(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.”
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.