Guest Post: An Autistic Speaks About Food

(Note: I’m down with copious migraines, so expect my #AutisticsSpeakingDay contribution to be late.  Meanwhile, here is a guest post also suitable for the occasion.)

An Autistic Speaks About Food

by Marie King (read more at Aut.Rookie)

“That’s BS. My mom made me eat things I hated, only to find out as an adult that those things were good for me!” Oh, gods. The internalized ableism.

The comment was part of a recent Facebook thread that linked to this post. (Scroll down to “Emotional Aftereffects Cannot be Separated From The Intervention.”)

ABA orthodoxy stresses that food-averse people with Autism MUST EAT IT, even at the expense of choking, gagging, crying, kicking and fighting. As an Autistic person who lived that experience every day, I’m here to say “fuck off.”

That 70s Kid

I grew up in the 70s before Autism was fully recognized as a spectrum condition, or fully recognized at all.  All I knew was that I was different; rocking incessantly at night, stimming by rubbing my index finger along with ridge of my thumb, twirling my hair, melting down, and latching on to one or two topics of interest, and the food thing. Oh. My. God. The Food Thing.

Can we talk about the Food Thing? We need to. Even if you don’t personally have sensory issues around food, chances are you know of an Autistic or Neurodivergent person who does. We need to talk about it because it’s not referenced nearly enough in Autistic or Neurodivergent discourse.

We need to talk about it because the ABA practices around food are barbaric. We need to talk about it because of the Autistics who suffer in silence with eating disorders, both undiagnosed and diagnosed.

I was born to stressed-out older parents on the brink of divorce. They had neither the time nor the energy to decipher my neurotype in comparison to that of my two older (by 7 and ten years) brothers. Instead, I was labeled “odd” and “strange” by relatives who I thought loved me and cared for me.

Stop The Planet, I Want To Get Off

All I knew is that my life was a sensory hell: noises were too loud, physical sensations (heat, cold, hunger, stress) were too overwhelming. Food was an assault: my brain could not make sense of the conflicting tastes and textures and smells.

I would bite into a forkful of veggies, only to gag and to feel my stomach heave. It. Was. Too. Much. Same goes for just about any food. I’d freeze up, unable to swallow. “JUST FUCKING SWALLOW ALREADY”

My family’s response was to launch full-scale warfare. My dad would gather up a tablespoon (remember, I was about 4) of whatever I couldn’t eat, and shove it down my throat. I’d fight back, gag, spit, flail, scream, and try to get away. Family rumor has it he was like that until he left our family once my parents divorced.

Meal times later on got no better. My brothers, in keeping with Italian cultural norms, assumed the role of Man of The House, and that included bellowing “JUST EAT, YOU FUCKING RETARD!” whenever they could. I was already making a whole-hearted attempt at whatever was on my plate in front of me, so I didn’t need their help.

As a pre-teen, I was made to stay at the table, sometimes for hours. I was ugly, awkward, had few friends, and no one to advocate for me. I was called “stubborn,” “manipulative” and a “baby” by relatives I otherwise cherished. My brothers had since left home, so it was just my mom and I. My step-dad wisely stayed out of the fray. Occasionally he’d offer, “Don’t be such a baby.”

I would explain, over and over, that I couldn’t help the way I was. My brain just couldn’t make sense of the taste and textures on my tongue. I could tolerate a very narrow range of foods.

I was told, constantly, that if I didn’t “eat better” that I would “get very sick someday.”  To this day, I can’t help but wonder if my cardiac arrhythmia or my cancer scare at 23 are due in part to not getting the RDA of fruits and veggies. In short, I blame myself.

Behavior Is Communication

Slumber parties were hell because they involved…food. I’d make up some excuse to leave before breakfast the next morning so the other girls, already budding vicious pre-adolescents, wouldn’t see me struggle with the pancakes or waffles that everyone loved so much.

I avoided other pre-teen outings like skate parties or bowling outings because they involved food. I’d always make an excuse “Oh, I’m grounded. Sorry.”

My life was hell, honestly. Adrenaline would tear through my body in anticipation of the fight or flight dilemma known in other households as “dinnertime.”

Each time heavy doses of stress hormones were carving their way through my amygdala and frontal lobe, laying the groundwork for the PTSD and anxiety that dog me to this day.

My palms would sweat, and my heart would race in anticipation of whatever literal and figurative horrors my mother would be cooking up, and my body’s wholesale rejection of such.

My mom was a shrill, tense woman whose vocal range consisted of either screeching at me or thinly veiled hostility. She, after all, was in the process of grieving the daughter she didn’t get: adorable, popular, engaging, and who ate “right.” Her grief would show itself in the way she stood by while one of my older brothers would call me a retard and tell me to JUST FUCKING EAT.

I heard, “I’m so fucking sick of you! Why is everything such a big production with you?!” more than once. It was my family’s battle cry. “God damn you…just EAT!” was another favorite.

“I do wish,” I admitted to a therapist years later, “that I would have choked to death and died when people were shoving food down my throat so I wouldn’t have to live this life.”

Passing

I was able to hide the rest of my neurotype quite well. After all, it was about “passing.” I learned to make small talk and to feign interest in other people’s hobbies and interests.

I’d stim by chewing on the inside of my cheeks or my tongue because my other favorite stim—rolling the edges of paper between my thumb and ring finger—was unacceptable because it thrashed the edges of books and magazines. I studied TV shows to discern how the characters interacted.

I was a natural mimic. Except I couldn’t mimic normal eating behaviors to save my soul. I tried. I honestly did.

I could never hide the Food Thing for very long. Even as a growing teen, most food never made sense to my palate. Cereal with milk would make me gag, so I ate (and still do eat) my cereal dry. Veggies, for the most part, taste like dirt, and fruits have this odd bitter/dirt-like note that I still can’t decipher.

We need to talk about food not so I can get this off my chest, but so people can understand and accept that our food issues are NOT a commentary on anyone’s parenting or cooking, but rather a manifestation of our unique neurotype. While food issues aren’t exclusive to Autistic and Neurodivergent people, they’re certainly clustered within those groups.

Would you force a non-ambulatory kid to walk, or a non-speaking kid to use their mouthparts when communicating?

I deeply and sincerely hope not.

It’s taken me years to learn that people’s responses to my food aversions are more reflective of them than they are of me. My food aversions are part and parcel of my neurotype. As an adult I highly doubt I will ever be able to feel safe eating with others, unless they, too, are Autistic with food aversions.

We need to talk about food because it’s been used as a show of force and power against Autistic and Neurodivergent people. To fully disregard the distress signals of another human being, regardless of their neurotype, is abusive. Carried out long enough and consistently enough, it becomes a form of silencing and erasure.

We need to talk about food because of the ABA practices surrounding food. Hint: THEY’RE NOT WORKING. It’s yet another ABA practice that teaches vulnerable people to fear the very people entrusted with their well-being.

We need to talk about food because it needs to be seen for what it is: another component of physical sustenance, a way to celebrate, socialize, nourish and as a means of transmitting cultural norms and values.

If those very basic societal tasks are couched in ableism, fear, aggression, abuse, or mistrust, not only does the individual suffer, but so does the culture at large.

Anxiety, PTSD, fear, mistrust, and eating disorders are all byproducts of the attempted silencing and erasure that go with using food as a battering ram against Autistic and Neurodivergent people.

We need to talk about food so we can see food aversions for what they really are: part of the Autistic and Neurodivergent experience and as a call to action for our loved ones. Tread softly and do no harm.

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19 thoughts on “Guest Post: An Autistic Speaks About Food

  1. I’m so sorry you went through this, and I’m very thankful we live in an age now where there are more parents with a better understanding of these things. Though I’m sure there are still kids out there going through exactly what you’re going through.
    I’m quite thankful my son is open to trying new foods, though when he has an aversion, as much as it drives me nuts because it’s often to foods I enjoy, I just come up with alternatives.
    It’s so important for parents to understand that its more than just a kid being picky.
    It also makes me more accepting of the fact that there are foods I can’t stand and it’s perfectly okay.
    Thank you for putting this out there.

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  2. Ah, the Food Thing. Why is it such a societal obsession? I married a man who eats meat. I do not. We often cook our own separate meals though we might share a side dish. So the fact that our son wants to eat something separate from both of us is just following the family way, I think. And he wants the same dinner every night (steamed tofu with white rice and soy sauce, and a side of peas). It’s super-easy to cook, it’s healthy, and he always eats it. Why would I fight that? I *love* it, it makes my life as a working mom much easier. (Also: he refuses to touch most junk food or soda because they smell bad to him–I couldn’t be happier about that.)

    I’m very sorry your parents put you through all that food torture.

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  3. Ugh, as someone whose father used to get in my face and scream at me over the dinner table until I ate foods that I knew would make me ill, my sympathies. (Different context – raaaging lactose issues rather than flavor/texture sensitivities – so I can’t pretend to have had the exact same experience. But the parts of the experience that we do have in common *sucked,* and I’m sorry it happened to you.)

    There’s one part that really struck me: when you said you blame yourself for subsequent health problems. I don’t know whether nutrient deficiencies can cause cardiac arrhythmia… but what I *do* know is that, had your parents taken your food aversions seriously instead of convincing themselves they could shout it out of you, they could have helped you get the nutrients you needed in ways that worked for you. There were options that might have been available to you that you weren’t offered, so there’s no way you’re at fault for not having availed yourself of them. (Because, yeah – being aggressively in denial about your kids’ inability to eat “normally” doesn’t help them eat a balanced diet, it prevents them from getting access to the nutrients that are supposedly the goal of a balanced diet.)

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  4. I have a 10 yr old granddaughter I’m worried about, I can’t talk to her parents they won’t listen, I’m worried about autism or something like it , my granddaughter goes nuts about having her fingernails or toenails trimmed, it gets worse as she gets older, she about so seems overly sensitive to clothing, such as Jean’s , will only wear soft pants, says tooth paste of every kind makes her sick, is having learning difficulty in school, when upset pulls on her hand about song has melt down does that sound like a form of autism maybe, I need someone to help with this

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    1. It could be autism or a sensory processing disorder of some kind. I have many of the same sensitivities – for instance, I only cut my nails after a long bath or shower, when they are soft, and I use surgical scissors instead of nail clippers because the scissors, being sharper, don’t mash or shred the nail. I haven’t used toothpaste in over twenty years (my dentist approves).

      For help approaching your granddaughter’s parents, I’d recommend talking to the folks at Parenting Autistic Children With Love and Acceptance (PACLA) – http:/autloveaccept.WordPress.com . If you celebrate one of the upcoming gift-giving holidays, you might try giving her parents a copy of Michelle Sutton’s THE REAL EXPERTS, if you think they would be receptive to it. You can preorder from the published at their website: http://www.autpress.com .

      In the meantime, do keep trying to find workarounds that work for your granddaughter, and let her know that there is nothing g wrong or bad about her for having these needs. Having an adult who loves her just as she is and who tries to help her without expecting her to “grow out of it” or “suck it up” will make a world of difference in her life. I wish you all the best. ❤

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  5. Sounds similar to ARFID (Avoidant Restrictive Food Intake Disorder). I am sure there is a connection between ARFID and ASDs

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  6. On some mornings, I can’t eat solid foods because I have a very sensitive gag reflex in the morning. My mom wonders why I don’t eat “real” food for breakfast. Well, what’s the point of eating if I’ll throw it up anyway?

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  7. I had my own Food Thing as a kid. I’ve mostly grown out of it as an adult (though some things are still dealbreakers – celery and anything with a stringy texture like it, overcooked mushrooms, certain types of pasta, and so on).

    My folks did pull the “why does everything have to be a production with you?” and also the “If you don’t eat this, you won’t get anything at all until the next meal” but aside from that, left it alone. One time I was staying with a friend of the family who was stubborn about it and proceeded to feed me something I couldn’t eat every meal for the week I was staying there.

    So I didn’t eat for a week.

    “If you’re hungry enough, you’ll eat it.” Nope.

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  8. My issues are mostly with fruits and vegetables due to allergies (my palate itches horribly if I eat an apple, but not apple juice) or texture issues (onions make painful sounds when I chew them and steamed carrots are simply too soft, though I love potatoes, raw carrots and bananas). Because of this, most of my diet consists of grains (mostly breakfast cereals), whole milk (I try to maintain my weight due to a high metabolism) and meat (mostly chicken, though I like a good porkchop every once in a while.) Lucky for me they put a lot of vitamins and minerals in breakfast cereal or I’d probably be sickly. I have had a blood test recently that unsurprisingly said that I have bad cholesterol levels that are at the “above-optimal” line.

    Luckily my mother and sister are generally accommodating of these eating habits but do pressure me on occasion to try something new.

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