An autistic foodie, part 1: Growing up with ARFID (and an angry uncle)
Avoidant/Restrictive Food Intake Disorder is common among autistics, and I have been no exception.
TW: This article mentions psychological violence against a child. Read at your own discretion.
Like many autistics12, I grew up with ARFID. A tiny kid, I wouldn’t eat much else than a few pasta variations: with oil and lemon, potatoes or in a clear tomato soup. As fresh produce went, there was not much to be liked either: carrots, fennel, pears and kiwis. And tolerating apples.
Some food textures were really upsetting. But it was the taste intensity of mostly everything that would hurt my sensors and cause profound disgust.
There were also some in-betweens: bell peppers and onions, for example, were labelled “too much”. Their flavor was tolerable in certain dishes, and plain disgusting in others, depending on proportions, degree of cooking or which other ingredient they were to be associated with. An equation complex enough to be left aside. See you never, pepper!
Also common among my autistic peers, I would find comfort in beige foods such as bread, potatoes, certain types of cheese, nuggets and more. I also loved chocolate.
What is ARFID? Here’s what Wikipedia says:
Avoidant/restrictive food intake disorder (ARFID) is a feeding or eating disorder in which people avoid eating certain foods, or restrict their diets to the point it ultimately results in nutritional deficiencies. This can be due to the sensory characteristics of food, such as its appearance, smell, texture, or taste, and/or due to fear of negative consequences such as choking or vomiting; and/or having little interest in eating or food.
Adventures in supermarketlandia
I was born a single child in Switzerland. My parents, fresh immigrants from Italy, didn’t have much. This limited the variety of foods I was exposed to, which in turn didn’t make our lives any easier.
Mom and dad would indulge in more pasta types (with chickpeas, lentils, kidney beans, tomato sauce), but also in risottos, minestrone, and more. Some of these were more revulsive than others, and would make me gag and feel miserable.
My mother would serve me pasta with lemon and oil instead, which never failed to satisfy (to this day, I carry lemon dearly in my heart). Very occasionally, we’d have some fish or white meat that she would manipulate with disgust and overcook to shoe sole level, making sure that any present bacterias would be decimated. It still felt like a treat, given the variety of my diet (and I suspect my mother had ARFID too).
“Eating anything is always better than eating nothing.”
ARFID Autistic saying
Occasionally we would go grocery shopping in the neighboring France, food being more affordable there. I was always very keen to try new sorts of (beige) things. Some newly found products became my staples and I would eagerly wait for each of our adventures to the french supermarkets. That meant feeling nauseous in the car for a few hours, but I would bravely brace for that: I knew it would be worth it in the end as I would be able to pick most of the things I liked.
I also fondly remember the week-end croissants and pains au chocolat that my father used to get from the bakery. Croissants are an all-time comforting food for me.
Most witnesses thought that I didn’t want to eat. That was plain wrong: I had always loved eating, I just could afford an extremely limited array of meals because of a combination of sensory processing disorder and emetophobia (fear of puking).
Tame the kid who eats like a bird
My parents were quite desperate of me not eating anything. Folks would tell us how I looked too thin. Kids at school would call me the spaghetti. Would I grow up at all?
When my mother was admitted to the hospital, an uncle was summoned to keep an eye on me. Did my parents brief him, or was it at its own grandiloquent initiative that he proceeded to try and fix my food problem?
The uncle had a very unconventional method:
Prepare a despised dish, for example pasta with tomato sauce.
Put a strict, dominant and scary appearance on, and forbid the kid to leave the table. Force the kid to eat the pasta with tomato sauce and threaten with excruciating consequences.
Hang around the kitchen nervously, watching and pressuring the kid. Make the kid feel trapped, like there’s not other option than eating the disgusting dish.
I would usually give it my very best in the hopes of getting away, but most often the gagging would make it really hard to swallow. When I could not finish my plate, he’d let me rot there, facing the food’s awful smell with nothing else to do.
When he finally got bored (he did have quite the determination), he would take the plate away and store it in the fridge. I was then forbidden to eat anything else until the next meal time and, when it was time to eat again, I’d be served the same cold dish, just colder. If I still did not eat, the cycle would restart on the subsequent day.
Uncle Q&A
What if I puke in my plate?
”You’ll eat it with your puke.”
What if it stays too long in the fridge and goes bad?
”Until there are worms in the plate, that’s the only thing you’ll be allowed to eat”
How long would I go without eating? I can’t recall, but I have not been able to re-heat pasta without feeling triggered for the thirty years that followed.
As a young kid, most of my punishments revolved in forbidding me to go outside, to play with my game console, watch television or otherwise do things I loved and were necessary for my self-regulation as an autistic with combined ADHD. Nobody imagined back then that the consequences would be terrible for my mental health. I was just the picky and disrespectful child to tame.
Saving like a squirrel
At school, some teachers would occasionally bring seasonal candies and snacks. Unlike the other kids indulging right away, I would squirrel the loot away in a box under my bed, for when the hunger would show.
I generously shared its contents with other kids visiting my place. I thought they were all hungry like me, and that my determination in saving and hiding food was a privilege. They were all positively impressed.
Much later, at my 25th birthday celebration, a primary school friend brought me a tin box filled with chocolates. “In memory of that candy box you kept under your bed and shared with me”, she said.
Cupboard Commando
As a smart, rebellious child, I sometimes showed defiance. It didn’t serve me much, as the consequences were often worse than had I just shut up. I sometimes wished I could puke in my plate to get the obvious point across that I was not just being picky for the fun of it, but I had emetophobia (fear of vomiting) until my late twenties. Vomiting as an act of resistance was made too tough for me.
Yet to sustain myself, I would sometimes run tiny solo raids to the living room library. Their objective was to reach the cupboard in which my mother stored chocolate bars. A few dead angles could be used to avoid alerting the enemy, but every mission came at a great peril: that of the crime being reported to my father. Upon an unlikely success, I could grab a Mars and revel.
One fine day, rather than keeping it a secret, I shoved the empty packaging in my uncle’s face to prove him I could outsmart his evil schemes. It was the end of the chocolate bars, but his anger and the consequences were very much worth it.
The death of the red balloon
During one of our french supermarket escapades, we visited a fast food joint. I was excited, because fries and playful kid meals. That particular day, the joint employees were also distributing red helium balloons. Having just watched the “The Red Balloon” short movie, it all felt heaven sent. Maybe because as an autistic, I have always tended to personify objects, and turned them into friends?
Past the charming façade, the menu options were of major concern: I couldn’t find anything without awkwardly gross melted cheese and nauseating pickles. I cautiously raised the issue to my dad who asked on my behalf if the dreaded ingredients could possibly be removed from the burger.
“Bread, meat and ketchup?” asked the vendor.
“Actually, no ketchup either please”.
Malediction! The burger came with cheese and ketchup. Besides my disappointment, there was nothing to be done: I would remain hungry that day too. But it got much worse when my uncle took the fries away from me, and the little gifts that came with the meal. He threw everything in a trash bin right outside of the restaurant.
He then ripped my red balloon away and forced it into the same trash bin, condemning it to a vain and slow death. Forever in my heart, balloon.
One fine day, my uncle offered me a Monkiki figure, a sweet monkey plush, wearing a pink astronaut suit. I buried it in my neighborhood and proceeded to hate all things space and monkey for the next thirty-five years.
Would you like to support my work?
Pledge to my Substack or use my tip jar 🦜
Nicely et al. (Prevalence and characteristics of avoidant/restrictive food intake disorder in a cohort of young patients in day treatment for eating disorder, 2014) found in their study that 33.3% of people with ARFID were also autistic.
The BioPsychoSocial Medicine (Prevalence of autism spectrum disorder and autistic traits in children with anorexia nervosa and avoidant/restrictive food intake disorder, May 2021) journal reports a lower 12,5% figure, and explains the possible difference could result from different origins and identities between the Nicely et al. study (above) and their own.