No, I am not involved in the military, I do not have a family member serving in the military, and in all honestly the Department of Defense rarely crossed my mind. The only time I feel “militaristic” is when I have had enough of idiotic comments from certain people at NIH and I daydream about marching into their offices, grabbing a few people by the lapels and telling them to stop wasting our time and money and fund some innovative science for a change.
However I want all autism families to know that the leaders of Department of Defense’s autism research program really get it. They are our allies in the fight for our children, rather than just another obstacle. The DOD strongly believes in stakeholder involvement.
The DoD actually WANTS parents’ opinion regarding their research choices. They INVITE a diverse body of Moms and Dads in sit on their grant committee panels. The DoD ENCOURAGES parents to fully participate in all scientific, clinical and treatment discussions. DoD EMPOWERS each stakeholder as a fully voting members of grant committees. The DoD ASKS families what they think of their previous research work and how they can better respond to the needs of people living with autism NOW.
OK does that blow your mind or what? I had to see this to believe it but after participating in one of the DoD’s annual grants review committee, I can promise you that this is all true.
While we have to battle with other governmental agencies and some autism organizations for minimal stakeholder involvement, the DoD welcomes our opinions. While IACC appoints a bizarre collection of psychiatrists, friends or random ASD parents representing no constituency, as public members, the DoD invites people from all major autism organizations to participate. There is none of staleness or groupthink that emerges when the same people sit on a research committee for years and years on end. Non-scientist parents comprise at least 20% of each grants reviewing committee! People rotate every two years in order to ensure the representation of diverse points of view!
I want to thank the DoD for taking a chance on working closely with stakeholders. All other agencies and federal autism research committees should stop what they are doing right now (Dr Cindy Lawler), call at the DoD and ask how to implement this autism research program.
The continuation of the DoD’s autism research committee depends on families making our support of this program known to our Congresspeople and Senators. Please take a moment and let your representatives know how you feel about the inclusive and innovative government funded autism research program.
Katie Wright is Contributing Editor for Age of Autism.