Federal law guarantees an education for children with developmental disabilities like autism until the age of 21. But after turning 21 (each state determines the exact date), those young adults lose the specialized help and structure they've had for most of their lives. And there is no equivalent state or federal support required to take over.
Parents of children with autism compare it to falling off a cliff.
"Happy graduation," Lenore Kubiscko said with sarcasm in her voice. "Everything that we've worked for we are taking away and you will leap off a cliff into nothingness. Right now the picture is nothingness, it's black. Absolutely black."
Mary Clancy was feeling the same way. Her son Eric was about to turn 21 too and graduate from a specialized school for children with disabilities called the Rebecca School — a place he loved and thought of as his family away from home. After a legal battle, the Clancy's won the right to have their local school district reimburse them for tuition, which averaged about $100,000 per year. But that would stop at graduation.
"Without purposeful things to do, he will fall back into the autism world. Into his own inner world," Mary said. "He's so much happier out of it. But that's where his brain takes him. It's hard."
For three years, Dateline followed these two families as their sons graduated from the education system and moved into uncertain terrain.
We watched as these mothers navigated bureaucracies, made phone calls for hours on end and got on waiting lists that were filled with thousands of names already.
As adults, their sons are eligible for Social Security and they can apply for services funded by Medicaid. But they were warned by parents and other advocates that many of the programs offered would not be tailored to autism. And even for programs that they didn't think were ideal, there are waiting lists. Every state decides how to spend its Medicaid dollars and so there are great variations from state to state. In Florida for example, there are waiting lists that contain as many as 20,000 people.
Autism prevalence rates have more than doubled over the last decade. And according to Linda Walder, Executive Director of the Daniel Jordan Fiddle Foundation, an advocacy group for adults with autism, an estimated half a million young people with autism will age out in the next ten years.
"It's a tsunami of children who are aging to adult life," Walder said. "And we really have no safety net for them, or very few safety nets."
Walder emphasized that people don't stop having autism when they turn 21. "That is one of the general misconceptions about autism — is that it only affects children," she said. "You do not outgrow autism."