Life with Autism
The Transition to Adulthood

For kids on the autism spectrum, there comes a time when they must leave the educational system and transition to independent living as an adult. It’s not easy for them – or their parents.

By Erica Voll

Aaron Monihan at home with his dog, Puck

Aaron Monihan graduated from Moorestown High School with a cap on his head and a diploma in his hand. He celebrated with family and friends at a backyard barbecue, and wondered what life would be like after high school.

Days later, he was on a plane taking him 2,300 miles away to Arizona. It would be the first time he had been this far away from home.

“He was very excited,” remembers his mom, Maureen. “He was ready to be independent.”
If Aaron’s story sounds typical, it’s not. Unlike most of the kids in his graduating class, Aaron has autism.

He wasn’t on his way to college; he was on his way to Chapel Haven West, a transitional program for young adults with autism. He wasn’t going to major in biology or education – he was going to learn how to live on his own.

“The program focuses on life skills like managing a budget, grocery shopping and using public transportation,” says Monihan. “This was a big step for all of us. As a mother, it’s easy to do for your child. With Aaron in Arizona, we are forced to step back so he can learn these skills on his own.”

Twenty-year-old Aaron is “transitioning.” That’s the word used to describe the process of planning for a child with autism once he graduates from high school. A transition plan may include post-secondary education, employment, independent living or vocational training. Having a transition plan for adults with disabilities isn’t just practical; it’s the law.

In NJ, parents need to begin planning when a child is 14 years old. Because Aaron wanted – and is able – to be independent, and a traditional university or college wouldn’t meet his unique needs, Chapel Haven West was a perfect fit.

“We toured a couple different programs we thought might be good for Aaron – just like parents tour college campuses,” says Monihan. “Even though it is so far away, this program was the best match for Aaron.”

And for Maureen and her husband, who have four children, the work they did for Aaron prepared them for what they would face again next year when their other son, Andrew, graduates from high school. Andrew, too, has autism.

Aaron with his siblings Andrew, 18, Tara, 16 and Kate, 8

It’s estimated that one in every 150 children are diagnosed with autism nationwide. In NJ, the statistic is even greater, affecting about one in 94 residents. And now, more children being diagnosed with autism are growing up to be adults with autism – functional and independent adults. Once sheltered within day programs and school systems, they are now getting ready to live on their own.

According to Autism New Jersey, a resource for NJ families, local school districts are responsible for providing services to students with disabilities, like autism, through age 21. After 21, those services are referred to as “adult services.”

Pam Brown, MSW, is the vice president of developmental disability services for Family Service, a SJ-based organization that provides residential and day support services for adults with disabilities. She often meets with families who are making their child’s transition plans.

“We offer many programs from job placement assistance to residential, group homes,” says Brown. “Today, more parents want to keep their children at home, and they just want support, which we provide.”

Margaret Simkunas of West Deptford used Family Service when she needed additional support for her son Raymond, who was diagnosed with Asperger syndrome – a form of autism – two years ago at the age of 30.

Unfortunately when Raymond was born, little was known about autism. Parents or teachers who saw the warning signs of the disability then, often didn’t understand what was happening. So Raymond’s childhood experience was difficult.

“I always knew there was something different about Raymond,” Simkunas remembers. Bounced from school system to school system, change was difficult for him. By the time he was in high school, kids would tease Raymond, calling him “Rain Man,” the character portrayed by Dustin Hoffman in the 1990s film of the same name.

When he finished school, Raymond’s transition plan brought him to the Ellen Shiplee Treatment Center, a residential program in Mount Laurel.

“When he got there they diagnosed him with Asperger’s,” Simkunas recalls. “Once I heard that, and learned about what it was, I was relieved. The signs were there. We just didn’t know what to call it.”
Today, Raymond lives in a supervised apartment where staff from Family Service check on him. Raymond also works at Walmart and is an exceptional artist who hopes to one day get his
cartoons published.

But a lot has changed since Raymond was a child. Today, parents know the signs of autism, and early intervention programs address concerns while the child is an infant or toddler.
According to a recent study in the American Academy of Pediatrics journal, Pediatrics, one in every 91 American children, including one in every 58 boys, is diagnosed with autism or an autism spectrum disorder.

But as the number of kids diagnosed has increased, legislation to help those diagnosed has not met the demands.

Lisa Goring is the director of family services for Autism Speaks, a national organization founded in 2005. The organization focuses on research, awareness and advocacy, and it connects people with autism to resources.

Goring says for a lot of families, school systems are a safety net for their children with autism.
“As the prevalence of autism increases, schools are challenged with figuring out how to educate a wide variety of students,” she says. And when people with autism graduate from school? “It’s a challenge for a lot of families.”

Evan Heitzman, who lives in Moorestown, is focusing on her son’s education and the way the school system is preparing him for his transition. Her son, Christopher, is 10 years old and has moderate to severe autism.

“How his school will prepare him for the day he turns 21 is something I think about every day,” she says. Evan was one of the 300 parents, community members, teachers and service providers who attended the Advancing Futures for Adults with Autism conference in Philadelphia last November. The national town hall addressed issues such as housing, employment, life strategies and legislation for adults with autism.

“Putting together legislation for people with autism is a monumental task,” says Heitzman. “Autism is so unique to the individual. Some people with it are high-functioning out in the world, while others cannot speak. There is not a ‘one-size-fits-all’ solution.”

While the town hall addressed basic life issues like housing and employment, it also covered concerns that face people on a community level.

“We need more training for first responders like firemen and emergency medical technicians,” says Heitzman. In an emergency situation, someone with autism might feel stressed, or threatened, or may try to run away. First responders need to know how to approach and help someone who has autism.

“Something as simple as education about autism for first responders is so important, and something we can achieve easily,” says Heitzman.

Another important issue facing adults with autism: transportation. For people with autism, navigating a mass transportation system may be the key to independence.

“Andrew will never be able to drive,” says Monihan of her youngest son. Like a lot of people with autism, Andrew has a difficult time with something referred to as “theory of the mind.” In other words, he has difficulty attributing beliefs, intentions and desires to others. It’s the ability to assume other drivers will stop at stop signs, or obey traffic signals.

While he may not be able to drive himself there, Andrew does love to work. A junior at Moorestown High School, Andrew works at a car dealership and Habitat for Humanity after school.

Working makes him feel good about himself. It makes him feel like an adult. He feels independent,” says Monihan. “It was hard for him to take breaks because he is so focused on working while he is there.”

Andrew has a job coach who helps him with social and work skills. A job coach can help a person with autism learn the social nuances in the workplace, like small talk over coffee breaks.
“About 70 to 80 percent of adults with autism are un- or underemployed,” says Autism Speak’s Goring. “But there are a lot of supports to help people find and keep jobs.”

For many parents and their children, employment means the beginning of independence.
“I want what every mother wants for her children,” says Monihan. “I want them to lead a full, happy life doing something they love, and something that is productive.”

And since mom and dad aren’t always there to help children find their way, a child who transitions into a more independent life provides parents some peace of mind. But for most parents, the peace of mind isn’t always enough.

“It strikes fear in the hearts of all parents of children with a disability,” says Evan Heitzman when she talks about when she and her husband have died. “It’s hard knowing you won’t be there to protect your child when he needs protection.”