If you weren’t able to listen in to yesterday’s meeting of the IACC meeting, this is a brief summary:

In the morning, the committee members reviewed the draft of the Strategic Plan and “wordsmithed” various additions and revisions suggested by various members of the IACC. These revisions included:

• the use of “may” or “can” in regard to describing the effects of Early Intervention
• mention of “comorbid” and “co-occurring” (medical) conditions
• a lengthy discussion about vaccines and about what science and evidence there is to refute or support a link (it was decided to include the statement “the weight of the available evidence does not support a link between autism and vaccines”—more details about this are below)

Much more of the draft of the Strategic Plan remains to be reviewed and there was talk about the committee reconvening in December to finish reviewing the revisions.

Paula Durbin-Westby of the Autistic Self-Advocacy Network (ASAN) gave a well-received presentation on the need for ethics in autism research. There’s a need for research on the strengths of autistic individuals, she said, and on the positive aspects of difference, and it’s necessary that autistic individuals be fully represented on the IACC.

In the afternoon, there were detailed presentations on Medicare and Medicaid and on waivers (prompting the Chair of the IACC to note that these systems are as or even more complex that various topics in biochemistry); on the pressing need to focus on adult issues (will the employment rate for autistic persons be better in the future?, Dr. Cathy Pratt asked); on the waivers and other programs in Pennsylvania’s Bureau of Autism Services; and on the Autism Spectrum Disorder Pilot Program in Connecticut.

Pamela Beck spoke about her 24-year-old son Brandon Beck and the self-direction model. The Executive Directors of two agencies providing services and supports for adults in California (Dr. Jeffrey L. Strully of Jay Nolan Community Services) and in Maryland (Ms. Emily Homer of VOCA of Maryland D.C.) described the realities and successes of their programs, and of the intense need for staff: What are traits of staff who are really good at supporting people?

After comments from six members of the public, the meeting was adjourned.

There’s more to note—-will end for now with a quote from Lee Grossman, President and CEO of the Autism Society of America:

“”it’s what we hear the community is asking the most for—lifespan services.”"

The National Autistic Society has launched a Creativity Competition, “My life with autism or Asperger’s syndrome.” Autistic adults are invited to express their experiences living with autism; nine winning entries will be chosen, today’s Coventry News notes. Adults with autism or Asperger’s over the age of 18 can enter; the deadline is September 30th. More information can be found at Think Differently.

September 30th is also the deadline to submit a comment regarding the Interagency Autism Coordinating Committee (IACC) Draft Strategic Plan for ASD Research. Feedback is sought from ASD stakeholders—individuals with ASD and their families, autism advocates, scientists, health professionals, therapists, educators, officials of state and local programs for ASD, and the public at large—-about the draft Strategic Plan. The draft Strategic Plan does not include cost estimates for implementation; a workgroup has been formed to advise about the IACC budgetary requirements needed to fulfill the research objectives described in the draft Strategic Plan.

The draft Strategic Plan can be accessed this webpage (scroll down for a link to a PDF file).

Responses to the plan should be directed to iiaccservices@mail.nih.gov ; the deadline is, again, September 30th. The IACC will review the workgroup recommendations at its next meeting on November 21, 2008. Please limit your response to two pages (approximately 1,000 words) and mark it with the RFI identifier NOT-MH-08-021 in the subject line. You will receive an email confirmation acknowledging receipt of your response, but will not receive individualized feedback on any suggestions. The collected information will be reviewed by the IACC, may appear in reports, and shared publicly on the IACC website.

Go here to see the official RFI notice NOT-MH-08-021.

September 30th is a month away but it’s not too late to get started. (And, September 19th is the deadline for submitting a comment to the IACC about autism services.)