Just as our now teenage son Charlie was diagnosed with autism in 1999, we heard reports from parents that a gluten-free casein-free diet had helped their autistic children make huge improvements in their speech and communication, behavior and overall well-being. We immediately put Charlie on a strict diet without any wheat or dairy products. For years I read food labels obsessively lest Charlie ingest gluten from other ingredients such as barley or oatmeal. We were sure we saw results from Charlie being on “the diet” but then, he was simultaneously doing a number of other therapies including hours of Applied Behavior Analysis, occupational therapy, speech therapy; like many parents, we felt we had to try to do as much as possible to help Charlie.
When he was about 9 — after years of hunting down gluten-free foods online as going gluten-free was not so much in the news then — we took Charlie off the diet and saw, as some other friends who had initially put their autistic children on the diet and then taken them off it, no significant changes. Charlie, being a child of intense habits and generally disinclined to try new foods, still eats little wheat; indeed, he has no interest in bread or pizza. We have eliminated dairy again from his diet after connecting eating ice cream — he will no longer eat the soy and rice milk versions — to terrible stomach aches.
A recent study in Nutritional Neuroscience surveyed 387 parents or primary caregivers of children on the autism spectrum. Participants answered a 90-item online survey regarding their child’s “gastrointestinal symptoms, food allergy diagnoses and suspected food sensitivities, as well as how often the child adhered to a gluten-free, casein-free diet.” For children with gastrointestinal symptoms and allergies, people said that the gluten-free casein-free diet, when strictly followed, indeed helped to improve their behaviors, physiological symptoms and social behaviors compared to children without these symptoms.
Parents who make the effort to put a child on a strict special diet are, one could argue, inclined to see improvements (we certainly were). It would also be helpful to know what other therapies children on the diet were doing at the same time as well as what changes others (teachers, therapists, relatives not involved in the day-to-day care of an autistic child) noted, or not.
One reason we took Charlie off the diet was that some of the gluten-free foods we were giving him seemed to be contributing to his stomach woes, in part because of some of the thickening agents (such as xanthan gum) in them. Charlie does have trouble with his stomach and, as he can talk very little, it is extremely hard for him to tell us when he has a stomachache. Avoiding dairy had been a good decision and generally teaching Charlie to eat healthfully of equal importance. It takes a bit of effort to get him to eat new foods and a variety of foods. I’ve often suspected that his obsessive tendencies play a part in his stomach problems, as well as his having a lot of anxiety that very likely (as an autistic person pointed out to me) can lead to a nervous, butterfly-ridden stomach. A parent simply keeps trying to do the best to help a beloved child, through dietary changes, educational therapies and other strategies; a parent also needs to be able to discern when an “intervention” does not seem to be, despite one’s utmost helps, really working.
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