Autism & Restricted Diets

Personal musings on the reality of making dietary changes when you are autistic

Ok, I’m going to start off with a confession. Last year I cancelled my colonoscopy after I found out I would have to go on a very particular diet for five days. I had a panic attack. I was convinced that I would be unable to sleep during that time and I was also worried about passing out (I do have very low blood pressure and I rely on crunchy food like nuts throughout the day for proprioception, among other things).

Usually, people tend to think of me as very health conscious and I don’t think it’s apparent that being autistic plays a role in my dietary choices. But on this occasion, I received some very raised eyebrows when I announced I was cancelling for this reason and I felt like I was seen as irresponsible. To be clear, I did not have a compelling health reason to get a colonoscopy—it’s just now recommended at the age of 45. For me, what it would have cost me felt like too high a price to pay for preventive care.

It’s a delicate subject to bring up diet for individuals with autism. I mean…it’s complicated. Autistic folks are known for their restricted diets. We tend to eat the same foods every day and can have a certain rigidity when it comes to introducing new foods or making dietary changes of any kind.

But…we are also a population that could potentially really benefit from tweaking our diets in certain ways. We are much more prone to GI problems than the general population and have higher levels of anxiety, for starters. And those are both areas where diet can be really impactful. The question for me is, how realistic is it to expect an autistic person to make substantial changes to their diet?

Well, speaking from my own experience, I have to say that there is certainly an ‘extra challenge level’ here. While going on a diet like the Whole30 (where you cut out all the bad stuff and the most common allergens for 30 days) is probably the fastest and most efficient way to figure out what foods might be problematic for you, that was simply not an option for me. Waaaaaay too many changes at once. I need time!

It’s not that I was unwilling to make changes, but rather that I am so sensitive to what I eat that I simply could not figure out what I would eat instead if I removed so many other things at the same time. And if I’m not eating enough, I’m not going to sleep, and then all the dominos are going to start knocking over and all hell breaks loose…

So, because I  had issues I was looking for improvement on, I instead I tried removing things one group at a time. This takes much longer, and it is not a perfect system. For example, since so many people are allergic to both gluten and dairy, if you just remove gluten and not dairy, you may still have a lot of symptoms since you haven’t removed all the potential irritants. In my case, that meant having to actually test for dairy twice. Once while I still was eating gluten, and then again years later when I was already gluten free.

But, it is the method that I could manage, so I went with it. I could go at my own pace and just do a new test of a potentially problematic food at a time I had the bandwidth to do so. I think I actually have a weird advantage here: I have been more committed to experimenting slowly with dietary changes than most people due to my high pain levels. I mean, if someone is just having low grade heartburn or they are a little gassy, it can be hard to find the motivation to go a month without cheese. I mean—cheese! There are so many gluten free options out there these days, but there is really no substitution for cheese.

When pain is at times keeping you up an entire night though, that’s another story. Unfortunately most of us have a hard time mustering up the willpower to deprive ourselves of beloved food items unless our symptoms are so abysmal that we become desperate and willing to try anything. At least that’s been my experience!

I do think people tend to forget that their mental health is also closely tied with GI health, and I wonder if being more aware of that would help people feel more motivated to address their gut issues. I was  talking to an AudHD woman a while back who has had depression on and off her whole life, and she was telling me how bad her depression had been recently. The next time I spoke with her, she told me that she had found out she had a major intestinal infection and was also having a diverticulitis flareup. Once her gut issues were addressed, her depression went away!

That’s a good reminder of the whole mind-gut connection. In any case, I think starting with whatever feels the easiest and most manageable is your best bet. Once you have some success, you can slowly start building on that. Keep in mind that lasting changes are not typically the ones that happen quickly anyway—the autistic tendency to make changes slowly can actually be an advantage here.

And just to be clear about gluten and dairy—they are not necessarily the enemy. Yes, they are by far the most common food allergens for all people, and gluten in particular seems to be problematic more often for autistic folks (although we need better studies to confirm that), but you won’t know for sure if you have problems unless you remove them from your diet for a month or more. If you would rather start with something you absolutely know is bad, look at your sugar intake. That’s a no brainer.

If you have a sweet tooth, simply switching from sugar to honey is pretty painless (especially if you bake and can make your own desserts). I know not everyone has the privilege of having time to bake, but if by chance that is your special interest, you’re in luck! Sugar is highly inflammatory, but honey is anti-inflammatory.

If baking is not your thing or there’s just no time, look for items sweetened with honey, monk fruit, coconut sugar or stevia since most other sugar alternatives and artificial sweeteners are also going to be inflammatory like sugar. Check out the Mint Chocolate Honey Patties by Heavenly Organics, any of the Honey Mama products.

These are what I call “gateway foods” to help you transition to healthier options while still getting a delicious treat (assuming those products are not problematic for you for other reasons).

If you are going to try going gluten free, brands like Simple Mills have so many convenient products like crackers, cookies and baking mixes that are truly yummy and easy to find in grocery stores. And you can still have rice and quinoa! Or bake with almond flour! Truly there’s never been a better time for flourless chocolate cake. Personally I like making a side of spaghetti squash with dinner as an alternative to pasta, and it’s super easy to prepare.

The other side of this issue I want to get into is not having enough variety in the diet. This is a legitimate concern raised in regards to autistic people trying out any kind of restricted diet since they often have a restricted diet to begin with. Nutritional deficiencies are a concern. The truth is that most Americans have nutritional deficiencies for multiple reasons. Processed foods with empty calories is one reason, not to mention that modern agricultural practices have seriously depleted our soil of nutrients. Eating a carrot today is not going to give you nearly the nutrition that a carrot from 100 years ago would have.

So what kinds of things might indicate a nutritional deficiency? Actually, a lot of things we associate with neurodivergence could also be associated with nutritional deficiencies—things like brain fog, inability to focus, decreased energy, aches and pains, depression, anxiety, dyeregulation….you name it. The good news is that by addressing potential nutritional deficiencies we may actually see a substantial reduction in the more challenging aspects of being neurodivergent (without losing the aspects that make us awesome!).

So how do we tackle that? Well, growing your own veggies is one option for better quality soil (another privilege that not everyone has access to though). But an even simpler option is just drinking more tea. Tea will put minerals back in your water, and any tea that you drink is going to have an assortment of vitamins, minerals and nutrients that your body needs.

So pick something tasty! Add some honey to it! For anyone who really is having a hard time adding more healthy foods to their diet, this is a great way to go.

Some herbs, like nettle, are so packed with the good stuff that some people take them in lieu of a multivitamin or to make up for missed veggies. To get the most out of it, prepare the tea before bedtime and then let it infuse overnight. You can reheat it or not in the morning. Even herbs like peppermint are full of vitamins and minerals!

And while food and herbs are always preferable to supplements, there can be a place for those too. Something like vitamin D in particular—we just don’t spend enough time outside in this day and age to get nearly enough from the sun, so I think it makes sense to supplement that. Personally, I also supplement good quality magnesium and b vitamins too for my nervous system, muscular tension, brain function and energy levels, no matter what else I am eating/drinking.

At the end of the day, it is totally up to you whether it is worth it to experiment with dietary changes. But if you are really struggling with some of the issues mentioned above and have not found other strategies to be effective, or you are interested in improving your long term health, it’s definitely worth considering.

Start with something small that doesn’t feel impossible or would stress you out too much. Figure out what works for you. Give it a month. Take notes on how you are feeling each day, and be sure to track the areas where you are struggling most. Look at the data at the end of the experiment (this is where those analytical skills really pay off) and then decide if you want to keep going or not. I’d love to hear how it goes!
​
Note: This is not medical advice. I am a neurodivergent coach, educator and family herbalist, and I do not diagnose or treat any condition. The information here is for educational purposes only and to share my own experiences as an autistic woman.

​Would you like these posts delivered directly to your inbox each week?
Subscribe for free on Substack: arikarapson.substack.com