When their child is diagnosed with autism, parents often find they must begin a new career as a researcher. Feeling immense pressure to find the best treatment, if not outright cure, for their little one, they slog through swamps of good information and pseudoscience, searching for anything that might help. Parents quickly learn that because each child with autism is as different from her peers on the spectrum as she is from those who are developing “typically,” there is no single right treatment. What works for most may not work for a particular individual. Parents of newly diagnosed children, especially, are willing to try almost anything.
Most parents line up conventional therapies for their children, like Applied Behavioral Analysis and speech, occupational, and physical therapy, according to each child’s needs. Many also choose to explore other treatment options, some of which are not scientifically proven, but may have a great deal of anecdotal evidence to support them. One such treatment is the gluten-free, casein-free diet.
Bryan Jepson, MD, author of Changing the Course of Autism: A Scientific Approach for Parents and Physicians, states that between 70 and 80 percent of children with autism have gastrointestinal symptoms such as diarrhea, abdominal pain, and constipation. He claims “There is also evidence of a strong gut-brain link in autism, in which case treating the GI disease would have a direct effect on the brain.” As Stephen Shore explains in his book, Understanding Autism for Dummies, the basic idea behind the GF/CG diet is that some children with autism may have food sensitivities and other digestive issues that contribute to (some say cause) autism symptoms.
The most foods most likely to cause these reactions are thought to be casein (a milk protein), and gluten (a protein found in wheat, rye, barley, and some other grains). When these foods are scrupulously avoided over a period of weeks or months, many children seem to improve, some only slightly, others dramatically. According to Shore, parents usually report improvements in speech and behavior, common weak areas for kids on the spectrum. For some children, however, the GF/CF diet seems to have no effect.
The GF/CF diet is the subject of ongoing studies, but at present there is no reliable way to predict how well or for whom it is likely to work. While tests for food sensitivities do exist, they are not always covered by insurance, and some claim they don’t necessarily predict how a child will react to the diet. Most interested families simply choose to try the diet for several months and assess its efficacy for themselves.
Many parents are astonished to learn how many products contain traces of gluten or casein. These ingredients can be hidden in such unlikely foods as “non-dairy” cheeses, various condiments and sauces, and even hot dogs, not to mention medications, and non-food items like play dough or paste. Careful study of ingredient labels, if it wasn’t a habit already, becomes a way of life. Restaurants menus can be incredibly tricky; parents often find themselves interrogating servers about food preparation. Natural food stores, or the health food section at the supermarket, quickly become familiar terrain.
It takes some serious adjusting of the typical American diet to avoid casein and gluten. However, parents may also find that many of their family favorites are already wheat and dairy free, or can easily be adapted. Meatballs and marinara sauce can be served over brown rice pasta, for example, or chili may be enjoyed with a side of cornbread made with rice flour in place of wheat. This is where a good cookbook geared toward the GF/CF diet is invaluable. There will inevitably be some disappointments and even disasters when trying new recipes and products, but there are also plenty of pleasant surprises waiting to be found.
In the beginning, the GF/CF diet may feel like a major lifestyle change. Parents considering it will be happy to know that there are excellent resources available both locally and online for families who feel their children might benefit from the diet. Most of these resources will be useful to families whose children have other special dietary needs, like celiac disease, wheat or dairy allergies, or who are on the Feingold diet for ADHD.
Heidi Horner is a birth and postpartum doula and mother of two living in Spotsylvania.
