The research, to be presented Wednesday at the International Meeting for Autism Research in Toronto, involved interviews with 20 parents of children aged 3 to 5 with an autism spectrum disorder and 20 pediatricians affiliated with Children's Hospital.
Ideally, pediatricians would do more than refer patients elsewhere, Levy said. They would serve as a "medical home," managing all aspects of the child's care, receiving reports, consulting with specialists and helping parents integrate autism treatments with the child's overall development and health needs.
Key to this arrangement is shared decision-making, in which pediatricians advise parents on, say, the evidence available about alternative treatments, and together parents and doctors decide the best course of action, she added.
In reality, that's rarely what happens, Levy said. "What the pediatricians should do and what they think they should do is very different from what actually happens," she said.
Many families, for example, turn to alternative treatments to help with autism, since there aren't any medications that treat the core symptoms of autism.
But many doctors find it difficult to frankly discuss those treatments with parents, because there is little evidence that they work even though some parents think they do, Levy said.
"Complementary and alternative medicine was an area pediatricians mentioned frequently as an area of discomfort. They knew they wanted to protect families from harm and figure out how to communicate risk and evidence," Levy said.
Parents, on the other hand, perceived pediatricians as frequently dismissive or negative toward alternative therapy, and so often didn't bother to bring it up, the study showed.
Families also said pediatricians offered little support to them in dealing with the stress of autism, and that instead they turned to friends, family or other community resources.
Because this study was presented at a med
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