In Part Two of Unraveling the Mystery of Autism and Pervasive Developmental Disorder, I have tried to include all of the helpful tips that took me years to discover, through trial and error and endless research. Here is a selection of them.
Frequently Asked Questions About Dietary Intervention for the Treatment of Autism and Other Developmental Disabilities
Disclaimer: The following is not medical advice. All changes to your child’s diet should be supervised by a physician or a qualified nutritionist.
Q: I don’t think my child has allergies, or that allergies could cause autism. Why should I try removing foods from his diet?
A: Although parents have been reporting a connection between autism and diet for decades, there is now a growing body of research which shows that certain foods seem to be affecting the developing brains of some children and causing autistic behaviors. This is not because of allergies but because many of these children are unable to properly break down certain proteins.
Q: What happens when they get these proteins?
A: Researchers in England, Norway, and at the University of Florida have found peptides (breakdown products of proteins) with opiate activity in the urine of a high percentage of autistic children. Opiates are drugs, like morphine, that affect brain function.
Q: Which proteins are causing this problem?
A: The two main offenders seem to be gluten (the protein in wheat, oats, rye, and barley) and casein (milk protein).
Q: But milk and wheat are the only two foods my child will eat. His diet is completely comprised of milk, cheese, cereal, pasta, and bread. If I take these away, I’m afraid he’ll starve.
A: There may be a good reason your child “self-limits” to these foods. Opiates, like opium, are highly addictive. If this “opiate excess” explanation applies to your child, then he is actually addicted to those foods containing the offending proteins. Although it seems as if your child will starve if you take those foods away, many parents report that after an initial “withdrawal” reaction their children become more willing to eat other foods. After a few weeks many children surprise their parents by further broadening their diets.
Q: But if I take away milk, what will my child do for calcium?
A: Children between the ages of one and ten require 800–1000 mg of calcium a day. If the child drinks three 8-ounce glasses of fortified rice, soy, or potato milk per day, he would meet that requirement. If he drank one cup per day, the remaining 500 mg of additional calcium could be supplied with one of the many supplements available. Kirkman Labs makes flavored and flavorless calcium supplements in various forms. Custom-made calcium liquids can be mixed up by compounding pharmacies using a maple, sucrose syrup, stevia, or water base.
There are some very good milk substitutes on the market; check for varieties that are calcium-enriched.
Q: Is this diet expensive?
A: There is no denying that many of the gluten-free ingredients you will need to keep on hand are more costly than the staples you are used to buying. However, when you order by the case, the above milk substitutes cost about the same as cow’s milk. Some parents report that their autistic children were drinking over a gallon of cow’s milk per day but these same parents were reluctant to switch to slightly more expensive rice milk.
As with all foods, convenience products such as frozen rice waffles are expensive, but making these from scratch is easy and inexpensive. Bulk rice flour in an Asian grocery store is about 75c/pound, and Lisa Lewis’s book Special Diets for Special Kids is filled with recipes that beat anything you can buy off the shelf. You’ll find yourself making rice and potatoes more often instead of ordering out. You might even save money.
Q: Isn’t milk necessary for children’s health?
A: Americans have been raised to believe that this is true, largely due to the efforts of the American Dairy Association, and many parents seem to believe that it is their duty to feed their children as much cow’s milk as possible. However, lots of perfectly healthy children do very well without it. Cow’s milk has been called “the world’s most overrated nutrient” and “fit only for baby cows.” There is even evidence that the cow hormone present in dairy actually blocks the absorption of calcium in humans.
Be careful. Removing dairy means all milk, butter, cheese, cream cheese, sour cream, etc. It also includes product ingredients such as casein and whey, or even words containing the word “casein.” Read labels—items like bread and tuna fish often contain milk products. Even soy cheese usually contains caseinate.
For more information on dairy-free living, there are some excellent books. The book Whitewash: The Disturbing Truth About Cow’s Milk and Your Health by Joseph Keon cites the results of several research studies that conclude that milk is an inappropriate food for human children.
Q: I might be willing to try removing dairy products from his diet, but I don’t think I could handle removing gluten. It seems like a lot of work, and I’m so busy already. Is this really necessary?
A: What you need to understand is that for certain children, these foods are toxic to their brains. For some, removing gluten may be far more important than removing dairy products. You would never knowingly feed your child poison, but if he fits into this category, that is exactly what you could be doing. It is possible that for this subgroup of people with autism, eating these foods is actually damaging the developing brain.
Q: Removing both foods at once seems overwhelming, and I’m afraid of my child’s reaction. Can I start slowly?
A: Many parents strongly suggest that you try removing dairy first, and then work on planning for a completely gluten-free diet. Gluten can take more effort and some education on your part, and preparation may take a bit longer. Some physicians recommend doing this diet one step at a time to accurately record the child’s response and to reduce withdrawal reactions. The experts seem to agree that the milk and wheat proteins are so similar to each other that if one is a problem, the other should be removed as soon as possible.
Q: How do I know if this applies to my child?
A: Although there is some peptide testing available, the waiting time for results can be long, and widespread use of a reliable test is not yet available. The researchers agree that this is a very common problem in the autistic population, so a trial period on the diet may be your child’s best bet. Although a lab result is more convincing to a doctor, the noticeable improvement many children exhibit will usually persuade even a reluctant spouse to support the diet.
Many affected children who eat a great deal of dairy- and/or wheat-based foods will show changes within a few days of their elimination. The diet must be strict. Many parents have found that their child did not improve until they discovered and removed a hidden source of gluten or dairy. Noticeable changes in eye contact, sociability, and language are one sign that diet is an important issue. Another thing to look for are changes in the child’s bowel movements or sleep patterns.
Q: When my child was taken off just dairy, he improved greatly, but then he started eating a lot of wheat, perhaps to make up for the opiates he was missing. Will I see the same kind of noticeable improvement when I remove gluten?
A: Children who eat a lot of gluten should show an improvement when it is removed. Some parents say that their child’s response was more obvious with dairy, and some with gluten. Unfortunately, gluten seems to take longer to disappear from the system than casein does. Urine tests show that casein probably leaves the system in about three days, but it can take up to eight months on a gluten-free diet for all peptide levels to drop. If this intervention is followed by a deterioration or regression (a withdrawal-type response), stay the course! It almost certainly means that your child will benefit. This may seem like a lot of work for an uncertain payoff, but in the lifetime of your child it may be the most important step you take.