Please do not read this if you are, might be, or used to be struggling with an eating disorder. Content is likely to be triggering.
Seriously, this will only make your life less happy if you have an eating disorder.
It includes discussion of hunger, calories, weight, and bad choices I made that resembled disordered eating habits. Reading it would not be healthy if you have this problem.
My appetite doesn’t always work. It’s broken. As a result, I’ve had to develop habits that are different from the way a typical healthy person might eat.
I don’t always feel hunger when I should. So I will go without eating even though I need to eat.
In high school, I became borderline underweight. It was so bad that at one point I stopped menstruating. It happened completely by accident.
Yeah, the BMI definitions of a “healthy” weight are fake, because I never hit the “underweight” category even though my concerned doctor was instructing me on weight gain.
I’m not at an unhealthy weight anymore. My dad says it’s normal for cisgender women to gain weight during college age because our bodies are preparing for potential pregnancy. He also made a lot of milkshakes when I was too thin.
Luckily, I have a sufficient coating of fat now, better protecting me when I inevitably bump into anything and everything.
Continued appetite problems
Today, I would refer to my body’s appetite as “passive-aggressive.” I don’t realize that I need to eat. And then all of a sudden my stomach really hurts.
Sometimes I accidentally get to the point where I am shaking from low blood sugar or am staggering when I walk.
Even when I eat, I tend to get distracted by things that are more interesting.
And sometimes I can’t understand my body’s signals. When my stomach hurts, it could mean:
- I ate something bad
- I am sick
- I am hungry
Sometimes I can tell which it is, but sometimes I can’t. Which is frustrating, especially since the solution to hunger is “go eat” while the wisest course of action during a stomach illness is often “do not eat.” My ability to discern the cause of the problem worsens at night.
I can’t sleep if I’m hungry. But I can’t always tell when I’m hungry. So even though I go to bed between 8 and 9, I can be lying in bed awake at 11 and suddenly realize that I probably need to eat.
It freaking stinks.
And it has been dangerous. When I first started college, I believed that all people should eat when hungry and not eat when not hungry. But it turns out there are exceptions to the rule. When I got sick, my appetite mostly disappeared, so I thought the logical result was… Well, I won’t share the details just in case any mentally ill people might consider copying it, but we’ll just say that it was super unwise and my health deteriorated quickly during that time. I didn’t realize just how bad it was.
After that, I learned that I cannot trust my body to do its job.
I do not have medical confirmation, but I’m pretty sure I know what’s wrong with me. (And I say “wrong” because it causes me lots of problems and I super dislike it.)
Anxiety destroyed everything while I was sick, but I suspect that something harder to spot causes my more everyday problems.
Many autistics, myself included, have a condition known as sensory processing disorder. It affects the way we experience the sensory world, amplifying or distorting. This is sometimes harmless and sometimes bad.
Humans have more than 5 senses. You’ve heard of sight, hearing, taste, smell, and touch. There’s also proprioception, vestibular, and interoception (sense of internal body signals).
I’m pretty sure my interoception is messed up. In addition to hunger, it can identify things like thirst, body temperature, heartbeat, itches, and the need to use the bathroom. Interoception-related hunger problems aren’t exclusive to autism, either: experts have suggested it may be an issue in depression, anxiety, eating disorders, and potentially more.
Hunger signals don’t always work right in my body. So I lie awake at midnight wondering what’s wrong and then it dawns on me that I ate a small supper and that might be the source of current wakeful suffering.
Yes, I have to rely on freaking food math.
Attempting a solution
At this point, you may be wondering “Luna, with all these issues related to eating, how can you possibly still be healthy/alive/sufficiently cushioned against impacts with inconveniently located table legs?”
When instincts fail, logic must become the substitute.
In college, I had the idea of counting calories. Though my methods and motivations are very different from what others do:
- I’m not trying to be precise, just mostly accurate to the nearest hundred-ish
- My goal is not to eat less, but to eat enough
If I can’t tell what a sufficient portion is, I will freaking calculate it. I will check the calories and do the math. (Minimum 400 per meal. Snacks fill in the rest of what’s needed.)
Eating the same meal repeatedly helps me calculate an appropriate portion based on how long it takes for hunger to return. For example, last semester I figured out that one grocery store salad plus one Uncrustables sandwich at lunch was usually enough to keep me full until dinner (sometimes with a small snack in between if needed). I had also figured out the optimum cafeteria breakfast of oatmeal and two little bowls of fruit with water to drink.
If my portions sound small to you, please keep in mind that I am a small person who is not particularly active. Taller and/or more active people should eat more.
I try to eat on an approximate schedule. If I eat at about the same time, and if I eat the planned portion, then I should be fine.
To prevent me from abandoning my meal halfway through, I put a passive activity (like Netflix or a blog article) on my computer screen. This almost always is enough to make me finish the entire portion.
My dad often checks on me to see if I’ve eaten on schedule. He knocks, comes in, cranes his neck to look over my monitors to see my desk (which is where I often eat), and asks if I have eaten yet. Sometimes the answer is “no” so then he encourages me to get something.
After too many nights of not realizing I’m hungry (yay quarantine disruption), I devised a new plan: if I eat a below-average amount in the day, I will eat a bowl of cereal before bedtime! My bedtime cereal will now be hours earlier and hopefully I can fall asleep!
It might seem silly, but it took me a long time to think of it and I am extraordinarily proud of my planning.
I keep snacks at my desk. If my blood sugar tanks, I can get quick sugar without getting up, and then go to the kitchen for something healthier once I’m ready to stand.
I believe that the average autistic person needs bedroom and/or desk snacks in order to maintain well-being. Actually all people should have that because it’s nice to have.
I still don’t have perfect solutions and I still make a lot of mistakes. But it’s more under control than it was 5 years ago.
This is not an article about how to lose weight, nor am I here to criticize the concept of intuitive eating when it’s helped so many people. You can best figure out how to modify your habits as needed.
What is the point of me writing this?
- Sharing tips for autistics (and loved ones) if this is a problem for them too.
- Pointing out that intuitive eating, while an excellent and scientifically–backed model, doesn’t work in rare cases.
- I was autistically indifferent to diet culture as a teen, and yet my intuitive eating habits were unhealthy and sometimes dangerous because my appetite didn’t work right.
- Intuitive eating is still a great principle and should be used when practical (which is most cases).
- Educating people who are curious.
- Having people acknowledge that my problem is frustrating and also I’m so smart to eat night cereal on at-risk nights before bed instead of doing it after hours of lying awake.
I’d also like to summarize what I learned:
- Consciously thinking about the cause of a stomach problem (stress, hunger, stomach upset) can sometimes help with deducing what’s wrong.
- Difficulty recognizing hunger can worsen in times of stress or tiredness. If it’s getting harder, maybe you’re stressed out or in need of rest.
- You can make sure you eat enough using strategies like:
- Following a routine
- Calculating portions by trial and error
- Calculating approximate calories to see if they were enough
- Using a passive activity (like Netflix) to prevent distraction while eating
- Letting family check in to ask if you’ve eaten
- Keeping snacks (ideally healthy ones) easy to reach
- Intuitive eating only works if your intuition is functional. If it isn’t, you may need to force yourself to eat even if you don’t “feel hungry.” Because starvation is bad.
I hope this helped you understand eating problems, autism, and interoception problems. If you have this problem, please take care of yourself and make sure you’re eating enough. If your child or loved one has this problem, please help them learn how to manage it.
Take care of yourself.