THE BLOG

'Autistic and Aging Out' Film

10/02/2013 10:54 am ET | Updated Dec 02, 2013

"I got the great news," Andrew Roger said in a high squeaky voice, jumping up and down, tightening his fists then releasing them. He pulled his chair close to his computer and grabbed the mouse, clicking and scanning and reading the words of the Google search page for "Seeds of Victory audio cassette tape." Then he stood back up, seized the TV remote and clicked on a Disney movie. He pressed rewind, fast forward, rewind again. Still holding the remote, he started to jump, pounding on his bedroom floor. "I got the great news!" Andrew said again.

But there was no news. Andrew, who's 18, has autism. Although he's verbal, his cognitive functions are severely impaired. When he does speak, his words are often indecipherable or repetitive, leaving him dependent on his parents for daily care.

I stood filming Andrew, but he was fixated on the television screen. At the time, I was unfamiliar with autism, knowing only that I was curious about the disorder and the impact it had on families. I knew they suffered a tremendous burden. I also knew that autism was rising in incidence. One in 50 children born today will be diagnosed with a form of the disorder, a staggering figure, according to a recent study by the Centers for Disease Control and Prevention and the Health Resources and Services Administration.

As I spent more time filming Andrew and Heidi, a clear problem emerged: Though formal programs for children diagnosed with autism continue through high school, at 21 these programs end, and the options for care become less clear. This process is known in the autistic community as "aging out."

What to do now? Heidi has multiple options -- placing Andrew in a group home, assisted living, a job, or having her son live at home until she becomes too old and weak to care for him. None, she explained, are a perfect solution.

I decided that I wanted my film to center around this uncertainty. But past Andrew's looming challenge, Heidi feared something more that I wanted to capture: What will happen to him after she dies? "It's very painful that our kids can't take care of themselves, and someday I'm going to be dead," she said. "Not many other people outside of the autism community can understand that." The problem Heidi faces is not new. Lila Howard has worried for almost 40 years about her autistic son Lyndon Rochin, 60. "What's going to happen when I'm not here?" she said, now 89, reiterating Heidi's concern.

To me, Lila and Lyndon represented a structural problem with how we care for autistics in the United States, their experience signaling that Heidi and Andrew would be in a similar place years down the line. Lila was the perfect parallel to Heidi, an equally doting and loving mother faced with an extreme handicap.

I personally empathized with both Heidi and Andrew, Lila and Lyndon, so I was hopeful that their stories would strike a chord with the audience as well.

The first step towards making a difference is getting people to care. Hopefully my short film will at least start a conversation that desperately needs to be had.

For more on autism, click here.