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Understanding Dietary Distress, Forced Eating, and Food Deserts While Autistic

My name is Sylvia, and I’m an Autistic adult with sensory hypersensitivities that mainly affect my eating, which I’m choosing to call dietary hypersensitivities, or, more simply, food/drink hypersensitivities. For me, these hypersensitivities are oversensitivities based on any combination of the following:

Sylvia Cusack Johnson, MSW

Sylvia Cusack Johnson, MSW

  • Portion Size
  • Taste and Texture
  • Appearance
  • Smell
  • Sound while Eating/Preparing
  • Container
  • Spice
  • Brand
  • Temperature

Please note that not everyone with a food sensitivity has every trait. In this article, I will define the difference between a dietary hypersensitivity, a food allergy, and a food intolerance. I will also discuss food cultures, food deserts, and food insecurity. As an Autistic social worker with over 20 years of picky eating, here’s what I know.

A dietary hypersensitivity is a potential risk for neurological, sensory, and emotional reactions to the sensory input that we take in. Green et al., as cited by Zelidadt, indicated this may be, in-part, due to struggles with habituation. Sometimes called sensory gating, habituation is the process of blocking out all sensory input except the input that you want to experience. A person whose dietary sensitivities have been triggered or activated may become: restless, angry, overwhelmed, nervous, or otherwise upset; stim more frequently or more intensely (especially if they have a trauma history) whether or not there is a formal diagnosis; begin to gag, vomit, or forcefully remove the food from their mouth or the table/surface they’re eating at or on, regardless of what is happening around them or expected of them; be unable to focus on their environment; get up abruptly from where they’re eating and at the very least move to a different part of the home or environment; and enter into or ebb and flow between any stage or intensity of overstimulation, sensory overload, Autistic meltdown, shutdown, or burnout depending on the circumstances. This is potentially more harmful if the Autistic person in question is repeatedly exposed to these triggers and other stressors, from discrimination as well as systematic oppression to violence and chronic/mental illness/(other) unaccommodated disabilities; and potential other forms of (dis)stress.

Additionally, the Mayo Clinic describes food allergies as a series of potential physiological reactions to one or more unsafe foods whose reactions include: tingling of the mouth; itching; hives; eczema outbreaks; swelling; stomach discomfort, nausea and vomiting; diarrhea; abdominal pain; dizziness, lightheadedness, and/or fainting; and trouble breathing. Given the difficulty in predicting when allergies show up by age, and the increased risk of eating disorders in Autistic adults, especially Autistic people on restrictive diets, please be careful before recommending a restrictive diet. Lastly, a food intolerance, such as one to gluten, may have some overlap in physiological reactions, such as stomach discomfort, but the people who have them never risk developing anaphylactic shock and may have different symptoms. The Cleveland Clinic lists headaches, gas or bloating, and irritability or nervousness, among others, as symptoms of a food intolerance and not a food allergy. That said, what should we, especially referring to Autistic people, do with this information moving forward?

Moving on, there’s another difference between the above and food insecurity, food deserts, and food cultures as they intersect with these hypersensitivities. While some readers may experience this directly, I want those that don’t, or aren’t sure, to imagine you had less access to nutritious foods/drinks just because of where you live, your income, and because you don’t have a car. Also, imagine what food/drinks you can access being outside your food culture(s) because those foods are now unaffordable (looking at you, quinoa industry). Now account for racism, classism, ableism and other systems of oppression. This includes the fact that Black and American Indian/Alaska Native people in the US are disproportionately more likely to be disabled by race than white people and other people of color, despite population data from the US Census highlighting population differences across communities. That said, to those of us who are white and don’t experience this, how would you feel, especially during a pandemic? Would you feel safe? And, honestly, what would you be thinking about when you get hungry?

That said, I may never fully embrace my food culture as an Ashkenazi Jewish adult given my own hypersensitivities. While that loss of food culture may be uncomfortable for me: these dynamics are complicated, especially concerning the possibility for worsened health impacts by race, income level, ethnicity, gender, disability status, and more. This is especially true when we consider how privilege can lessen, or how further or multiple marginalizations can worsen, outcomes in this respect. Therefore, I encourage white people reading this to think about our own privileges as they relate to these hypersensitivities, or those of the people we love, not because we didn’t have to work hard but because we didn’t have to work harder. Eating can be complicated, and eating well can be impossible, but understanding all of this is the first step to addressing them for the people who are hungry for change, or, honestly, just hungry.

If you have any questions for me after reading this article, then please feel free to email me at sylvia.cusackjohnson@gmail.com. Thank you for reading and be well.

The viewpoints expressed in this article do not reflect the opinion of the Autism Spectrum News Editorial Board or the Publisher, Mental Health News Education, Inc.

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