Autism Awareness Month spreads word on Oregon's high rate
Even on an unseasonably warm April day, the kids are eager to go inside. Outside Pump It Up, the children's party palace in Beaverton, Lee Grossman explains why.
'Kids with autism have to move and bounce,' says Grossman, president and chief executive officer of the Autism Society of America. 'Primarily, what you're going to see here is kids having a blast.'
Anyone familiar with the brightly colored nirvana of giant inflatable play structures at Pump It Up knows its effect on children.
But these kids are different, and Grossman had reason to travel from his Maryland home base to attend the event, called 'Bounce for Autism.' He is one of several big names in autism research and care who visited Portland the week before last as part of national Autism Awareness Month.
'We're testing this as a fundraising event,' Grossman says. 'It's a hook to bring people in. It's a fun event, and at the same time they're learning about autism.'
What folks could learn about autism, especially in Oregon, might scare them.
'The number of people being diagnosed with autism, not only in the U.S. but in the world, is skyrocketing,' Grossman says.
The Centers for Disease Control and Prevention in Atlanta puts the frequency of autism in the population at one case per 150 people. Grossman says it's worse than that.
'What we're tracking is one in 100,' he says. 'It is the fastest-growing disability in the world. Our numbers are eclipsing HIV. Still, not much is being done.'
Autism is a complicated developmental disorder, usually observed in the first three years of life, that limits a person's ability to communicate and interact with others. Experts have struggled to understand its increasing prevalence. Nor do they know why it it shows up so often in Oregon.
'There are people saying Oregon has the highest autism rate in the nation,' Grossman says. 'It is in the top five. We believe there is an environmental cause here. What it is we don't know.'
Theories abound for cause
Stephen Edelson, who spent 10 years as president of the Autism Society of Oregon before becoming director of the Autism Research Institute in San Diego, says autism represents a national health crisis.
He says there are many theories about Oregon's high caseload, one of which involves mercury produced when Mount St. Helens erupted spectacularly in 1980. Autism has been linked to substances like mercury, arsenic and lead.
'We do see a high level of autism near volcanoes around the world,' he says.
Edelson, 50, dedicated himself to autism research when he was a 19-year-old undergraduate and the disability was relatively rare.
'When I got involved, it was one in 2,000,' he says. 'Now, it's at least one in 100. Everybody pooh-poohed us and said, 'You're crazy.' We were right.'
Chris and Ana Zyweck of Tigard struggled to find resources when their son Marcus, now 8, was diagnosed with autism at age 3.
'Four years ago there was not much of a hope,' Chris Zyweck says. 'Most people were panicking.'
There was a point at which the couple seemed to have lost the boy.
'He was gone for a while,' his mother says. 'There was no eye contact, no playing. None of that.'
The couple would find appropriate school programs and care providers, but only after much searching. Now, inside one of Pump It Up's bouncy playpens, Marcus torments his older brother, Alex, at a game of king-of-the-hill.
'Alex said, 'I know Marcus is getting better, because he's becoming more of a pain,' ' the boys' father says.
Track team inspired
Sean Henley, 26, watches the action at Pump It Up with quiet glee.
Henley, who is autistic, is the inspiration for the last official event on Portland's Autism Month calendar. He was a member of the track and cross country teams at Grant High School, and will run again at the second annual Sean's Run From Autism at Oaks Amusement Park this weekend.
His father says Sean's mother wanted him involved in an activity that would both challenge and inspire her son, who is essentially nonverbal.
'Kathy had the idea because he always ran ahead of us,' John Henley says. Sean, a 2000 Grant graduate, earned a varsity letter and was three times voted the team's most inspirational athlete.
Before that, his mother had done some inspired work herself, helping found the Autistic Children's Activity Program, which mostly organized summer activities.
'It was almost like a little private club,' John Henley says. 'Within two or three years, she was serving 110 kids from the Portland area. Kathy realized that there was a larger need than anybody realized.'
The proceeds from Saturday's run, which allows participants to run either 5 or 10 kilometers, will go to the Autism Center of Oregon Pilot Project, which seeks to create a center that offers research, treatment and training.
'An autism mall,' John Henley says. 'A lot of times, the pediatricians just have no idea where to send a kid. If you have a center, we'd have a central location where a parent can shop around.'
Joyce Lentes of Vancouver, Wash., snaps pictures of her 13-year-old son, Dylan, as he cascades down a giant inflatable slide.
After years of frustration, she's watched a community take shape around autism.
'There's resources that I didn't even know were out there,' she says. 'That's what the Autism Society of America can do, is help those parents that are at a loss. The more people know, the better these kids are going to be.'
Sean's Run From Autism
When: 10 a.m. Saturday, April 26 (registration at 9 a.m.)
Where: Oaks Amusement Park, foot of Southeast Spokane Street, 503-284-0350, www.seansrun.org
Cost: $20 preregistration, $25 day of event