My wife and daughters recently visited a cousin who may be on the autism spectrum. The cousin is being seen by early interventionists (incidentally, my mother’s profession), but has yet to be officially assessed.
I was distressed to hear that, despite the fact that this cousin has yet to be diagnosed, my sister-in-law has placed him on a gluten and casein free diet, an unnecessary restriction that is not based on proper scientific evidence. Gluten is a starch protein ingredient in wheat, rye, and barley and casein is a protein ingredient in dairy. Restricting both sources of food can be a challenging, expensive waste of time. More importantly, the diet eliminates important sources of nutrients that must be unnaturally replaced; autistic children on these diets were twice as likely as control group to have weakened bone structure.
I don’t blame any parent for doing whatever it takes to raise a healthy normal child, especially in the light of anecdotes of cures from Jenny McCarthy and her flock of followers. The truth is that there is, as of yet, no cure for autism. Parents who listen to Jenny are placing faith in her claims – she is not basing her advocacy on the facts. The evidence is poor for the efficacy of dietary restrictions for the treatment autism. It’s difficult to design a well-controlled double blind study for this diet, but the one study that met those qualifications, showed no difference between the diet restricted group and the control group.
Ms. McCarthy, whose child may actually have Landau Kleffner Syndrome (not autism), has thrown every possible treatment she can find at her son, including psychic healers. Jenny once claimed that her son Evan was a psychic indigo child (perhaps ready to be enrolled in Professor X’s academy for mutants?). Jenny has a disdain for modern medicine as proven by her crusade against vaccines and her tirades against the doctors who faltered in her son’s diagnosis.
The probable truth is that Jenny and her friends are wrong. Parents who report improvements in their children are probably undergoing confirmation bias, where they select what seems to be progress and ignore behavior that stays the same. Autism can be regressive depending on the age, but most often it’s not – parents will report improvements as their autistic child undergoes speech and behavior therapy. These advancements will happen whether the child is on a restrictive diet or not. Confirmation bias is described in this example of a believer-turned-skeptic, who suddenly reversed his autistic child’s gluten and casein restricted diet without noticing any change in his behavior.
I’m concerned for my nephew. I really hope he is not on the spectrum. Mostly, I hope that my extended family doesn’t fall too deep down the slippery slope of autism quackery because I would be extremely bothered if my nephew were to undergo chelation therapy with a DAN doctor. You can bet that I’ll be finding a good way to send them the above links; hopefully, without insulting them.
Again, it’s not my place to judge a family’s decisions because I will probably never know their frustration, but in the end, the evidence indicates that restricting casein and gluten will not help an autistic child, and may actually harm him. I’ll save the anecdotes for the author of “anecdotes-based parenting”. For me and the science-based community, the diet is extreme, possibly dangerous, and lacks efficacy: that’s more than enough reason to speak up and hope that I’m heard.
Update: 1/4/2010 – my nephew is no longer on the restricted diet. There was no change in progress when he returned to a typical diet.