Finding A Web Of Support: Online sites offer information and a sense of community | Spring/Summer 1997

[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]


By CARLA KOEHL

Park benches will always be great places to pick up parenting tips. So win back fences, doctors’ offices and board-rooms. But for families of children with disabilities, all the chats in the world can’t begin to provide the depth of information-and, often, the level of understanding and sympathy that’s available online. Which is why, for every major disorder and disease, it seems there’s a Web site or online support group. It’s also why some of the best Internet resources are created and maintained by the very parents who need them most.


Case in point: Portia Iversen. When her son, Dov, was diagnosed with autism at 21 months, Iversen feverishly hunted for information about the disease. “I would just spend all night going on different neuroscience Web sites,” she says.

A relief? Sort of. Like so many mothers before her, she found it wasn’t enough, especially for narrowing down the best research studies and finding the most plugged-in parents. So in November 1995, when Dov was 3 1/2, the Los Angeles sit-com writer put her career on hold to cofound Cure Autism Now with her husband, movie producer Jonathan Shestack.

From CAN’s Web site (http://www.canfoundation.org/), users can now get updates on research studies and grant proposals, and hyperlink to autism newsgroups.
Dozens of other top parent-created sites on everything from Down syndrome(http://www.epix.net/~mcross/down-syn.html)Sturge-Weber syndrome(http://www.centex.net/~huntjul/index.html) and infantile Refsum’s disease (http://www.pacifier.com/~mstephe/) are connecting families to one another, going far beyond the fare offered in health sections of online services or even online parenting magazines. Along with Parents Helping Parents (http://www.php.com/) and the Usenet’s hundreds of special-interest bulletin boards, they’re creating a sense of community among families who – either because they live in remote areas or because thy’re coping with such rare diseases – would otherwise feel nothing but isolated.

Also keep in mind: some of the best sites are those whose sole purpose is to link users to as many different childhood-disability and disease pages as possible. Internet Resources for Special Children (http:// www.irsc.org/) was created by Julio G. Ciamarra, whose son was born with cerebral palsy, epilepsy and moderate retardation. Rare Genetic Diseases in Children(http://mcrcr4.med.nyu.edu/~murphpOl/homenew/htm) is maintained by staffers at the New York University Medical Center. WellnessWeb (http://wellweb.com/index.htm) pays such close attention to issues like treatment options, drug dosages and physician selection that it won a 1996 Best Site of the Year award from Net Magazine. Its sickle cell anemia link (http://wellweb.com/index/qsickle.htm) goes a lot further than other sickle cell sites to focus on the disease in African-American children. Another excellent site is the National Institutes of Health home page (http://www.nih.gov), where just typing “childhood” into the search engine field purs up dozens oflinks to highly specialized research studies, including papers on acute lymphocytic leukemia. Try finding those on a park bench.

With JEANNE GORDON in Los Angeles

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