This was originally posted 4/17/11 on Odd Ducks Autism. Advocacy. Art.
|Evidence and Artifacts: 1 in 110|
On Monday, we left Logan at 5:30 am, and drove to the campus of Utah Valley University in Provo, UT. We installed 1 in 110 in the main registration and poster area, had a nice little breakfast together in the student center and dropped Maddie and Caleb off at Kids on the Move, a family resource center providing respite care. Kids on the Move had a super caring staff and lots of great OT toys in a gym-like room, what an awesome place! The kids had a blast and we enjoyed the break.
|Jalynn Prince and Christopher Gauthiér|
The day long event featured many valuable presentations. As parents, we especially resonated with the key note address by JaLynn Prince, Founder and President of Madison House Foundation. Her presentation’s anecdotes made us laugh and cry at the same time – a condition well known to families affected by autism. JaLynn Prince is a remarkable advocate for adults with autism, a professional photographer and a champion of the Arts as an avenue for charitable activity. We enjoyed our visit with her and are honored by her interest in Evidence and Artifacts: 1 in 110.
|Dr. Valerie Hu|
Dr. Valerie Hu shared extraordinarily hopeful research illustrating the *”need to focus studies on subgroups of individuals with similar symptomatic and behavioral profiles in order to reduce the “noise” in the biological and genetic data that is inherent in this heterogeneous population.” Rather than rely on my fuzzy understanding of the role of epigenetics in the expression of gene characteristics, I have included this great video of Dr. Hu discussing the implications her research. It’s fascinating and profoundly important. The research will be published later this month and I will try to post a link when it becomes available. *Description taken from Symposium Program Guide – Obviously 🙂
After her presentation, Dr. Hu asked me to share this link The George Washington Study: Assessing Medication Responsiveness in Persons with Autism Spectrum Disorders (ASD) She is looking for parent and clinician participation to help focus research efforts. Please consider participating.
I also had a delightful conversation with Dr. Lawrence Kaplan, President of US Autism & Asperger Association about the history of biomedical intervention of autism and it’s successes and failures. Truly, we met so many amazingly passionate parents who have focused their energies to become autism advocates and professionals. It is somewhat healing to see others who have not allowed their fierce determination to be labeled as pathological by a jaded and defensive system.