Families with Autism Helping Families with Autism

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by Donna Rosinski

A few weeks ago, a mom left a message on my answering machine asking me that question. She had attended our conference on alternative biomedical treatments last fall, and had decided to try the casein and gluten free diet with her child. She felt that her child was responding well, and wanted to make sure that the school was following through. This child was in an early childhood program where lunch was provided for all students.

When she requested casein and gluten free food for her child, the school told her that it was not their responsibility to do that, and that if she wanted him to follow a special diet, she would have to pack a lunch for him every day.

What I found out, after doing some research, is that what this mom was told was wrong. School districts must provide substitute foods at no extra charge to the family if a child is considered handicapped under Section 504 of the Rehabilitation Act of 1973. There are certain conditions that must be met, though. First, the nutrition goals must be written into the IEP, which then allows special education funds to cover the costs. Also, the request must be supported by a statement signed by a licensed physician. This statement must identify the child's handicap and explain why the handicap restricts the child's diet. It also has to specify the major life activity affected by the handicap ( it helps to relate the diet to the educational goals in the IEP). Finally, the statement must specify the food or foods to be omitted from the child's diet, and the other foods that must be substituted. There is a copy of a medical statement form that parents may copy and use in this newsletter. [Note: form is available from the Madison Chapter or ASW]

For most families, the hardest part of all of this may be to get their physician to sign the statement. Many doctors are skeptical about the value of dietary changes in treating autism. It may help to point out that you are not asking the physician to sign a statement saying that the casein and gluten free diet cures autism; you are just asking him to verify that your child has food sensitivities. Parents can point to physical changes that come from following the diet, such as the elimination of chronic diarrhea, which then allow the child to be potty-trained. It is recommended that you avoid using the word "allergies," because traditional allergy testing does not show this type of food sensitivity. It will also be helpful if you are able to document behavioral changes. This means charting your child's behaviors both before you started the diet and after. If you can tell your doctor that your child had six tantrums per day before starting the diet and he now only has two, it will be pretty persuasive.

The next hardest part will be convincing the school district that they are required to do this. The facts that I have presented here do not seem to be generally known by parents, school personnel, or physicians. In fact, when the mom that I spoke about at the beginning of this story talked to the educators at her child's early childhood program, they laughed at her and dismissed the notion that they were responsible for providing casein and gluten free food choices. But after they called the Department of Public Instruction and checked, they stopped laughing. When you are writing your child's IEP, you can not only ask that casein and gluten free foods be provided, but you can also ask for the child to be taught to make appropriate food choices as part of the nutrition goals. And the law applies to older children as well. If the child participates in the school lunch program and has satisfied the conditions mentioned in the second paragraph of this story, the child must be provided casein and gluten free foods at no additional cost, although, admittedly, it is more difficult to control the food choices of older children.

Although this mom persuaded the early childhood program to provide the casein and gluten free food, they then asked her to do the food purchasing (and instructed her not to go to Whole Foods Market!) and asked her to submit the bills for reimbursement. Parents should feel free to refuse such requests. Every school district has food service personnel who are hired to do those things. Since parents of children without disabilities are not required to purchase their children's food, we should not be required to either.