SafeMinds Finding the Truth January 2009 #1

Unity of Advocates Noted at Latest Interagency Autism Coordinating Committee Meeting
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Action is needed by January12, 2009!

During the most recent meeting of the Interagency Autism Coordinating Committee (IACC) a substantial amount of the strategic plan was discussed and adopted. However, equally significant in my mind was the display of unity throughout the day by the advocates who comprise the public member portion of the committee.

Public advocates Lyn Redwood, of SafeMinds, Dr. Stephen Shore, self advocate, and Lee Grossman of Autism Society of America spoke in unison along with Alison Singer, of Autism Speaks and Christine McKee, parent of an ASD individual also voting similarly for the majority of the day. It is hard to describe the power held in these hands, particularly when raised together. Toward the close of the day, Lyn Redwood noted that during many critical votes on research initiatives these five hands went up against those representing federal agencies. Dr. Thomas Insel, Director of the National Institutes of Mental Health (NIMH), acknowledged that while it was true that the advocates were of a common mind set, the federal agencies were voting against the noted objectives due to feasibility and to be consistent with what could reasonably be accomplished. Many agency heads nodded in agreement with this summation of their actions.

The reality, however, is that the monies appropriated via the Combating Autism Act (CAA) for the creation of this much needed research agenda was born out of the bold consensus and tenacity of the autism community, not federal agencies recognizing the urgency of this crisis. Our community is unlikely to settle for the agencies' view of reality. Community efforts to get CAA passed were meant to purchase more than the reality of current efforts and we understand that the research agenda must be bold in pursuing answers that will lead to treatment, services and recovery.

While agency views were not always in line with those of the advocates, there were also many areas of agreement and where progress was made, including the acknowledgement of autism as a whole-body disorder with inclusion of accompanying medical conditions language. Even more significant was the addition of the investigation of vaccines, vaccine components and multiple vaccine administration in autism causation and severity through a variety of approaches, including cell and animal studies, which may identify subpopulations in humans that are more susceptible to adverse vaccine events.

Concerns that remain as the next meeting approaches are the adoption of proposed introduction language that adequately expresses urgency and prevention in addressing the autism crisis, expansion of the budget to better reflect monetary outlays necessary to accomplish mission goals and interpretation of funding identified in the CAA as a floor, not a ceiling, in the budgetary process. SafeMinds has been diligently spearheading organizational consensus statements on the community expectations for the research agenda. Much gratitude is owed to these organizations for their participation in these efforts. The consensus created by these efforts was on proud display during the December meeting, putting Federal agencies on notice that we plan on boldly going where science has not gone before to get answers to autism's riddle.

Please support the ongoing community consensus and email the IACC with your support of the objectives below, as we near the end of this stage of the research agenda planning process.

The budget must, as a minimum, reflect spending objectives defined in the Combating Autism Act;
Adoption of language for the Strategic Plan's Introduction that embodies a sense of urgency and the critical need for the government to apply the resources to address a crisis situation and the adoption of oversight as submitted by IACC member Lyn Redwood;
Ensure accountability with the adoption of a review and evaluation mechanisms, such as an Autism Advisory Board and a Department of Defense grant review model;
The convening workgroup in January 2009 to focus on additional enhancements to the Strategic Plan that ensures the integral participation of the diverse community representing families and individuals with autism.

To register for the meeting via webinar, or in person, visit the IACC website. To take action and contact IACC members, send your email to IACCPublicInquiries@mail.nih.gov and include in your statement a request that all IACC members receive a copy of your email prior to the meeting scheduled for January 14th.