I like to use the metaphor of the road to describe life with Charlie—-life raising an autistic child. Every day we move on in a long journey together. Once I carried him, first inside me and then in the crook of my left arm and on my hip, or Jim raised Charlie up high on his shoulders and then (because Charlie kept growing) piggy back. Then Charlie walked beside us hand in hand (sometimes straining our arms when he wanted to this way and we had to go somewhere else). He rarely holds my hand now and stays beside me, and sometimes even walks on ahead, and I find myself following his lead.
Yesterday, Charlie was the reason I found myself taking the 5.12am train down to Washington, D.C., and in the rotunda of the Ronald Reagan Building and International Trade Center, to be present at the Interagency Autism Coordinating Committee (IACC) meeting. The members of the IACC were seated at long tables in the middle of the room, and members of the public around them. At my right was a podium and a screen and to the left sat Dr. Thomas Insel, Director of the National Institutes of Mental Health (NIMH), Secretary Mike Leavitt of the US Department of Health and Human Services, and Dr. Elias A Zerhouni, Director of the National Institutes of Health (NIH). The majority of the members of the IACC are from federal agencies; others are from autism organizations (the Autism Society of America (ASA) and Autism Speaks), as well as Safe Minds, which argues that there is a connection between mercury and autism, as well as individuals such as autism self-advocate Stephen Shore (who emphasized to include more autistic persons on the committee and in research; see this profile of Canadian Michelle Dawson, who is autistic and who has contributed to research published in scientific journals such as Brain) and Christine McGee, who has an autistic daughter and supervises her home therapy program.
Secretary Leavitt began the meeting on a personal note by asking each member of the IACC to explain how they got interested in medicine, in disabilities, in public health, in autism. Notable to me was what Dr. Edwin Trevathan, a pediatric neurologist and the director of the CDC’s National Center on Birth Defects and Developmental Disabilities, had to say: He noted that his mother was a special education teacher and that autistic children and children with developmental disabilities were often at their house. Ellen Blackwell, a health insurance specialist at the Center for Medicare and Medicaid Services, noted that she has a 20 year old son with autism.
The personal was in the background throughout entire day, even though the focus of the presentations was on research. Each member of a federal member explained what their agency has done or does in regard to autism; the non-federal members spoke about their organizations’ work. Dr. Yvette Janvier, a developmental pediatrician at Children’s Specialized Hospital in Toms River, New Jersey, noted how many families she sees and how long it can take to get a child diagnosed; she also spoke about a plan to train nurse practitioners to assist more in the diagnostic process. Dr. Joyce Y. Chung, the Autism Coordinator of the NIMH and the parent of an autistic child, described the planning process for creating the Strategic Plan for research on autism. (More on this below.) Presentations by scientists for different private organizations—-Autism Speaks, the Simons Foundation, and the Boston-based Autism Consortium—followed, and then statements from the public (including mine, statements by two mothers of autistic children, Kathy Neas of Easter Seals, Ari Ne’eman of the Autistic Self-Advocacy Network, and John Erb, who talked about a possible link between MSG and autism).
I’ll write about more about what was said and happened later, but wanted to note the part that needs YOUR contributions. The planning process for the Strategic Plan involves creating workgroups, each covering a different domain of research (treatment, diagnosis, risk factors, biology) and more meetings of the IACC in March and May. Dr. Chung’s team will start writing the report in April and, in June, send the plan to the Department of Health and Human Services. There was a lot of discussion about what was included as “treatment”: Biomedical treatments only? What about psychosocial and educational treatments? What about research to deliver supports and services, to implement the findings?
Dr. Chung emphasized that the plan is created will be a sort of “Version 1.0″ that will be in need of yearly revision. It was also underscored that the Strategic Plan is not a “living document” unless there is a plan to implement it. Your input is needed about what topics you think need to be addressed: The NIH has an autism listserv that you can sign up for, so that you can receive updates about the IACC and the planning process for writing the report.While there was a lot of talk about policy and procedure and such bureaucratic details, everyone was highly conscious that autism is an issue that people have deeply felt personal concerns about. I think a lot of us feel that we are isolated and that are voices and worries are small and readily overlooked. When I gave my statement, I was sitting next to Dr. Insel and every member of the IACC was looking directly at me. It meant a lot to me to say Charlie’s name before this group and to let them know about the concerns that I have every day in teaching Charlie and being his mother, and about the concerns, fears, and hopes that everyone here writes about.
I know I often feel the road Charlie and Jim and I are on is so lonely, and that it is just us on it, trying to detect the bumps and potholes, the ditches and the mud puddles and to make things a little smoother. But in truth there are many of us walking that same road, maybe not always agreeing about how to deal with obstacles, but trying to move forward, move onward.
When I spoke I noted that I named this weblog Autism Vox because vox means “voice” in Latin as in the phrase vox populi, “voice of the people.” Hope you join the NIH’s autism listserv and voice your views on autism research.