A Seat at the Table: Championing Severe Autism in D.C.
It has taken my husband, Michael, and me a couple of days to recover from four plane rides and three days of navigating D.C., but we are so glad we seized the opportunity to do it.
Individuals with severe/profound autism and their caregivers/families are so often left out of the conversation and robbed of a seat at the table. We are isolated and forgotten, even though 27% of individuals with ASD are severe/profound.
The Authentic Awareness Assembly event, put on by the National Council on Severe Autism (NCSA), gave families like ours a platform to advocate directly to legislators.
We had an excellent training day focusing on key areas of need, including housing, research, and Medicaid reform. We were asked to choose one area to focus on in our meetings with our legislators.
Michael and I chose to speak about the Autism Cares Act. It was reauthorized last December with specific language addressing the disparity of severe/profound individuals left out of research studies.
Did you know only 6% of research participants are severe/profound? What good is research that discriminates against the most vulnerable population on the spectrum? Families deserve answers into the causation of profound autism.
We desperately need answers to develop personalized treatments and interventions to help individuals like our son, Zachary.
It was overwhelming for both of us to navigate through the Senate and House buildings and meet with the legislative staff by ourselves, but we gathered our courage, and our nerves subsided as we told our story and showed them Zachary’s picture.
Our meetings went well, and we hope to be a continued resource for these legislators as they engage in work that affects the profound/severe population.
Being a part of this event was emotional—knowing the planning it took to get there and experiencing the hope of being in a community with other parents and grandparents who understood us. At the same time, feeling the heaviness of knowing the need for advocacy for Zachary and others like him will never end.
This event was an opportunity to renew our focus on legislative concerns and to get our heads back in the game after focusing on Zachary’s transition from high school to adulthood. Our spirits are renewed!
Written by Heather Woodring of Everyday Adventures with Zachary
The post A Seat at the Table: Championing Severe Autism in D.C. appeared first on Finding Cooper's Voice | Welcome to the Secret World of Autism.
