Families with kids with autism hear the stories. Someone’s child started stringing words together again, another could sleep through the night in peace. They are the holy grails in the autism world–therapies that, at least anecdotally, have improved lives of children with autism. And for families faced with few effective treatments, other than early behavioral intervention, they are often worth a shot.
One popular alternative treatment is a gluten-free/casein-free diet, known as the GFCF diet, where all gluten (a protein found in the seeds of several grains such as barley, rye and wheat) and casein (a protein found in dairy products) is eliminated. But recent evidence from the most controlled diet research in autism to date suggests that the GFCF diet doesn’t actually help. The University of Rochester study found that, for the 14 children monitored, a GFCF diet didn’t result in a change in sleep habits, bowel habits, activity or core symptoms of autism.
Leonard Rappaport, MD, MS, chief of Children’s Division of Developmental Medicine, says he’s been eagerly anticipating the results of this study. Even though he didn’t believe that the GFCF diet worked, he was still saddened by the study’s conclusion. “I was hoping I was wrong,” he says.
Rappaport says this study should be used to arm parents with scientific evidence, so they can weigh the pros and cons before adopting a restrictive diet for their child. “I hope that parents will go into these diets with their eyes open, and even if there seems to be anecdotal improvement, that they try the child off this restrictive diet after a while to see if it actually makes a difference,” he says. “Usually children with an Autism Spectrum Disorder (ASD) are on many interventions at the same time, and they have spurts of developmental progress. It’s difficult to isolate the intervention that was critical.”
Because it can be a challenge for kids to get ample fiber, vitamins and minerals while eliminating all gluten and casein, Rappaport recommends parents only try it under the guidance of a nutritionist. “There have been reports of rickets and osteopenia associated with the diet,” he says.
While this finding may come a a big disappointment for many families, Rappaport says that research in ASD is gaining momentum and has a great deal to offer to parents of children with ASD. “It’s only through research that we can explore, as this study did, whether treatments that seem helpful are actually helpful, since ASD is such a complicated disorder,” he says. “It’s also only through research that we can explore the potential environmental influences in ASD.”
ASDs are the fastest growing set of serious developmental disabilities in the United States. According to the Centers for Disease Control and Prevention, one of every 110 children will receive a diagnosis of the disorder by the time they are 8—a rate 10 times higher than it was in the 1980s.