacy for SPD. Dr. Shaffer explained that in the last version of the DSM (DSM-IV) decisions were made based on a model described by Robbins and Guze (see article). He thought we might be going by that older model. He said that for the DSM-V, however the model was different and based on a more global approach. He was giving us advice about what the committee was looking for in applications for new conditions, which he noted were primarily global clinical behaviors that were different than other conditions. He indicated that biological factors were not as important, but I’m not sure that reflects the thoughts of the whole committee. I noted briefly the types of behaviors that children with SPD (sensory over-responsivity and sensory under-responsivity) have, and he seemed interested. I was glad to see him pick up a copy of all the journal articles that Ann Marie (from Science Friday) had copied for the crowd.
All in all it was a very successful trip and a great opportunity to meet with leaders from the DSM committee and from the Autism community!
[1] Robins E. and Guze S.B., (1970). Establishment of Diagnostic Validity in Psychiatric Illness: Its Application to Schizophrenia. Am J Psychiatry 126:983-987 doi: 10.1176/appi.ajp.126.7.983
LUCY JANE MILLER, PhD, OTR, is the founder and executive director of the Sensory Processing Disorder Foundation, a world leader in research, education, and advocacy for Sensory Processing Disorder, a neurological condition that disrupts the lives of many children and adults. Dr. Miller also directs the STAR (Sensory Therapies And Research) Center where children and adults with SPD are assessed and treated.