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Friday, December 2, 2016


Junk science is a big problem for the autism community, whether it involves the discredited vaccine theory or the bogus "complementary and alternative" treatments that unscrupulous vendors peddle to desperate parents.

Many articles and blog posts arguing for the vaccine-autism link have the trappings of genuine academic research: tables, graphs, citations, and scientific jargon. Some of the authors have credentials such as M.D. or Ph.D. degrees. None of these things is a guarantee of scientific value, as the history of science is full of crackpot theories (e.g., AIDS denialism) that are the heavily-footnoted products of people with letters after their names. But most people will not be able to spot the scientific weaknesses of such work. Outside of academia, few understand concepts such as peer review. Jordynn Jack describes one dubious article that appeared in a non-peer-reviewed publication: “Regardless of the scientific validity of the article, though, the writers perform the writing style quite effectively. It would be difficult for the layperson to distinguish this article from any other scientific research paper, especially if one did not investigate the nature of the journal … or of the scientific response to the article.”
At The Atlantic, Erik Vance writes about placebo effects in autism research.
For a long time, experts assumed that placebos had little to no role in autism. One of the central features of autism is a diminished ability to process social information. So the conventional wisdom has been that people with autism would have trouble reading a doctor’s subtle social cues that can often drive placebo effects—and, therefore, would not respond well to placebo or sham treatments.
In fact, however, trials of autism therapies have been stymied for decades by large placebo responses. The most famous example was in the late 1990s, with the much-anticipated trials of the hormone secretin. Hopes ran high that secretin would be a good therapy for people with autism, but in a 1999 trial of 60 children with autism or pervasive developmental disorder, it failed to outperform the placebo. The commonly prescribed antidepressant citalopram met a similar fate in 2009. Both drugs seemed effective in early tests until they were compared with a placebo control. In each case, about 30 percent of the participants in the placebo arm improved, which essentially canceled out the power of the drugs being tested. That number is not nearly as high as placebo responses seen in drug trials for pain or depression, but it is higher than expected for a condition that supposedly precludes placebo altogether. Several teams are starting to look more carefully at the placebo effect in people with autism. Their early results paint a fascinating picture of how belief affects not just people with the condition, but also their families.
Placebo effects can take place in three ways. First, much autism research depends on parent reports. Wishful thinking by parents can distort results. Second, there is "placebo by proxy," where the excitement and hope of the parents can rub off on the child. And then there is the conscious effort to avoid the treatment:
Of course, not all placebo responses are positive, especially when it comes to the wide world of questionable therapies. If a treatment is painful or uncomfortable, and a child is afraid of the therapy, she might change her behavior to mask her condition. Although there’s little research into how fear might change the behavior of a child with autism, some in the autism community are convinced that it can play a big role.
Emma Dalmayne, an autism advocate, has the condition, as do five of her six children. She says uncomfortable sham treatments—such as bleaching agents that can damage the digestive system—can cause a child to pretend to feel better out of fear. The treatments may seem to the child to be a punishment for her autism-related behavior. “Children aren’t stupid,” Dalmayne says. “If you’re a child and you’ve been told you’ve got monsters living in your tummy and your mom wants to flush you with bleach,” she says, “you are going to stop the stimming behavior, the vocalizing and the flapping.”