Kansas parents wonder what will become of their kids when they become adults with autism

From The Kansas City Star:

Each year, tens of thousands of children diagnosed with autism, from mild to severe, enter adulthood and leave the safe confines of schools and their services behind.

Every day, their parents, such as Jennifer Smith-Currier of Gardner, worry what will become of them.

“It’s like, where is the journey going?” said Smith-Currier, whose children Corinne, 16, and Cameron, 14, have autism. “When you have a typical child, there are goals: You go to high school; you go to college; you have a career and 2.5 children. My daughter is 16 with the mental capacity of a 12-year-old. Will my son ever get married? I don’t know the answer. Will my daughter ever drive a car? I don’t know the answer. Will she ever find love?

“I won’t be around forever. I want to know they’re safe. I want to know there will be somebody to look after them, that they won’t be forgotten and can lead productive lives.”

On Friday, Smith-Currier, who works with the Kansas chapter of the Autism Speaks advocacy group, joined about 65 other parents, counselors, developmental experts and many adults with autism to be part of a “National Town Hall” — meetings held simultaneously in 16 cities.

One goal was to allow participants to vote nationally on strategies to address what another parent, Kirsten Sneid of Leawood, called “the silent tsunami” of autistic youth entering adulthood.

The work meeting, “Advancing Futures for Adults with Autism,” sponsored locally by Children’s Mercy Hospital and The Kansas Center for Autism Research and Training at the University of Kansas, was held all day at the Ewing Marion Kauffman Foundation Conference Center.

“The fact is this is a growing problem that we’re going to need to address as a community,” said Sean Swindler, director of community program development for the KU group.

At its core, autism is a disorder of brain development. It affects people’s ability to communicate or emotionally connect to others.

Estimated some 30 years go to affect about 1 in 10,000 people, the Centers for Disease Control and Prevention now estimates that the disorder may affect as many as 1 in 100 to 1 in 150 people, or about 2 to 3 million people nationwide.

The disorder’s cause and the reasons for its precipitous rise are not known. The scope of its effects is vast.

In some instances, people with autism are uncommunicative, lost in their own worlds and unable to care for their most basic needs. Others, such as individuals with Asperger’s syndrome, are highly intelligent, talented or even savant.

One of the participants on Friday, Linda Jameson, was diagnosed with Asperger’s in the 1990s after struggling her first 33 years with traits that only mystified and depressed her. Now teaching part-time at Johnson County Community College, she is pursuing a special-education degree with an autism emphasis.

“I stayed awake all last night worrying if I could get my ideas across to the others today,” she said. But everyone was receptive at her table.

“What is known,” said Swindler, “is that when you get to numbers like 1 in 150 or 1 in 100, you can be assured that every single person in the community has autism touching either them or their family or friends.”

Ideally, life for adults with autism might be something like it is for Bobby Beeler (pictured), 25, of Leawood. Although many individuals with autism are able to hold jobs, their unemployment rate is probably 80 percent.

For the last six months, Beeler, who lives with his parents, has done maintenance, cleaned windows and restrooms and banisters and raked leaves at ScriptPro in Mission, a firm that produces machines to fill pharmacy prescriptions.

“I like it,” Beeler said this week. “It’s not easy.”

Beeler’s father, Scott Beeler, is an attorney for ScriptPro.

Mary Cole, the company’s facilities manager, said that when she hired Bobby Beeler, she did so knowing that she would have to work with the family to figure out the best way to allow their son to do his job well.

She quickly found that it only required making a detailed list.

“If, for instance, I said, ‘Go down to the bathroom and clean the sinks, mirrors and take out the trash,’ he may only remember one thing,” she said.

Now, his supervisor, Phil Knight, gives him a typed list each week.

“I don’t check on him any different than anyone else,” Knight said. “He’s very detailed. He shows up to work every day.”

Yet few companies are as accepting or patient with autistic individuals, Swindler said.

Thus the town hall meeting on setting priorities: employment, housing, safety and recreation:

•Employment: “They don’t interview well,” Swindler said. “If they do get hired, often there is some social issue, a misunderstanding in communication, and some people don’t know they can ask for help.”

High-functioning individuals aren’t eligible under Medicaid for waivers for access to vocational rehabilitation, sheltered workshops or job coaches, a situation advocates would like to change. Advocates also believe more people need training on how to manage and work with autistic individuals.

“It’s about employers being willing to take a risk,” said Gary Weinberg of Overland Park, whose son, Blake, soon to turn 24, has autism. Two days each week, he rolls up silverware at a restaurant.

“He is so proud of the fact that he earns money,” Weinberg said. “That self-esteem is critical to feeling he is living an independent life and being productive and paying taxes and contributing to society.”

•Housing: Already overwhelmed with requests for group homes and other shelters, states aren’t ready for the influx of autistic adults.

•Safety: With more autistic adults, law enforcement needs better training regarding their behaviors. Officers in Lenexa already receive some training.

Health care is another safety issue. Autistic adults often are denied insurance coverage.

•Recreation: “We know that people with autism feel isolated in their communities. We want people to be able to do all those things that everybody else does,” Swindler said.

Programs for those with autism continue to grow across the region, including at Johnson County Community College, Penn Valley Community College and the Lakemary Center in Olathe.

“We can’t leave this population untapped,” said Sneid of Leawood. Her son, Evan, 15, has the disorder.

“He is severely, autistic,” she said. “He has limited verbal skills. He is not going to ever sit across the table from me and ask me how my day is. He is not going to prom. He is not going to drive …. In the beginning, you grieve the loss of a neuro-typical child.”

But, she said, “We are resilient and we are resourceful. It’s not about talking about the problem. It’s about talking about the solutions.”