IACC Meeting Today, 9am – 4pm

The Interagency Autism Coordinating Committee (IACC) is meeting today from 9am to 4pm, at the National Institutes of Health Neuroscience Center, Conference Room A (6001 Executive Boulevard, Rockville, MD 20892). You can listen in virtually via a webinar:

Use this link:

https://www1.gotomeeting.com/register/446892042

Or, you can attend via conference call at these numbers:

USA/Canada Phone Number: 888-455-2920
International Phone Number: 212-287-1838
Access code: 3857872

The agenda for today’s meeting is to complete the review of the IACC Strategic Plan for ASD Research Strategic Plan. The Strategic Plan addressed six questions:

1) When should I be concerned?
• What are the early warnings signs?
• Are there typical characteristics that are part of an ASD diagnosis?
• How much variation is there in symptoms and severity associated with ASD?

2) How can I understand what is happening?
• What is happening early in development?
• Are there known biological differences that help explain ASD symptoms?
• Are there subgroups of people with ASD that have been identified?

3) What caused this to happen and can this be prevented?
• Is there something in my genetic or family history that poses a risk for ASD?
• How might genetics and/or the environment influence the occurrence of ASD?
• Could an exposure to something in the environment lead to the development of ASD?

4) Which treatments and interventions will help?
• When should treatments or interventions be started?
• What are the medical issues I need to know about?
• How do I know that treatments are both safe and effective?

5) Where can I turn for services?
• What types of services and supports should I seek and where can I find them?
• What is my state or local government doing to provide services for ASD?
• What is the cost of interventions and how will it be paid?

6) What does the future hold?
• What will my family member be like when he/she gets older?
• What is known about adults with ASD and how can I plan for the future?
• How does American society support individuals with ASD?
There’s more about the six questions here.

Review of the plan was on the agenda for the November 21st meeting, which I attended. The committee had to consider each and every revision; many of the revisions were made by Lyn Redwood, Vice President of Safe Minds (= “Sensible Action for Ending Mercury-Induced Disorders”).

Starting here, I live-blogged some of the November 21st meeting. A sense of some of the discussion about revisions to the Strategic Plan is evident here, in an exchange about research regarding a hypothetical vaccine-autism link between Redwood and Dr. Edwin Trevathan, Director of the National Center on Birth Defects and Developmental Disabilities at the CDC.

Dr. Thomas Insel, director of the NIMH, referred to the the detailed rewording of certain sections of the Strategic Plan as “wordsmithing. Many of these revisions were in reference to defining autism as a “biological” and “biomedical” disorder, and to vaccines. Whenever, it seems, these two particular topics were mentioned in the Strategic Plan, Redwood had made revisions and, in many cases, rather extensive ones. Generally the other committee members did not propose such extensive revisions, and generally the other committee members did not speak too much or at much length.

Regardless, midway through the November 21st meeting, the committee was still on the third question and Dr. Insel said that he wanted to complete the revision of the plan, and talked about meeting in December.

I really wanted to hear what the IACC had to say about the full Strategic Plan and was disappointed that they were only able to get not even halfway through the revisions. In particular, I wanted to be present at the discussion about questions 5 and 6, and especially about services and supports for autistic adults. A presentation about services for autistic adults was scheduled in the latter half of the meeting, to be given by Ellen Blackwell, MSW, of the Centers for Medicare and Medicaid Services, and Lee Grossman, President and CEO, Autism Society of America, and I learned a great deal from this, especially about different possibilities for housing for Charlie when he’s an adult.

And one hopes that we can stay focused on addressing the needs of autistic individuals here and today and tomorrow.