As Emma began to regress, starting at around 13 months old, it was not just what I believed to be typically “autistic” behaviors – lack of eye contact, delayed speech, obsessive-compulsive behavior, rigidity – that regressed, but things I didn’t expect, such as the restriction of foods. Slowly, just as her speech began to disappear, so did her ability to try new foods and after a few years, a paring down of foods that were a staple to her diet fell away as well.
The following is a list of the foods Emma will eat. Anything else she refuses.
Mango Fruit Leathers
Wheat toast with Organic Raspberry Jam (must be the red labeled wheat toast from Whole Foods & The Organic Raspberry Jam from Whole Foods)
Horizon Vanilla Milk – occasionally she will drink the Horizon Chocolate Milk
Stonyfield Chocolate Yogurt (She use to eat the caramel yogurt as well, but they discontinued it.)
Motts Apple Juice (this was an issue in Costa Rica as they had a different brand and she refused to drink it, though eventually did, cut with water)
Baby Bel Cheese
Grated Cheddar Cheese – must be orange
Chips Ahoy (she will not eat any other kind of cookie)
As a baby Emma was a healthy eater and tried just about anything I put in front of her. At 9 months she ate a mushroom-barley soup I made. I recorded this milestone in her baby book.
Many people believe that autistic children are unable to process gluten and dairy, others believe that their child has food intolerances which adversely effect their behavior and some believe that a gluten free/casein free diet has cured their child of autism. While I have never met a cured autistic child or personally know anyone who has, I do know of one child who clearly functions better without dairy in their diet and a number of autistic children who are allergic to a variety of foods.
In October of 2004, we began working with a DAN (acronym for Defeat Autism Now) doctor who was also a pediatric nutritionist/allergist. We removed all dairy and wheat from Emma’s diet. At that point she was eating a limited, but varied amount of foods such as scrambled eggs with cheese, a wide variety of fruits, all flavors of yogurt, ham, turkey, chicken, dried fruits, carrots, etc. In retrospect her diet seemed limitless in comparison to what she whittled it down to.
Once on the gluten free/casein free diet she refused to eat any new foods to substitute for the old. I stayed up, often until after midnight, baking wheat-free breads made from rice flour, almond flour, and almond butter. I found web sites that specialized in casein free/gluten free products and recipes. I developed a way to make my own organic pureed fruit leathers, which I spread onto baking sheets and dried in a low heated oven for 10 hours or over night. To celebrate her third birthday I made an entire menu of gluten free/casein free foods. Emma would not touch any of it. Even refusing the birthday cake I made, which everyone else seemed to like, including Nic. Though he confided in me later that he didn’t like it as much as a ‘normal’ cake, but didn’t want to hurt my feelings.
After three and a half months and no change in her behavior, other than a 10% loss of body weight, we took her off the diet and slowly introduced her old foods that she once loved. Only now she refused to eat most of the old “fail-proof” foods too. It was as though she never liked them to begin with. The DAN doctor advised us to introduce one food we knew she liked – we chose cheddar cheese – and to give her a great deal of it and then wait to see if we saw a discernable change. I gave her several ounces of cheese, which she ate and then waited to see what would happen. After several days and no change, the nutritionist advised us to introduce yet another food. We repeated this exercise over and over again.
Occasionally now Emma will take a ‘bite’ of some other food – say grilled chicken – with great reluctance and protest. I remember a friend telling me about her sister who refused to eat any foods that were not “white”. I was horrified by the story and remember thinking I would never have a child like that, as I prided myself in being an excellent cook and would never tolerate that sort of “behavior.” I have since come around to the pick-your-battles way of thinking. The food battle is one I am just not willing to engage in any longer.
Late at night when I am caught in a cycle of worries, I console myself with the idea that there are certain indigenous populations that survive quite well on extremely limited foods, such as a group of Eskimos who survive on whale blubber and little else. For now that consolation will have to do.
Lily, my own sister, only eats about seven things. She’s 19. She used to be of the “white food” persuasion, but now her diet is limited to: Hillshire Farms Oven-baked turkey breast, whole wheat baguettes or slices, hot tea, water, Jell-O chocolate pudding, Keebler ice-cream CONES (not ice cream), asparagus, and shitaake mushrooms.
Lily has obsessive disorder (undiagnosed, but it’s pretty clear). I think the food thing has a lot to do with keeping a certain order in her life, as opposed to other things. Maybe this is true in Emma’s mind, as well…? Seems to fit with the previous post about the photographs. Hmm.