Autism and Anorexia | My ED Recovery Story

Watch the YouTube video here

Most eating disorder professionals overlook autism. Yet even if they do recognize it, there’s a gap in understanding the nuances of just how autistic traits intertwine with eating disorder behaviors. For this reason, many autistic people are invalidated, traumatized, and stamped with countless labels including “hopeless,” “manipulative,” and “too complex” while trying to get help for their eating disorder(s). Just like me, they’re often told they’re never going to get better and that they’ll just have to “manage” an ED for the rest of their life.

If you or someone you care for is currently struggling with food, exercise, and their body, I’m here to tell you from the start that full recovery is 100% possible for ANYONE. But here’s the catch: you have to want it. In this post, I’m going to share my story with growing up undiagnosed autistic, how this led to the development of an eating disorder, and what I did to tip the scales (no pun intended) from being terrified of recovery to actually wanting to do whatever it took to find freedom from my eating disorder.

It goes without saying that there’s only so much I can cover in a single video, so if you want to dive even deeper into the complex connection between autism and eating disorders, be sure to grab a copy of my book Rainbow Girl: A Memoir of Autism and Anorexia.

Autistic Masking and Eating Disorders

As I’m sure any neurodivergent person – diagnosed or not – can attest to, growing up in a neurotypical world is a frightening thing. On a deep soul-level, you know you’re different from everyone else but you can’t quite pin down why. You know your interests are different, you know the way you approach problems is different, and everyone seems to have been born with the rulebook on how to have social interactions, except for you.

So what do you do? You adapt. You adapt by taking on external identities, camouflaging like a chameleon in the rainforest, and hiding in the shadows…to protect yourself from being found out and preyed on. Because perhaps, there have been times where you did show your true self; but rather than the authentic version of you being respected and celebrated, you were made fun of. You were bullied and teased, which only proved how important it was for you to learn to conform.

Despite believing that conformity is the only way to survive in this threatening and unpredictable world, the part of you that is so unique, the part of you that is painfully aware of your potential, knows that you can’t conform. It goes against your entire nature. But this adaptation, this masking, it isn’t a choice – it’s a survival strategy. In case you're unfamiliar with the term, masking means putting on a version of yourself that you think the world will accept. It’s carefully studying how others act, how they speak, and then mimicking their behaviors, expressions, and even their emotions. You learn to smile when you’re supposed to, to laugh when others laugh, and to suppress stim urges, all in an effort to avoid being labeled as “weird.” 

When you’ve masked for long enough, you begin to lose sight of where the mask ends and where you begin. Obviously, pretending to be someone else is exhausting, but it seems safer than the alternative. When it comes to autism and eating disorders, this is often where the confusion starts. You live in a constant state of tension between who you are and who you feel you should be. The pressure to fit in feels suffocating, and the gap between the masked version of you and your authentic self grows wider. It’s in this ever-growing void that the seeds of disordered eating behaviors don’t only take root, but thrive.

Autism, Eating Disorders, and Existentialism

Speaking of voids, I’ve come to realize that a key reason why autistic people develop eating disorders is due to the fact that we are existential thinkers. We’re always asking why – Why do I exist? Why am I like this? Why am I so different? For me, these questions have always been relentless. I can never just accept things at face value; I need to understand why something is a certain way. This constant curiosity is one of my greatest gifts because it allows me to read between the lines, to uncover things most people don’t care to look for, and if I’m being honest, it’s at the root of my work in bridging the gap between neurodivergence and eating disorders. But as Shakespeare so famously said: your greatest strength begets your greatest weakness.

Most of these existential questions – if any – don’t have answers. If they did, philosophy wouldn’t exist! This knowing that we know nothing can weigh so heavy on one’s conscience that it becomes unbearable. So to take that weight off (no pun intended), you naturally go in search of an escape. And what a more convenient way to escape than through food, something we all need to engage with every day?

Obviously, this existential angle is only part of the reason many autistic people develop eating disorders. Other traits include literal thinking, perfectionism, special interests, and the need for structure and routine. So let’s unpack some of these traits and how they can manifest as eating disorder behaviors.

How Autistic Traits Manifest as Eating Disorder Behaviors

If you’ve read my book Rainbow Girl, you know that the spark that set off the raging fire of an eating disorder for me was fifth grade health class. We learned about the food pyramid when that was still a thing, we learned about how “unhealthy” processed food was, and how sugar caused diabetes. We learned about the importance of physical activity and that to maintain optimal health, you should exercise for at least X minutes per day. While I now recognize that all of these recommendations are deeply rooted in fatphobia, diet culture, and ignorance of how sensitive children are to the way we speak about food and movement, my autistic brain took all of this information so literally that I truly feared I would get a heart attack or diabetes or any number of diseases society fear mongers into believing if I didn’t start changing the way I did things.

Before this time I had been your typical “picky eater.” I ate the same thing for every meal every day, and let’s just say it consisted of what most people would label as “junk food.” Although I was obviously sad to let go of my sugary cereal and white bread and mac and cheese and sweets, I felt I had no other option then to overhaul my diet. My new purpose in life was to be the “perfect healthy eater.”

A powerful autistic traits that’s worth mentioning in this context is perseverance. When I commit to something, I commit to it and will allow NOTHING to stand in my way. So as health and fitness became a special interest of mine, I became more sucked in, until my entire existence was contained within the snow globe of an eating disorder.

My life – or rather, survival – stayed in the snow globe for many years. I became so attached to all of the rituals and routines I had created around food and movement, that the eating disorder became my entire identity. Every second of every day revolved around planning what, when, and how I was going to eat, and when and how much I was going to exercise. Somehow, I was passing all my school classes with flying colors, although I seriously question how I managed that considering 99% of my thoughts were food and exercise related.

Interoception in Autism and Eating Disorders

Alongside the autistic trait of literal thinking and this overarching theme of existentialism we’ve been talking about, another autistic trait that can contribute to disordered eating behaviors is a lack of interoceptive awareness. Interoception, also known as the eighth sense, is responsible for helping you interpret internal cues. It balances the need for change with the need to stay the same. Your interoceptive awareness helps you translate a hunger cue into the action of needing to eat, and tells you that a full bladder means you need to go pee. Because neurodivergent individuals tend to struggle with interoception, we may have more difficulty interpreting these inner cues, which makes eating when you’re hungry and stopping when you’re full a challenge.

While I was on this existential journey to becoming what I believed to be the epitome of health, and I realized that I didn’t have tummy rumbles like everyone else, my literal mind once again translated no hunger cues into no need to eat. Of course, NOW I know that hunger makes itself known in various ways beyond a growling stomach, which was evident through my constantly thinking about food. But at the time, all I knew was that my previous way of living wasn’t working, so I would do whatever it took to find a sense of fulfillment.

This searching for meaning underscores the entire duration of my eating disorder. And like all forms of searching, it was founded on a sense of lack. This deprivation is, ironically, the eating disorder's greatest source of fuel. But the ED is never satisfied. As soon as I cut out one food, the temptation to restrict something else grew stronger. As soon as I did more pushups one day, I believed I had set a "precedent" and would have to do at least that many pushups the next. This constant cycle of “never enough” is what kept the disorder alive.

Panic Attacks in Autism and Eating Disorders

Just as my adherence to structure and routines became more entrenched, my ability to tolerate even the slightest changes diminished. I started getting panic attacks when my mom would have dinner five minutes late, or the store didn’t carry the brand of yogurt I always bought. The frequency of my panic attacks increased by the day, so much so that my entire family was constantly walking on eggshells around me.

There was one night in particular that I define as my rock-bottom moment, that is to say, my tipping point. I remember looking at my sisters trembling in the corner of the kitchen, and although I had know for months that my ED was affecting everyone around me, it was in that moment that the fear I saw in their eyes penetrated my entire being. The feeling was so strong and so painful that I ran up to my room to scream and cry on my bed, realizing I was pushing everyone away, but wanted nothing more than my family to come up and tell me everything was going to be okay.

When they eventually did come, through my tears I exclaimed “I can’t do this anymore.” It was precisely in that moment that I knew I could never go back to the eating disorder. It was is if all this time, I had been straddling an ever-growing void, a chasm between the eating disorder and my true self. I had now chosen my true self, and the void was now too great to ever leap back to the lands of disordered eating.

Existential Suffering After an Eating Disorder

Now, I know these metaphors may all sound very poetic and as if “Oh, she chose freedom, what a wonderful happy ending,” let me tell you: the reality was far from sunshine and rainbows. I knew in my heart that no longer engaging with the eating disorder and choosing to surrender to these unknown lands was going to be a tough journey. But I also knew there really was no alternative, or at least, an alternative worth suffering for.

I’ve spoken on this before in my post on existential suffering after an eating disorder, and in that post, I explain how suffering is not something you can ever get rid of. The eating disorder is an attempt to numb yourself from the existential suffering, meaning that when you recover and you do chose abundance over scarcity, the existential questions come at you with a vengeance.  

I want to be really clear here about one thing: even though you’re attempting to numb yourself from the suffering, the eating disorder itself is nothing but suffering – it’s an endless cycle of restriction, false control, and self-denial. It’s suffering for the sake of suffering, leading you nowhere but deeper into isolation and fear. But when you step into the abundance mindset, yes, the suffering is still there, but it transforms. Instead of suffering for the sake of control or avoidance, life turns into suffering with purpose. Life is finally something worth suffering for. It’s hard, and do I struggle with anxiety and fear and existential thoughts every day? Heck yes! But my struggles are the sole reason I am doing this work today. It’s these deep struggles that allow you to create deep, meaningful connections, and isn’t that the sole reason we’re on this planet?

Embracing Neurodivergence After an Eating Disorder

Alongside this idea of creating meaningful suffering, a significant part of leading an authentic life after an eating disorder as an autistic person is learning to embrace your neurodivergence. If you’ve read Rainbow Girl, you know the incredible backstory to how I discovered I’m autistic and that was through my very first coaching client.

By this point, I had been recovered – to the extent I believed one could be recovered – for nearly two years, and I wanted to help other people find freedom and create their purpose in life. But little did I know there was much more freedom awaiting me on the other side of my autism diagnosis. In other words: if my ED recovery had been like baking a cake, my autism discovery was the cherry on top.

Not only did an autism diagnosis validate all the experiences that previous providers had labeled as “the eating disorder talking,” but it allowed me to make sense of my entire life – long before I struggled with food and movement. I finally understood WHY I had felt so different from my peers, WHY I had also been considered “so mature,” and “so wise beyond my years,” and even WHY I eventually turned to food and exercise as an escape.

This knowledge and understanding allowed me to give myself full permission to disentangle my autistic traits from what had been previously been labeled “ED behaviors.” In other words, knowing about my neurodivergence allowed me to separate the eating disorder identity from my true, authentic identity. All throughout treatment, I had been conditioned to believe that the eating disorder was always going to be like a speck in my rearview mirror, but now, I truly understood what it meant to be fully recovered. To be yourself without any sliver of eating disorder influence. 

I dive deep into how autistic traits are “ED behaviors” in the Autistically ED-Free Academy so I won’t do a full deep dive here, but I do want to give some concrete examples on how my autism discovery helped me fully recover from my eating disorder.

Autistic Traits That Are Often Labeled As “ED Behaviors”

One trait that is VERY prominent in autistic people is a need for structure and routine. Discovering I’m autistic allowed me to respect this trait without feeling like I was “failing” at ED recovery. In treatment, I was often told that I had to learn how to be “spontaneous” and “more flexible,” but these “goals” can be so abstract that the autistic mind cannot make sense of them.

For autistic people, things need to be clear; that’s of course WHY the eating disorder is so enticing. So during my own recovery, the fact that I was so tied to a meal plan and I did want to stick to a schedule made me feel like I was doing recovery “wrong.” I didn’t understand how other people could be so okay with doing things at wildly different times, and yet it remained such a challenge for me...until my autism discovery. That’s when I realized I’ve always done EVERYTHING in my life in a planned and structured way, so wouldn’t it actually be weird if I didn’t do that for food?

The same goes for wanting to eat alone. During my eating disorder, all mealtimes had to be done out in the open among people, because well, otherwise how could anyone trust you were eating it right? Especially FBT (Family-Based Therapy) involved having your parents and treatment team watch you like a freaking hawk while you were eating. No wonder it’s traumatizing!

Anyways, I’m sure that at least some of my current preference for eating alone is tied to the trauma of FBT and eating disorder treatment in general, but thanks to the incredible community of neurodivergent people I’ve met on this journey, I know that wanting to eat alone is a very common autistic trait. And, come to think of it, I often preferred to eat alone when I was younger too! Again, my autism discovery allowed me to give myself permission for this preference to exist without it being labeled as an “ED behavior.”

Now, obviously there’s so much more I could say about this topic, and the good news is I do! If you want to learn more about the connection between neurodivergence and eating disorders, and also want tools and strategies to support either yourself or a loved one through the ED recovery process in a neurodiversity-affirming way, be sure to grab a copy of my book Rainbow Girl and enroll in the Autistically ED-Free Academy!