No Dumping (#518)
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.
We Go With Him by kristina chew 
My mother in law has celiac disease. Now after many years on a gluten-free diet, she has become intolerant of rice and many other foods as well as gluten. Maybe the rice is giving Charlie a tummy-ache? Have you tried quinoa? Sincerely and Happy Thanksgiving.
Before we put our son on the Feingold Diet, he essentially refused to eat. But, armed with some better choices, he started to eat again.
Even if others say it is a complete sham, I figure if we are tricked by placebo such that our lives are easier and our boy is happier, then so be it! (But, I think there is more truth in it than a placebo.)
Diet is so tricky since so much socialization is done over food. Take away NT social skills and NT food choices, and gatherings are difficult to manage. 🙂 But, we do it.
I am struck, again and again, about how fully and mindfully you listen to Charlie. And not simply with your ears. You and Jim listen with your whole selves. ‘Tis a beautiful and rare thing, Kristina.
Wishing you the best for your whole family this thanksgiving.
best,
lisa
Darn treats at school! Seems like that happens a lot to poor Charlie! The things we do that become a routine in our lives because of our kiddos need for routines. My “rice” is making tons of pancakes at the beginning of the week and freezing them, as that is Sam’s vice. Our SLP is trained in an autism feeding program, of which we went through with her for 12 weeks this summer. To no avail, still back with the same foods.
Wow. Incredible journey with the food throwing. I’ve often wondered how that was going – such nice news to hear there’s an answer. Phew!
So did Charlie eat the bagel and turkey? Does he like the HFS bread?
Leo, a fellow GFCF kid, goes thru phases for lunch and is currently anti-sandwich. He can’t eat anything offered in the cafeteria and he can’t use the microwave. So it’s cold pasta, roll-ups, chili, chinese food (and sushi too like Charlie!) mostly.
But he’ll sometimes eat bread baked from our bread machine with a HFS mix. Funny, we never used the machine that we got as a wedding gift. Who would’ve thought I’d be using it for my Autistic son’s GFCF bread? It’s been quite useful! But I never seem to remember to buy the stuff and find the time to do it. So, sans sandwich the days seem to be.
I am considering starting my son on GFCF, but here in Minnesota, the schools have to offer GFCF offerings if you have a note from the doctor saying that is what they need to eat
Very interesting, Sarah—we lived in St Paul when Charlie started on the diet. It’s an interesting struggle to work on—needless to say, though, I much prefer it to strategizing how to help Charlie through really difficult behaviors (the SIBS he has had). I have tried Charlie on quinoa and will try again—he turned his nose up at it (I have acquired a taste for it—ate his leftovers).