Dear Dr. Lanny:
What do you think of the “autism diet”? I’ve heard some children benefit a lot from eliminating gluten and casein from their meals. I’ve also read that diet doesn’t affect children on the autism spectrum one way or the other. What do you think?
A: I am sure it will come as no surprise to those who have read this column over the years that I have great skepticism about the “autism diet.”
More clearly described as gluten-free, casein-free (GFCF), this diet is touted as a way to improve symptoms of autism. Casein, found in dairy products, and gluten, found in grains such as wheat, barley, oats and rye, are believed by proponents of the GFCF diet to be inadequately digested in children with autism, leading to increases in certain compounds in the brain, which in turn cause autistic symptoms.
If that sounds complicated, it is my fault. The idea is not unreasonable that inability to digest a food substance properly could cause a chain of events with a bad outcome. The trouble is that there is no evidence to back up this hypothesis. The Internet is filled with personal stories of improvement when using this diet, or with books such as Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother’s Story of Research and Recovery by Karyn Seroussi. To me these are akin to the model/actress Jenny McCarthy stating that she doesn’t need science to know what caused her son’s autism. Her son is her science.
Science is difficult and messy, with each question only leading to more questions, but it is the best way to determine the true value of a given therapy. A mother’s “knowledge” that dietary changes cured her child’s autism is not science and is never going to be enough for me.
A recent study at the University of Rochester Medical Center testing the GFCF diet did not find any benefit. This was a small study done in a “challenge” fashion, that is, restricting or giving the children gluten and casein, and evaluating their responses. Supporters of the diet question if the study included enough children or lasted long enough to be accurate.
Prior studies in the scientific literature have also failed to demonstrate any value to these dietary restrictions. Further complicating evaluation of autistic symptoms is the subjective nature of “improvement.” There are no simple blood chemistries to follow. No numbers to compare. Possibly your child is improving, but is this a result of the diet? To me, there is no reason to believe so.
If asked by a parent, I would express my strong skepticism, but I would also say that I’d have no problem with trying the diet to see what happens. If I don’t know of some danger to the child, I see no reason not to support the parent’s efforts. Let me know what happens and I’ll add that to what I say to the next parent.
I would like to take a moment to say that there are a number of issues—most prominently autism spectrum and attention deficit/hyperactivity disorder—that remain works in progress. The definition of what comprises these and other problems remains in flux. The kid down the block who used to be a little eccentric or nerdy, now has Asperger syndrome (an autism spectrum disorder). Little Jimmy, from around the corner, who has always been something of a hellion and “all boy,” now has ADHD.
Traditional medicine, which I represent, is expected to not “play God,” and at the same time have answers for everything. Well, surprise, surprise—we don’t. Whenever traditional medicine does not have absolute answers, there are those who will come along with the “truth”—those who have the absolute answers. I find that the longer I do this job, the less sure I am about anything. The more someone claims to have the “truth” of complex issues, the greater should be your skepticism. ■
Dr. Alan Freshman, father of two grown sons, practices at Syracuse Pediatrics. Consult your own physician before making decisions about your family’s health care. Send e-mail to him at firstname.lastname@example.org.