Avoidant Restrictive Food Intake Disorder (ARFID) and the Absence of Hunger Cues
A friend and I were talking about our shared experience of not feeling hunger. We’ve both had our energy suddenly tank, our emotions go haywire and suddenly we’ve realized, “Oh wait, I haven’t put food in my body yet today.” When people around me hear I forget to eat, they’ll commonly say, “You need to listen to your body!” or “You should eat as soon as your body tells you you’re hungry!” This is advice with good intentions, but has the hidden assumption that my body actually tells me when it’s hungry.
My friend said, “I’ve been really trying to get better at listening to my body cues. But it’s so hard sometimes.” At that moment I realized the work I had been doing around food with a new nutritionist (that was actually helping me for the first time in my life) wasn’t about listening to my body cues. It was about setting a reasonable schedule to put food in my body. The assumption most people make is that everyone’s body cues tell them when it’s time to eat. My body doesn’t consistently tell me when I’m hungry. And this is an experience some other ARFID people I’ve spoken with share.
Autistic and other neurodivergent people have nervous systems that work differently. Many of us have a wide variability in our interoceptive sense, generally called “body cues.” The interoceptive sense lets your brain know when you’re thirsty, hungry, full, tired, need to use the bathroom, etc. And these cues come from the nervous system. Some neurodivergent folks will get sudden and loud body cues, some will get infrequent or muted cues, some won’t get any cues at all, due to variances in how the nerves in different parts of the body signal the brain.
According to the medical model, ARFID, Avoidant Restrictive Food Intake Disorder is a newer diagnosis of an eating disorder, and the medical field hasn’t been able to identify an underlying cause. It is an eating disorder defined by a limited ability to intake sufficient quantities and/or types of foods. The limited intake isn’t directly related to the experience of body image, weight, shape or physical dysphoria like it is with some other eating disorders. With ARFID, the ability to eat is affected by the bio-social relationship with food, including trauma, fear, discomfort, sensory responses, and other various nervous systems responses. Someone who struggles with ARFID won’t just eat when they’re hungry. If the food is a type or quantity of food their body won’t let them consume, they will go a very long time without food. There is a high correlation between ARFID, Anxiety, Autism, ADHD, and cPTSD.
I’m sure there are multiple causes, including neurological, psychological, and bio-social reasons for this complex food intake disorder. It exists on a spectrum with a range of symptoms and experiences. For me, one of the core causes is neurological - having an interoceptive sensory system that works differently. Other sensory processing challenges complicate my relationship with food even further. I don’t typically feel hungry when I need food, and I can’t eat just any food when I need to eat. It has to be a safe food that is a texture, taste, smell, or temperature that my nervous system will let me consume in that moment.
So if someone says they don’t feel hunger, what might happen if, instead of telling them to listen to their body better, you got curious about their statement? Their body might not be sending the same cues yours would in a similar circumstance. Here are some curiosity questions you might try and see what happens! “What is that like for you?” “What helps you realize you need to eat?” “Is that something you’d like to have support with?”
For further information here is the National Eating Disorder Association’s page on ARFID: https://www.nationaleatingdisorders.org/avoidant-restrictive-food-intake-disorder-arfid/