How Treatment Made My Eating Disorder WORSE (as an autistic person with anorexia)

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Introduction

Hello and welcome or welcome back to the Liv Label Free podcast! Today’s episode is a little bit different because it’s not a solo episode and it’s not me interviewing a guest, but instead, I am being interviewed!

This conversation was initially released on the NeuroSpicED podcast presented by EDNA which is short for Eating Disorders Neurodiversity Australia, and is a podcast sharing neurodivergent voices with lived experience of eating disorders. After listening to the published episode when it was released in January, I thought it was SUCH a powerful conversation that I later reached out to the host, Laurence, asking her if she could send me the audio files so I could re-share it on the Liv Label Free podcast!

In this episode, I share my journey growing up undiagnosed autistic, how this led to the development of my eating disorder, and then I really dive into the dangers of traditional eating disorder treatment for neurodivergent individuals. I talk about gaslighting and how this conditioned me to mask in my conversations with “professionals,” how this invalidation led me to manipulate the treatment system, and I dive into several other topics that are important when it comes to the link between neurodiversity and eating disorders.

Of course, I also share what did work for me to fully recover from an eating disorder while embracing my unique brain, so hopefully you will feel empowered and inspired to do the same!

BOOK UPDATES

Before we dive in, I just want to give two quick book updates! First of all, my cookbook Nourishing Neurodiversity is officially published!! Nourishing Neurodiversity contains over 50 easy recipes that are vegan, gluten-free, soy-free, nut-free, AND 100% customizable to your sensory needs and preferences. The entire book is also filled with executive functioning tips, gut health tips, and information on how to improve mental health. Suffice to say, it lives up to its name of helping you nourish your neurodiversity

So grab yourself a copy, and if you know someone who’s neurodivergent, grab them a copy too! One of the reasons I created this book is because it’s the cookbook I wish I had when I was learning to eat in a way that aligned with my unique needs. So if you can help get it into the hands of more people who need that, we can advocate for neurodiversity TOGETHER!

You’ll also hear me mention my second book several times throughout this episode, and that is my memoir Rainbow Girl. It will be released in a few months and is truly the most vulnerable and unfiltered account of my life I’ve ever shared. I dive even deeper into several of the topics covered in the upcoming podcast, so if you like what you hear, you will absolutely LOVE my book Rainbow Girl!

You can be the very first to hear when it’s published by signing up for my book waitlist at livlabelfree.com/book. And if you’d like to get Rainbow Girl and Nourishing Neurodiversity AND all of my future books completely for FREE, you can become a Liv Label Free Patron by visiting the link livlabelfree.com/patreon, Now without further ado, let’s dive into the episode with Laurence!

Episode transcript:

Laurence: Hi Livia, it's lovely to have you!

Liv: I'm super, super excited to be here! I read your story and wow, it resonated so deeply with my own being diagnosed with an eating disorder while unknowingly autistic. I remember reaching out to you but hadn't heard back because somehow the message ended up in your spam folder or something. 

Laurence: Yeah, I'm sorry for that!

Liv: No worries! I don't even know how much later, but more than half a year later you reached out to me to be on the NeurospicED Podcast and I love that this comes full circle like it was meant to be. 

Laurence: Can you tell me a bit more about yourself? 

Growing up undiagnosed autistic

Liv: I was diagnosed with an eating disorder at quite a young age, 11 years old. Growing up, I always knew I was different. I would pretend to like girly things, even though I didn't, just so I would fit in, just so I would have "friends."

Laurence: It’s a bit like feeling like an alien and being dropped on this planet you don't belong. 

Liv: That’s literally how I describe it in my book that's coming out this year, too. I felt like I was dropped on a planet. Like I was dropped in a video game that I wasn't supposed to be in.

Laurence: And everybody knows the rules and can apply them and be functional, but then you're like: what are the rules? 

Liv: Yeah, exactly!

Laurence: And nobody wants to tell you! 

Liv: Interesting that you use the word “functional,” because when I look back on my childhood, especially school, I WAS very functional. I received very high grades, was a very well-performing student in school, did all the sports, fastest on the track team, scored all the goals in soccer, and was a highly competitive gymnast. Everyone looked at me from the outside like I was the epitome of some little girl bound for success, but deep inside I was very unhappy. Constantly living in fear, always anxious, and feeling this intense pressure to perform, because I had been conditioned with a kind of "we expect this from you," and had no idea about this underlying autism because of the stereotypes. It’s the same with stereotypes you see with eating disorders. I remember in the biology textbook, learning about anorexia, bulimia, and binge eating as if those were the only three eating disorders, and there was a graphic of a skeletal girl looking in the mirror and seeing a fat person staring back at her. 

Laurence: It’s very stereotypical and stigmatizing because it messages to fat people that they are not worthy. It's very traumatizing to feel like you are somebody's worst nightmare, so that image needs to go because it's very stigmatizing for those living in larger bodies.

Liv: Absolutely! One of the terms that I just do not like is “atypical anorexia” because it's called atypical. First of all, more people have anorexia in larger bodies, I believe, but because they're in larger bodies, they're not getting diagnosed with anorexia. 

Laurence: There's that assumption that you're not sick enough. 

Liv: Which is already SO prominent when you have an eating disorder and then you’re naming it “atypical” like it's not real. 

Laurence: Atypical anorexia is statistically more prevalent than “typical” anorexia. 

Denial of my eating disorder

Liv: Exactly. I don't like statistics. There are so many people going undiagnosed and the only people that are part of the statistics are the people that are recognized, right? When I was 11 or 12, I was diagnosed with anorexia and depression and OCD and so many other things, and for years denied that I had anorexia. I didn't have body dysmorphia, I didn't have fear of fatness or fear of weight gain, none of these things that all the therapists and healthcare professionals were stuffing down my throat, so I CAN’T have anorexia. All because I had that image in my mind of an anorexic person as someone who's very thin looking in the mirror and thinks they're fat. That is where the invalidation started, telling people I do not resonate with this and them saying, “No, you do, you are this thing, you are this label.” 

Laurence: It's almost gaslighting; it distorts your narrative and your feelings of how you feel about your eating disorder. 

Masking & manipulating in ED treatment

Liv: Absolutely. Suffice it to say, for over seven years I was forced in and out of treatment for my eating disorder, every time being the “perfect patient,” eating all the things, following all the rules, and then as soon as I got out I would spiral back into the behaviors because I was like, "You guys can't control me!" That just caused me to bounce back and forth. Also, while doing treatment I learned a lot of methods to manipulate the system. I learned how to mask for my therapists and nutritionists, and what language they wanted me to use. So if they say, “Oh, you have a hard time eating a cupcake because you're afraid of it,” I would store that for the next appointment when they'd ask why I didn't gain weight. “I was so afraid of the cupcake that's why,” and they'd tell me, “Wow, I'm so proud you're being honest with me!” It conditioned me to lie to get through treatment. I would hide food and do secret exercises. I figured out any way to prove to myself that no one could tell me what to do, finding all these secret ways to manipulate the system. That made the eating disorder much more ingrained. It reached a point where I was water loading, and for almost a year I made my weight go up on the curve in an almost flawless fashion by drinking extra water and putting coins in my underwear. I remember when I was caught, I had peed all over the scale at the doctor's office because I couldn't hold it anymore. It had gotten too serious. “This is the worst case of manipulation I've ever seen.” After that, I was again forced in and out of treatment. Two years later, my psychiatrist said, "Your case is too complex, you're just going to have to accept the fact that you're never going to get better." Now, I don't understand why anyone would say that to a 15-year-old girl. 

Laurence: Especially when it's their fault that they cannot properly diagnose you with autism in the first place, and treat you in a way that is harmful to yourself. And they didn't consider ‌Demand Avoidance, as well. You mentioned you didn't want people to control you, you wanted to have autonomy, and that's pretty relevant in terms of Demand Avoidance. Which psychiatrists technically should be aware of. 

My turning point

Liv: Yeah, especially when it comes to autism. Autistic people already have so much distrust in the world, that when you're in any kind of mental health care, establishing that trust is essential. If you're doing the opposite, and you're creating this hierarchical system, it's bound to create trauma. So yeah, I was completely given up on, tossed out of any kind of health care system, and that's when things got their worst, to a point in 2017 where I was on the edge of death. But it was during one of my panic attacks that I remember laying on my bed screaming and crying, “I can’t do this anymore, there has to be a better way!” Either doing something radically different by giving living a chance or I wanted to die. Those two options. So I gave recovery everything I've got. And I didn't care anymore if it’d be scary. Because that's why I clung to my eating disorder, right? It was safe and it was predictable. And basically, every autistic trait that manifested into food and exercise was my eating disorder. 

Laurence: It was going to be a special interest in some way. 

Liv: That's how I describe it in my book. When I was 11 or 12, healthy eating became my special interest.

Laurence: That's why it's dangerous to apply moral values to food. “This is healthy, that’s unhealthy.” Autistic people with their black-and-white thinking go, “Oh, this is healthy, I should just eat that.” It becomes so ingrained and becomes a special interest. That's risky. 

Autistic traits that manifested as ED Behaviors

Liv: The literal thinking too. In fifth grade we learned that an apple is “healthy” and a cookie is “unhealthy,” plus all these things about childhood obesity and diabetes. I believed if I ate cookies that I would get diabetes. So no cookies for me! But anyways, in 2017, I committed to full recovery and it came with its ups and downs, but I gained weight and my mental health got better. But throughout that time, something was missing. There were so many of what I now refer to as "autistic eating disorder behaviors" that were still very present. I'm not engaging with the eating disorder anymore, so WHY am I still so focused on numbers? Why do I STILL have difficulty with hunger cues? Why do I still have these really strong preferences for food temperatures and textures and all these things that professionals are saying are my eating disorder? It just didn't make sense! There was something much deeper that no one was seeing. Now, back in 2015, around the time I was told I’m too complex, I’m never going to get better…

Laurence: We all got that message. It's crushing and it's devastating to be told, “You're too unwell, we don't care anymore about you. Bye.”

Liv: I've thought a lot about why healthcare professionals say that, and my conclusion is they're humans, too, with fears and limiting beliefs. Blaming their inability to help on the patient lets them off the hook. 

Laurence: It makes them feel better about themselves. But eventually, they cause trauma to vulnerable people, which is not very ethical, especially when they get paid to help and they don't. 

Why I don't use statistics

Liv: Oh, yeah. ESPECIALLY that. Don't even get me started on the whole money part of this. I dove deep into the studies - and this is another book I plan on writing - all of these statistics are based on stereotypical thin white women with access to treatment or with insane insurance, which is non-existent in the U.S. if you're not wealthy. Yeah, it's a big problem. And I have thin privilege. I did fit that stereotype. I did have access to treatment. But that's a whole other rabbit hole. Going back to 2015, a friend of my mom's, who was a therapist and worked with neurodivergent people, suggested I may be on the spectrum and recommended my mom read the book Aspergirls by Rudy Simone. But so many people believe that autism stereotype. I still get that every day when I say I'm autistic, people are like, “How? You're fine in social situations.”

Laurence: “You don't look autistic!” All those unrealistic and stupid stereotypes: You lack empathy, you don't make eye contact, you cannot have friends, and you cannot be good at school.

The importance of separating autistic traits from ED behaviors

Liv: Oh, I wrote a whole book about this: 85,000 words - so that's what I have to say about that! But yeah, I was very resistant to this new label because I had already been diagnosed with anorexia, depression, OCD, and anxiety, and the last thing I needed was another label. But after I had started my Liv Label Free Coaching Program, my first client was autistic, and she had read my story about being too complex and all these non-compliant labels, and it resonated with her. So as I started working with this girl, a lot of what she was describing with sensory preferences and difficulty with hunger cues, were all the things that I still experience. So, wow, maybe this whole autism thing from five years prior, maybe there IS something there! I went into my mom's room, got the book Aspergirls, and started reading. I have never read a book so fast in my life. From the very first page, it was me, it was insane. No one had ever described me so accurately before. I always say if my recovery from an eating disorder was like baking a cake, the autism discovery was the cherry on top. That was the last thing I needed to go over that edge into fully recovering. Because I could stop labeling certain preferences and traits as “eating disorder behaviors,” and now see them as autistic traits that are part of who I am. Allowing those things to be there, allowing me to microwave my coffee five times if I need to and not having it be an disordered behavior made me realize I AM recovered. These things that the health care professional said were eating disorder behaviors were not in my case. In my case, they're just preferences. Allowing that to exist and be there, no longer focusing negative energy on it, that I believe is allowing me to fully live my life. I think that's why I don't like the word “recovery” very much. I always say where your attention goes, energy flows, and if you're so focused on recovery from your eating disorder, you will stay stuck in recovery from your eating disorder. The point of recovery from your eating disorder is to live your life. Embracing these traits that, at first, were eating disorder behaviors allowed me to fully do that.  

Laurence: It's something that health professionals miss completely. They think that normal autistic behaviors are ED behaviors and they try to cure or treat them. This is harmful because they're NOT eating disorder-related behaviors; they're autistic-related behaviors that help with self-regulation and self-soothing. In your case, it sounds like your understanding of autism, in terms of self-awareness, has led to self-acceptance, which then triggered your recovery. 

Liv: Exactly. Embracing autism is what makes me stronger and more confident. That's when I started shifting all the work I was doing online with Liv Label Free into bridging that gap between neurodiversity and eating disorders because I discovered that there was a whole world of people out there who were struggling with the same thing. There was this huge need for people with lived experience that can help people recover and live that full life while embracing their autism. That's my ‘Why’ for doing what I do today. Because I know how important it is to have validation of being allowed to be yourself. If you're going to look everywhere outside yourself and fit into this mold that you were never supposed to fit in anyway, how do you ever expect to be yourself? You are enslaved to your environment and your external circumstances! How can you ever have any kind of freedom if you're trying to live a life that isn't yours?

Laurence: I can relate, as well, in terms of being labeled too complex and people giving up on you, with the autistic traits which help you live your life being medicalized and pathologized and trying to be cured. You end up fighting yourself rather than the eating disorder. If you fight your autism, then you fight yourself, and there's no point to that except harm. Trying to accept I have food preferences, very strong ones, and that's fine, it's not eating disorder behavior, it's autistic behavior. I have to embrace it, otherwise I'll never recover from my eating disorder. How do you think your neurodivergence has affected the development of your eating disorder and its maintenance? 

How has neurodivergence affected the development of your eating disorder and its maintenance?

Liv: It's really important to recognize there are a lot of autistic traits that when manifested in food and exercise can get very extreme, and that is a recipe for an eating disorder. For example, we talked about literal thinking, right? Taking health recommendations very literally. I remember being told to eat THIS to be healthy or exercise for THIS much time each day to be healthy. Back when we still had the food pyramid, I was like, “Oh, well, oil is such a slim part of this pyramid, why not just cut it out!” Just trying to be very perfectionistic in how I approach these recommendations and healthy eating. Everything became a special interest. I always say that my eating disorder was simply a manifestation of my autism and I think a lot of it has to do with anxiety. Because I'm pretty sure that every single autistic person also has anxiety, and that has to do with being conditioned to not trust the world. 

Laurence: And ourselves, as well. 

Liv: Yes! I once heard a super powerful quote: “The opposite of anxiety isn't calm, it's trust.” So many autistic people have anxiety because we don't trust ourselves or the external world. We don't trust what we're supposed to do. And that's why we mask and use all these coping mechanisms. It’s interesting when people say that autistic people are very fixed and rigid in how they think because I believe it's the complete opposite. I actually think autistic people are VERY flexible and open to new opportunities, but are so overwhelmed by the abundance of choices and opportunities, we become paralyzed. To protect us from that analysis paralysis and anxiety that comes with overwhelm, we'll just do one thing all the time. Because at least we know what to expect. That perspective changed me. Autistic people are very resourceful in finding coping mechanisms to protect themselves, but it has caused us to appear a certain way in a world that wasn't built for us. So a lot of it has to do with anxiety. But there are a lot of overlapping traits: Strong preferences for food texture, temperatures, looks and feels, and not wanting to feel very full because that can be very uncomfortable. When it gets to a point where those traits stand between you and living life to your full potential, THAT defines a disorder. That’s another label, like Autism Spectrum Disorder, that I just completely disagree with, because if you were able to embrace your autistic traits and use the autism to live a full life, how is that a disorder? It's allowing you to be in order. An eating disorder, on the other hand, prohibits you from living life. For me, that was a very important distinction to make in recovery, as an eating disorder is a disorder, not who I am. It does not define me. That's why I always say I HAD anorexia rather than I WAS anorexic. With autism, it's the complete opposite: I AM autistic, I do not HAVE autism. Autism is not something I can get rid of. It's part of my identity. It's who I am. So that is how my neurodivergence affected my eating disorder, those overlapping traits, anxiety, and being a coping mechanism. It creates predictability and this false sense of safety. 

Laurence: And control.

Why are autistic people more prone to eating disorders?

Liv: Yes, and I think that's why autistic people are more prone to eating disorders because the world is so unpredictable, so out of control. And then, interoception also plays a very important role. Interoception is the sense through which we monitor the inner state of our body. So whether you're too hot or too cold, whether you're hungry or thirsty, that's all regulated by interoceptive awareness. Neurodivergent people tend to lack interoceptive awareness, so we're not always as aware of whether we’re hungry or whether we’re cold. Growing up, I remember not feeling physically hungry in the sense of stomach rumbling. And you learn in school that if you're not hungry then don't eat, right? And so I lost weight. They're doing a lot of research now on what impact traumatic birth has, and I was born two weeks late but with the weight of a premature baby. I was a very, very small child. I was always the smallest one in class and my nickname was ‘Little Livia.’ So when I didn't eat when I “wasn't hungry,” plus cutting out so-called “bad foods,” I lost enough to put me into energy deficit and developed an eating disorder. As I mentioned before, all the forced treatment, saying I HAVE to do this, trying to take away the very thing I believed was giving me control, made me cling to that thing even more. 

Laurence: Exactly! It is counterproductive. 

Liv: It extended the duration and increased the severity of my eating disorder. I can never look back in time, never know “what if?” That's counterproductive. You can only go forward. But I truly believe that if I would have known about being autistic, AND if that would have been accepted and accommodated, my eating disorder would not have become as bad as it became. I don't know if that resonates with you, as well.

Laurence: Yeah. It became chronic. Accommodating my autistic traits and accepting myself for myself would have helped in my recovery. But I mean, if I had been diagnosed with autism early in childhood, I may not even have had an eating disorder at all. And that's probably even more important. 

Why I now see an eating disorder as a GIFT! 

Liv: Hindsight is always 20-20. But at the same time, developing my eating disorder and how my life's course went was the greatest gift. It was supposed to happen that way because the work that I do now, helping other people overcome their eating disorders while embracing their neurodiversity, I wouldn't want any other life. It's so fulfilling seeing other people get better and discover who they are. I don't think I would feel so strongly about knowing who I am and knowing my boundaries. I don't think I would be where I am or be who I am if it weren't for going through so many struggles and obstacles. Ultimately, that's what makes us stronger.  

Laurence: I agree. I wouldn't be where I am today if it wasn't for the struggles I had encountered, but who is to say that maybe my life wouldn't have been fulfilling if I didn't? That's always in hindsight and you can speculate on everything. I was curious, do you think that masking has maybe had an effect on your eating disorder or contributed to it in some way? 

How has masking affected or contributed to your eating disorder? 

Liv: I do think so. Especially trying to be a normal girl and pretending to do all the things that I didn't want to do. That is partially tied to anxiety, I think. I was always so anxious in social situations or in any situation where I didn't feel safe. If you think about our nervous system, anxiety is being in that state of fight, flight, or freeze, and that shuts off physical hunger cues and makes it physically harder to eat. So the anxiety that came with masking made it physically harder for me to eat. Also, mentally trying to fit a mold of who I wasn't supposed to be gave me this huge sense of no control. It causes you to turn to other things that give you that false sense of safety and control. Sometimes people turn to other addictions, but when you're like 11, what is super easy to access and super easy to control at that age? How you eat and how you move. 

Laurence: I can relate. Not fitting in and being bullied for who you are, then you think, oh, maybe if I lose weight then I'll be accepted and my social awkwardness won't matter as much. That's an experience very common in autistic people. I think the eating disorder itself is a form of masking in some way.

Liv: I COMPLETELY agree with that. I wrote a podcast script about something, and I say that the eating disorder is a mask for who you are, and when you can accept your autism, you no longer need that mask. That's really scary because you're so used to wearing that mask.

Laurence: You don't know who you are anymore. When you realize you're autistic, “What is the real me and what is the mask?” Sometimes it's really, really hard to disentangle. It's so ingrained that the mask becomes who you think you are. And it's a lot of painful unpacking and self-discovery.

What makes recovery from an eating disorder so difficult? 

Liv: And I think that's also a huge part of why it is so hard for autistic people or anyone, in general, to recover from an eating disorder, because you've correlated your identity to that thing. Letting go brings a sense of emptiness and a lack of purpose that is so, so scary. We cling to what we know and what is safe, acting in alignment with how we identify. So if we identify as someone who needs an eating disorder, that's how we will continue to identify and continue to live. But I think that's the first step to living a free life, saying you do not want to identify as this person anymore. That's why I don't like the word “recovery” very much. When you identify as someone in recovery, you will act in alignment with someone in recovery and stay in recovery. But again, that's not the point. The point is to be free, to be recovered, to be out of recovery. The approach I take with working one-on-one with clients is saying let's not focus on doing recovery a certain way, let's focus on who you are at your core. Who do you want to be? How do you want to identify and build on that? Because that is SO MUCH more productive. 

Laurence: And not listening to what society tells you is normal. Just be yourself and stop caring what people think of you. If you're weird, if you're awkward, then so be it! Be proud of it. Embrace it. 

Liv: Exactly!

Laurence: So what few words of wisdom or recommendations would you give to neurodivergent people struggling with an eating disorder that still need more guidance? 

What are some recommendations for neurodivergent people struggling with an eating disorder? 

Liv: You are NOT bad, you are NOT weird, and you are NOT weak for struggling with an eating disorder as a neurodivergent individual. That's the first thing I want to say. Your struggles are so, so valid. You are sick enough, you are not too complex or any of these labels that anyone has told you. I know this is going to sound so cliche, but full recovery and living a life of freedom and without restriction is 100% possible for you. When it comes to achieving that life, it's SO important to allow your journey to NOT look the same as it would for a neurotypical. You have a very different brain, you are unique, which means the approach you are going to take to discovering and unleashing your potential is also going to look unique. For me, the most important part of becoming fully recovered from my eating disorder was to stop trying to fit into the mold of what I believed recovery looked like. For so long I believed I could only be fully recovered if I no longer had certain preferences or routines or sensory needs around food. But that was chasing something that didn't exist due to who I am.

Laurence: It's essentially chasing the neurotypical idealization of recovery, which is not for autistic people.

Liv: I don't use the word “impossible” a lot, but that is actually impossible. 

Laurence: And harmful, as well.

Liv: Allow yourself to embark on a journey that is unique to you. If you're struggling with feeling understood and seen, because most treatment professionals DO NOT understand autism, especially with eating disorders, I recommend finding someone who does understand. Lived experience is the most powerful qualification for any help or support. But it all comes down to permitting yourself to be yourself without labels. And that's also my whole philosophy of Liv Label Free. Restriction is rooted in labels: labeling food as good or bad causes us to restrict; labeling behavior as should or shouldn't causes us to do things we THINK we should do, even if what we say we shouldn't are the very things we want. Give yourself permission to be the fully unique version of you, because the world only has one you. 

Laurence: And it needs one of you, as well. 

Liv: Yes, exactly! Thank you so much, Laurence, for having me. 

Laurence: Thank you very much for being here. Really appreciate it!