One of the more interesting sessions was about the DSM-5 (which is a revised version of the diagnostic manual used to identify mental disorders) because with the newest release (last month!) the subcategories of autism which include Asperger's syndrome and PDD-NOS are no longer separate diagnosis but have been included in the larger umbrella designation of "Autism Spectrum Disorder". There has also been a new and very controversial separate diagnosis of "Social (Pragmatic) Communication Disorder" added to the manual, which is not considered autism but a communication disorder. Many, many parents and patients are anxious about what these changes will mean for insurance coverage and services. The experts at Stanford were optimistic but the truth is, only time will tell. I should add that the medical and educational qualifying criteria for autism are different, so IEP-driven services (which are based on the student's areas of need, not their disability) should not change. The main concern I heard is from parents and service providers who rely on health insurance or agencies such as a Regional Center for services. Advocacy, as always, will remain the most crucial intervention for any individual with special needs.
Another session focused on transitioning to postsecondary living, which is basically life after high school. National data was presented on what individuals with autism are doing after leaving high school, and the results are distressing. The data is interesting, and included students with disabilities other than autism. It can be found at the National Longitudinal Transition Study-2 website. Basically there is a big drop-off of services and corresponding growth after students leave the public school system. Researchers believe that we need to be focusing on the transition to adulthood at a much earlier age, and we need to be providing ample opportunities for students to practice real-life skills outside of the classroom as much as possible. The challenge is, of course, balancing academic demands and the need to directly teach and practice social and independent living skills. It is a puzzle that no one has yet put together, but as more data is collected, more policy makers will see the need for programs to support transitioning to adulthood and hopefully that is when funds will be made available. Researchers project that this change will happen within the next 10 years.
We have learned a great deal in the past decade about how to help teens and young adults with autism. Unfortunately, the public school system is not particularly innovative and it often takes a great deal of work to make creative and effective programming work at a large comprehensive high school. In large part, that is the challenge of my profession as a SPED teacher in public education. I left feeling positive that my philosophies and practices align with those of the leaders in the field, but concerned that we are not keeping pace with the needs of our adolescent population with ASD.
Between sessions, I walked around the gorgeous Stanford campus. It was a scorching, crystal clear 95 degrees. The majestic old buildings gleamed among carefully curated gardens shining like precious gems. I also had a chance to pop into the art museum and some sculpture gardens. Full size versions of my photos can be seen on flickr.