By Katie Wright
This is an open letter to all the parents, families, teachers, therapists and others who worked so hard getting the CAA bill passed. Thousands of you called, e-mailed and wrote to your representatives. Dozens of families traveled to DC to meet with their Congresspersons and Senators and personally explain why autism research and services desperately need more funding. Some of you picketed the offices of non-supporters, my parents traveled to DC a dozen times and used every connection they had to make our families heard. It required Herculean efforts to pass a “single disease” bill but our community was relentless and determined.
Today The Interagency Autism Coordinating Committee is responsible for disbursing the millions of dollars in CAA funds. Almost no one who worked for the passage of the CAA was appointed to the committee. IACC is packed with bureaucrats who seem to have a very limited understanding of autism as a disease and autism science. Only Lyn Redwood, who has an encyclopedic knowledge of autism research, of NAA and SafeMinds is representing my child and the hundreds of thousands like him. Only Lyn comprehends the tremendous medical challenges facing our children and urges IACC to fund research that reflects a sense of urgency and purpose.
Most of the bureaucratic committee members could not make a decision about how to get out of paper bag. The talking and talking in circles, the requesting for the creation “blue ribbon panels”, more subcommittees and more outside opinion, goes on forever. Why didn’t Tom Insel just appoint autism experts to this autism committee in the first place? Why are committee members constantly struggling to understand the basics of autism science and looking to others to inform them how to make decisions? They wait and wait and wait to make decisions. Insel wants to wait for more subcommittees, wait for more expert opinion, wait for a new administration, wait until the next meeting- wait to grow old? The only thing IACC is in a hurry to do is adjourn! Then when IACC finally does make an important decision, such as to fund 2% of CAA monies on vaccine safety research, Insel hastily undoes that vote after the meeting.
The public members include Lyn Redwood, who represents 100,000s of families, as well as Lee Grossman of ASA and Stephen Shore, who represent organizations serving people with autism. An ASD Mom, Christine, was appointed because she is Insel’s neighbor. Christine seems like a perfectly nice person but represents no national autism organization and has no scientific background. And finally, Alison Singer. Singer, as you may remember, absconded with AS’s IACC seat and now runs a mysterious autism org in her basement. This bizarre org is led by Paul Offit and a handful of autism ancient history researchers. Don’t our families deserve better than this? Don’t our kids deserve REAL representation from established autism organizations?