Turbulence shook the airplane. I took deep breaths and pressed my hands together. I was flying through a storm to New Orleans for a writing conference, and all I could think was: Oh, god, if this plane goes down, please don’t let Logan remember me as the awful mommy who wouldn’t let him eat sugar.
On the first half of the flight, I had started reading NeuroTribes and was shaken (probably more than I was by the turbulence) by one of its opening anecdotes. The Rosa family, a half-dozen years ago in California, seemed to have taken the exact same path as we were currently on: autism diagnosis of their young son, a gluten-free diet, vitamin supplements. The mother, a writer, had decided to chronicle their journey via a blog.
They wised up, the book stressed, and discontinued the diet after about two years. Their son was miserable, and they were overwhelmed with the amount of work. They realized these miracle “cures” were nothing more than a scam, gave up trying to recover their son, and are now far, far happier.*
Oh my god, we need to stop the diet, I though, panicked.
My timing reading this book was poor. I picked it up after a month of arguments with my husband about the merits of sticking to our grain-free, dairy-free, sugar-free diet–several of which ended in shouting matches.
“We need to add rice,” Jason insisted.
Good god, why? I thought. You’re seriously going to bat for nothing more than tasteless white fluff with no nutrients?
“Why can’t we have rice?”
F if I know, I thought. Because I read about it. And read about it. And read about it. Because it made a ton of sense. Because of the family who introduced the diet to us, and their daughter, recovered from autism.
“Maybe we can do some rice flour…” I hedged.
Part of Jason’s insistence in expanding our food choices was motivated by another recent test we had done on Logan, a food sensitivities panel. He’d tested negative to all the common allergens a few years ago, but with his ears still flaring red occasionally, we’re sure there’s still something in his diet that his body does not like.
Unfortunately, the food sensitivities test only provided more confusion. The only item showing a strong sensitivity was corn (which was the one easy fix: cutting out popcorn with our Friday movie).
But his blood work also showed some slight sensitivities to things like coconut, cabbage, turkey, beef, and chicken. He eats coconut yogurt every morning (plus often in the coconut flour we use) and fermented cabbage every night, and beef and chicken are in heavy rotation in our dinner table. I honestly don’t know if we’d be able to remove these from our diet. (Of course, we also said that about milk and grains at one point…)
Without talking to me, Jason bought Logan a loaf of 7-grain, gluten-free bread. Logan loved it, of course.
7 grains. A far cry from no grain.
I won’t say it’s because of the bread. But as my and Jason’s diet disagreements started to escalate, with more and more arguments and a few more infractions, Logan’s progress at school spiraled downward. From an encouraging start to the school year with three, four, or five stars each day, Logan started coming home with two, one, even zero. He was unable to respect others’ personal space in class and at times uncooperative. Other kids began complaining about him. One morning his teacher and special education teacher grabbed me at drop-off and sternly informed me about the escalation of these behaviors.
They’re going to take him out of the mainstream and put him the special room, I panicked. Oh my god, we need to be more vigilant about the diet.
Then I flew to New Orleans.
NeuroTribes seems to delight in the lack of empirical studies proving any progress due to diet. Any success that it reported, it says, can be attributed to parental reporting and the placebo effect.
Am I that gullible? Are our friends, who the diet worked for, deluded? Are they the lone exception?
I spend the week in New Orleans confused and despairing. I miss my kids, who don’t seem to miss me when I call. The diet makes sense. Then it seems like a load of crap. I want to keep going. I want to quit. I end up blowing it all, eating beignets, jambalya, and creamy, cheesy crab cakes.
And, of course, I get sick.
* Yet… when I tracked down this woman’s blog, she’s still has her son on a low-sugar, “medically managed diet.” She writes about cooking special food to take everywhere and send to school, just like I do. She even titled a post from last month “No, He Really Can’t Have That. Please Don’t Sabotage My Child’s Special Diet!”