When my son Marshall was diagnosed with autism, I was ready to jump into action. We immediately enlisted in occupational therapy and enrolled him in a preschool specifically for kids on the spectrum. We pushed up our sleeves and continued the hard work of early intervention.
Lurking in the background for that first year was the idea of diet intervention. I knew special diets existed and that people swore by them. I expected the doctors to share them with us along the way. But as we tumbled towards the summer after his diagnosis, I took a look around. I recognized that diet intervention wouldn’t necessarily be presented to us– I would need to look for it off of the beaten path.
Here’s the truth. Before my research, I would say Marshall had a standard American diet. He ate Goldfish crackers, cereal bars, drank milk, and ate fast food occasionally. We tried to limit his treats and feed him vegetables. We viewed fun kid foods as something he was entitled to, and the idea of a diet overhaul made me sad. I was overwhelmed at the thought of taking on one more thing. I kept diet intervention in the waiting room of my brain for that first year. (You know, the place all that extra information gets shoved until you’re ready for it.) And when I was ready, I opened the door.
Find Your Footing
Diet intervention takes a lot of research and planning. I wasn’t ready at first. But almost a year after Marshall’s diagnosis, we had settled into a routine. When my husband and I took a trip for my birthday, I brought along every library book I had found on diet intervention. I devoured the information while we traveled, sticking post-it notes on the pages that stood out. In my research, I discovered that many people on the autism spectrum are unable to properly digest gluten and casein (a protein found in all animal milks).
When these proteins are not broken down properly, the enter the bloodstream and behave as opiates, causing many of the same symptoms as opiate use: fogginess, irritability, emotional instability, and difficulty communicating. It’s fascinating, really. As I read more and more, I knew we had nothing to lose in trying diet intervention. The plane ride home was a turning point. Every few pages I would elbow Wes and share a tidbit of what I was reading, excitedly connecting the dots between Marshall’s life and the anecdotes in the books I read. I was assembling a plan and getting excited! When we got home, I called Marshall’s pediatrician to make sure my ideas were safe and away we went.
First, we eliminated artificial dyes. I knew several friends whose children’s behavior dramatically improved when artificial dyes were removed from their diet. While this may sound easy, artificial dyes lurk in unexpected places, like white icing, vanilla pudding, and even some marshmallows! I decided this might be the biggest bang for our buck and a good place to start. First of all, artificial dyes don’t have any nutritional value whatsoever, so I knew that we weren’t missing anything by removing them. Secondly, I read that people typically saw an improvement in behavior relatively quickly. Aldi does not use any artificial dyes in any of their store brand items, so I started shopping there, especially for snacks and cereals. While label reading took getting used to, eliminating artificial dyes gave us the momentum to keep going. Eventually, we eliminated gluten and casein as well.
Unfortunately, diet intervention is an all-or-nothing gig, at least at the very beginning. When I reached out to Marshall’s teachers, therapists, and specialists, the number one thing they emphasized was the need to be consistent. In their experience, they witnessed families “try” to eliminate certain foods and then fall back into old habits before truly giving things a fair chance. Different substances stay in the system for varying amounts of time. For example, artificial dyes leave the body in about two days, depending on the amount consumed. Gluten can take several weeks to leave a person’s system. Casein (dairy) is somewhere between the two. While some people notice improvements sooner than expected, the only way to know for sure is to be consistent for a dedicated amount of time.
The very first day Marshall was gluten-free, we attended a birthday party for a family friend. I remember thinking through what would happen when she blew out the candles on her birthday cake. Would Marshall be upset if his treat wasn’t the same as everyone else’s? What about all the other party food? Thankfully, I gathered a variety of gluten-free treats and snacks before getting started. I had researched, combed the aisle of every local grocery store, and thought through possible scenarios. I explained to Marshall before the party that when it was time for everyone to eat cake, he would have a special bag of chocolate chip cookies instead. We fed him dinner before the party, brought along snacks, and watched him like a hawk so he didn’t snag anything from the community food options. The whole thing went much more smoothly than I expected! I distinctly remember looking around the backyard, actually enjoying myself, and realizing that we could do this.
Set a Timeline
Diet intervention may not be for everyone. When we started, we weren’t sure it was for us. When we began each phase of eliminating certain foods, we set a goal and marked it on the calendar. That way, our hard work had an end date. If we reached that date and didn’t see any improvements, what was there to lose? We could just return to normal. After each milestone, Wes and I sat down to discuss what we thought. It was important for us to be on the same page in order for things to work. We chose to eliminate one ingredient at a time so that we could see what difference each made.
We went artificial dye-free for two weeks, gluten-free for six weeks, and then removed casein for two weeks as well. Each time we sat down to re-evaluate, we truly couldn’t believe the progress Marshall made, and how much easier things got as we established habits and routines. We’ve also chosen to reintroduce gluten and casein at different points along the way as a checkpoint. In my reading, some families noticed that over time, the gut was able to heal and certain ingredients weren’t as detrimental. For Marshall, we choose to reintroduce casein in small doses for a few weeks each summer, as the effects aren’t as significant as gluten and artificial dyes and the recovery tends to be quicker.
Keep a Journal
In all my research, there was a consistent theme: track the progress somehow. Without writing down behaviors, it’s easy to second guess improvements along the way. While diet intervention wasn’t a magic cure for all of his struggles, we saw a dramatic difference in Marshall’s sleep, speech, connection to others, and overall emotional stability. Unexpectedly, his congestion (we assumed he had seasonal allergies) disappeared, as did the bags under his eyes. By keeping anecdotal notes, we were able to see improvements we may not have noticed otherwise.
I’d be lying if I said that diet intervention is easy. Initially, it can feel like a lot. One of my biggest motivations for at least making an attempt was focusing on the future. Where might Marshall be in a few months, a year, or even a few years? What if the choices we made could change his trajectory? I knew that if I didn’t try diet intervention, I might always look back and say “what if?” Specifically, one of our goals is to keep Marshall off of medications for as long as possible. While we are not anti-medication and understand there may be times where it is necessary, we never want to choose medication without trying all the other possible lifestyle changes first. At age 3, when we began our journey with diet intervention, I believe we truly changed to course of Marshall’s development. While we can never fully be sure of which factors have made the most impact, we believe that thanks to diet intervention and chiropractic care, Marshall takes no medications, sleeps well, communicates appropriately, and is a genuinely happy kid.
When we first began diet intervention, Marshall went from a standard American diet of processed food to a gluten-free, casein-free version of the same diet. While we saw improvements, I have continued to delve deep into the idea of food as medicine for Marshall. Currently, his diet is mostly paleo. He is thriving and we truly believe that his diet is a big component in his success.
Any recipe labeled “Whole 30” or “Paleo” is gluten-free, casein-free, and artificial dye-free.
Check out cookbooks from the library! There are a lot of great ones out there.
Keep it simple. Repeat meals for a few days if you find one your kid enjoys!
Don’t be afraid to ask for help! Keep asking until you find a good resource. We relied on our pediatrician, an experienced therapist, and an integrative medicine doctor.