By Toni Lapp
SpectrumConnection.net
Alison Singer graduated magna cum laude from Yale University and received a master's in business administration from Harvard University. In other words, she is no intellectual slouch.
Yet when her daughter was diagnosed with autism, she pursued alternative medical treatments that had little evidence to support their effectiveness, she told attendees at Health Journalism 2011 in Philadelphia during a session on early intervention and treatment for autism.
"One doctor told me [autism] might be caused by ions in my daughter's brain, and suggested we put a giant electromagnetic magnet under her mattress," she said.
In fact, she purchased the magnet and explained the treatment to her husband.
"My husband told me, 'Think about what you're saying.' I realized I was lost in my love for my daughter."
The fact that the doctor – associated with the group Defeat Autism Now – happened to sell the magnets he prescribed should have raised red flags, said Singer, who is now president of the Autism Science Foundation.
Yet some forms of complementary and alternative medicine – or CAM – have been shown to be effective, said panelist Susan Levy, M.D., medical director of the Regional Autism Center at Children's Hospital of Philadelphia. For instance, melatonin has shown to successfully regulate sleep patterns of individuals with autism. Other therapies, ranging from yoga to music to vitamin B6, do not have as strong evidence supporting their use.
Complicating the matter is the phenomenon known as the placebo effect, in which individuals respond to a treatment simply because they believe that there will be a benefit. For reasons not known, autism treatments have an unusually high placebo effect, from 30 percent to 50 percent, said Levy. That comment prompted Singer to remark that the next treatment she pursues for her daughter may be placebo.
Another panelist, David Mandell, associate director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania School of Medicine, said that ABA therapy – applied behavioral analysis – has been shown to be the most effective intervention for autism. Numerous variations on ABA exist, from "floor time" involving playing, to didactic instruction with a teacher. The one thing they share in common is applied reinforcement – a reward – for desirable behaviors, Mandell said.
Rigorous studies have shown the interventions are effective at reducing undesirable behaviors during a "window of opportunity" probably ending when an individual is around 8 years of age, he said.
"Where we are stuck is we are not showing they [ABA therapies] improve socialization," he said.
So what should journalists make of all this? The panelists had suggestions:
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Be mindful that there are many variants on autism. Perhaps referring to "autisms" is more apt.
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Consider stories of people who are not verbal. Not all individuals with autism are able to make appearances on television a la Temple Grandin and advocate for themselves, yet they have needs that are unique to the variant of autism they have.
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Be wary of information found on the Internet. One recent study showed that half of autism websites had bad information, Singer noted. Sites that sold products or carried ads for treatments were more likely to have unreliable information.
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Understand that there is a strong placebo effect associated with autism treatments. If a parent makes an impassioned plea to publicize a treatment that they believe helped their child, the observed effect may not have necessarily been a result of the treatment.
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Autism is a developmental disorder, and sometimes improvements occur spontaneously, prompting parents to credit interventions when there may not be a causal link. This is why more research is needed of various treatments.
The media has been responsible for spreading much misinformation about autism, Singer said. She targeted an episode of "Dr. Oz" in which the celebrity doctor brought in a group of pediatricians and asked how many believed there to be a link between vaccines and autism. All but one indicated that they did not believe there was a link. Yet Dr. Oz immediately singled out the dissenting pediatrician, giving that position more weight than it deserved. Singer said she had talked to Oz's producers and learned that they had to interview many pediatricians for the show before finding one who would represent that point of view, again, creating an impression that there was more support for that viewpoint than there really is.
The session ended with moderator Trine Tsouderos, science and medical reporter for the Chicago Tribune, asking panelists if the vaccine-autism debate was finally settled.
Levy answered, "Just when you think it's resolved, it comes up again."
