Autism and food
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If you don’t have a child with autism, you may never have heard the term: “PDD.” It stands for Pervasive Developmental Disorder and it’s a common diagnosis for young children on the autism spectrum. It is more vague than autism, and even though it’s been explained to me many times, I have to admit that I don’t really get the distinction between the two. So there’s a lot to dislike about “PDD” — it’s not in the common lexicon, it’s confusing, and when you do finally get a handle on what it is, no one in the real world knows what you’re talking about.
But I like the word “pervasive” a lot, because no matter which diagnosis your child has, this apt term tells it like it is: This diagnosis is going to affect everything in your child’s life. Not just speech, not just social skills, not just learning, not just fine and gross motor skills; everything. Including food.
Brooks’s eating challenges started at birth. We know now that the muscles in his mouth, the same ones that later failed him when he tried to speak, were too weak to breast feed. At the time we simply settled into bottle-feeding and chalked it up to one of those situations where “plan b” was not so bad. His next major detour off the “typical” food road was when he turned one and we switched from formula to milk, which prompted him to go on a liquid strike. Even our efforts to return to formula were fruitless; we had, it seemed, ruined his experience of drinking beyond repair, and that was that. So for about a year, Brooks didn’t drink. Fortunately, he never failed to thrive: he was still eating a lot of water-based baby food.
A large part of his initial therapy was re-introducing liquids, and slowly, he did start to drink again. His eating habits were picky and compulsive — his “safe” foods were few, and favored for every meal if we let him (and we often had little choice). Then he was done with them, and chose two or three new ones. During this time, we put Brooks on the GFCF (gluten-free casein-free) diet for two major reasons: it was very healthy, and there were anecdotes that it would help his autism, if not cure it. Perhaps that’s the case for a some kids (although none I know), but after a year and a half, Brooks’s major delays persisted. We opted to expand his palate to any food he would try, regardless of its dietary content.
Mealtimes with toddlers are often fraught, but with Brooks, they were always challenging. When he was very young, I had to sing to get him to eat anything. Then it was my turn to go on strike, forcing him into non-musical meals. Our “positive reinforcement” model was never on display as much as when Brooks actually tried a new food — we made up songs for him, we played instruments, we danced (and we are NOT dancers!).
Bit by bit (or, rather, bite by bite), Brooks has expanded his food repertoire into typical childhood favorites: mac and cheese, hot dogs, hamburgers, spaghetti. He eats more with his hands than we’d like him to, he has trouble chewing pizza crust, and I would still sell a major organ to see him eat an actual vegetable. But I no longer have to bring food with me all the time or worry that he won’t find something to eat at a play date, restaurant, or even a birthday party.
Not only is Brooks eating more like an actual person these days (which my husband and I feared would never happen), he’s also talking about food more than ever: check out his inspired recipe for lemonade:
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Cute! I’m with ya on the “PDD” diagnosis. Brooks’s lemonade recipe reminds me of what my son puts in the “water weed soup” he makes from time to time for his toy ducks to eat. He stirs, scoops, and converses with me about “cooking” and with the toys as they “eat.” I throw it out later. I don’t know if it has helped him eat anything new but he enjoys it.
Comment by janny226 — March 11, 2009 @ 11:57 am
Marni — Love your blog. I can tell you that I know many kids, mine included, who had a lot of improvement with special diets. One of the biggest things that people don’t know about GFCF is that for many kids it is important to remove all soy as well (soy and casein seem to cause similar difficulties to many kids) before declaring the diet a failure (though you are right, it does not work for all). I know many people who said it did not work but then removed soy and - Bingo - lots of changes. That said, I also wonder if the diet did help Brooks at a less obvious level, by helping to heal his gut (even if he had no obvious GI problems) which might have helped make him better able to tolerate and more receptive to more foods. My son is an EXTREME example of this– My son basically stopped eating before GFCF because, unbeknownst to us, his gut was being destroyed by foods he was eating — he began self-limited himself to foods that did not make him feel sick until he eliminated EVERYTHING because, in the end, anything he ate made him sick — there was literally nothing left. When GFCFSF began we saw big physical and cognitive changes but we also needed to implement feeding therapy daily for months along with working with a psychologist to get him to trust food again because to him food was “bad” since it made him feel unwell. He actually eats better now and a wider variety of foods on a special “autism” diet than before the diet. Just wanted to offer some different perspectives. Keep on blogging!
Comment by KIm — March 11, 2009 @ 3:05 pm
Marni, as always, beautifully written and easily relatable. (is that a word?)
I loved, loved the video. He is so handsome!!!
Comment by rayna — March 12, 2009 @ 9:30 pm
Marni, this cracks me up. We gotta get these guys together for a serious “cooking” session. Will follows recipes very well, and we do a lot of real baking at our house…but every once in a while Will gets an itch to make “YUCKY WATER,” which is almost exactly as Brooks described it! Flour is a key component…also salt, sugar, lemons, baking powder, and whatever else is on the kitchen counter. As much as I dare him, Will has never had a sip…
Comment by Will's Mom — March 19, 2009 @ 10:52 am
Hello!
Very Interesting post! Thank you for such interesting resource!
PS: Sorry for my bad english, I’v just started to learn this language
See you!
Your, Raiul Baztepo
Comment by RaiulBaztepo — March 29, 2009 @ 8:09 am