IACC update, since 2010
|NIMH Director Tom Insel|
IACC has 23 members. It's a diverse group -- federal appointees, parents, autistic advocates, professionals.
The IACC mission is to:
- Provide advice to the Secretary of Health and Human Services regarding Federal activities related to autism spectrum disorder.
- Facilitate the exchange of information on and coordination of ASD activities among the member agencies and organizations.
- Increase public understanding of the member agencies' activities, programs, policies, and research by providing a public forum for discussions related to ASD research and services
Established goals in seven critical research areas
Plan gets updated every year, has 78 objectives altogether 16 new ones in 2011.
IACC doesn't fund research, it's an intellectual mandate. Encourages each agency and org to cooperate with the strategic plan. We try to point the field in directions it hasn't gone yet.
NIH has been kept at flat funding since 2003, but autism has still been a growth area for research and investment.
The Recovery Act and Strategic Plan led to: less emphasis on screening and basic biology, more on risk factors, services, and infrastructure. But recovery act money ran out in 2010, will not be renewed,
Current budget (april 2011) led to more cuts in NIMH budget, so won't be a huge year for NIMH funding. So, looking to public/private partnerships to make up the difference.
Recommends looking to NDAR: National Database for Autism Research, 22,400 subjects, 120,000 records shared -- and will ramp up as clinical records provide more phenotypic data.
Insel also recommends The Next Frontier: One Mind for the Brain initiative launching later this month via Rep. Patrick Kennedy.
We also need to put more information into supporting adults with autism.
The question we all need to consider: How do we work together, and focus on making the research have the most impact for the people who need it?
Can browse all the information above in detail through publications at: www.iacc.hhs.gov
Personal note (via a question from the audience by Steve Silberman): Tom Insel also no longer uses the Low Functioning/High Functioning descriptors, since many "non verbal" folk communicate through AAC etc.
Program slides, for more specific info (thanks to John Elder Robison for loaning his photo adapter):