Willing

Navigating the world of Autism has kept me on my toes for the last 4 years and I have had my fair share of sleepless nights because of it. I still have to remind myself every day when I wake up that Autism is just a part of who Nico is; it doesn’t define him completely. I know this in my heart, but sometimes, when he is stimming or scripting or having a meltdown, I worry that Autism is the only thing others will see…it’s the only thing I see. I hate even admitting that because I’m his mother for God’s sake; I shouldn’t even be allowed to think these thoughts, but I want to always be honest here.

Nico has grown leaps and bounds over these last four years since his diagnosis. I truly do marvel at how smart he is. How he sees things in such a unique way. I even enjoy when he is stimming and scripting now that I know more about what causes it. It’s actually quite a relief to understand the “why” behind Nico’s behaviors and I can more easily anticipate when he may have an upswing in them because of all that I have learned from my sweet boy. I just had to be willing to focus on what was important.

One of the first things I was ever willing to do was consider that Nico’s diet may be exacerbating his ASD behaviors and lack of communication. I would have never thought to begin the connection between Autism and diet if it wasn’t for a chance meeting with a dietician. We had a great conversation on the playground one day regarding Nico that lead her to sharing some major theories she, some of her fellow dietitians, and a group of pediatricians she worked with had begun to gather. It was all about the protein found in cow’s milk–casein–and how difficult it is to break down in the body. And because of its difficulty in breakdown, the protein was leaking into the bloodstream and affecting the body and brain. She shared with me that she was having major success with supporting families of children with Autism remove cow’s milk from their kids’ diets and once they did that these children began to communicate. Many of the children she had been working with were nonverbal, like Nico, but once they stopped drinking cow’s milk their language started to just explode.

I felt this was too good to be true and I knew how hard it was going to be to remove milk from Nico’s diet (he basically drank a gallon of milk every 3 days), so I was definitely apprehensive, but the thought of never hearing my son talk was just something I couldn’t bear so I was truly willing to do anything. Within 4 weeks of taking milk out of Nico’s diet completely and replacing it with coconut milk, Nico began using words! I swear on everything I love…it’s true. My husband and I could not believe it. We changed nothing else in Nico’s diet or therapy routines–he kept the same speech therapy schedule throughout this whole experiment–so we knew it had to be the milk.

That unlocked the doors to Nico steadily growing less nonverbal everyday, but in these last years since that first revelation we have seen a steady stream of stimming, echolalia, and other ASD behaviors. We have even recently seen a major upswing in Nico’s stimming, echolalia, and lack of appropriate communication while simultaneously noticing that he is requesting to eat more of his favorite food, Goldfish crackers within a day. He has been avoiding eating some of his other preferred items and only wanting Goldfish, which is made with gluten.

I had done a ton of research in these last years around gluten-free and casein-free diets and their association with Autism. Although much of the research was incomplete or inconclusive, there were pockets of studies that did point towards decreases in ASD behaviors so I have become willing to remove gluten from Nico’s diet. In these last two weeks, we have drastically decreased the amount of Goldfish crackers Nico eats and replaced this item with gluten-free cheese crackers (which thankfully he has taken to very well). With this change, we have actually seen a decrease in behaviors and an increase in appropriate communication again! He’s using full sentences to request needs and wants and seems able to pronounce words more effectively. Remarkably, Nico has an expanded vocabulary and has started to accurately pronounce these words again. Just like with the removal of the cow’s milk, we changed nothing in his diet other than the Goldfish crackers and we are seeing a change! I have to believe that the GFCF (gluten free/casein free) diet is having positive effects on Nico’s overall gut health which is decreasing his ASD behaviors.

Now, I want to be very clear: I am not saying that this will work for your child/adult on the spectrum, but if I hadn’t been willing to try I would never have known. I started with Autism Speaks when researching this topic and was surprised that they were saying these diets were not helping those with Autism. It was kind of a punch to the gut for me (excuse the pun…you know I love ’em), but I just kept on. That’s all I ask you to do for your child…just keep on researching! I have pulled a few articles that helped me make these decisions. Start here and continue your own research:

Gluten Free and Dairy Free Diets for Autism: My Experience

Treating the Gut is Vitally Important for Autism Spectrum Disorder

I have learned that I must be willing to do anything I can to ensure Nico has the best quality of life. That may mean pushing him outside of his comfort zone, refusing to give him Goldfish even when he asks in a full sentence with a “please” at the end, or going with my gut (I know, I know…just let me have it) despite what the popular opinion is, but whatever I do it will always be something I analyze and overanalyze. I will never make rash decisions just because I want to give Autism a swift kick in the ass every now and then.

And this willingness is actually spilling over into other facets of my life as of late. I have always prided myself in being able to handle things on my own with little help. Some may say it’s because I’m a bit of a control freak (if my husband is reading this he is probably saying “damn right”), but I just feel better when the ownership is on me. So, it shocked me tonight when I actually took up my grocery store bagger’s offer to help load up the car with my groceries. I have NEVER been willing to take that offer up before….I mean, I’m not an eighty year old woman, but I am realizing more and more these days that I can’t and don’t have to do everything on my own. Life is hard and being a working mom of a child with Autism is exhausting, so I am willing to admit that I need help. We don’t have to be on point 24-7 just because we can be. And now with the extra energy I didn’t have to exude tonight I am able to watch an extra episode of my Netflix series…score! It’s the little things…am I right?

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