Episode 53: The Intersection of Autism and Eating Disorders [featuring Livia Sara]
May 09, 2024
Show Notes
Autism and eating disorders have a complex relationship that until more recent years has been overlooked often resulting in traumatic approaches to recovery and a misunderstanding of the experience and mindset of Autistic individuals struggling with disordered eating.
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, talk with Livia Sara, a recognized autism advocate in the eating disorder recovery space, author, and podcast host, to dissect the intricate relationships between autism, eating disorders, and the neurodivergent experience. Together, they share personal experiences and professional insights, diving into a conversation that's both deeply personal and universally relevant.
Top 3 reasons to listen to the entire episode:
- Gain a deeper understanding of how eating disorders manifest differently in the neurodivergent community, including unique challenges and how Avoidant/Restrictive Food Intake Disorder (ARFID) can be mistaken for eating disorders.
- Explore the power of autonomy and control in the context of both fueling disordered eating and being the deciding factor in recovery, which offers a better understanding of eating disorders within the neurodivergent framework.
- Hear personal firsthand accounts of both struggles with and recovery from eating disorders, addiction, and other unhealthy coping mechanisms in an effort to seek control of a body that feels foreign.
We hope this conversation will offer more depth and understanding of the neurodivergent experience and disordered eating in supporting healing and empowerment.
More about Livia Sara:
Livia is an autism advocate and eating disorder survivor who now helps others overcome their own mental barriers through her courses, coaching programs, and books. She is the creator behind the blog livlabelfree.com and the host of The Liv Label Free Podcast. Livia is a lifelong learner who loves listening to audiobooks, going on walks, and reading the latest science on all things neurodiversity and eating disorders!
- Website: livlabelfree.com
- Books Website: livlabelfreebooks.com
- Instagram: instagram.com/livlabelfree
- Podcast: livlabelfree.com/podcasts/liv-label-free-autism-and-eating-disorder-recovery
Article and infographic collaboration between Liv and Dr. Neff:
- Anorexia vs. ARFID Venn Diagram: neurodivergentinsights.com/misdiagnosis-monday/anorexia-and-arfid
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Transcript
PATRICK CASALE: Hey, everyone. You are listening to the Divergent Conversations podcast. We are two neurodivergent mental health professionals in a neurotypical world. I'm Patrick Casale.
MEGAN NEFF: And I’m Dr. Neff.
PATRICK CASALE: And during these episodes, we do talk about sensitive subjects, mental health, and there are some conversations that can certainly feel a bit overwhelming. So, we do just want to use that disclosure and disclaimer before jumping in. And thanks for listening.
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MEGAN NEFF: Okay, Liv, Patrick and I, we are so excited to have you on today. This topic around eating disorders, anorexia, ARFID, has been coming up a lot in the neurodivergent space which I'm so thankful that we're finally getting some good awareness around this.
So, I guess I'll share a little bit of context for how I know you. And then I'll let you introduce yourself if there's key context or identities I've missed.
So, you and I, I think we’ve followed each other's work for a while on Instagram. And then you reached out when your book Rainbow Girl came out.
LIVIA SARA: Yeah.
MEGAN NEFF: And I finally got around to reading it once you released the audible version. And I am so grateful that you've put this out in the world.
You know, we had Tiffy Hammond on a few months back who talks a lot about the power of storytelling as advocacy. And when I was reading your book I learned so much, but it wasn't like an education guide. Like, you weren't setting out to like, “Let me educate you about all these things.” You're sharing your story of being an undiagnosed autistic person navigating missatuned eating disorder treatments.
I really wish every mental health provider would read your book because I think these things do get misunderstood so frequently.
So, first of all, just thank you for putting your story out there. Thank you for being here. I guess that wasn't much of an intro. Are there other, like, core identities or parts of who you are that you'd like to share with our listeners?
LIVIA SARA: Well, first of all, I just want to say thank you for those incredibly kind words. I mean, the power of storytelling, that's part of you know why I wrote my book because, you know, as human for generations that is how we pass down information is through stories. And especially, through stories that have complex problems because I always talk with my clients about, you know, they talk about the shame and the blame almost that comes from having had trauma, you know? Growing up and having faced all these hardships and saying like, “You know, what did I do to deserve this?” Blah, blah, blah.
But I talk about how it's, you know, the stories and the traumas, and the difficulties that we face that mold us into who we are.
And I often give the example of, you know, like, I could say that a guy wakes up in the morning, makes his coffee, reads a book, spends the whole day like walking outside, and then going to bed. And then I say, you know, technically that's a story. But it's not a story anyone would want to read because I'm like, where’s the problem? Where’s the grenade that falls on his house and he needs to escape from, you know?
So, yeah, kind of coming back to my story, and Rainbow Girl, and eating disorders, and autism, you know? Growing up, I always knew I was different. And in a way, the eating disorder was a way for me to hold on to something tangible, something that I knew I could always trust and rely on in a world that felt utterly untrustworthy and unreliable. And there were these rules that I didn't know. You know, people my age, the other girls in my class, they were so different from me. And I've always identified as a girl, she/her pronouns.
But you know, I didn't like playing with dolls, I didn't like imitating the doll voices I talk about in my book, you know? I didn't like gossiping. It felt fairly immoral and incorrect to talk about people behind their back. But that was seemingly, you know, what you did at that age.
So, anyways, you know, when I was 11, 12, we started learning about health and nutrition in school. And it was like this existential purpose just like landed in my lap. Because I was like, “I don't know why I'm here.” Like, I was always asking those, you know, what's the purpose of life questions? Ever since I was little.
And when we started learning about health and nutrition, my little autistic mind like latched on to that of like, if I'm this perfect, healthy eater, you know, then I'm doing life “Correct.” I can't be wrong. I can't be wrong in this world. I can't be broken. I won't need to be fixed if, you know, I make sure that I do this thing so well.
And for me, that quickly spiraled into, you know, weight loss, obviously, falling off the growth curve, being diagnosed with anorexia and depression shortly thereafter. And the diagnosis just always and still does, it was never the correct diagnosis, in my opinion. And then people [CROSSTALK 00:07:38]-
MEGAN NEFF: Can I ask?
LIVIA SARA: Yeah, go ahead.
MEGAN NEFF: Can I pause you to like, I kind of want to dig a well in this topic that we’re in right now.
LIVIA SARA: Yeah.
MEGAN NEFF: And then.
LIVIA SARA: Yeah, I love it.
MEGAN NEFF: I’m totally disrupting your flow. But I [CROSSTALK 00:07:48]-
LIVIA SARA: Well, I know that I love it.
MEGAN NEFF: Because this was the part of the book that I had some aha moments was around when you learned in health class these are good foods and these are bad foods. And then like, you talk a lot about Ensure because they kept trying to get you to drink Ensure and you would read the ingredients and you'd be like, “No, there's corn syrup in here. I am not drinking that.”
And how that was so misunderstood. It was seen as like you're not wanting calories versus like, no this is a bad food.
And I think, yeah, you highlight that so well how it was about having something with certainty of like this means I'm good. And I get that feedback loop of I'm making good choices, I am good. For me, so also, like socialized as a girl, I do identify more gender expansively gender. But I, like social communication and girls was so confusing to me. For me, it was religion. That was my like, I learned the rules. And if I could follow strictly, I had a feedback loop of I am good. I am okay. And so I just think this, like, looking for some sort of system, whether it's good/bad food, religion, I think a lot of us fall into this. And it gets so misunderstood if we don't see the autism.
LIVIA SARA: Right. It's looking for the how to because we don't know how to. But then it's of course, does anyone really know how to in this world? But I'm not going to go into that rabbit hole.
But yeah, thank you for sharing that. I mean, I read your book recently, listened to the audio version. But obviously, it's more of like a self-help. I didn't know that about you and your religion. But I'd love to talk about that on my podcast in the future.
MEGAN NEFF: Okay. Yes, we could talk about that.
Patrick, did you have any, like, system in adolescence that was your feedback loop of like, I'm a decent human if I follow these rules?
PATRICK CASALE: You know I don't remember having a specific system for am I a decent human. But I'm thinking, specifically, and this is a complete divergent thought of how similar eating disorders and addictions are. And how that compulsion, and that obsession, and how you kind of center your entire life experience around that existence, it brings up a lot of my gambling addiction and the experiences that come alongside that too, so…
LIVIA SARA: Oh, totally I'm so glad you mentioned that because, I mean, I believe, especially, with [INDISCERNIBLE 00:10:28] feedback loop, it's like constantly, and then if you add ADHD, and like dopamine into that it's like chasing the next high, chasing the next high, but then you need more high every time again. There’s this, you know, phase in the eating disorder’s patients, if you give the eating disorder an inch it'll take a mile. And it'll like keep taking more miles. And I feel like that's the same with, like, every addiction is like no pun intended, you get a taste of what it feels like to, you know, be strict and be praised for being so disciplined.
I remember, you know, going for runs as an 11-year-old now, and I would just be miles, not miles, obviously, not literally, but I would be running ahead of my parents, and people walking dogs being like, “Wow, she's so disciplined.”
And you know, for me, I was like, “Oh, like, I need to go faster, I need to keep doing this.” So, I like secretly started training and like, wanted to run a marathon at some point. And it was just this feeling like, again, this euphoria of this is this one thing I know I can be good at.
And something about eating disorders that not a lot of people talk about, but I know that like, the feeling superior is like a common autistic traits that also I feel like isn't talked about a lot. But like when you have an eating disorder, and when you like, make food for other people, and like, watch them eat it, and you have, like, no remorse. And you were like, “Oh, like, I'm so disciplined, like, I'm not going to eat that.” You feel so much better than everyone else. Because, yeah, you feel you feel superior.
And that high, almost, that sensation of I am so much better than everyone else is a huge part of the reason I think why it's so hard to let go not of the eating disorder, but to let go of the identity of an eating disorder because when you identify as someone who has purpose and feels better and feels higher, almost in some way, like, why would you ever let that go to be normal kind of thing. But of course there’s a lot of nuances to that.
MEGAN NEFF: I love that. I love that you're tapping into this identity piece. I was even thinking about that when you were talking about the runner. Like, that becomes an identity and especially, those of us, like who mask, right? One of the downsides of that is a diffuse social identity because I think a lot of us are looking for our identity.
I've often, I noticed until I discovered I was autistic, I was always looking to locate my identity through outside things. So, like, when I became a vegan, I was a really intense vegan, and it was a huge part of my identity.
LIVIA SARA: I didn’t know that.
MEGAN NEFF: Yeah, in my 20s I was a vegan. And it was so hard to release it because it was like, “Oh, it's my identity.”
Same thing with religion. Like, I was just like hyper religious. But like it was a hard part of my identity to release. And it's partly because A, I had so much self-consciousness about myself that I needed to find an external identity. But that superiority, that's really interesting because I think a lot of us socially, like socially I always feel really inferior. And so I've also, like, whether it's through academia, or these other sources, looked for things that will give me a footing of feeling superior. And I don't like that about myself. But like, if I'm being honest, it's absolutely there. It's still there.
LIVIA SARA: Oh, I think we all have that to some capacity.
MEGAN NEFF: Yeah, and I appreciate you naming it. It's not like the most comfortable thing to name of like, it feels good to feel superior.
PATRICK CASALE: Well-
LIVIA SARA: Yeah, yeah. And I think it's important to talk about because, you know, it's taboo. And that's why people don't talk about it. But I think it is so important to name that because I want people listening to this who feel that at times, to not feel like they're a bad person for thinking that.
MEGAN NEFF: I think it's a really normal psychological defense. Whenever I'm talking with someone, and it gets awkward, and it's like, I mean, you all listen to the podcast, it's usually my fault. Then I will start in my head listing my accomplishments like, “Oh, well, I run a business.” And it is. I'm protecting my ego. And it's shitty. Like, because I'm trying to equalize the playing field because I'm feeling like right now, in this moment, I feel really incompetent socially. So, in my head, if I can boost myself up, then it like gives me some protection or some psychological defense.
So, yeah, I imagine this is a defense that comes up for a lot of us and it is really uncomfortable to talk about. Thank you.
PATRICK CASALE: Yeah. I think it’s important to-
LIVIA SARA: Oh, thank you to, too.
PATRICK CASALE: ...talk about, but if we think about this experience of being autistic and not knowing, especially, as a child or a teenager, which a lot of us who have been diagnosed later in life, we didn't know this about ourselves. What you said, Liv, I felt different. I felt like I didn't belong. I felt like I couldn't connect. We hear these things all the time. I felt like I just never fully arrived. I didn't know how to people. I didn't know how to actually experience A, B, C. We're always going to try to look for that footing and to say like, how can I propel myself forward to ensure that I feel like I can have a place where I find my footing or anchor into? And I think that makes a lot of sense.
And then circling back to eating disorders and addiction, we're talking about control, we're talking about rigidity, we're talking about a lot of the things that feel comfortable for us, right? Like, our systems are craving that stuff. And that makes a lot of sense why we default into these, I'm trying to think of my wording, mechanisms that [CROSSTALK 00:16:14]-
MEGAN NEFF: Unhelpful coping?
PATRICK CASALE: That's what I was looking for. I was trying to [CROSSTALK 00:16:18]-
LIVIA SARA: I like the mechanism too, though. I was like that's such an adaptive brain wound production there.
PATRICK CASALE: It makes sense why we are seeking that out. Because, again, it's like, if we can have that control, that rigidity, and that structure in that place of feeling like, okay, I know that in the confines of this I exist in this and I can control this environment, it makes life a hell of a lot more manageable and a lot more comfortable in those moments.
LIVIA SARA: Yes, yeah, that word, the confines, I often used to have constraints. I know, like, and I feel like when we create a box, we know that as long as we're in that box, and we stay within the boundaries of that box we are safe. And that word safety is such an important word. Because I mean, that's what human survival evolved to, right?
MEGAN NEFF: And I think that's kind of a through line in your story was you were seeking safety. And I think the way family and health care providers saw your resistance to eating disorder interventions was as resistance and it got really misinterpreted. The behaviors you were doing, which were seeking safety were getting misinterpreted as resistance to treatment.
LIVIA SARA: Yeah, totally, totally. Yeah. And I think demand avoidance definitely played into that as well. And just this was-
MEGAN NEFF: I was curious about that because I heard a lot of that. Like, when you would be-
LIVIA SARA: Yeah, my autonomy, yeah.
MEGAN NEFF: Yeah, when you'd like secretly be exercising. I was like, okay, is that a demand avoided thing? Because that, yeah, so can we say more about that?
LIVIA SARA: Totally, yeah. What the secret exercise, I mean, when I think back to feeling things now, and I just like, I cannot help just laugh because I'm like, I would like… I think I talk about this in the book but I would like stretch out. Like, I would pretend I was taking a shower. I would, like, turn the shower on so that they couldn't hear my like, deep breathing. And then I would like, put all like, my hands and my feet, like, in the corners of like the bathtub and just do push-ups so that they couldn't look under the door and like see me doing push-ups because I actually got caught ones doing push-ups in the bathroom, and they like saw the shadows under the door. So, I was like, “Okay, I need to come up with something else.”
And I would do that. And I would, you know, do planks while I was pretending to be sleeping. And in the middle of the night, I would get up, and do sit ups, and do burpees, and jumping jacks at all the secret exercise.
And I hated it. You know, it wasn't that I felt like I need to do this to burn off what we had for dinner or I need to compensate. It was just, I was not allowed to exercise. So, I was like, you're going to tell me I'm not allowed? Well, I'm going to show you, I'm going to prove to you even though they didn't know it was more proving to myself, you know? I'm going to prove to myself that I have autonomy, that no one can take my choices away from me.
So, I think in that sense, you know, the lack of awareness around neurodiversity, eating disorders, specifically, what the demand avoidance component, I mean, you as a clinician, or as a professional, or a provider can be inflicting so much harm on an individual and their ability to heal from an eating disorder by not understanding that stripping their autonomy away from them is not going to help them.
MEGAN NEFF: Yeah, yeah. I mean, when I think about anorexia, especially, interventions for anorexia, and particularly, when they're still level of hospitalization. I mean, there's so much loss of autonomy.
LIVIA SARA: Oh, my God, like I know so many people that, you know, have been held down, have bound down to beds, tubes stuffed down their throat, you know? It's actually in Holland, there was this one girl who was actually tied to a bed for over three years, I believe because she was suicidal. And she said, you know, “As soon as you release me, basically, I'm going to kill myself.”
And I'm just thinking, like, of course you’re going to kill yourself if you’re tied down to a bed for three years with tube fed. Like, with no sense of choice.
So, yeah. I don't know about in the US because the Netherlands is very small. And I just know that a lot of the patients I was in treatment with there ended up, like, having these traumatic force feed experiences. So, that's kind of why I know about it.
But in Holland there’s a lot of like, legal, like, jurisdictional, I don't know the terminology here. But, you know, that even like the children get, like, taken away from the parents because the parent is not forcing them into treatment, so then the jury or the judge can decide like, “This whole family is incompetent, basically. We're going to let the psychiatrists for the hospitals, like, take guardianship over this kid.” Which ends up, you know, causing them to be forfeited and tied to bed. This ridiculous stuff that only causes more trauma.
And the more trauma, the more likely they are to cling tightly to the eating disorder. Like, it doesn't make any sense. But because no one knows what to do it's like, as long as we keep them alive. But I'm like, there's a difference between being alive and surviving, like, at the hands of someone else's coercion, basically.
MEGAN NEFF: Yeah, yeah, absolutely. And I want to be mindful that I'm not like, I have a question, I want to ask. As I'm sitting with this I'm like, “Is this me trying to move away from the discomfort of everything you just named?” Because everything you just named is really hard to take in and [CROSSTALK 00:22:10]-
LIVIA SARA: We can, though.
MEGAN NEFF: Well, no, I'm naming the complexity that I'm sitting with. And because I do think it's important to hold space for just how traumatizing a lot of the interventions and the systems are, especially, for autistic people.
The question I had was you did eventually find a place that supported you and supported your autonomy where you were able to… I don’t know, is recover, is that a word? Is that how you would describe it? Or heal? Or-
LIVIA SARA: Yeah. It's interesting. I actually was on a weekend, like, [INDISCERNIBLE 00:22:50] where we talked about the word. Yeah, I’ve heard that too. It sounds like a bird in a cage or something. I thought it was like a parrot. Okay, I'm sorry. I'm sorry.
What were we talking about? I completely lost my…
MEGAN NEFF: Oh, I was asking about your terminology of recovering or healing. But you could also just start talking about the house. I want to call it a house. I know that's not the name of it.
LIVIA SARA: No, it is called Carolina House. But I think it's important. I think it actually is important, because you said you did find a place that gives you autonomy, no. So, I-
MEGAN NEFF: Okay.
LIVIA SARA: I probably did a bad job illustrating that in the book, in retrospect because it kind of seems like that was like the thing that saved me.
But looking back, you know, that treatment center was no different than any of the previous treatment centers I had been in. The difference was me willingly saying, “I'm sure undoing. You know, you can give me foods I don't like, you can do this, you can do that. I know it's going to be so, so hard. But this time, I'm not going to fight back. This time I'm going to let you let you basically save me.” Which, in essence, was I'm going to allow you to guide me to save myself. But if I would have been forced-
MEGAN NEFF: It was your choice?
LIVIA SARA: Yeah. And that was the key difference. Because if I was placed there, you know, without wanting to, it would have been the same thing as every other place. And looking back, you know, I didn't know I was autistic at the time still. So, there were a lot of things that still kind of haunt me today that I need to go into therapy about trauma that I actually endured while in that treatment, invalidation, you know, calling autistic traits OCD behaviors. You know, when I needed to, like, microwave my food, because it needed to be like the Goldilocks temperature, it was, you know, “You're just trying to delay eating. Your eating disorder’s in the room with us.” Like, just this gas lighting, basically.
But I honestly don't know how I did it, thinking back now, and kind of bringing back those memories. But I was so determined to get better for my eating disorder and to stop being a slave to the addiction, that I was like, “You know, you can gaslight me all you want.” I didn't know the trauma at the time, obviously, “You can invalidate me all you want. But that's not going to stop me.”
And I think that that discipline, and willpower, and just perseverance was my autistic self emerging. Because I think, in part, you know, the reason why I was able to sustain an eating disorder for so long was because I was like, I have decided to do this.
And I think, as you both know, like when we decide to do something, like we have decided we are not going to stop until we've achieved whatever we want to achieve. And when it came to recovery or healing, or I actually prefer the term discovery because I think more than recovering from an eating disorder the journey is about discovering who you really all. And for me, part of that was, you know, discovering I'm autistic.
The moment I decided, you know, I'm committed to getting better, I'm committed to discovering who I am without the mask of an eating disorder I was like, “I'm going to stop at nothing until I found freedom.” So, I think that kind of answers what was a question [CROSSTALK 00:26:36]-
MEGAN NEFF: Yeah, it was a vague question. At what point in your journey and your process did you discover your autism?
LIVIA SARA: Actually, through my first coaching client. So, I thought, you know, when I was perceived to be recovered, you know, from my eating disorder, again, it's just such an abstract term because everyone defines being recovered differently. But I believed, you know, I'm free. Like, I wasn't engaging in what was labeled as eating disorder behaviors anymore, but I still had some things around food that I still have because these are autistic traits, completely unrelated to the eating disorder. But they were things that I knew inherently in my heart like, I know, these aren't related to an eating disorder because I have been this way since I was a little kid. So, I was like, I'm recovered, you know? And I wanted to help other people. Other people, specifically, who, you know, had been told to start treatment like I was, been told you're manipulative, you're too complex, you’re hopeless, you just kind of to manage this forever kind of thing.
And at this time, I had a blog, and I was on Instagram, and sharing my story. And I knew that a lot of people wanted help, actually, from me. Like, people had been messaging me, like, “Can I talk to you?” And I was like, “Okay, I'm going to make something out of this.” Because I knew I couldn't do the typical school path, like no way. So, I was like, “I'm going to launch my own coaching business.”
My very first client was autistic. And she was telling me how she resonated with this, like, too complex label because she was autistic and had an anorexia. And all the professionals, basically, said, like, “Yeah, like, we cannot disentangle this. So, like, you have to fix your autism first before you can fix your eating disorder.”
And, like, it kind of went that way of like, and actually, in the Netherlands, saying someone who's autistic is actually like an insult. But that's a side tangent. But she was basically telling me about her, like, eating disorder, and her childhood and growing up. And I was like, like, “Whoa, like, this is me. Like, you were telling me, me.”
And so, obviously, I was like, “I need to learn more about autism.” So, I like read all the books. And specifically, the book [INDISCERNIBLE 00:29:02] by Woody Simone. I mean, I read the first page of that book. And I think I read the entire book in like a few hours in one afternoon. And in that moment, I was like, “I know I'm autistic and no one can tell me otherwise.” And the rest is kind of history.
But ever since learning about that, I was able to, upon reflection, see how all these autistic traits, Woody Simone has a great graph in her book. I was like, if you mix this with food and exercise, you literally have created the ultimate recipe for an eating disorder. So, it all made sense to me.
And then as I started showing more about the intersection and my specific relationship with how autism manifests as an eating disorder, more and more feedback, more and more resonance, and I was like, I have hit on something here that is huge.
And I'm so grateful that I leaned into that hunch because now, like, being able to help so many autistic people, and people will even come to me, who will now all end up being diagnosed autistic I'm like, “This is my true purpose in life and it's so fulfilling.”
PATRICK CASALE: But that’s a great share right there. And it's amazing when you have that epiphany because I think we are all searching for that epiphany moment so often. But I'm really glad that you named something that I want to circle back to, which is the too complex or highly complex cases because this happens in the addiction field as well, where we would try to make referral after referral for someone who was autistic, who also maybe was struggling with substance use, or alcohol, or whatever. And we were constantly rejected for referrals because too complex can't disentangle. I like that word that you just used, the inability to really show up and treat both at the same time, or the lack of knowledge of just co-occurring, or the lack of knowledge of autism in general. So, it just further complicates someone who really wants that support and that help.
And circling back even further, to you saying I just had this moment where I was like, I'm going to surrender to this. That is kind of how my gambling addiction went. Like, 10 years of just sure hell and then one day, I was just like, wave the white flag. Like I have to, like you said, once my brain was committed to really figuring that part of my life out I was so so committed. And I thank my autistic self for that because I think otherwise I don't really know where that would have gone honestly.
LIVIA SARA: Yeah, I love that you say like you thank you autistic self because kind of circles back to what I was saying. I think it was my autistic perseverance and like commitment to whatever it was that allowed me to be like, “I'm stopping at nothing until I'm free from this.”
So, Megan, I'm, I'm curious if you have any kind of similar experience?
MEGAN NEFF: Yeah, I do. And I’ve been sitting on it. And I'm like, “Do I share this?”
So, I started self harming. I started cutting when I was 13, or 14. And it was a pretty significant addiction. And once my parents discovered how bad it was, I was already in therapy, but they bumped up to like twice weekly therapy.
And there was at times talk of inpatient that was more due to suicidality. But I mean, yeah, my mental health was really bad. And a lot of the ways that came out was through cutting.
And at one point, again, once they realized how significant it was, they started doing body checks. And I started getting really clever. And it was that same autonomy thing. But I did reach a point, and it's interesting, like, I don't know whether this would be considered neurodivergent affirming, but I actually I’m really glad my parents made this decision. They said, “You cannot get your license to drive until this gets under control.”
And that was my surrender moment of like, “Okay.” But I did have to choose because I was doing a lot of sneaky self-harming. But at some point faced with that decision, that was my moment of surrender.
And so I'm really resonating with this idea of there being a surrender moment. And it didn't mean that I like never relapsed after that. But it did mean that I was finally, like, okay, I will actually, like try to stop this behavior. So, yeah, I am very much relating to the surrender piece.
LIVIA SARA: Yeah, and what you said about, you know, your parents, they still gave you a decision. They said, like, you can either go get your license or you can continue on this path. And so for you, it was still like, okay, I get to choose. It wasn't like, you know, we're putting you in a ward right now, like, so that you can't do this.
So, I think having that autonomy in some sense because it's important to mention that by the time you know that I decided, like, I'm going to surrender to this, my whole family was like, “You know Livia, we can't save you. Like, we're going to support you, we're going to support you in whatever way we can. We're going to show you unconditional love. But we're not going to force you on to anything anymore. Like, we surrender.”
We surrender to you, basically, was my parent’s attitude. And when I finally felt that, when I was like, “Oh, my God, I finally, like, I can choose now.” That's when I did choose.
MEGAN NEFF: Yeah, yeah.
PATRICK CASALE: It’s so fascinating to me because that's almost verbatim like my experience as well. Like, with my dad, enabling, enabling, enabling. And then, finally, he was just like, “I can't save you from yourself. Like, you're going to have to make this decision.”
And it's weird how these, like, lightbulb moments come up for us when we're doing such destructive behaviors to ourselves. And I don't know about you, Livia, but for me, I knew how damaging this was the entire time. Like, gambling was unbelievably disruptive. I knew this. And I think that's what makes it even harder because emotionally you're just shaming the shit out of yourself doing it because you're like, “I can see how much destruction I'm causing and I cannot stop.”
LIVIA SARA: Yeah. Oh, my God. Totally, totally, totally. And I think that's why I never resonated with that, like, stereotypical, like, “Oh, someone who has anorexia looks in the mirror and sees themselves as fat.”
Because I would look in the mirror and I would be like, “Oh my God, like, I'm looking at a skeleton like.” And I know that like, a lot of times that's a huge stigma around eating disorders is that, like, you have to be skeletal to have an eating disorder, which is totally not true. Like, you can have any size, or weight, or shape. But like, I knew like that I looked like a corpse, basically. Like, people whenever I went outside, I was afraid to go outside because I knew that people would like stare me up and down. And I knew that, like, what I was doing was like, this is probably not the right language, like, it was crazy. And like I knew, like, I am killing myself like right now. Like, I'm destructing myself yet the control that I feel from this outweighs any kind of perception of how damaging it is.
It's all, again, that comes back to that ego piece of like, I know that what I'm doing is wrong and damaging but right now it's more important to me that I maintain this identity of who I've shaped myself to be because if I let go of this identity, well then what's left of me? Like, well, then who am I? And that's perhaps, like, the most challenging question of like the human mind is like, who am I without external identities?
MEGAN NEFF: I feel like you captured like, I have the feeling right now. Like, I feel like you captured the trap feeling so well of like, when I'm stuck in loops that I know are so destructive to me, but I also feel so pulled by the compulsions. And, yeah, I just feel trapped because it's, like, not able to release this thing that you know is causing harm. And I think that gets back to, like, how this is such a lot of these behaviors originate from this drive for safety and so even though we rationally know this is very unsafe for me, it is so hard to release some of these loops.
LIVIA SARA: Yeah, this trapped word is so accurate too also just in the context of, you know, fight or flight mode, is that for me as a very anxiety prone person, I'm always in fight or flight mode. And it's not that I'm in shutdown mode.
And in a sense, like the eating disorder and the compulsive exercise, also, along with the autonomy piece it was a way for me to release this like mobilized energy that was constantly building up inside of me. And that building up was honestly heightened by the taking away the autonomy. I was so mad. I was so angry. I was like, “How can you be doing this to me? Don't you see that the treatment is not helping?”
And I think being autistic or neurodivergent, especially, with the ADHD component in a world that tries to contain us and basically, “Play small like, don't do anything crazy, don't do anything outside of the box, like just conform, just be like everyone else.” It makes us have more of that fight or flight sympathetic energy, basically. And wanting to, basically, escape and like tap into who you know you can be, which is so much greater in the physical body. I like sound weird, but like, knowing of all the things you can contribute to society, and do, and then feeling like you are trapped in this body that can be so almost unbearable to deal with.
And I think if you add, like gender dysphoria into that because like, there's a lot of overlap as we know between neurodiversity, eating disorders, and the LGBTQIA+ community, or I don't know if there's more letters, nouns, but you know, that gender spectrum, when that plays into it, and you feel like you aren't in a body that, like, belongs to you, either like, I guess, yeah, that what I'm trying to say is that that trapped feeling, like if anyone listening is feeling that, like, know that you are not alone because I think all of us, to some extent, do feel trapped in this like physical thing we call our bodies.
But what really helped me almost except being in this body is the idea that like our bodies are not actually our possessions. And what I mean by that is like, if I planted an apple tree in my backyard, like it would be on “my property” but it wouldn't actually be my tree, you know? It would be the tree of the planet. And it like makes up the planet matter and that's kind of how I see our bodies. Like, just like an ecosystem has all these different elements that like work together. Like, we work together with the trees, right? Because they give us oxygen and like when we excrete urine, it goes back into the ground, and provides things, you know, and flies eat all the excretions, right?
Like, so in that sense that has really helped me and a lot of my clients, like, except, especially, with like body dysmorphia, that like just seeing the body is not something that is like ours and that needs to be controlled, but more something that is some like an organic part of the planet and the world.
And I know he kind of went off on a tangent here. But I felt like that was like a natural path to go.
MEGAN NEFF: This interesting. Yeah. I know. And like an ecological view of the body and how that could be empowering. I'm actually really like, I've not had that idea before. And I'm really drawn to this idea.
So, in Self-Care for Autistic People, one thing I say, and people often when they reach out they're like, “This line resonated so much.” I say, I think it's like in the intro, the hardest part about being autistic for me is not the social communication stuff, it's my relationship to my body. And I think that unless you have a deep understanding of autism, like, people just miss that.
So, this idea of seeing the body from an ecological interconnected framework versus a possessive framework is so deeply interesting to me.
LIVIA SARA: I'm so glad to hear that. And yeah, coming back to your book, I remember when I just started listening and I heard you say that the hardest part is being in my body. I was like, “Yes, yes, yes.”
MEGAN NEFF: Yeah, I talk to so many people where it's like, why do we have these bodies? Why do we have these things that require maintenance, and work, and that are hard to be in?
LIVIA SARA: Yeah, yeah, yeah. Even like this morning I was like, I woke up and I was like, “Oh, God, I need to wash my hair.”
MEGAN NEFF: No.
LIVIA SARA: Yeah.
MEGAN NEFF: You look contemplative, Patrick. I can't tell if that is a… I’m…
PATRICK CASALE: Yeah, I'm just thinking about what we're talking about. I mean, I often feel so. Like, I've said this so many times on this podcast, and I feel like it's often torturous to me inside of my body, and how difficult it is to communicate that to other people who don't get it. So, I'm just thinking about the fact that all three of us are sitting here like, yeah, this is a universal truth, [INDISCERNIBLE 00:44:06] to be true.
But it is just so challenging and uncomfortable. So, I like the rebrand on different perspectives almost here.
LIVIA SARA: Yeah. And it actually reminds me of I think it was the first episode of your, not the first episode of your podcast, but the first one I listened to, you two were talking about sleep. And I don't know which one of you it was because it was like a while ago, one of you said like, “Oh, like for me to sleep throughout the night is like the most weird occurrence ever.”
And that sensitively feeling trapped in my body is honestly most prominent like when I am trying to go to sleep and I can't. And I'm like, “Why can't you just let me rest?” And it's so frustrating because it's in those moments that I like want to, like, dream, and I want to like mentally transcend into like an alternate reality but I can't because I'm here in this body that won't do what I want it to do.
PATRICK CASALE: Yeah.
MEGAN NEFF: I'm here in this body that won't do what I want it to do. Yeah, yeah.
PATRICK CASALE: Yeah, zero out ten would not [INDISCERNIBLE 00:45:19] to this. No, I get that so much. Like, just that night where you're just so aware of that discomfort that just complete and utter need to shut down and fall asleep. And you're so exhausted mentally and physically, and it just won't. It doesn't happen and you become even more aware of how uncomfortable you are in all the different ways. So, it’s a nightly occurrence.
LIVIA SARA: Yeah, yeah, well, even daily, right? Like, how often do any of you guys, like, try to sit down in a chair and be like, “Nope, that's not a comfortable position.” And getting up sitting somewhere else? “No, not comfortable with this?” Like, it’s so-
MEGAN NEFF: Oh, my gosh, yes. Like-
LIVIA SARA: It's so-
MEGAN NEFF: I call it the Goldilocks of stimulus. You said Goldilocks ruler of like, it's like, or getting dressed. It's like, nope, that doesn't feel right today, nope, this doesn't… And like it's just, oh, it's so fuzzy to find, yeah, the ideal Goldilocks of, like, just right.
LIVIA SARA: Yeah, yeah, I actually, the other day because I needed new glasses. And I went to the store to get new glasses. And the woman that, like, greeted me, like, she had like bright orange hair. And I got this like vibe from her. I was like 99% she's autistic. But I didn't want to say anything. So, I just, like, started talking to her. And we were talking about the glasses. I’m like, obviously, needy with like these two parents. And I was like, “Yep, I don't like that one and I don't like that one. Do you have like an in-between?” And she goes, “Oh, the Goldilocks problem.”
And I was like, “I love that you said Goldilocks because I always talk about that in like, terms of autism and getting things just right like hinting. Like, yeah, I'm autistic.” And she goes, “Oh my gosh, me too.” And I was like, “Yeah, I've known that for like the past 20 minutes.”
And it was so funny because I think, you know, like when you discover this about yourself, and you just start seeing it in other people too that you meet, it just like finds you in a way that like you can't describe. And like the you just form these connections that I really have been able to form with non-autistic or non-neurodivergent people. And yeah, I just think it's so unique.
And another reason why I do see being neurodivergent as a gift is that it's a way for you to connect with other humans on like a deeper level because Patrick, it’s like the reason you just get each other. Like, there's no other way than then to say it like you just get each other. Like, there's no words even officially.
MEGAN NEFF: Which is such a rare experience for us because most of us have been navigating, like the spaces we’re in, we're a neurominority in the spaces we're in. So, all of a sudden to be with people where it's like it clicks, it's such a powerful feeling. And that to me has been such a gift of discovery over the last three years is finding connections and community where our communication like, because it's a culture, right? Like, we just click and connect. And even the way we even the way we show empathy through story swapping, like none of us are like, “Oh, my gosh, you’re making it about you?” Because we get it, like, yeah, it's so expansive and freeing to not feel like you have to explain yourself every step of the way and just to let connections flow.
LIVIA SARA: Right, right, exactly.
PATRICK CASALE: A lot of my friends are not happy with my gift of acknowledging and understanding when they are autistic a year before they are ready to know that they are autistic. But that’s come up a lot recently where-
LIVIA SARA: Nice-
PATRICK CASALE: …they’re like, “You knew this a year ago?” I was like, “Yes, I've known this the entire time but you were not ready to hear that. So, here we are.” But [CROSSTALK 00:49:07]-
LIVIA SARA: Yeah, in my book I call it the autistic fixed sense.
PATRICK CASALE: Yeah, it feels that way, for sure. It feels that way for sure. I'm going to be the one to wrangle us back in today because I know a lot of our listeners want to listen to both of you really talk about ARFID and the three different types. And I'm just curious if we want to diverge there or where we want to get?
LIVIA SARA: Yeah, sure. Megan, do you have time?
MEGAN NEFF: Yeah, I've got, yeah, about like 15 minutes here. So, yeah, I've got time. Do you want to take this question on ARFID?
Oh, first of all, and forgive me if you talked about this in the book, but I'm assuming you also had ARFID or have ARFID. Do have ARFID?
LIVIA SARA: No, well, that's kind of, yeah, where semantics and the whole label fleet comes in is because I don't believe that I had an eating disorder that is even in the DSM or that is even diagnosable at this point in time. So, my actually next book that I plan on writing is going to be, basically, about a proposed model of eating adaptations, as I like to call them. Basically, how eating disorders manifests differently in autistic people and why we can't ever box or label them as ARFID or anywhere of what's currently existing in the DSM because, like, I still don't resonate with any. If you don't resonate with ARFID, like, I have done extensive research on all the eating disorders out there and I'm like, nope, nope, nope, nope, nope, nope. None of it is it. So, yeah, to answer your question.
MEGAN NEFF: Oh, my gosh. No, I love that. I actually didn't know where the label free came from. And when you described it, it's like that makes so much sense. And I was curious, I actually didn't know, it's interesting, I was like, this is interesting. It bothered me I couldn't put you in a box. I didn't know like, does Liv identify like was anorexia misdiagnosis. Was it? So, that's so interesting. And I cannot wait to read that book because that makes so much sense to me.
Okay. So, you don't personally identify with the ARFID label, but I imagine you resonate with some of the experiences.
LIVIA SARA: Yes.
MEGAN NEFF: Do you want to walk us through the three types. I know you and I just made an infographic on it.
LIVIA SARA: Yeah. And I know, actually, that the whole label thing came up during the infographic. And when you were like, “Maybe this is like a different flavor of anorexia.” I remember you called it. And I loved that. But that's kind of how this upcoming book will be about. Like, all these different, like, eating adaptations because that's what I ultimately believe in eating disorder is like. And diving into ARFID here, especially, you know, because first of all, we can start with like fuel-based ARFID is one of the subtypes. And this is, you know, having significant fuel of negative consequences associated with eating.
So, maybe choking, vomiting, experiencing GI issues which I think, like, every autistic person should pretty much attest to. And just like this overwhelming feeling of eatables have consequences can cause avoidance of certain foods to food groups, which I mean can lead to a very limited diet.
And I think a lot of the time, you know, just taking this subtype of ARFID as an example, it's, you know, [INDISCERNIBLE 00:52:42] they're so picky or like they’re problematic. But I'm like, if they've had, like, negative traumatic experiences with food in the past, like for them to now have fear around eating, like, that's an adaptation. Like, that is only like a normal biological response to a certain event.
And I think when we can see all eating disorders in this light is like someone's adapted their behavior, whether it be, you know, to fit in a smaller body because they've been conditioned to believe that’s socially acceptable, this is an adaptation.
And again, like, seeing this perspective, having this perspective invites compassion, and opens the doors to empower the individual to adapt further to live a life in which they're free. So, you want to [INDISCERNIBLE 00:53:36]?
MEGAN NEFF: Yeah, yeah, I love how you frame that. And I think this gets missed unless you're coming at it from a neurodivergent affirming lens that the fear, I think it gets interpreted as like irrational. But the fear is actually quite rational because for a lot of us, like there's a lot of reasons a person might have, like you're mentioning because of GI stuff, or like with dyspraxia, like swallowing challenges, and that experience.
I mean, thinking about the sensory experience of vomiting, like for anyone that's unpleasant, but for someone with sensory sensitivities, so like, yes, I love how you're framing it as it's not necessarily an irrational response to their past food trauma experiences.
LIVIA SARA: Yeah, I mean, even the term irrational fear, I'm like, we cannot even begin to call feel rational, irrational because it takes place in our brain [INDISCERNIBLE 00:54:32]-
MEGAN NEFF: The irrational brain?
LIVIA SARA: So, how can we say it’s rational or irrational? Like, that’s like saying-
MEGAN NEFF: But it’s interesting.
LIVIA SARA: Yeah, like…
MEGAN NEFF: I like to talk have more proportion because this is where I do have some content around like, so anxiety is not in and of itself a disorder. But anxiety disorders do exist. And it's when the proportion gets off. And I think proportional anxiety, proportional fear, like stressor to stress response, I find that language helpful. But you're right, like rationality, like, the amygdala is not a rational, like, part of our brains.
LIVIA SARA: And we could argue that, like, anytime you have fear it's irrational response because your body's like unconsciously responding to the situation, which the body does not act without reason, which by definition means it's always rational. But then, again, semantics.
But speaking of like vomiting, and just essentially, the second subtype of ARFID that we can talk about is sensory-based ARFID. And, you know, I think it's important to recognize that, like, these three subtypes do not exist, like, by themselves. Like, there's a lot of overlap. Like someone can have sensory feel and more components like, and they can all overlap. So, again, it’s just why I hate the boxes because it's like, well, what if I also have this and that? It's like, which box do I fit in?
But anyways, sensory-based ARFID is typically categorized as, you know, having really strong evolutions to textures, tastes, colors, smells of foods, basically, all the sensory aspects of food and cooking, and mealtimes is just yeah, they are more impulsive to this, I guess. And people with sensory-based ARFID can just find it really challenging to tolerate, you know, a variety of foods, and a variety of textures and colors because it can be really overwhelming. Like, even just if you think about having like, five different colors of food on a plate. It's like, “Whoa, like this is way too much going on visually for me.”
And again, and it's like, okay, I'm just going to eat my peanut butter sandwich because this is brown, and this is brown, and it's the same color, and I can take it in, and it's always going to be the same brand because I always know what I'm going to get, and it's predictable.
And again, it’s seen as picky eating. But it's like if you're doing this to regulate yourself and to reduce your overstimulation, again, you have adopted. Your choices are a reflection of having adopted.
And then the third type of ARFID is called lack of interest ARFID. And this involves, you know, just genuinely not being interested in food, not having any motivation to eat which obviously, if you feel no dopamine from eating it’s like, why would you eat?
So, yeah, again, people with just, you know, lack of interest ARFID may not experience the feel of essentially components of the other ARFID types mentioned. But you know, they just may simply not want to eat or not have an appetite. And then there's also ARFID plus, which, Megan, do you want to tell us about that?
MEGAN NEFF: Yeah, so ARFID plus is essentially when you don't fit neatly into a category and you've got elements of all of them, which I think a lot of people with ARFID have aspects of all of them.
It's interesting, in my household I do have one child with like sensory dominant ARFID, and then another child with no interest dominant ARFID. But I definitely see elements of both. So, I have found the framework helpful because it's like I can understand what's happening.
The one about sensory I'll add is, I mean, eating is just such a high sensory experience. And I see this with kids a lot. Like, if your child is going to in person school, and they're not eating at school, that makes a lot of sense for me because like you're so overstimulated.
I remember when I was like working in public spaces I often won’t to eat during the day. And I just thought my appetite went away. But it's such a high sensory experience. And people often, I think, don't make that connection, necessarily, that if someone sensory demands, even if it's not food related are going up in other ways, their ability to eat is going to go way down. So, during like, life transitions, during just high sensory seasons, that's a time where, especially, that sensory ARFID is going to bump up quite a bit.
I know, for me, I don't identify as having ARFID, but even during big life transitions I rely on my safe foods. Like, I'll start eating the same meal, like, two or three times a day because that's how I'm taking care of my sensory system.
LIVIA SARA: Totally. And before you asked, you know, if I identified as having ARFID, and then I said, no, and then you said like, “So, you identify with components?” So, I definitely do with the sensory piece.
So, like I, and just eating around others and eating with other people, I cannot eat in front of other people, I cannot eat in social settings. You know, if I ever want like takeout or something, I will always bring it home to me and eat it by myself, cannot eat at restaurants. Even if I'm like with family or people I feel safe around, I can’t eat in public.
And I think you know, part of this is the sensory piece. But I think a lot of it is also just trauma from treatment because I was watched like a hawk for nearly 10 years, making sure that I ate my food and didn't hide it in my pocket and stuff.
And again, my autonomy was taken away, which now, you know, I really don't feel comfortable having people look at me when I eat because I feel like they’re watching me. But I feel like it's also an autistic thing of not wanting to be perceived. I feel like that's a huge component, too. So, I just also wanted to throw that out there in case anyone resonates with that.
MEGAN NEFF: Yes, I'm sure many do. I hear that a lot that like not, well, both not like you mean perceived. And I resonate with that, but especially while eating. Like that, that is a very, like, common experience I hear of, yeah.
LIVIA SARA: Yeah.
MEGAN NEFF: Well, Liv, where can people find you and find your work? I'm sure there'll be many people who want to learn more about what you do. Yeah, so where do people connect with you?
LIVIA SARA: So, I have my own so I have my own podcast, the Liv Label Free podcast, and that's L-I-V because I love [INDISCERNIBLE 1:01:06]. And then my website is where they can find everything regarding my books, my coaching, my courses. I have a free audio training for autistic people called Three Steps to Recovery from an Eating Disorder as an Autistic Person. Everything they can just find on my website livlabelfree.com. And yeah, I mean, if they want to get in touch with me, they can do. And that's pretty much everything.
PATRICK CASALE: Thank you for that and thanks for coming on and sharing your story. And it was a really good conversation. I think a lot of good takeaways. We'll have all your information on the show notes too, so that everyone has easy access to everything you just listed. I think that's our awkward goodbye time, so…
LIVIA SARA: Yeah, I will say thanks so much for listening. Goodbye, everyone.
PATRICK CASALE: Normally, we make it up as we go. But to everyone listening to the Divergent Conversations podcast, new episodes are out on Fridays on all major platforms and YouTube. Like, download, subscribe, and share. Goodbye.
