People are typically diagnosed with autism when they're very young. But kids grow up, and kids with autism carry their disability into adult life. What happens when autistic kids become adults, and still need a lot of care?
Meet Nick Bolling. He lives in a group home in San Marcos that's run by TERI Incorporated, which trains and cares for mentally disabled people. Nick is 29 years old and he's been diagnosed with autism.
"What have been the things that you've found kind of difficult to do?" a reporter asked.
"Living on my own," said Bolling.
"Did you try to live on your own one time?"
"Yes."
"Why was that so hard?"
"Ah, my parents live in Long Beach and I live in Saint Marcos now. I want to live in Long Beach," said Bolling.
Nick is better off than some autistic adults simply because he can talk. But it's unlikely he'll ever live independently.
Kristy DeZonia is Director of education for TERI, which stands for the Training, Education and Research Institute.
"I think where we're missing the boat with many of our adults is we're not thinking about adult life early enough and we're not planning for it early enough and we're not giving parents the tools," said DeZonia. "We just expect them to know what to do, and they don't know what to do."
The adult day center of TERI Incorporated is located in Oceanside. DeZonia says about 30 percent of the adults her organization cares for have been diagnosed autistic. Another 15 percent have autistic tendencies, though they were never diagnosed. A generation ago, the people we now call autistic were said to have childhood schizophrenia or specific language impairment. Today, an article in the journal Pediatrics estimates one in 91 American kids is on the autistic spectrum.
"There is a tendency, once people recognize a condition, to find it in everyone," said Doris Trauner, a pediatric neurologist at UC San Diego. "It used to be that autism wasn't diagnosed very much at all. But we knew about language impairment, so that was diagnosed a lot. And now everybody knows about autism so that's being diagnosed a lot."
So what is autism? Trauner describes it as a condition that makes people unable to relate to and communicate with other people in a normal fashion. Autism often includes obsessive interest in one subject, and a habit of making repetitive actions. People on the high end of the autism spectrum can seem quite normal, aside from being a little quirky. Those on the low end are unable to speak and they can be a danger to themselves.
"The majority of people with autism are not going to be able to live independently," said Trauner. "They either go into a group home, or they remain with their parents or other family members."
Meet Lori Kay. She is the mother of an 18-year-old autistic boy, and she is looking at a lifetime, spent caring for Matthew.
"Is he hurting? Is he sick? That's the concern that will never go away for us," said Kay. "You just feel like you have a 2-year-old for the rest of your life, who doesn't even have as good a language as a 2-year-old, really."
Innovative programs have sprung up around the country to care for autistic adults. One in Ohio, called Bittersweet Farms, teaches them farming and woodworking skills in a bucolic setting. But Lori Kay, who serves on the State Council on Developmental Disabilities, said California is not ready for the challenge autistic adults already present.
"Although they've done a fairly decent job with early intervention and early school programs for children with autism, we're not ready for that huge number that will be aging out," said Kay.
The increasing number of Americans diagnosed with autism is partly due to an expanding definition of autism. But pediatrician Doris Trauner believes there has been a true increase in the numbers of people with this disability... the result of genetics, environment or a combination of both. We may not know what causes autism, but Trauner says the care dilemma that's caused by autism should be clear by now.
