By Liane Kupferberg Carter
Here’s the question lately that keeps me up nights: what happens to kids with autism when they’re not cute and little anymore?
Most of the current funding into autism research and intervention is aimed at the youngest children. But besides the obvious argument – that it is critical to intervene when they’re young because you get more bang for the buck – it’s also a fact that it’s a lot easier to raise money for a disorder when you can feature the face of an adorable toddler.
Most of the conferences I’ve attended and articles I’ve read focus on autism as a childhood disorder. The preponderance of cognitive and emotional development studies look at children. When they do focus on older children, it often seems the emphasis is skewed to children at the “higher” end of the spectrum. As the parent of a moderately functioning teenager with autism, I’ve been wondering lately about the subtext behind all these studies and workshops. Is there an unspoken assumption that those at the more moderate or lower functioning end of the spectrum aren’t worth it, that they are just too far gone to help?
But if you accept the statistic that 1 in 150 children in this country have autism, we are looking at a staggering number of rapidly aging young adults who are going to require life long services and supports. According to the Autism Society of America , in the next decade we can expect four million people to be diagnosed with autism. All those young adults will be vying for the same woefully insufficient adult services. Yes, the state runs programs, but the waiting lists are long, and depend on the vagaries of the state budget. Times are tough; dollars and resources scarce.
We need far more research and financing directed at the programmatic needs of adults with autism. That means better targeted studies looking at best practices, interventions and educational protocols for teens and young adults with autism.
We are facing an autism tsunami, and the first wave is aging up and out of the school service model quickly. Once the structure and socialization of school ends, and that little yellow school bus stops coming to the door, it is completely up to each family to figure out what to do next.
It’s keeping a lot of us up nights.
Liane Kupferberg Carter is the captain of Team Scarsdale C.H.I.L.D., the nation’s top fund raising walk team for Autism Speaks. Her work has appeared in the New York Times syndication, Parents, Child, McCall’s, Cosmopolitan, Glamour, Newsday, and numerous literary journals. She is a 2009 Memoir Journal prize winner for “Love is Like This,” an essay on mothering a son with autism. She is currently working on a memoir, Making Music Anyway: Raising a Child with Autism.