Children who have a diagnosis on the autism spectrum — whether considered high-functioning, severely disabled, or somewhere in between — ideally receive abundant support and services from government and private agencies, medical providers (like pediatricians, pediatric psychologists and psychiatrists, and developmental specialists), schools, and therapists (especially those who provide occupational and speech therapy), from the time of diagnosis (or earlier) to the time they are 21 years old. In the United States, the law requires local school districts to provide educational services to children with disabilities until 21.

And then what?

After age 21, says Kate Snow, children “age out” of many of these services. Snow featured Mary Clancy’s autistic son Eric in a recent, eye-opening program on NBC’s Dateline:

At that point, young people graduate and there is no federal or state program that automatically takes over. Many families compare the transition to adulthood to “falling off a cliff.” A recent study by the A.J. Drexel Autism Institute, a research organization, found almost four out of ten autistic young adults were completely disconnected from both work and continued education opportunities.

“I wake up every morning, drenched in sweat and worried about what am I going to do about Eric,” Clancy told Dateline.

 

Advocating for Eric all these years has been hard work for Mary Clancy — a full-time job. Now, along with other parents, she is sounding the alarm and raising awareness on a growing and potentially huge problem for all of us to solve: providing education and appropriate services for autistic adults. So far, Clancy is having some success patching together programs that suit Eric’s needs:

“We’re finding that these combinations of programs that we put together, that he is learning, he’s developing. He’s come a long way since high school,” Clancy said. “There is one missing component that is crucial and that’s a social life with friends. He’s way too dependent on the family for his social needs. So that’s something we really are struggling with. It’s not easy to do that. It is a full-time job for me.”

Clancy explained that while they’re now receiving some funding from federal and state sources, “it’s very patchy and it’s a lot to navigate.”

Dr. Paul Shattuck, leader of the course outcomes research program at the A.J. Drexel Autism Institute, stressed that young adults with autism continue to need support.

“We believe that people on the autism spectrum are valuable members of our communities. They have roles to play, dreams to pursue. And they have things to contribute,” Shattuck said. “The big challenge is creating opportunities for people to participate and contribute in society and unlock their potential.”

 

Watch Kate Snow’s important reporting on what autistic adults and their families face — and what we all must do to provide for all people with disabilities — as autistic children age-out into adulthood, in Dateline’s “On the Brink” here.