Too often ‘treatments’ turn out to be bogus, but simple guidelines can help.
When Connie Anderson’s son was diagnosed with autism a decade ago, she scoured the Internet looking for treatments. “I tried all sorts of things I now consider bananas,” said Anderson, now community scientific liaison at Kennedy Krieger Institute’s Interactive Autism Network. “At the time it didn’t feel like nonsense. It was hope. People will try all sorts of things to help their child, sometimes even against their better judgment.”
Since Anderson’s son was diagnosed, the number of Web sites devoted to autism and autism treatments has multiplied. While a 1999 study counted about 100,000 autism Web sites, entering the term “autism” into the three major search engines today yields more than 17.4 million results, according to new research. So how can parents know how to weed out fact from fiction when faced with so much information? It’s not easy but there are some steps parents can take to determine if the information they are getting is from a reputable source.
In a study presented recently at the International Meeting for Autism Research, experts analyzed about 160 of the most visited autism sites to determine how often they met measures of quality and accountability, including whether or not the site was selling something; if citations about research supposedly showing the efficacy of a treatment included author identification and references; if the information was current; and if the site asked visitors for personal information (a red flag). Most sites did not meet all of the criteria for quality, said lead study author Brian Reichow, a post-doctoral associate at Yale University Child Study Center.
Experts offer these tips for assessing autism-related information on the Internet:
* Don’t use the Internet as your sole source of info. Seek support from doctors, physicians, teachers and other professionals.
* Pay attention to the domain names. In the study, “.com” sites were most likely to be selling unfounded “miracle cures.” Sites ending in “.edu” or “.gov” tend to have oversight committees or quality standards. Government-sponsored “gateway” domains, such as the U.S. National Institutes of Health’s MedlinePlus or the U.S. Department of Health and Human Service’s healthfinder.gov, which each offer a collection of links to other sites, are good places to start because the links have been approved by experts, Reichow said.
* Look for quality seals such as HONcode (Health on the Net Foundation), a non-profit, non-governmental organization that has developed standards for health information on the Internet.
* Take testimonials for what they’re worth. The placebo effect can be powerful in autism treatments, and only randomized, controlled experiments are considered the gold standard of proof.
* Some autism sites will offer scientific data to back up their claims. That information is less reliable if it is generated by the company or the company’s researchers, who may have a conflict of interest or profit motive, Anderson said.
Anderson cautioned parents to be especially wary of testimonials, no matter how powerful they may seem. For every success story — or a person believing or claiming theirs is a success story — there could be many more failures. “There could be 10 people who have a good experience, and 1,000 who had a bad experience,” Anderson noted.
You can learn more about the Interactive Autism Network here.
- From the Far Northern Regional Center “In The News” July 1, 2010. Visit their site to sign up for their newsletter.
For information about ARC services in Butte & Glenn Counties (Calif, USA) for families with autistic children, please, contact Patti Thomas at (530) 891.5865 or pattithomas@arcbutte.org