Autistic Children Carry Their Care Issues Into Adulthood

December 07, 2009|By Eric Adler | Eric Adler , McClatchy-Tribune

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, Kan., 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?

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 recently 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, Mo., called "the silent tsunami" of autistic youth entering adulthood.

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 ago 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 million 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, 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 Sean Swindler of the Autism Research Center in Overland park, Kan., "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, 25, of Leawood. Although many individuals with autism are able to hold jobs, their unemployment rate is probably 80 percent.

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

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."

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 about their behaviors. 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.

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