PBS report part 5 – the ‘black hole of fear’ for adults with Autism

By Alive & Well


In the U.S., federal law mandates educational services for children with Autism. But once they become adults, the support structure falls away.

In this episode, we meet a family in New Jersey that’s confronting this stark reality right now, as son Zach turns 21.

As mum Nancy says, “Well there’s not a whole lot of territory that’s been charted thus far.  We’re at the leading edge of a huge wave of individuals with Autism. And there aren’t a whole lot of services in place for adults.

“Zach’s going to need a place to live. We can’t live forever.”

Like so many people with Autism, Zach’s life is “a cruel paradox of impressive skills compromised by serious handicaps.”

He has some life skills, but not others. As his sister Skylar points out, “He looks normal, and he acts pretty normal most of the time.” But there’s always a concern that people will misunderstand him, like when he goes to the urinal and “drops his pants down all the way. I’m afraid that one day someone’s going to take that the wrong way.”

He also struggles with being able to explain himself or tell people what he needs, and has no sense of danger. All of these things limit his ability to be independent.

Peter Gerhardt, an expert on adolescents and adults with Autism, puts it this way: “As a society, we’ve gotten very comfortable with the idea of accommodations for people with physical disabilities. We now sort of get that. For people with neurological challenges, however, we’re still at a loss about how to accommodate.”

For the hundreds of thousands of adolescents with Autism about to become adults, the lack of programs available amounts to a public health crisis.

You can also read our posts about each episode here:

What are support services like for adults with Autism in Australia? What about the U.K. or Canada? What do we need to provide, and how can we make things more accessible for everyone?