FAMILY AND RELATIONSHIPS

Parents of autistic children are finding their own solutions

By SUSAN GLAIRON
Scripps Howard News Service
February 05, 2003

- SKEDDED, READY TO GO. BOB. Photos

In a small room in a Colorado house, 4-year-old Ashe Vogan is hard at work.

"What's the weather like today?" therapist Angele Tatem-Juth asks.

"It's cloudy," Ashe says.

"Do you think it's cold? Let's touch the window."

"Touch the window," Ashe repeats, sliding the window open.

"What do we need to wear?" Tatem-Juth asks.

"A hat, " Ashe says. He pauses. "Gloves."

To a casual listener, the dialogue may seem unimpressive; typical pre-school babble. But to his family, Ashe's simple words are nothing short of a miracle.

Ashe is one of a rising number of children diagnosed with autism, a baffling neurological condition that, according to a landmark study released last month, is as much as 10 times more common than it was a decade ago. The syndrome impairs language and social skills and is characterized by poor eye contact, difficulty making friends, abnormal interests, repetitive body movements such as hand flapping and difficulty communicating. It affects boys four times more often than girls.

Despite an epidemic now estimated to affect between 2 and 6 of every 1,000 children, the cause or causes remain elusive. There is no known cure.

Both federal and private sources have begun to respond to the alarming numbers with funding, which has helped build impressive new research centers. But desperate parents, well aware that early intervention is key in keeping an autistic child connected with the world, don't have time to wait.

They are reading journals, perusing the Internet and networking with professionals and other parents about therapies. They're placing their children on special diets and giving them nutritional supplements while spending tens of thousands of dollars on an array of behavioral and occupational therapies, most of which are not covered by insurance.

Nationwide, $90 billion will be spent on autism treatment, education and services this year, a figure projected to grow to $300 billion over the next decade, according to the Autism Society of America.

"This isn't going to go away," says Theresa Wrangham, president of the 100-member Autism Society of Boulder County, Colo., and mother of a 12-year-old, Rachel, who has autism. "The numbers are rising. In your lifetime, you are going to know someone with it."

In the Boulder Valley School District, for example, 59 students have been identified with an autistic disorder, up from 29 in 1998, according to the district's special education department. The Autism Society of America estimates the number of Americans with autism could reach 4 million nationwide in the next decade.

The U.S. Centers for Disease Control and Prevention study released Jan. 1 used medical and school records and testing to identify autistic children between the ages of 3 and 10 in five counties in Atlanta in 1996. It concluded the prevalence for autism is 3.4 per 1,000, a rate consistent with recent studies, but 10 times higher than figures from studies conducted in the 1980s and early 1990s. Moreover, a University of California study released in October concluded that increases in autism diagnoses in that state are not merely a result of greater awareness or changes in the way a diagnosis is made, as some have suggested.

Concerned, the CDC has earmarked $563,000 annually for five years for the new Center for Autism and Developmental Disabilities Research and Epidemiology in Denver, one of six similar CDC-funded centers nationwide. In 2001, California residents Bill and Claudia Coleman pledged $250 million to establish the University of Colorado's Coleman Institute for Cognitive Disabilities. The Boulder institute, which studies disabilities such as autism, is operating. However, some funding has been deferred because of the sagging stock market.

Theories abound as to what causes autism. Some blame genetic abnormalities, diet and environmental toxins. Others point to thimerosol, a mercury-based preservative previously used in some vaccines, as a potential culprit. (Several university-based studies and a 2001 independent Institute of Medicine report have concluded there is no evidence vaccines cause autism.)

For Ashe, the disorder began to show up at age 2 1/2. In August 2001, he was diagnosed with autism.

A little more than a year after starting therapy, Ashe speaks in six- and seven-word sentences and connects with his family. He also reads and does simple addition.

Ashe's mother, Heather Vogan, credits a variety of therapeutic and dietary interventions for the turnaround.

"He's so with us now," she says. "When we started he had to learn to sit in the chair. Now he just works for the sheer pleasure of doing it and learning. He loves to read books. That's his thing."