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Livia Sara: Bridging the Gap Between Autism and Eating Disorders

Updated: Dec 20, 2023


Some of the topics discussed may be distressing for some readers. Make sure to access support services if needed:
- Butterfly Foundation Helpline: call 1800 33 4673
- Call 000 in an emergency

The link between autism and eating disorders is undeniable, yet incredibly misunderstood. In fact, many healthcare professionals are so unaware of the overlap that they write their patients off with labels such as “hopeless,” “manipulative,” and “too complex.” When I was fifteen, I was even told that I “just had to accept the fact that I was never going to get better.”
 
But that grave prognosis didn’t happen until I was years into my illness – years during which I didn’t even know what autism was. And who could blame me? Or my parents? Or even my teachers? The word “autism” is shrouded in stereotypes, likely the most famous being the character Raymond Babbitt in the movie Rain Man, an autistic savant that could count toothpicks with the glance of an eye and do complicate mental math equations in a matter of seconds. The stereotypes promoted in such media portrayals are biased and not representative of the vast majority of autistic folk. Indeed, these stereotypes fail to acknowledge the incredible heterogeneity of the Autistic community, such as with regards to gender, ethnicity, and cognitive styles or abilities.
 
Because autism and eating disorders commonly co-occur, it’s essential that space is made for lived experience. Only by listening to others’ stories – and being critical of statements made by those without true first-hand knowledge of going through an eating disorder while being autistic – can we create a world in which neurodiversity is recognized and embraced within eating disorder treatment models.
 
It’s worth mentioning that what I’m about to share is just my story; the story of one girl who was diagnosed with anorexia nervosa, only to discover the eating disorder was a mask for autism all along. Although you may recognize yourself or a loved one in my words, we are all unique. Parts of my experience may be relatable, while other parts may not. Therefore, it’s important to stress that you stay open towards the tools and insights that will land on your own path. If there’s one aspect I’ve learned on my own journey, it’s that there is a MESSage on the other side of every MESS. In the following words, I’ll share mine, as well as tools and insights for what needs to change to make eating disorder treatment neurodiversity-affirming.
 
Growing up, I knew I was different. I didn’t have the same interests as the other girls in my class, I didn’t like parties, and I sure as hell didn’t like pointless conversations about make-up, dolls, or even talking behind people’s backs. Instead of socializing, I preferred to entertain myself in activities that ‘made sense.’ I drew symmetrical rainbows and castles, immersed myself in scientific literature, and played soccer outside with the boys. Whatever I did, it needed to have a purpose. For this reason, when I did socialize, it took the form of serious discussions with people much older than me.
 
As one can imagine, this alienation caused incredible loneliness. Perhaps not outwardly, as I was a star athlete on all my sports teams, a high-achieving student in all my classes, and was deemed “wise beyond my years” by my parents’ friends. Only I could see the dark shadow of isolation cast upon me.
 
When I was eleven years old, we started learning about health and nutrition in school. We learned that sugar is “bad,” that you need to be at a certain BMI to be deemed healthy, and that you need to exercise a certain number of minutes each day to protect your heart. My literal thinking and perfectionistic tendencies latched onto these recommendations without thought. Quickly, the notes in my black-and-white composition notebook spiraled into a special interest and ultimately, what I believed would be my golden ticket to belonging and purpose.
 
Whereas I was the classical selective eater (‘picky eater’) growing up (my diet consisted solely of sugary cereal for breakfast, bagels with cream cheese or PB&J sandwiches for lunch, and macaroni & cheese with chicken nuggets and broccoli for dinner), my diet now consisted of everything I learned was “healthy” in school. I cut out all sweets. I forced myself to eat whole grains and vegetables. And I started running.
 
Because I had always been a small child (morphology), a small amount of weight loss was enough for me to be categorized as “underweight” at the doctor’s office. My parents had become increasingly worried with my sharp changes in behavior during the months I embarked on my quest for perfect health, but they suspected nothing of it. Perhaps this was just their daughter growing up! But after repeated visits to the pediatrician and a failure to gain weight as deemed medically appropriate, I was diagnosed with anorexia nervosa and depression at the age of twelve.
 
From the start, the anorexia nervosa diagnosis felt wrong (and frankly, still does). I had learned that people with anorexia nervosa had body image issues, feared weight gain, and ate close to nothing; criteria I most certainly did not resonate with. I never experienced distress in relation to my body shape, nor did I want to lose weight. My lust to control something in this lonely and unpredictable world had simply resulted in me losing weight. Throughout my eating disorder, I ate three meals and multiple snacks a day. It was my naturally fast metabolism paired with my rigid exercise regimen and abstaining from what I perceived as “unhealthy” that resulted in weight loss.
 
Nonetheless, I was sent to multiple eating disorder clinics. Because I was a minor, I had zero choice in the matter. I was mentally ill, and mentally ill people are most often deemed incapable of making their own decisions and denied autonomy and agency. Plus, my parents only wanted to do what was best for me. If all the professionals recommended sending me to “specialized” eating disorder treatment, that’s exactly what my parents would do.
 
For years, I was tossed in and out of every treatment center imaginable. I was forced to engage in CBT, DBT, FBT, along with several other therapeutic modalities claiming to be “evidence-based.” However, the only “evidence” I got to experience was that these approaches inflicted trauma upon me and my entire family. A proper investigation of harms versus benefits in the context of all treatments, whether psychological or pharmacological, is an essential part of informed consent. Unfortunately, researchers and clinicians so far have paid little attention to the possibility of harm directly resulting from psychotherapies, especially when it comes marginalized communities, including autistic people. For example, there is emerging evidence suggesting that CBT and FBT for eating disorders may cause harm (including trauma) to autistic people, which makes the claim that they are broadly and universally “evidence-based” questionable and that standards for deeming a therapy framework “evidence-based” need to be upgraded.
 
In 2015, after I had escaped from an inpatient ward and walked all the way home in the dead of night during the freezing winter, it became crystal-clear that all the treatments were doing more harm than good. But because the treatment centers themselves were, according to them, “experts in the treatment of eating disorders,” they denied being the problem. Which meant that I, the patient, had to be. Every time I was discharged from a clinic, I received a multitude of new labels. And not just the aforementioned “hopeless,” “manipulative,” and “too complex” stickers I’d been plastered with prior, but many clinical diagnoses as well. Anxiety, OCD, depression, bipolar, borderline, and countless others.
 
It wasn’t until the next morning after my escape from the clinic in the Netherlands that I was removed from the Dutch eating disorder system with the parting message that “I was just going to have to accept the fact that I was never going to get better.”
 
I have often wondered why professionals would say such discouraging words to their patients, and my conclusion is always: they’re people too. People that are working within a neuronormative system of care where adherence to manualized treatments is prioritized, harms are not routinely measured, and lived experience voices are undervalued. Healthcare professionals are often placed on a pedestal, and in this light, it is forgotten that these individuals have their own fears and insecurities. When they are unable to help a patient because their situation is indeed complex, it challenges their sense of identity. Am I a bad doctor? Am I incapable of helping my patients? Did I do something wrong? Because the ego – the identity of self – wants nothing more than to be retained, the professional protects their identity of superiority through making the patient the bad, incapable, and wrong one (a form of countertransference). The patient is therefore deemed “defiant,” “looking for attention,” and the blame for not recovering is placed on the patient: it’s entirely their fault they aren’t getting better, not the therapy frameworks nor the healthcare professionals. In doing so, a healthcare professional creates the illusion that they’re making themselves right while ignoring the power dynamics that are at play in the therapy process.
 
Of course, to put a patient in the wrong serves nobody. Not only does it harm the patient, but it prevents the healthcare professional from engaging in self-reflection and critical thinking, developing, growing, and improving as a provider. If the healthcare system (let alone the world) has any chance of becoming neurodiversity-affirming and creating an environment in which people with eating disorders feel safe enough to put in the work necessary to recover, adopting a sense of humility is an absolute must. As Socrates famously said, “The only true wisdom is knowing you know nothing.” By viewing treatment challenges as an opportunity to learn rather than a problem that can’t be solved, we harness the power to turn the entire situation into one from which new discoveries and better ways of doing can emerge.
 
Alongside the adoption of epistemic humility (a modesty and curiosity-oriented mindset), there are numerous other actions professionals can take to be more accommodating of neurodivergent individuals. While there are simply too many to cover in this post, below I have outlined a few ideas:
 
●       Asking the individual how they prefer to communicate (for example, sitting side-by-side in therapy sessions to avoid eye contact).
●       Ensuring clarity around appointments and schedules (for example, if the session is scheduled to be 50 minutes, not going over this time).
●       Allowing enough time for the patient to process changes (for example, if the meal plan needs to be increased, agreeing on a time/day that it will take effect)
●       Allowing the patient to bring items that anchor them in safety (stim toys, blankets, books, etc.).
●       Asking the patient how they can make the environment sensory friendly (for example, dimming lights, removing ticking clocks and other distracting items).
 
Of course, these are merely a few ideas for how healthcare professionals can accommodate neurodivergent individuals receiving eating disorder treatment. While each person is unique and will have different preferences and support needs, it starts with trust and safety. By showing that you, as a professional, are willing to listen and have compassion for the person you are working with, you are creating a relationship of co-regulation. This mutual respect and understanding naturally invites openness and vulnerability, which is an essential part of the eating disorder recovery process.
 
The points mentioned above are accommodations that would definitely have made a difference in my own eating disorder treatment as an autistic person. Unfortunately, because my autism was still under the radar, I was treated just like anyone else. My autistic support needs were often labeled as “eating disorder behaviors” and I was frequently accused of lying when I expressed that these traits had nothing to do with my eating disorder. Such assumptions led me – being the perfectionistic, people-pleasing person I was – to mask more. I conditioned myself to say and do what I knew the professionals wanted me to, which only worsened my mental health. For how can you unleash your true self when the process that’s supposed to help you do that is the very thing contributing to your concealment?
 
Speaking of unleashing your true self, one of the keys that guided me on the path to living a life free from limitations was replacing the word “recovery” with the word “discovery.” When someone has struggled with an eating disorder for so long that it becomes entangled with their sense of identity, it becomes tempting to latch onto a new identity to “replace” the eating disorder-related one. By focusing on “recovery,” we adopt the identity of an individual in the eating disorder recovery phase. But this identity transfer creates a problem in and of itself, for it prevents us from discovering who we truly are (i.e., unmasking and developing a positive neurodivergent sense of self). Instead of focusing on “recovery” and doing it “right,” focusing on discovery creates the opportunity for an individual to become their authentic selves without the need for external identities.
 
While I didn’t know I was autistic (in fact, I didn’t even know what autism was) as I embarked on the path to setting myself free from the eating disorder, moving away from this “recovery ideal” and focusing instead on the person I wanted to become allowed me to free myself from the disorder. After all, the point of recovery isn’t recovery – it’s living a life in which you can be your authentic self!
 
It was during this self-discovery process that I tried new things, stepped out of my comfort zone, and launched my Liv Label Free 1-1 Coaching Program. While a fearful part of me screamed that I was incapable and would be of no use, my abundant self knew that I could help others that were going through similar struggles. And sure enough, when I asked my first client why she had reached out for coaching, she shared how she, too, had been labeled “too complex” and felt at a loss as to how to best approach freeing herself from her eating disorder. She told me about how being autistic perplexed treatment providers and therefore, made recovery seemingly impossible. As this client shared her experience of the world with me, my own eyes were opened to the possibility of being autistic myself.
 
I have incredible gratitude for my first client. If it weren’t for her brave decision to reach out for help, I may have still been confused about my own neurodivergent identity. For it was she who inspired me to educate myself on autism, and ultimately connect the once invisible dots within myself.
 
By committing to ongoing learning and improvement as an autistic person with lived experience of an eating disorder, I have discovered that the link between neurodiversity and eating disorders is one that needs so much more awareness. It’s for this reason that I’ve made it my mission to bridge this gap, share my story, and pass on the knowledge and insights I continue to gain. You can read my full story about growing up undiagnosed autistic, how this manifested as an eating disorder, and what was necessary for me to fully recover in my book Rainbow Girl. And if you want to learn more about my coaching and read my own blog, check out my website livlabelfree.com!
 
 
Learn more about Livia’s story, advocacy, and work:

 

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