Web Gives Autism a Global Stage

Thanks to Josie Huang at the Portland Press Herald:

Web Gives Autism a Global Stage
by Josie Huang
Portland Press Herald

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. 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, 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 13-year-old Wynn -- like "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 the moment their child is diagnosed with autism.

Often, one spouse will leave a career to care for the child, as Johnson, a former teacher, did. Many will throw themselves into researching and trying different behavioral therapies, diets and supplements.

For some, family outings, never mind vacations, become a thing of the past.

"I hear from members all the time that they're so isolated," Johnson said. "You can't participate in life the same way you did. When the kids are younger, and they're having behavioral issues, it looks typical. When they're older like my son, and he's having a meltdown, people are afraid."

A Lifeline

For families in more remote areas, where they know of no other people in their situation, the Internet can serve as a lifeline, said Cathy Dionne, program director of the Autism Society of Maine. She said this is especially true in a lightly populated state like Maine.

"A lot of families especially in rural Maine -- we're talking Aroostook County, Washington County -- their connection is their computer," Dionne said.

Dionne, who has an autistic teenager, regularly visits the sites and feels uplifted after reading posts. Though her child does not speak, she is still hopeful for the day she will hear an "I love you."

"The one thing I like about these sites is the 'Guess what my child did today?'" Dionne said. "They share of lot of those type of stories, and I think parents need that inspiration."

Some of the parents say that they feed off one another's advice and encouragement because they feel the medical establishment has abandoned them.

Unlike a condition such as juvenile diabetes, autism comes with less defined guidelines for treatment, parents say.

"When you go to the pediatrician, they say 'there is no cure. Put him in speech therapy. Bye,'" said Taylor, a family therapist before she switched to Web design so she could stay at home with her son. "You're not left with a lot of options."

Taylor belongs to the group of parents who believe autism can be cured in some children. Many blame the mercury-containing preservative in vaccines given to children through the 1990s for causing the disorder, as well as environmental toxins.

On the other end of the spectrum are parents who believe that autism is largely, if not entirely, genetic. Some of them consider the view that autism can be "fixed" as a direct affront to their children.

The Maine-based Web sites and online groups reflect the range of views. Rebecca Waddell of Waldoboro said she falls somewhere in the middle of the pack.

For her blog, www.mainely musings.blogspot.com, Waddell said, she stays away from controversies and topical issues, except for the occasional mention of actress Jenny McCarthy, the parent-turned-activist who's acquired hero status on many autism sites.

Waddell prefers to document her day-to-day experiences with her two sons, the younger of whom, 4-year-old Thane, is autistic. Her site is plastered with close-ups of her sons mugging for the camera and videos of them goofing off with their father and the family husky.

Waddell, who regularly reads four other Maine-based sites, said it is therapeutic to have an online journal and receive feedback from readers.

"I sort of would like people to realize that it's not all horrible," she said. "Yes, there are some challenges. He'll go into a store and scream the whole time. But he can be also incredibly cute and charming and smart."

The rest of the world can see for themselves. Just the other week, she said, another mother in Sweden let her know how adorable Thane is.