Sadly, I [Jan] couldn’t be with friends at NRHA this year!
Instead, I participated in a meeting sponsored by the Maternal and Child Health Bureau: an Expert Workshop on Autism Intervention Research in Underserved Communities: Research Priorities and Methodological Challenges. The workshop was extremely informative: really bright investigators who are working to change outcomes for children with autism spectrum disorders.
Autism is a challenging condition for parents at any economic or geographic level. Most of the researchers present, while dedicated and caring persons with their hearts in the right place, were located at urban medical centers. Hence, my role (since I’m not an expert in autism) as the missionary for rural. The group as a whole seemed to blink when slides illustrating the distribution of pediatricians around the country were shown. Even good-hearted people just don’t realize how under-resourced rural America is.
One very bright note: the innovative work reported by Susan Hepburn of the University of Colorado. Dr. Hepburn is part of a team that has been testing off-the-web video conferencing software (specifically, ooVoo) to provide therapy for rural kids with autism. Terrific stuff: cheap software (really cheap: free download, but has security equivalent to bank transactions), the format seemed to appeal to the adolescent patients, and really really rural kids were getting highly specialized care.
Kudos to all of the investigators for their hard work, and to MCHB for pulling the meeting together.