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Jack Milton/Staff Photographer
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Jack Milton/Staff Photographer
Earlier this month, major news broke in the autism world when the federal government conceded that vaccines worsened a health condition in a Georgia girl named Hannah Poling and triggered autism-like symptoms.
Federal officials, while agreeing to pay for her care, maintained that vaccines do not cause autism, a developmental disorder. Still, the case was seen as a victory by a subset of parents certain of a direct link. And they could learn everything they wanted to know about it from Ginger Taylor, a Brunswick woman with an autistic son.
Search for "Hannah Poling" on the Internet, and Taylor's blog, www.AdventuresinAutism.com, will pop up as the first or second search result. In the days after the case became public, readers from around the world converged on the site, with daily visits climbing from about 350 to 1,700, she said. Her lengthy posts prompted some readers to comment online. Even more e-mailed her.
"The Internet is a great tool for all the debate you can have," said Taylor, who also blogs about medical studies and treatments for her 6-year-old son, Chandler. "I don't know what they did before it."
Taylor is part of a group of Maine parents who are using the Internet to share information on an international stage and create a community around a disorder that is as isolating as it is mysterious in its cause.
The thirst for knowledge is growing as more children are diagnosed with autism. About 1 in 150 children have autism or a closely related disorder such as Asperger's syndrome, estimated the federal Centers for Disease Control and Prevention.
Hallmark symptoms include repetitive behaviors and problems socializing, speaking and reasoning. The degree of severity varies, as does the need for educational and social services.
ANSWERS AND SUPPORT
In Maine, diagnoses among school-age children have more than tripled annually since 2000. The number of cases among people ages 3 to 21 rose from 594 that year to 1,990 in 2007, according to state education officials.
Similar rate increases have been posted nationally. It's not clear whether autism is becoming more prevalent or whether awareness has grown.
Looking for answers and support, dozens of Maine parents are using blogs, Yahoo! groups, YouTube, listservs and social networking sites such as MySpace to share their experiences with other families in their state and beyond.
At least 15 of them are members on FoggyRock.com, a site founded by Shannon and Steve Johnson of Harpswell, whose older child, Wynn, 13, is autistic.
FoggyRock – a reference to the uphill climb autism poses – acts like a FaceBook for members of the autism community. Each member has a home page for posting blog entries, photos, videos and "wit and wisdom." They also can add "contacts" and join groups such as The Autism Sibs and Military Families with Autism.
Shannon Johnson, FoggyRock's editor-in-chief, has her own page, where she writes about the joys of raising Wynn – such as "seeing a genuine smile on his face" – and the heartbreak of separation. Wynn spent about a year in the hospital, returning in December.
The site has attracted nearly 700 members, some from places as distant as England and Australia, Johnson said. She wants it to be a comforting place for families whose lives change dramatically when their children are diagnosed with autism.
Often, one spouse leaves a career to care for the child, as Johnson, a former teacher, did. Many throw themselves into researching and trying different behavioral therapies, diets and supplements.
For some, family outings, nevermind vacations, become a thing of the past.
"I hear from members all the...
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