In the first few years of Tess’s life, she was checked out. She’d stare straight ahead and didn’t respond to us very much. When my wife and I would leave a medical appointment, feeling blue, one of us would gesture to our girl in the backseat and say to the other person: “She’s in there.” We needed to find a way to help her come out of her shell and interact more with us and the world around her.
These symptoms are typical of her USP7 disease: autism, speech issues, and intellectual disability.
Then something happened. At the gym where I worked out, they were doing a 30-day no-bread challenge. It was essentially the Paleo diet, for a month. I decided to try it. And because I do all the cooking in our house, Tess had no choice but to also go on the diet.
Almost immediately, on the new diet Tess began to emerge. She made eye contact with us more, she interacted with us, she responded to the sounds of our voice, and she became more social—just aware of people around her and wanting to connect with them. She seemed more interested in communicating, too.
Other benefits followed. She’d had eczema her whole life up to that point, but before long it disappeared almost entirely. Her gastroesophageal reflux disease (GERD) improved. (It hasn’t gone away, but we used to have to send her to school with 4-5 changes of shirts because of how much she used to spit up, and now we don’t have to do that. She’s also on meds for GERD, which helps too.)
When the month ended, I went back to pizza and beer, but Tess stayed on the diet and will be on it for good.
It’s not exactly the Paleo diet. We’ve taken out a bunch of foods that seemed like irritants, such as peppers, brussels sprouts and alliums (onions, garlic, etc.). And for years she ate eggs every morning, but we swapped those for oats and fruit a while back, and she seems better. It’s complicated by the fact that she also has hyperphagia, meaning that she never wants to stop eating; she has no off switch, so she doesn’t experience the feeling of being full.
Most of her lunches and dinners are this:
chicken or another lean meat, cubed
sweet potatoes or squash, cooked in coconut oil
I’m not an expert. I’m not a biochemist or dietician. I’m just a guy who makes food.
I’m also not saying that this diet is a cure—for autism, or anything else that ails Tess. She still has autism and intellectual disability. She’s still largely nonverbal. And she still has GERD. But the diet seemed to help her in some ways.
We don’t have this entirely figured out. I welcome suggestions. From time to time we still tweak the diet. But here it is in its current form. Below is the list we sent to school with her as school got underway this year (Sept 2019):
Tess is dairy-free (this includes butter), soy-free and grain-free. As for sugar, except in whole foods like fruit, she should have it rarely if ever.
FOODS THAT TESS CAN'T EAT
grains of any kind (wheat, barley, etc.) -- except rice and oats are now ok
jam or jelly
meats that are processed
meats that are fatty
milk in any form
oil other than coconut oil or olive oil - NO canola oil
peanuts (but other nuts are ok)
soy in any form - no tofu, no soy sauce
sugar in any processed form (she can have it in fruits only, basically)