ARFID, Cultural Impacts, and Self Directed Safe-Foods Expansion
I spent a large chunk of my life absolutely terrified of food. Every meal was like torture. My mother, who was never one to force us to clean our plate, was getting desperate for me to get something, anything, into my body. My younger brother adored food and ate his meals with gusto, but in stark contrast, I spent most of our meals pushing food around my plate and trying to find ways to hide it.
This had nothing to do with conscious restriction or body image for me personally, which were issues that would come later in life, separately. I couldn't explain why I didn't want to eat most foods. I just couldn't. And if I was forced, I usually ended up gagging it back up. Being an undiagnosed autistic at the time, we didn't know what ARFID was. We had never heard of it, and it would still take another decade for my brother to get diagnosed, and another two and half decades for my own diagnosis.
Being a “picky eater” is a woefully inadequate description of ARFID (which stands for “Avoidant Restrictive Food Intake Disorder”). Most of the time, it didn't even have to do with disliking certain foods. A food could look good, smell good, even taste good to me, but my body physically wouldn't let me swallow it. It was as if foods were inappropriately setting off alarm bells in my body, reacting as if I were trying to poison it.
My mother struggled to keep me nourished. It got to the point where she would use a timer (the dreaded “tomato timer”) to make sure I finished my plate within an hour, or face some sort of punishment. Ironically, due to sensory issues, the tomato timer itself felt like punishment, as I hated the ringing sound when it went off, and I ended up spending most of the meal trying to cover my ears in anticipation of the horrible noise that felt physically painful to me. I would press one over one ear, push my shoulder into the other, and use my free hand to either attempt to eat, or more often than not, try and get our family chow chows to eat my fear foods. I would hide food in napkins, spitting out bites I could not manage to swallow. I would flush handfuls of broccoli and fish and cheese down the toilet if I had a chance to sneak off. I would wait for my mother’s back to turn, and then quickly reach to reset the tomato timer (which retrospectively, was very silly, but my mother graciously pretended not to notice and allowed me to use this extra time). I spent hours at the table, viciously uncomfortable in the dining room chair with the food seeming to taunt me from my plate. It was miserable. I was miserable.
Eventually over time, I did manage to expand my safe foods, and now as an adult, actually have very few foods left that I can't tolerate, at least in comparison to my younger self. There are still a few foods I can't manage, and I doubt those foods will ever become safe, but it doesn't impact my life nearly as much since I have far more options now.
Exposure Therapy and the Social Construct of “Health” :
If there is one thing I have learned from my experience with ARFID, it's that forced exposure was unhelpful, and even harmful, towards efforts to expand my list of tolerable foods. My mother was at a loss, and at a certain point just didn't know what else to do. I'm sure many parents and caregivers have felt the same conflicting emotions, watching their loved ones struggle to eat, but fearing malnourishment if they didn't.
However, after some time spent with other autistic peers and learning about each other’s experiences, I have realized that having a limited diet doesn't necessarily mean that someone with ARFID will be inherently physically unhealthy. I had one autistic peer who had the exact same fast food meal every single day for lunch. Despite this, he has had no resulting health issues at all.
“Health”, it turns out, is a bit of a social construct. Every person’s body is different, and every person’s body therefore will have different nutritional needs. Some will have dietary restrictions that could be another person’s primary diet. One person could have a specific food they eat every day, while another person, if put on the same diet, would suffer immensely, either physically or emotionally, or a combination of both.
I urge those who are worried about their loved ones' restrictive diets to ask yourself: “Does my loved one have a health issue that is being triggered by their diet, or do they seem to be thriving despite it? Does the risk of emotionally harming my loved one or elevating their stress levels outweigh the risks of malnourishment with a limited diet? Do I truly understand what health and nutrition is in regards to my loved one’s needs, or am I prescribing to the current fad diets or societal constraints of what health actually is?”
Not only this, but as a person of color with immigrant parents, I have realized that ARFID may present very differently in different people, which may lead to the diagnosis or discovery being delayed, or never caught at all.
The “Clinical Presentation” of ARFID and Cultural Impacts :
My ARFID safe foods were very different from other neurodivergent children with ARFID. While I hear about a lot of folks with ARFID having safe foods like chicken nuggets, boxed macaroni and cheese, and simple sandwiches, my safe foods looked very different, which added to the factors playing into my late diagnosis. I lived off of a diet of pulat hitam (a sweet purple rice porridge my Singaporean mother made for me), ikanbilis (a spicy stir fried snack food of fermented and dried anchovies and peanuts), and copious amounts of tropical fresh foods. I would grimace at the sight of a tuna sandwich or packaged chips. So, my ARFID looked very different, and was easily just passed off as extreme picky eating.
There are a multitude of reasons a food may not feel safe to those with ARFID, and why certain foods tend to be more commonly affected. For example, many folks with ARFID may feel safe eating french fries, pre-packaged snacks, or food from a specific fast food place because largely, those foods are exactly the same every time. When you buy a bag of chips, you usually know what to expect with every single bite. These foods are made with precise consistency. The texture and flavor will be the exact same with every chip. However, a box of blueberries lacks that consistency. When you bite into a blueberry, you don’t always know if that berry will be soft, dry, juicy, crisp, sweet, or sour. There is a lot more variation with some foods, so lack of predictability can play a huge factor in ARFID.
I don’t know why my ARFID seems to present differently. I can only guess that the culture and foods I grew up around were a big factor, one that doesn’t seem to have as much representation or knowledge.
But, living in America, surrounded by food that was generally not what I was made at home, life continued to be impacted by my ARFID in negative ways. It was hard for me to find foods I could eat, and I spent many meals out with family eating my own meals in the car, and spending recess with a teacher glowering over me and forcing me to finish my plate while the other kids went outside to play.
I do not believe ARFID is something that needs to be inherently fixed. In many cases, people are able to live full, healthy lives despite their restrictions, and the assumption that people with ARFID can’t should be further examined without bias. ARFID is often an inherent part of neurodivergence, and doesn’t have to be a negative or deficit.
However, ARFID did impact my life in negative ways. I knew it was something I wanted to work on so that I could feel like I had more freedom. But, being forcefully exposed to fear foods never helped. The only way I ever reduced my fear foods was when I did it myself, at my own pace.
How I Voluntarily Expanded My Safe Foods Comfortably and Safely :
Expanding my safe foods has taken years, and will continue to be something I work on through my life. The process has taken a lot of patience and gentleness. Sometimes, a food that was previously safe becomes something I cannot tolerate, often for unknown reasons. It can be immensely frustrating, but I know now that it is okay to not be able to eat certain foods, and I can always try it again in the future.
Generally, I have found the process of expanding the list of foods I can eat challenging, but not impossible. Sometimes exposing myself to certain foods alongside safe foods has helped, other times it has backfired. A technique I found that works for me was trying out different techniques of preparing the fear food, whether that's a different method of cooking, seasoning, or just down to presentation.
(emetophobia content warning for the following paragraph:)
For example, for some reason soup / broth had been my biggest hurdle. I could not swallow a spoonful of broth without gagging it back up. I didn't know why - the food tasted, smelled, and looked good. My body just would not let me swallow it. I spent several childhood meals tearfully being forced to drink a cup of soup, and running back and forth to the bathroom to throw up. I certainly don't think any claimed health benefits of soup was worth all that. However, after a few years into adulthood (and a safe amount of time away from the memories of having soup forced on me), I started actually wanting to enjoy soup.
(end of emetophobia warning)
I started slow. My mom would make beef bourguignon, so when I came home from college for the holidays, I would take a cube of steak, soak up all the broth from the beef with a paper towel, leaving it dry, and eat that. After several years, I “graduated” to dipping the corner of a piece of bread in the smallest amount of broth. Over time, I dipped more and more of the bread into the broth until I went from a couple drops of soup to soaking an entire bite. It was only just recently I was able to actually drink the broth of a French onion soup by itself. A whole spoonful of just broth! Overall, from the beginning of trying the soup of my own volition, to drinking an entire bowl, it was over a decade-long process. And I still can't drink most soups! But I see how far I have come, and am happy with where I am.
It does take a long time, but I have found the process rewarding, because it's what -I- wanted. I wanted to be able to experience cultural foods, especially those from my mother’s Singaporean heritage that she and my aunts and grandmother would cook. I wanted to be able to feel the freedom of going out to a new place and not have the immense anxiety of not knowing if I would be able to find something I could eat. And most of all, I just wanted to be able to eat more things!
ARFID is not always something somebody has to force themselves through. People are able to live full, rich, healthful lives whether they have certain restrictions or not. Both the physical and emotional health impacts of ARFID should be considered, but be considered outside of social implications on what is “healthy” or “unhealthy”, and examined on an individual basis, so that we can truly assess for ourselves what we need, and what we want.
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NOTE - This blog post was published at the following link!
https://www.rdsforneurodiversity.com/blog/arfid-cultural-impacts-and-self-directed-safe-foods-expansion