I missed watching the live videocast of today's Interagency Autism Coordinating Committee (IACC) meeting because Leo's (really good, details later) annual IEP was held at the same time. But as the IACC meetings are for advising on policy, and as they welcome public input both in person and submitted in writing, I submitted comments to be included in the official public meeting record.
I did this to counter the anti-vaccine autism zealots who would rather put other people's kids at risk from vaccine preventable disease than face the fact that autistic people have always been here. These angry denialist parents tend to mob the proceedings, so as to give their fringe perspectives disproportionate and on-the-record exposure. They need countering.
If you would like to provide reasonable perspectives to balance the belligerent torch-wavers for the IACC's next meeting in July, please send in comments or (even better) ask to give them in person. The meetings take place in Washington D.C. I suspect the IACC members get rather tired of listening to conspiracy theorists, and would like some legitimately helpful input from autistic advocates, parent advocates, and autism professionals.
Here's what I wrote:
Thank you for reading my comments today. My name is Shannon Rosa, and I am the parent of a thirteen-year-old, thoroughly wonderful, autistic young man who does best with 1:1 support. I believe it is the responsibility of all those involved in autism policy to work towards guaranteeing autistic people like my son the support they need to succeed in life, no matter their abilities.For more on what the IACC does, and why it's so important, see my TPGA interview with IACC member Dr. Matthew Carey.
For that reason, I would like to thank the IACC for the positive work it does in advising on autism policy. However, I'd like to speak out about what the IACC can do to help people like my son, and families like ours:
1) Focus on getting supports and resources to autistic people and their families. The CDC's new 1 in 68 numbers for autism prevalence are an excellent opportunity to reinforce the message that autistic people of all abilities have always been part of our society, and that we will all benefit if the proper autism resources are allotted -- whether for housing, employment, respite, education, health care, or therapies.
2) Focus on research that helps the autistic people who are already here. We need to know more about autism and sensory issues, autism and anxiety, autism and co-morbid medical issues, and so on. This should be a higher priority than research into causation.
3) Recognize the agency of autistic people, and include more of them on the IACC itself. I have spent many years working with and learning from autistic adults regarding what my son needs and how he experiences the world. While I support the involvement of parent advocates and autism professionals on the IACC, autistic people themselves should be the majority representation when it comes to advising about autism policy.
4) Finally, stop accommodating pseudoscience. I still keep seeing mentions of vaccine or mercury autism causation theory in the IACC proceedings. Such theories have been debunked repeatedly by legitimate research. Setting aside any time to discuss them is a waste of the IACC's resources, and does not help autistic people.
Thank you for your time,
Shannon Des Roches Rosa
Senior Editor, Thinking Person's Guide to Autism