Friday May 18, 2012

The morning started with news from IACC from the Interagency Autism Coordinating Committee (IACC) .  Susan Daniels described the role of IACC to advise HHS Secretary, establish research priorities, monitor federal activities, analyze research trends, and communicate advances.  Alison Singer of Autism Science Foundation is a member of the IACC.  For more information contact

In 2010 the combined federal and private funding of research in autism totaled $408 million from 18 funding sources.  Federal = 82% and private = 18%.. NIH has $217 million of that.  The IACC recognizes the need for increased focus on lifespan research.

To accomplish the IACC goals, researchers need to contribute to the National Database for Autism Research (NDAR).  Currently there is data on 25000 subjects. There is a need to build a culture of data sharing in the research community.  No longer “my data” but data mining.

The keynote wad delivered by Bernie Devlin, a geneticist from University of Pittsburgh School of Medicine.  It was a very complicated and technical keynote about genetics research.  (For the purpose of SEO I am throwing in the key words:  de novo mutation, duplication deletions, copy number variants (cnv), common variants, and rare variants.  Look them up!)

My take away is that there is progress but that we should see the discoveries from genetics research increase exponentially between 2012 and 2015.  More gene identification and more potential drug treatments are expected.  The momentum for discovery is huge and can be attributed to the pooling of data and enabling collaboration, and increases in funding.  I was glad to hear that research is going on in other countries, such as Beijing, China where there are 300 families participating in genome sequencing.

I took a break from the presentations and went to the exhibit hall.  Poster sessions are where a researcher has summarized her study onto one chart (hear that IBMers – it is possible when the chart is 4’ x 3’).  The hypothesis, the study structure, and the outcomes are neatly presented and the researcher stands next to her poster and people come by to hear her talk about her study and ask questions.  Researchers get a certain time period to host their poster.  They are tacked on screens and there are rows of these screens (think of a trade show but instead of table surfaces the surface is a vertical wall).

I walked around and visited about a dozen posters.  One was about teaching sexuality to teens with ASD, and the researcher was from Holland.  Another was about the use of mindfulness techniques and the effects on teens with ASD.

A lunch session was set up by the “Stakeholders” committee (stakeholders are the people who will benefit from the research such as people with ASD and their parents).  There were about 100 people in attendance and I joined a table with some of the luminaries in the autism advocacy world including the writers from The Thinking Person’s Guide to Autism : Shannon Rosa, Jennifer Byde Myers, and Carol Greenburg;  and Stephen Shore, and Beth Malow

Speakers included:

  • Peter Bell, EVP at Autism Speaks (founder of CAN)
  • Dr Beth Malow, sleep expert
  • Matthew Goodwin, psychologist and chair in innovative technology for autism initiative
  • Stephen Shore, self advocate and professor at Adelphi University (and I learned that he grew up in Oak Hill Park, a section of Newton, just around the corner from my childhood home.)  He said he was pleased that people with ASD were being included in the research in meaningful ways
  • Debbie Hilibrand, parent advocate and philanthropist, (trustee of NAAR)
  • Marjorie Solomon, psychiatrist at the MIND Institute, spoke about friendship in teens
  • Dr Susan Swedo, from NIMH and has been the chair of the DSM-V work group for neurodevelopmental disorders.  Dr. Swedo’s voice cracked as she said how upset she was from the media criticism of her committee’s work on revising the definition of ASD.  She said the changes were in no way intended to exclude people and were not in response to the increase in diagnosis.

Back at the sessions I heard about a study on the impact in the family of having a child with ASD.  Here are a few stats about the stresses in the family and how the mothers and fathers reported their impact:

  • Difficulty managing the child’s behavior:    40% Moms, 25% Dads
  • Exhaustion:  40% Moms, 17% Dads
  • Feeling of loss:  31% Moms, 16% Dads
  • Restructured employment:  25% moms, 7% dads
  • Negative impact on career:  22% moms, 15% dads
  • Supportive employer:  5% moms, 3% dads

Is anyone surprised?

At the end of the day I went for a drink with the “Thinking” women and met another icon, John Elder Robison, who wrote Look Me In The Eye  and blogs

I’ll be up early for Saturday 7 am sessions and so off to get some sleep.