Although early detection and intervention of disabilities can often make a dramatic difference in a child's life, parents of children with autism say they don't put their faith in the people on the front lines of treating and caring for their children.
A small new study discussed at the International Meeting for Autism Research in Toronto last week found that parents didn't expect their pediatricians to provide autism-specific treatment, and many pediatricians don't view autism treatment as within the scope of their work.
The study involving families and doctors in Philadelphia, also found that even doctors who want to help families manage their children's diagnoses lack the training to do so.
"This study validates what previous studies and parents have told us: Many pediatricians are not prepared to provide the kind of advice and information that parents need after receiving a diagnosis of autism for their child," Geraldine Dawson, chief science officer for Autism Speaks, told HealthDay News.
"Without advice and information from their primary care provider, families must navigate treatment options on their own, which can be confusing and complex," Dawson told HealthDay News. "This adds to the already high levels of stress that families are experiencing. We need greater emphasis on autism training for primary care physicians so they can help parents make informed decisions about their child's care."
The study found that pediatricians do refer patients to early intervention services and specialists, but that's not the ideal, said Dr. Susan Levy, director of the Regional Autism Center and the Center for Autism Research at Children's Hospital of Philadelphia.
It would be better if primary care doctors managed all aspects of the care of a child with autism—receiving reports, consulting with specialists and helping parents integrate autism treatments with the child's overall development and health needs.
Levy told HealthDay News that what makes this arrangement work is shared decision-making, in which pediatricians advise parents on, for example, evidence available about alternative treatments, and then parents and doctors decide together on the best course of action.
Many families, for example, turn to alternative treatments to help with autism, because no medications treat the core symptoms of autism.
But Levy said many doctors find it difficult to discuss those treatments frankly with parents because there is little evidence that they work even though some parents believe they do.