An autism support group has called for more research and more help treating the gastrointestinal issues of autistic children after an expert panel published a report saying there is currently no evidence that special diets help autistic behavior.
For years, parent support networks and celebrity activists have endorsed restrictive diets to combat the so-called "leaky gut" symptoms and behavioral problems of children with autism.
But the expert panel came to a consensus statement that "available research data do not support the use of a casein-free diet, a gluten-free diet, or combined gluten-free, casein-free (GFCF) diet as a primary treatment for individuals with ASD's (autism spectrum disorders)."
The statement on so-called autism diets was one part of a larger report on how doctors should approach gastrointestinal issues in children with autism.
The report, published Monday in the journal Pediatrics, echoed some parents' claims that gastrointestinal issues are linked to autism-like behaviors. Without a way to communicate their pain, these experts suggest children exhibit other behavior such as emotional outbursts or repetitive behavior.
But the panel of 27 specialists agreed that "problem behavior in patients with ASDs may be the primary or sole symptom of the underlying medical condition, including some gastrointestinal disorders."
"I think a lot of the time these kids are misbehaving because they don't feel well," said Rebecca Estepp, a mother of a boy with autism and national policy manager for Talk About Curing Autism. Estepp believes her son and others with autism and gastrointestinal issues may be acting out in part because they unable to communicate their pain.
An estimates 15,000 families participate in the support and activist group TACA. "The overwhelming majority of these families do this diet," said Estepp. "Study them," she urged.
But until studies prove or disprove the merits of casein-free and gluten-free diets, the experts recommended adapting more traditional treatments for gastrointestinal problems in children with autism.
"Probably 90 percent of parents of children with autism try dietary intervention," said Dr. Fred Volkmar, director of the Child Study Center at Yale University.
"The sad reality of it is that with any complementary alternative treatment -- there is no evidence. It's what makes it [a] complimentary alternative treatment," said Volkmar.
Dr. Timothy Buie of Harvard Medical School said published studies suggest only around 30 percent to 50 percent of parents of children with autism try restrictive diets. Still, he sensed the peer pressure to try a diet was intense and did not recommend parents try a diet on their own.
"I am very willing to walk the pathway of dietary intervention with a family," said Buie, who was lead author of the report. But "I want to have the most information."
Volkmar said his patients often try the restrictive diets after hearing anecdotes from other parents, which is not proof enough for scientists and doctors. He also thinks parents are keen to pick up on diets as a form of treatment because a common characteristic in children with autism is finicky eating.
Estepp said she first started wondering about her son's diet for those very reasons.