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Autism Now: For Adults With Autism, Few Support Options Past Age 21

April 22, 2011 at 2:14 PM EDT
Although federal law mandates educational services for children with autism, there are virtually no support services provided once they become adults. In the fifth report in his Autism Now series, Robert MacNeil profiles a young man in New Jersey -- and his family -- as they face an uncertain future for him.
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ROBERT MACNEIL: Little kids are the public face of autism, their appeal helping to win public understanding and educational support. At the age of 3, Zach Hamrick was admitted to this school for children with autism in Paramus, N.J., run by Bridget Taylor. Although it’s a private school, the fees are mostly covered by public funds.

BRIDGET TAYLOR, Alpine Learning Group: When Zach came to Alpine Learning Group 18 years ago, he had very limited language and couldn’t follow directions. He was very difficult to engage socially and, you know, here on the tape, what you see is I’m asking him questions. And he only knows answers to very few questions. And he can’t really attend to our conversational interactions for long periods of time.

Can you jump?

ROBERT MACNEIL: But when children like Zach grow up, will there be public support for them as adults, when they’re no longer cute, harmless and unthreatening?

In two months, Zach will turn 21, and the federally subsidized education that has brought him this far will end.

BRIDGET TAYLOR: What numbers are these?

ZACH HAMRICK: Four, eight, four.

ROBERT MACNEIL: The mandate that made education available to all children regardless of disabilities expires at 21. Yet he’ll need support for the rest of his life.

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

In 2009, Zach completed New York’s Nautica Triathlon in 3 hours and 14 minutes. He swam a mile in the Hudson River, biked for 25 miles and ran for six in Central Park. Yet he was never more than a few feet from his father or his cousin, because Zach has no sense of dangers in traffic and so can’t go out on his own.

We're kind of 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. But I have no intention of dying until I know that he's safe and secure somewhere.Nancy Hamrick, mother of adult son with autism

STEVE HAMRICK, Zach’s father: If we come to an intersection, he doesn’t know what those cars are going do, when he needs to stop, so he’s dependent on my telling him

Turn right, Zach, turn left, turn left again. Go fast, go, pass the car, go, right side, go, go, go, pass it. Yes.

ROBERT MACNEIL: And strangest of all, this expert biker doesn’t understand about changing gears.

STEVE HAMRICK: Do you want to make it easy?

ZACH HAMRICK: Yes.

STEVE HAMRICK: Make it easy, Zach. All right. Now let’s go.

Of course he feels it’s easier. But it — it’s not better. Easier is not necessarily better from his perspective. Hard is also good.

There you go. Good.

Zachary can’t communicate well enough with people to explain himself or tell them what to do. So, the signs on his helmet, in case he gets separated or I get hurt, in order to let people know that he is autistic.

ROBERT MACNEIL: Steve, who is an investment banker, has made a huge personal investment in Zach’s physical development. Instead of words, they have a shared physical communion.

For hundreds of thousands of adolescents with autism about to become adults, there are very few programs available. For those desperate to find a solution, it is a public health crisis.

PETER GERHARDT, McCarton School: Well, estimates are about 700,000 to 800,000. Kids are moving through this system and time is not on our side. These kids are aging at the same rate as all of us.

ROBERT MACNEIL: Peter Gerhardt is a nationally known expert on adolescents and adults with autism. He directs the program for teenagers at the McCarton School in New York.

Gerhardt considers the disabilities education law basically a civil rights issue for children but not so far for adults.

PETER GERHARDT: After the age of 21, there’s very little. It’s more a – we’re going to provide services if we have the money and if you fit into this service. So more and more we’re seeing kids, you know, graduate out of high school to nothing. They go onto waiting lists, they sit at home.

ROBERT MACNEIL: Gerhardt says there is a critical shortage of people who can work with adults with autism.

PETER GERHARDT: First of all, they need — staff people who understand the needs of adults. They need trained people who can work with them. And in almost every state of the union, the credentials to work with adults with autism: high-school diploma, driver’s license and a criminal background check.

ROBERT MACNEIL: And paid what?

PETER GERHARDT: And paid just above minimum wage usually. Maybe $8, $10 an hour. It is not considered a career choice. Nobody goes into the field of adult services looking at it as a career.

WOMAN: Say, “My duck is yellow.”

PETER GERHARDT: There are pockets of excellence throughout the country. And there are some very good adult programs out there, too. Unfortunately, they’re just very, very, very few in numbers. When we look at the actual numbers that are coming through the system, it’s very much like trying to use, a turkey baster to drain a swimming pool.

ROBERT MACNEIL: Zach has many life skills.

BRIDGET TAYLOR: Zach still has lots of issues with understanding language, with communicating. He can’t be left for long periods of time by himself. So, although he’s made tremendous gains, Zach continues to require services.

ROBERT MACNEIL: At home with his mother, Nancy, in Mahwah, N.J., he makes his own lunch.

NANCY HAMRICK: But, unfortunately doesn’t really understand danger. You know, we had an incident not too long ago where accidently something was left on the stove. When I came down the house was filling with smoke. And Zach was sitting by the computer on his chair, spinning in a circle, slowly, not paying any attention at all to the smoke, the smoke alarm. He was just in his own little world.

ROBERT MACNEIL: Yet his own little world has many facets.

NANCY HAMRICK: If you can see this is Thomas the Tank Engine. And he draws — tapes papers together and draws until he gets the desired length. Colors it and cuts it out.

ROBERT MACNEIL: What age would he have been when he made this?

NANCY HAMRICK: I would say he was probably 7 or 8 when he did this.

ROBERT MACNEIL: Oh, that’s beautiful.

ROBERT MACNEIL: Zach’s sister Skylar is close to him in age, only 17 months older and very close emotionally. Now a junior in college, Skylar has always felt responsible for him.

ROBERT MACNEIL: When you think about the future, Zach’s future, what are your thoughts about it?

SKYLAR HAMRICK: The future has always been scary since I was little. You know, who’s – who’s going to take care of Zach? Am I going to take care of Zach? Is Zach going to move in with me and my family? You know, these are all questions with no answers.

ROBERT MACNEIL: Each member of the family has learned a different mode of communicating with Zach. Skylar’s is through the music and movies that command so much of his waking mind. A current favorite, even obsession, is the movie “Beauty and the Beast.”

(SINGING)

The memorized dialogue serves in a touching way as the conversation they can’t really have.

(SINGING)

SKYLAR HAMRICK: He picks it out and he watches it over and over and over and over again. And whether we like it or not we end up having all of the lines memorized. It’s — it’s really like — it’s the closest that we’ll ever get to sitting as a family and having a round-table discussion. It’s the most interactive thing to do with Zach that I’ve found.

ROBERT MACNEIL: Her love for Zach makes Skylar worry about the risks he runs.

SKYLAR HAMRICK: Something I worry about is people misunderstanding him because he looks normal. And he acts pretty normal most of the time. So I always worry, like, when he goes into the bathroom to use the urinal, he drops his pants down all the way. I’m afraid that one day someone’s going take that the wrong way. It’s all of these little what ifs, what if, what if, what if.

ROBERT MACNEIL: Peter Gerhardt feels the answer is more trained male teachers.

PETER GERHARDT: Ideally he never should have been reinforced for doing that initially. Personally, I think it’s because we are a field that most of our young educators are females and don’t know how to use a urinal. I would like to use this opportunity to let them all know that we don’t drop our pants to our ankles.

(LAUGHTER)

ROBERT MACNEIL: Gerhardt wants society to become as comfortable with the needs of adults with autism as it has with the physically disabled.

PETER GERHARDT: Because of the Americans with Disabilities Act, we’ve seen significant changes in our environment. We see handicapped parking spaces, and we see ramps into buildings, and we see handicapped bathroom stalls. And we see all these things that didn’t exist, you know, 10, 15 years ago. 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.

ROBERT MACNEIL: Zach has advanced enough to have a job.

WOMAN: What do you need?

ZACH HAMRICK: The keys, please.

ROBERT MACNEIL: At a nearby retirement community, he sorts and delivers the mail to residents. Zach is paid for his work but he needs — and will always need — constant support in the form of a job coach.

ROBERT MACNEIL: Almost finished?

ZACH HAMRICK: Yes.

ROBERT MACNEIL: Do you like the job?

ZACH HAMRICK: Yes.

ROBERT MACNEIL: Do you find it easy, or is it hard?

ZACH HAMRICK: Yes.

ROBERT MACNEIL: Yet even this protected job for Zach expires with his 21st birthday, since his job coach is paid through public education funds. That leaves his parents at present without answers.

ROBERT MACNEIL: Black hole.

NANCY HAMRICK: Black hole of fear.

ROBERT MACNEIL: Black hole of fear.

NANCY HAMRICK: Well there’s not all — a whole lot of territory that’s been charted thus far. We’re kind of 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. But I have no intention of dying until I know that he’s safe and secure somewhere.

ROBERT MACNEIL: In the meantime, the family finds what comfort it can from the idiosyncrasies of Zach’s mixed limitations and skills.

And the uncanny relevance of these memorized words he is able to utter so clearly.

(SINGING)

ROBERT MACNEIL: We don’t like what we don’t understand. In fact, it scares us.

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