Autism treatment needs are great in Roaring Fork Valley

by by Catherine Lutz, Aspen Daily News Staff Writer
Monday, February 23, 2009

After some coaxing and a mumbled, rushed speech about who he is and what he likes, 21-year-old Bill Bernard of Aspen concluded, softly but clearly, “I don’t like to feel panic.”

Bernard, who has an autism spectrum disorder, was the first person to testify at an Aspen hearing of the Colorado Autism Commission on Thursday. He was one of 10 people who attended the first of several hearings the governor-appointed commission was holding in various mountain towns.

Given the alarming rise of autism nationally and locally (one in 150 people in Colorado, up from one in 2,000 a few years ago), parents and educators decried the lack of autism-specific services, funding and training for caregivers in the Roaring Fork Valley. Even fewer options exist for adults with autism, like Bernard, who lives at home with his parents and must travel to see his three doctors.

There is no job coaching, no housing opportunities, no transition programs and no facilities in Colorado for adults with autism, said Diane Osaki, a Denver-based autism treatment provider, referencing the testimony of Bill’s mother, Sallie Bernard. And Colorado Medicaid limits autism coverage for those under 20 years old, and doesn’t even cover Asperger’s syndrome, which is on the mild end of the autism spectrum.

Members of the Colorado Autism Commission, which was formed last year, are touring the state to get input about gaps in services, suggestions and “what’s really going on,” said Commissioner Barry Jackson. The commission is charged with crafting a 10-year plan by Oct. 1 partially based on the testimony, which is required to come in written form from anybody who testifies orally.

Osaki, an occupational therapist, said she spends about one-and-a-half weeks per month working with families in the Roaring Fork Valley, and the need is growing such that she is bringing other specialists up. One special education teacher in the Aspen School District, who moved here two years ago from St. Louis, said that she “feels like I’m more knowledgeable than anyone in the district” when it comes to autism. She said that in St. Louis she had the support of consultants and professionals, but that in Aspen she is on her own to get a program started in the schools.

Parents testifying at Thursday’s hearing said that they are the ones primarily crafting programs and adjusting therapies for their children. And while that somewhat comes with the territory, since autism manifests itself differently in each child — hence the “spectrum” of developmental disorders that autism encompasses — that can make it kind of tough on the family.

“I see a huge area of need and I don’t know what services are working,” said Rylie Trueman, who is pursuing a costly, private home therapy for her 4-year-old son. People who work with him are all very well intentioned she said, but it’s difficult to find therapists trained in autism. “I feel a lot of them don’t get my son.”

One local agency even told Trueman that there are no services for children from 3-14 years old.

Osaki and others suggested to the commission that the valley could benefit greatly from increased training for providers, particularly with technology like Web and video conferencing. Distance technology could also help doctors and other remote therapists stay in better touch with their local patients.

Jill Pidcock, mother of a 5 1/2-year-old who also works with severe needs kids in the Roaring Fork School District, said “a lot of things are working in my world,” but “I felt at a loss coming to this valley.”

Pidcock and her family moved from Evergreen, Colo. in June, and she bought into the stereotype that Aspen would be progressive in such things as autism treatment.

While that isn’t quite the case, Pidcock optimistically believes a lot of local issues can be resolved by more communication and better relationships between parents, educators and caregivers. Heather Abraham, director of special education for the Aspen School District, also talked about Colorado’s “cumbersome” system, where evaluation and treatment fall to different agencies, leaving “an opportunity for services to fall through the cracks.”

Pidcock wants to create a parent liaison position in her school district — which she was told the district cannot afford — “to create synergy instead of splintered relationships. I believe we can do a lot with relationships.”

Funding is also a major issue, according to those who testified, both for the families and the service providers. Insurance policies don’t cover much, and school districts are limited in the autism-specific programs they can provide. Pidcock said she can’t afford private therapies, so her son must rely on the limited school programs, which she is fortunate to be able to monitor because she works for the district.

Even if more training was offered to local caregivers, Pidcock pointed out, educators, who tend to work long hours for low pay, would need some kind of incentive to take the training.

Mountain BOCES, an organization that provides services including but not limited to special education, has an autism coach who covers 10 school districts.

Complicating matters is when an autistic person also has behavioral issues, which is not uncommon, and is denied care at a hospital, which is also not uncommon, said Osaki.

“If they need to be served there’s nowhere to go,” she said. “It’s probably some of the scariest times I’ve spent with families to try to know what to do.”

People with autism have neurological disconnections that cause developmental disabilities and most take more time and effort to learn a task or activity. They also tend to have higher levels of anxiety and fear, and can easily get stressed out but may not know how to properly express their frustrations.

Pidcock summarized what parents are dealing with when she said that “the majority of us are trying to get our child to sleep through the night, or dealing with a meltdown in the grocery store. We have to force all things out of our lives when we’re having ‘an autism moment’, and you never know when that’s going to be.”

Colorado, which prides itself on its physically active population and embraces the independent Western ethic, “should declare autism a national health emergency. Ours should be a model for other states,” said Osaki, reading Sallie Bernard’s testimony.

Source: http://www.aspendailynews.com/section/home/132699

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