I have seen some recent posts on the Fun and Function Facebook page about ‘the diet’ and if it works for kids on the spectrum. Our family has been using the diet for several years, so I figured it was time to write about it. Please note that although I am a trained healthcare professional, I am not a doctor and I don’t know your child. I am speaking strictly from personal experience and my badge as ‘autism mom.’
Admittedly, I fought it tooth and nail. It was my husband’s idea and I laughed when he suggested it. “Yeah, right” I thought. He wasn’t really doing any of the cooking or the grocery shopping at the time, so in my mind I was thinking that he wasn’t really thinking at all. I was working full time, caring for two-year old twin boys and dealing with a child recently diagnosed with autism. I barely had time to breathe, let alone do much of anything else.
A friend convinced me to try it a few months later. It was Will’s speech therapist whose son is also on the spectrum. She had tried (without success) the diet for her son. Although the special diet did not work for him, she did significantly change the eating habits of her family. I decided to investigate. We have been advocates of the diet now for three years.
If you are considering trying the diet for your child on the spectrum, there are some things you should know and think about before starting. The following is an attempt to help with that, with my own commentary added in.
First, do your research. The true diet consists of a gluten-free, casein-free, soy-free protocol. There is a fabulous resource, Talk About Curing Autism that can provide you with all the information you will need to get started. Be forewarned, some of the information will drastically change the way you view food and the food industry overall. Also, gluten (wheat protein), casein (milk protein) and soy are in just about everything you put on your table and use in your house. Very often, when gluten or casein is left out, the ingredient used to replace it is soy.
Second, find a doctor that can help you. The Defeat Autism Now website can point you to a list of doctors (local and otherwise) that use the protocol to treat children with autism. I found a local doctor that was great for Will and helped us tremendously. My friend Rob flies his son to Texas to see the leading authority on the topic. Either way, it’s always helpful to have some medical back-up, just in case.
Third, commit to it as a family. It wasn’t fair for my husband to eat pretzel rods in front of Will, knowing full well that he couldn’t have them. I found it was just much easier for us all to do the diet so Will didn’t feel excluded and I didn’t have to cook twice. As most of you know, I have enough trouble cooking as it is!
Fourth, be prepared to pay. Gluten-free, casein-free, soy-free foods are becoming easier to find and much more acceptable, but they’re not cheap. I can easily say that my food bill tripled in the first year on the diet. I also switched to organic whenever possible, so that didn’t help my pocketbook. It is not always an easy thing to accept or allocate when you’re budgeting. It definitely pays to shop around, including online, to find the best prices.
Fifth, read the labels on everything. You will be very aware of how much longer your shopping trips take. I am now that annoying person who blocks the aisle while reading the label on a can of soup or on a package of fish sticks. Ugh! If you can’t be 100% certain that is gluten, casein and soy-free – don’t buy it.
Sixth, follow the protocol. It’s not just the diet, but some other suggested treatments that go along with it. We did them all – supplements, yeast treatments, heavy metal chelation, body ecology rebuilding. It takes a while and it takes some patience. If you are going to do this, don’t do it halfway. You need to be strict with the diet and the treatments to make them work. That means all the time – birthday parties, at the pool during the summer, holidays.
Finally, implement slowly. It can be absolutely overwhelming to try and change everything out all at once. Start with one item, like milk. Over the course of a week, swap out a few more items, like pasta, then cheese (oh, how I miss the cheese!). You will find it much more manageable this way, trust me.
Some products I really like: Ian’s frozen foods, Udi’s Gluten Free, Tinkyada pasta, Earth’s Balance spreads, Daiya cheese. All of these have become staples in our house. You will need to experiment and find the things that work for you and your family and lifestyle. It takes time and persistence. Sometimes it means that you are going to waste some food. Don’t buy anything in large quantities until you are absolutely sure. I learned that one the hard way. Be realistic – I had this idea that I was going to turn into some fabulous chef/baker and cook everything from scratch all the time every day. We all know how that turned out.
I will tell you this, however. It was all worth it – every penny, every painstaking trip to the grocery store, every label read was worth it. Within 24 hours of just removing milk from his diet, Will was a whole new child. He became less combative, more verbal, slept better and I was able to get him potty trained. Again, this is just my own personal experience. We have moved on to the next phase of the diet with him, adding some things back in over time to see what he can tolerate and what he can’t. To this day, I can tell when he eats cheese or yogurt, because his nose will run incessantly. He won’t drink milk of any kind (almond milk or cow’s milk or any other animal, mineral or plant based kind of milk). He still takes his supplements, although it gets harder and harder to sneak them into his foods. I’ve had to make some adjustments there. I’ve had to make some nutritional changes to figure out how to get more calcium in his diet, but overall he is still happy and healthy and progressing.
When Will was first diagnosed, I had two goals. One was to get him to be verbal. The other was to make sure he got to go to a mainstream kindergarten. He finally became completely verbal at the age of 3 & ½. Last week he got on the bus and went to a mainstream kindergarten class alongside his brother.