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.
Fact vs. fiction
So how can parents know how to weed out fact from fiction when faced with so much information? It's not easy, experts say, 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. And about 17 percent of the sites offered or sold treatments that had little or no scientific support.
"The Internet can provide parents with a lot of useful and helpful information, but there is a lot of misinformation online as well," Reichow said. "When using it to gain online health information, parents need to be cautious."
The desire to help their children and the lack of mainstream medical treatments for autism drives parents to seek alternatives, according to Dr. Paul Law, director of Kennedy Krieger Institute's Interactive Autism Network.
"You don't see lots of ideas for how to treat ear infections, because the treatment for that is well established," Law said. In contrast, "there are very few autism-based treatments that the field agrees on, so we don't have complete answers for those who are suffering from autism," he said. "That naturally triggers families to seek answers."
For most of what's being peddled online, there's little scientific evidence it works, Law said. His organization has documented some 500 treatments for autism, ranging from diets and vitamins to hyperbaric oxygen therapy.
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.
Experts offered 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 US National Institutes of Health's MedlinePlus or the US 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.
(HealthDay News, May 2010)