What Works For Us: Nutrition
Remember how I told you that after Marshall was diagnosed, I checked out all the books in the library (okay, a lot of them) related to autism? Well, there’s one tiny detail I excluded there. I checked out most of the books on autism, but none of the books that discussed the relationship between nutrition/diet and autism. I knew they were out there. I knew I was interested. I knew I was not ready for that information.
For better or worse, my brain knows its limits. I put things into boxes and only open them when I’m ready to empty out the contents and deal with what’s inside. I waited until Marshall was two and a half to open and empty the contents of the autism box. And when Marshall was three and a half, after wrapping up a busy school year, I was ready to open and empty the box related to diet and nutrition.
The first thing we did, even prior to my in depth research, was eliminate artificial food dyes. I knew enough people who swore that it made a difference for their kids, and knew that artificial dyes didn’t offer any nutritional value to begin with-- we had nothing to lose. Eliminating dyes may sound easy enough, but you would not believe alllll the places they lurk. White icing. Macaroni and cheese. Certain flavors of chips. Cereal bars. The list goes on and on and on. The process got a lot easier once I got to know the usual items we purchased and started shopping at Aldi more frequently. (All Aldi brand foods are free from artificial dyes.)
Eliminating artificial dyes was an eye opener for us. It was our first glimpse at what kinds of ingredients were entering our son’s diet somewhat unnoticed, and how they impacted him. He was a little less volatile without food dyes—it wasn’t a dramatic change, but it was enough that we knew they were worth avoiding. Once we saw a change in Marshall, I knew it was time to further investigate what other interventions might be out there.
Back to the library I went. Wes and I took a surprise trip overnight to see my best friend for my thirtieth birthday, and I spent all of our time in the airport and on the flight immersed in books about the relationship between diet, nutrition, and autism. It was honestly fascinating, and I couldn’t get enough. There is a very large population of medical professionals and dietitians who believe that the gut health/brain connection is a significant factor in autism, even if there are disagreements on how to best remedy the issues.
Reading about this connection over and over gave me more motivation to try diet intervention. The other significant factor that drove me into the depths of nutrition was my personal preference to keep my child off of medication for as long as humanly possible. I am not anti-medication, and I’m so thankful that we live in an era where medication exists to help so many chronic issues. However, with my sweet boy’s little developing body, Wes and I both feel very strongly that we’d like to do whatever we can to allow him to grow and mature without the possible implications of prescription medication.
I read book after book that shared some of the same concepts, specifically related to gluten and casein. Casein is a protein found in all animal milks (I didn’t know this) and gluten is a group of proteins found in several grains, most notably wheat. I’m totally going to botch the science behind this, but basically, there are several studies that show that some people on the autism spectrum lack the ability to appropriately break down gluten and casein. As a result, the proteins are released into their system and can cause a variety of emotional and behavioral symptoms, such as sleep disruption, mood swings, anger issues, and fogginess. You’ll really need to do some reading on your own if you’re interested in this because, like I said, these are my less than scientific Lindsay words of how I interpreted and categorized what I read. A lot of the case studies and testimonials sounded promising, and I couldn’t wait to get home, get organized, and get started with some attempts to modify Marshall’s diet and see if it would help.
It seemed as though a gluten free, casein free diet (GF/CF) was the most common intervention. The thought of eliminating these two major proteins was overwhelming, and I knew I needed to enlist help for the process. I scheduled an appointment to discuss our plan with Marshall’s pediatrician, and asked his teachers and therapists if they had encountered students on the spectrum who followed a GF/CF diet. With lots of help and guidance along the way, we were advised to start by eliminating gluten, as it takes longer to leave a person’s system, and to keep written notes of any differences over the course of the first 6 weeks.
Marshall’s first gluten free day was the day after my 30th birthday. We were attending a birthday party for a family friend that day, and it was sort of a trial by fire situation. While being on a restricted diet can be challenging, I wanted to be sure that Marshall didn’t miss out on normal life and, most specifically, social situations. It’s kind of ironic that diet intervention can be a isolating for a kid who needs to be immersed in the world as much as possible. Anyway, I planned ahead, told Marshall that he would have a treat when everyone else had cake, but his would look a little different. We ate lunch before the party, he played and had fun and ate a gluten free cookie when it was time for cake. It was a success, and slowly but surely we made our way through the first six weeks. Marshall was already a pretty picky eater, so we essentially found gluten free versions of his favorite foods (cereal bars, pretzels, crackers, chicken nuggets, and bread for peanut butter sandwiches.)
I read in several books that some people’s symptoms could get a little worse before they got better, and we experienced this within the first few days of removing gluten from Marshall’s diet. He has not been a great sleeper for a myriad of reasons (more on that in upcoming posts), but he was especially restless the first few days we removed gluten from his diet. As we gained our footing and became more confident, it got easier and easier to adapt and continue on with normal life. By the end of the six weeks, we noticed that he was overall calmer and less “foggy” in his interactions. We also reflected back on instances when he would have meltdowns and the only thing (literally, the only thing) that would calm him down were certain foods with gluten in them, namely goldfish. One particular instance that will forever be etched in my mind was a vacation we took the summer before he was diagnosed. He literally lost his mind when we arrived for some reason, was completely irrational, and the only thing that calmed him down was goldfish crackers. It was like Jekyll and Hyde. In the moment, I was so emotionally overwhelmed and upset that I couldn’t calm my child down that I was just happy something settled him. Cuddles or typical comforting techniques had never been soothing to him at that point, so we were often at a loss on how to calm him down when he was hurt or sad, much less upset or angry. Many of our revelations on the power of diet intervention have been based less on what we see and more on the absence of things we never noticed until they were gone. There were many behaviors that we attributed to other issues that improved with diet intervention. He is less foggy, more rational, and has significantly fewer meltdowns as a gluten-free child.
After 6 weeks of being gluten free, we removed casein as well. Removing casein was a little easier, as we had already taken on label reading and fact checking and had gotten used to being vigilant about what Marshall ate. Marshall loved milk as a toddler, but had stopped drinking it cold turkey after a stomach bug when he was two and half. This helped the casein removal process significantly. Most of the products that we had started feeding Marshall (gluten free chicken nuggets, gluten free pretzels, etc) also happened to be casein free as well. The hardest thing about removing casein was eliminating gluten free pizza from our rotation, and having to be overly cautious about other processed food. Casein can lurk under a lot of different names, so it can be tricky to find products and be 100% certain that they are casein free, unless they are labeled as such. We fell in love with Enjoy Life products, as they are all gluten free, dye free, and casein free.
Casein only takes 7-14 days to leave a person’s system, so once we had been gluten free for a total of 8 weeks and casein free for a total of 2 weeks, we felt comfortable reintroducing them to see what would happen. I honestly didn’t know what to hope for—part of me hoped that there would be no “reaction,” and we could go back to feeding him without too much thought. I missed eating at restaurants and making last minute decisions about meals. I missed attending social gatherings without thinking through what food would be there and what we might need to bring for Marshall to feel included. The other part of me hoped, in a weird way, that we would see a “reaction” and know that what we were doing was working. Marshall doesn’t have any true allergies—he doesn’t have true medical reactions to these foods—but his behavior seemed different enough that we assumed a diet free of these items was helping him.
We “saved” our reintroduction for a family outing. Now, if we were being scientific, we would have just given him one thing (gluten or casein) and not both so we could identify if one or the other was helpful. We were too impatient, if I’m being honest, and the perfect opportunity presented itself on our annual trip to the pumpkin patch. Wes loves donuts, quite possibly more than any other food, and the pumpkin patch we visit makes fresh donuts. They are amazing. I don’t care for donuts, usually, but I eat one at the pumpkin patch every year. Marshall, of course, loves them too, so we decided to let him have one. We sat down as a family- Wes, Marshall, one-year-old Joey and me. We watched Marshall eat his donut, somewhat cautiously, and enjoyed the nice weather. When Marshall finished his donut, he asked to go home.
The rest of the weekend seemed relatively normal—nothing stands out to me as I reflect on it. I had read that a behavioral “reaction” to gluten or casein was most likely to occur 1-3 days after consumption, which is the other reason that people often have a hard time attributing behaviors to certain foods. Marshall ate the donut on Saturday. On Monday, two days later, he had an incredible meltdown at preschool, and screamed and cried almost the entire three hours. Mondays were his favorite day at school—they got to swim! He was inconsolable, and the teachers could not find a cause. He had no fever, no illness, and the next day he was fine. We knew in that moment that we needed to continue down this path we were on. with checkpoints along the way.
It has become part of our natural life to plan ahead for Marshall and food. Over the last two years, we’ve slowly cleaned up what he eats, and I’m proud to say that not only is Marshall gluten free and casein free (with the occasional break for ice cream because he handles casein better than gluten), but he now eats very little processed food. Our initial gluten free, casein free meal planning was mostly survival—we replaced the foods he was willing to eat with foods that seemed similar. It really was just a glorified junk food diet. That phase definitely served a purpose, as it helped us to see that GF/CF food, even processed, was a step in the right direction. I knew it wasn’t where I wanted to land, but I was happy to see improvements in my son.
I’d be lying if I told you that diet intervention was easy. But, I can promise you that it has been worth it. Like anything, it really has been a process. We eliminated dyes, then gluten, then casein, and slowly, as we got into a routine, we removed as many processed foods as possible—when we finished an item, like cereal bars, we just didn’t buy any more. Being at home this year gave me the freedom to really work through this process and find what works for us—I currently bake Marshall’s bread and any baked goods he may consume from scratch. This may not be something I can maintain forever, but it sure feels nice to know exactly what’s fueling him. I also found an integrative medicine doctor who helped me make sure Marshall was getting key nutrients for his development. Based on a few quick blood draws, she was able to guide me on supplementing a handful of key nutrients that Marshall’s restricted (and picky) diet wasn’t providing. This gave me peace of mind to continue on the path we’re on.
If you told me two years ago what Marshall is willing to eat today, I wouldn’t believe it. I’ve always heard success stories about how even the pickiest of eaters adapt over time, but I’m truly amazed each and every day. I wouldn’t trade one minute of the over-planning, expensive grocery trips or late nights in the kitchen preparing for what lies ahead. Marshall is 100% medication-free, and I attribute some of that to our diet intervention. (You’ll have to stay tuned to hear the other factors that I believe contribute to our current medication-free state.)
One final note that’s important for me to include: there is no judgment here for how you choose to feed your child. Before I was ready and interested in diet intervention, Marshall ate lots of fast food, processed snacks, sweets and dyes. I was surviving, and we were happy in that phase until we weren’t. Moms need to stick together—we know our kids best and we’ve got their best interests at heart. Our nutrition is far from perfect, and my kids still eat very few vegetables—but hope is on the horizon. There’s always room for improvement.
If you’re asking my advice, I’d say take the next step you know you can handle and go from there. Read the testimonials. Go to the library. Find a medical professional who is on board and willing to help. Talk to your spouse and the people in your child’s village and build yourself a support team. Leave the box closed if you’re not ready for it yet—it will be there. Love your child the way they need it today, and don’t be afraid to try something “out there” for the sake of your kiddo. I’m living, breathing, McDonald’s-loving proof that change is possible—and beautiful.