Beyond Fear of Fatness: Decoding Autism and Anorexia

Anorexia nervosa (AN) is often associated with fear of fatness, fear of weight gain, and distorted body image. However, for many autistic people, eating disorders are not about weight or shape. So then why do so many autistic people with anorexia exhibit behaviors that scream fear of weight gain? Because we do fear weight gain – but it’s a lot more nuanced than the stereotypical “fear of fatness” so many professionals attach to eating disorders.

I know this firsthand because I spent years in treatment being misunderstood, with clinicians trying to convince me I had body image issues when something much deeper was going on. In this Fear of Weight Gain Series, I'm pulling back the curtain on the real relationship between autism and the fear of weight gain. In Part 1, I share my personal experience of anorexia without body dysmorphia while challenging conventional wisdom on eating disorders. In Part 2, we’ll dive into eight specific reasons why autistic people may fear weight gain. And in Part 3, I'll walk you through my personal journey of making peace with weight gain as an autistic person.

Autism, Anorexia, and Fear of Fatness

“So you just thought you were fat?” People are often surprised when my answer is no. All throughout my eating disorder, I never resonated with the “desire to be thin” that pops up in practically everyone’s mind when they hear the word “anorexia.”

If you’ve read my book Rainbow Girl, you know that I denied the anorexia diagnosis because my self-perception didn’t align with that stereotypical graphic of an emaciated girl looking in the mirror only to see a fat version of herself staring back. Honestly, I still believe anorexia is a misnomer for my true lived experience, and is a misnomer for many autistic people that are diagnosed with this label. But because we as a society have no alternatives, we become square pegs that get pushed into round holes.

Eating Disorders Aren’t About Control. They’re About Safety.

For me, the restriction and exercise – which, of course, form the core symptomatology of anorexia nervosa – were not so much about controlling my weight or burning calories. Rather, engaging in these behaviors was about having something I could rely on in an unpredictable and overwhelming world. Note that I don’t use the word control here. I personally don’t believe eating disorders are about control, but rather, they’re about safety. I like to use the example of a life raft to understand this concept.

Coming into the world as an autistic person can feel like being dumped into a giant ocean where everyone already knows how to swim except for you. From my youngest years, I knew I was different, but I couldn’t quite pin down why. I didn’t understand how everyone seemed to float about so effortlessly, while it took me so much energy just to keep my head above water.

Now, imagine a life raft appeared out of nowhere. For me, this was fifth grade nutrition class. That’s when we started learning about “good” and “bad” foods, BMI, food groups, and we even received recommendations on how much to exercise. Combine the autistic traits of black-and-white thinking, taking things literally, and perfectionism with the common neurodivergent experience of existential loneliness, and you might as well call it the perfect recipe for an eating disorder.

How Anorexia Provides a Sense of Meaning and Purpose

As I was flailing about in this vast ocean without meaning or purpose, the solution to my existential angst was right there, ready for me to grab hold of. By clinging to this life raft for dear life, well that’s when I realized my life didn’t have to be so much of a struggle. Thanks to the eating disorder – the safety net – all the answers were clear. I no longer had to drown in the murkiness of infinite food options, because anorexia always provided me with the lowest calorie option. I no longer had to navigate my way through social interactions, because anorexia gave me an excuse to isolate myself. And I no longer had to doubt whether or not I was doing life “wrong,” because anorexia told me that as far as physically possible, engaging with the ED would lead me down the “right” path.

The Downward Spiral of Eating Disorder Treatment

Of course, food restriction and over-exercise are not part of the recipe to creating a sustainable life. It all started slowly: cutting back a few sweets, showing up to track practice early, doing pushups and sit-ups before bed. I was praised by everyone for having discipline and motivation, and how at such a young age, I was already engaging in so many “healthy habits”! But then it spiraled really quickly, and before I knew it, I was laying in a hospital bed with a heart rate just a few beats short of a coma.

While the little version of me, even back then, was fully aware that my lifestyle wasn’t exactly the version of “health” I had initially pictured, the worst was yet to come. All throughout eating disorder treatment, there was so much focus on body image. All of the behaviors were seen through the lens of trying to manipulate my weight and shape, rather than being viewed as adaptations to feel safe in a world where I didn’t. My honest words were constantly accused of being “the eating disorder talking,” and whenever I expressed the need for an accommodation – like having predictability around mealtimes, getting to chose where to sit, or needing to walk for nervous system regulation – I was told “the eating disorder was in the room with us.”

Eating Disorders vs. Eating Adaptations

Naturally, my initial adaptations to feeling misunderstood in the world migrated into the treatment setting. I started making up elaborate stories about how fat I thought I was, and how afraid I was of rest because I wouldn’t be able to burn calories anymore. I told the treatment professionals exactly what I knew they wanted to hear, just so that they would think I was being honest and was “making progress.” Well, as any autistic person who’s been traumatized by eating disorder treatment can tell you, the only “progress” you make is a deeper descent into the eating disorder. Because while you continue to be misunderstood, and you continue to be thrown in the ocean with pathological labels, the eating disorder remains as your life raft. And like anyone stranded in an ocean would do, you hold on. To do this during a time when you think you’re drowning; would we call this control? Or would we call this a desperate attempt at survival?

Of course, the irony of an eating disorder is that the deeper you descend into its grip, the more of its behaviors you need to achieve the same level of novel satisfaction. A few sweets became anything containing sugar, “healthy habits” turned into orthorexia, and the importance of eating protein turned into hoarding tubs of protein powder and hundreds of artificially-sweetened protein bars. That being said, there is a moment when the adaptation becomes maladaptive; but does that justify calling someone disordered? Does that justify pathologizing the individual? Personally, I don’t think so.

Why We Must Stop Pathologizing Eating Disorders

Calling someone an anorexic, a bulimic, a binge eater, what have you, means intertwining that condition with their identity. And as soon as we identify with something, we act in alignment with that identity. For example: I like to say I’m a writer. Because this is my identity, I will take actions that support the identify of a writer. Similarly, calling someone an anorexic shields you from the possibility of helping them create another identity. But the significance of this identity discussion goes even further: by pathologizing someone’s desperate attempt to cope, we are turning them into a problem that needs to be fixed. And as soon as we’ve placed this judgment on them, we lose the possibility to be curious about the mechanisms that are causing the “disordered” behaviors in the first place.

In the next part of this 3-part series, we will dive into a whopping 8 reasons why autistic people may fear weight gain. You can read Part 2 here.