The gluten-free casein-free diet is one of those many topics that breeds dissension in autism circles. It is on the list of DAN!-approved biomedical "interventions. You can read the boooks by Karyn Seroussi (who "recovered" her son from autism) and Lisa Lewis (who did not). You can follow the diet for some years and, as your child grows older and is "still" autistic, take your child off the diet with the desire of not making your child be any more "different" than he or she already is, and it is much easier to let her or him eat "whatever they want."
Charlie has been on the diet since June of 1999---since he was just two years old---and I have thought about all of the arguments for and against it over the years. The chief reason for keeping Charlie on a wheat-free and dairy-free diet is not based on science, or research, or even dubious science.
It is based on the evidence Charlie provides.
Eight Thanksgivings ago, we were living in St. Paul, Minnesota, far from any relatives and friends. I made a turkey breast and a pumpkin pie and Jim, in homage to his Irish heritage, made the mashed potatoes. We have a photo of just-having-learned-how-to-walk Charlie with his hand on a spoon in the pot of potatoes. Jim and I can only groan when we see the photo now: Charlie's face is strangey bloated, his cheeks are aflame with a red rash, his eyes droop, and he is really going for those spuds. The rashes (which also ringed his torso) were gone seven months later after we started Charlie on the diet and began some short-lived adventures with soy cheese rice crust pizza and bread pumped up with so much xantham gum and yeast that our kitchen smelled like a brewery.
From this---along with Charlie testing positive for celiac disease---we concluded that the diet would be helpful for him. At that point, his food selectivity was at an all-time high (chocolate chip cookies) and the thought of trying him on any new foods seemed a very good idea. It has been more than seven years of carefully scrutinizing labels and trying the patience of restaurant employees with our repeated request for a hamburger with NO bun, no BREAD, please.
It has just been in the past two years that Charlie has become extremely conscious that other people eat different things and, after simply avoiding any sort of bread for Charlie, I have been hunting down gluten-free breads that are borderline bread-like, rather than brick-like. It has been time for some kind of change: For the past week, Charlie has been dumping his rice out of its plastic container or thrown his cereal. His teacher is offering Charlie choices about what he would like to eat, on the theory that he is dumping his food (a development that started last summer) because he does not want it (common sense enough, but there have been many times when Charlie has kept trying to eat the thrown food).
This food-dumping has stood out because Charlie's days at school and at home have been so good. He bounded onto the bus this morning, Jim told me, and, at his biweekly Lovaas/ABA therapy team meeting, we talked about the fourteen sight words he knows and his continually improving speech as Charlie put together some new puzzles. I thought of how long I have been cooking rice at 10pm after Charlie is asleep to cool and pack in his lunchbox, of how rice seemed to be the one food Charlie always ate, no matter where he was and in endless quantities.
Tuesday's lunch is a real anomaly for Charlie: a gluten-free bagel and turkey and olive spread, a pack of sushi (it is another student's birthday tomorrow and a pizza is being sent in---the sushi is for Charlie's own treat), carrots and apples and just a bit of rice, in a different kind of container than the ones we have been using for these past years.
Something new. Something different.
Sure, I could wish that Charlie could tell us he has had enough of rice in words rather than the action of throwing, with its messy results. I am more than glad that he is telling us something, in the ways he can. Charlie's language skills are forvever playing catch-up to his desires and wants, to the complexity of his thinking and his alertness and understanding. Hence I feel so often called to play the part of interpres, the Latin for "translator" and also the etymological root word of "interpreter."
You need both skills to be an Autismland parent.