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Sunday, May 2, 2010

The emotions of Starting a special diet


Starting one of the speciality diets associated with autism or any other medical condition or disability may have its benefits, but it will also have some risks. As a parent I always wanted to try diet solutions first. I was so confused at times. The educational "experts" would tell me, "there's no harm in it just try it", but then I'd talk to the medical "experts" who responded, "are you crazy? Do you know how dangerous that can be?" In the presence of the educational experts I felt I hadn't done everything possible for my child if I hadn't tried the diet or supplement they were recommending, but in the presence of the medical experts I felt I had placed my child in risk of great harm by placing them on a diet. I must say it was very confusing.

In our case, I had the oldest tested for food allergies. This seemed to satisfy both sides of the fence. He turned out to be allergic to many things, but the big food item was corn. Before the internet it was not an easy task to figure out how to eliminate corn from his diet. The allergist simply said remove corn, but not all corn is listed as "corn" on the label. My pediatrician I was taking him to at the moment replied pretty bluntly, "oh, you're going to be one of those mothers". His implication was that food allergies weren't really real, but in the heads of their crazy mothers.

It was an amazing transformation! He suddenly could focus long enough to do things he had never been able to do before. It was also very obvious when someone inadvertently fed him something he wasn't supposed to have. I had everyone trained to read the labels and look for corn syrup since this was everywhere and seemed to have the greatest effect on him, so frequently someone would excitedly come bouncing up to me and say, I found something he can have with the other kids that doesn't have corn syrup! When I'd ask what is was usually the answer was popcorn. As my heart sank, I'd go to pick up my child who was totally out of control. I'd try very calmly to get the person to say the name of the food they had just fed my child and ask them what the last half of the word was. Actually, they probably did us a favor. While there were many naysayers they usually became believers when someone fed him popcorn. It was a reaction that was hard to deny.

When I went to school I learned the difference between peer reviewed research and anecdoctal evidence. Now I do understand the skeptisium of my colleages; however, I also understand the desperation of parents who just want to help their children. It's taken me a few years to find where I want the balance to be on this issue in my life, but here it is. I want the parents to determine if these diets work for their child or not. I also want the child to be placed under as little risks as possible, so if a parent asks me to help them with any of the autism diets (or diets to help other disabilities or medical conditions) I give them a list of risks I want them to be careful about. When you remove foods that are a major contribution to the American diet the nutrients associated with those foods are also removed, so the most important risks is nutritional health. Second, the replacement foods can be extremely expensive if you are replacing the foods with a lot of prepackaged foods. Our family lived on the verge of bankruptcy for many years. I do NOT want that for the families I am working with, so I encourage homemade foods and lots of single ingredient foods. (There is no gluten or casein in that carrot.) The last caution is a little different. When you go on special diets those people around you in your community (family, friends, neighbors, church, school personell, etc.) are not sure how to handle this, so many times they just move out of your life quietly. This connection with others is called social capital. It is extremely important to protect your family's social capital, however, lifes challenges tend to erode this capital.

To summarize, if a person comes to me and wants to start a vegetarian diet I do not find ways to convince them not to start the diet. I try to assist the person in starting this diet in a healthy way. Many of the autism diets can be done safely. It's my job to help the family incorporate the diet in their lives in such a way that is healthy for the child and their family.