Focusing the national agenda on autism

There are about a zillion autism organizations, and many of them have at least some lobbying component. Here at 30seats, we’re generally more focused on thinking about direct action, either in terms of directly helping families in their own homes or in their efforts to secure early intensive behavioral interventions (EIBI) for their children (including gaining the proper support under the law). One issue that has been of great interest to us, however, is the notion of improving screening for autism by pediatricians and parents. The goal, as we see it, isn’t simply to identify people so we can cure them (the prospect of a cure being much more remote than a test; cf. cancer) but rather to identify children earlier so that EIBI can be implemented as soon as possible.

Coincidentally, I was reviewing the new White House blog and noted a new section on the President’s agenda. Under the Disabilities section, this fourth point on Autism caught my eye:

Fourth, President Obama and Vice President Biden support universal screening of all infants and re-screening for all two-year-olds, the age at which some conditions, including ASD, begin to appear. These screenings will be safe and secure, and available for every American that wants them. Screening is essential so that disabilities can be identified early enough for those children and families to get the supports and services they need.

This encourages us to provide some additional support and structure to the screening project, and so we’ll start on the following tasks (help is always appreciated):

1. Searching for and posting links to parent and doctor screening models currently in existence and use
2. Creating a wiki page to compare and contrast the current models and solicit comments and improvements
3. Identify relevant economic research on the public health issues regarding screening, such as the cost, the benefits, and their relationship to the QALY for EIBI
4. Drafting proposed legislation/regulations/related materials on the screening models after wiki comments and putting those drafts in wider circulation for comments
5. Presenting drafts of proposed legislation or regulation or other materials to the appropriate public (national or state legislators, CDC, Department of Education) or nonprofit agencies (e.g., AMA)

Please post any other thoughts or ideas in the comments.