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The Truth About ARFID w/ Lauren Sharifi @arfid.dietitian

autism recovery
the TRUTH about ARFID

Introduction

Liv: Today, I am joined by Lauren Sharifi, a registered dietitian-nutritionist based in Massachusetts. Lauren owns a virtual private practice where she specializes in ARFID (Avoidant Restrictive Food Intake Disorder) and works one-on-one with parents, teens, and adults. She also runs a monthly support group for adults with ARFID. Lauren takes a neurodivergent-affirming, trauma-informed, and responsive-feeding approach to make eating and nourishment more accessible for individuals with ARFID and ARFID-like traits. Welcome, Lauren!

Lauren: I'm glad to be here!

Liv: I'm super excited because the knowledge and information out there about ARFID – especially in correlation to diversity – is so limited. Lauren and I met when I was still living in Boston, and I shared a podcast with her about how one treatment center treats ARFID. They were talking about this deviled egg plate and having people with ARFID try like 60 new foods a week. Lauren and I talked about how we don't even have ARFID, and having to try 60 new foods a week would already be overwhelming to us! So it's important to be talking about ARFID and how it’s being treated with someone who understands ARFID, and who works one-on-one with people who have this disorder. For those who are unfamiliar with ARFID and want to learn more, can you tell us what ARFID is?

What is ARFID?

Lauren: Yeah, so you mentioned ARFID stands for Avoidant Restrictive Food Intake Disorder. It's one of the “newest” eating disorders; it was about 2013 when it was first in the DSM, so it's not even 10 years old, super new. That's one of the reasons why not a lot of people know about it or have heard about it. What we know is there are three different subtypes of ARFID:

  1. Avoidant: often sensory related
  2. Aversive: individuals often have a fear of adverse consequences like vomiting, choking, allergic reaction, and some other health event happening after eaingt a certain food
  3. Restrictive: these people have very low interest in eating, they may get full quickly, really have no appetite.

What I see in my practice is individuals will fall into a main subtype, but may fall into multiple subtypes, as well. It's very different from person to person.

Liv: I didn't even know that there were three subtypes! Everyone is so, so different. What you mentioned about understanding what main subtype a person has can help you understand them better, especially what you're saying about the lack of appetite. Some people with ARFID just find a lot of food to be disgusting. I read a lot about autism and its connection to eating disorders, specifically anorexia, and I read an article about how the insula perceives disgust. People with anorexia and autism tend to have a higher disgust response, so based on that, maybe in ARFID, there's something with the insula going on. But that's just an idea. You mentioned it's barely 10 years old, so what got you interested in specializing in ARFID and even going into this field?

What got you interested in specializing in ARFID?

Lauren: I've been a dietitian for over 12 years now and have had my hands in a few different things! But more recently, I was in private practice at a gym, and I was getting a lot of eating disorder clients, kind of finding interest in that. Then, at that same time, I was having my kids and finding an interest in working with families and feeding challenges. So the combination of those two, I was getting a lot of individuals with ARFID and ARFID-like traits. I found a real interest in working with these clients, realizing there's not a lot of resources for professionals, let alone clients, and wanted to fill that gap. I started my practice about a year ago now and really decided that I wanted to specialize, really focus on not only learning, but helping these individuals and families with kids with ARFID. That's kind of how I got here!

Liv: I think it’s amazing that you decided to hone in on this niche because it is such an unrecognized niche. About a year ago, coincidentally, I also decided I'm going to focus on bridging that gap between neurodiversity and eating disorders. Because I discovered I am autistic almost a decade after I was diagnosed with an eating disorder, my Instagram account was always eating disorder focused; recovery from an eating disorder, extreme hunger, fullness, weight gain, all the things that they talk about, but no hint of autism. Then, when I discovered I'm autistic, it started bleeding into my content. The more and more I shared about neurodiversity, the more and more I realized, wow, this is such an unrecognized niche! I think it's amazing that your heart guided you to be a guidepost for other people. You said you were working first with several different eating disorders. I'm really curious, and I'm sure that a lot of people are curious: What is the difference between ARFID and Anorexia?

What is the difference between ARFID and Anorexia?

Lauren: ARFID is more a fear of a negative health event or physical event happening. Anorexia is more that fear of weight gain and body dysmorphia. I do have individuals who have had both, so it can happen, but the ARFID part is more specific to that fear of sensory overwhelm, more a physical thing and not the weight gain.

Liv: That's interesting because I was diagnosed with anorexia and never had fear of weight gain or body dysmorphia…and when I was diagnosed with autism, this whole course of my eating disorder made complete sense to me because of that. I always hated feeling full, never wanted to outgrow clothes because I didn't want to change, I was a very picky eater – which we can get into as another misconception about ARFID! But for ten years straight, up until the point where I developed my eating disorder, I ate the same thing for breakfast, lunch, and dinner, without fail. If my parents couldn't get me my mac and cheese dinner, I just would not eat. Another interesting thing, I think there was a lot of research being done about the impact of a traumatic birth on the development of eating disorders, and I did have a very traumatic birth. I was born two weeks late, but I had the weight of a preemie baby, which was really odd. So they think because I wasn't immediately able to be with my mom after I was born, there was a lack of oxytocin connection, and they have found decreased levels of oxytocin in people with anorexia. But I've often questioned, after discovering I'm autistic, was it ever anorexia? I just never resonated with those symptoms. I did resonate with the underweight piece, but again, anorexia isn't even about weight, because you can have anorexia in a larger body. So this is why we need to just stop with all these labels! Now I'm curious, how do you recognize if someone has ARFID and anorexia? Or, if they don't have body dysmorphia or distorted body image, and also neurodivergent so they have all these sensory issues, could it be that it's an eating disorder but not anorexia or ARFID?

Lauren: You bring up a good point because there is some belief that ARFID itself is under the neurodivergent umbrella. So individuals with ARFID, how they experience food, differs from the norm. Is that bad? Is there something wrong? A lot of individuals, especially kids, if they're given enough of their safe foods, are able to grow, and develop normally, some don't even have nutrition deficiencies, and their growth is fine. Is that a disorder or is it just a difference in eating? Is it even a problem? I think that's the big question. It might not even be a problem, but then other things compound that makes it a problem later on.

Liv: I think that question you just posed, “What is actually a problem?” That's the question of life, right? I always advocate for neurodiversity, and in autism, specifically, it's technically called Autism Spectrum Disorder in the DSM-5. But I do not see being autistic as a disorder. I definitely saw my eating disorder as a disorder because that negatively impacted my quality of life. But I think when it comes to being neurodivergent, like ADHD, autistic, dyslexic, but being able to compensate in a visually creative way, I think it's only a problem when we try and fit into this standard world. I became an entrepreneur because I can never work a 9-5 job; I just cannot work for someone else! I would get fired after five minutes because they would tell me what to do. I like to be in control, and I think that's what led to the eating disorder. That's another question, because for me, part of the reason why it was anorexia, despite the lack of body image issues or fear of weight gain, was that need for control. Do you see that manifest in your patients with ARFID?

Lauren: Yes, I think so. I think that can definitely be a component of it. I know everybody's so different.

Liv: No, definitely. Now that we are talking about just neurodiversity and autism, how do autism and ARFID tend to overlap?

How do autism and ARFID overlap?

Lauren: The big one we mentioned is the eating differences. Often a lot of individuals who are autistic also have sensory aversions, so more like overwhelm; a taste, a smell, or a texture can be very overwhelming and not enjoyable. I think there's that commonality, too, of liking sameness, and consistency. You even mentioned in your experience, eating the same thing for breakfast, lunch, and dinner, and that's maybe seen in our society as abnormal. But is it? I think that's a very autistic culture thing that I see a lot. Is there anything wrong with that? They're growing normally, and they're happy, totally fine. Then there are also some interoceptive awareness differences, so some signals are more muted. Hunger, for example: people with ARFID are not able to tell when they're hungry, and maybe fullness can feel too intense. So that's where they may feel, "This is uncomfortable, I'm full already," leading to inadequate intake. Other things might be executive functioning differences, which kind of come out in the adults that I see. We might have difficulty preparing, planning, and remembering to eat. To get food on a plate if you're preparing yourself can be a lot of steps, and that might be overwhelming, so there are some avoidance behaviors around that. Those are the main things that I see in the overlap. How you can accommodate these things so that they're able to get an adequate intake is a lot of what I'll help individuals with, so they're able to live their lives!

Liv: Almost everything you just mentioned, I'm nodding my head, "That's me!" I talk a lot about interoceptive awareness and interoceptive difficulties because I do not have reliable physical hunger cues. I often have to rely on my mental hunger, and coming from years of restriction where mental hunger was a “not to be trusted” kind of thing, it was really hard to give myself permission; this is how my body communicates with me and how I have to listen to it if I want to be the healthiest version of myself. That was really difficult. Sometimes I do realize if I am really busy, super absorbed in writing my book, or doing a podcast, or filming a video – because that's that hyper-focus mode that neurodivergents get into – I don't eat for several hours, and then end up wanting to eat everything but the kitchen sink! And I have a really hard time sensing when I am full, so in those moments, I'll just keep eating until I eat way too much, as if my body will only signal the fullness once I’m so stuffed and no food will go into me anymore. It's tricky navigating that, still, for me. That's why I always say we're lifelong learners! Even though I coach people and help people with this, no one's relationship with food is perfect or balanced, because that doesn't exist. I'm currently reading a book on the Polyvagal Theory for the book I plan to write on anorexia and autism, and the author actually talks about the term homeostasis and that the body is constantly trying to go back into homeostasis, but it's never actually in homeostasis. Because homeostasis means to never be changing! But the body is constantly changing. Another thing you mentioned is feeling overwhelmed about getting food onto a plate. I live alone, so half the time I don't even eat my food off a plate! I'll just go straight for the bread, take the slice in my hand, and spread the butter on. Why would I get a plate for this if I can just use my hand? Another thing, I don't know if you see this in your ARFID clients, too, is that I'm constantly washing my hands because I can't take stickiness or anything on my hands. So if I go to make a meal, I will wash my hands like thirty times, it's crazy. Do you see that in your ARFID clients, too?

Lauren: For sure. A lot of them will have different difficulties touching certain textures or not liking to touch stuff. Using utensils to touch things instead of their hands. A lot of avoidance around that.

Liv: Do you come across clients with ARFID that have no neurodiversity? Just the ARFID? 

Lauren: It's funny because it's not common. There are so many different diagnoses that fall under that umbrella. A lot of them do, and if they're not – probably are! ADHD and autism are two common ones, but there is OCD and anxiety disorder. There's the belief that ARFID in itself is a form of neurodivergence, and so it's pretty low, very uncommon. If someone says, "I'm not neurodivergent," I'm like, "There are traits there." And it's just hard to get a diagnosis, for ARFID or other neurodivergents.

Liv: Oh yeah! Even the fact that there was no questioning about my being autistic until a decade later. That's severely problematic. I honestly think that the severity of my eating disorder could have been reduced had my autism been accommodated, accepted, and worked with instead of being told that my autistic traits were “eating disorder behaviors.” It made everything worse because I believed: if you don't understand me, I can't trust you. And trust is a HUGE factor in working with any mental health issue, or any kind of person, really! That's the story of life: if you don't have trust in another person, you don't have anything.

Lauren: It's a huge part of the feeding relationship.

Liv: Obviously, not everyone who is neurodivergent will develop ARFID or any kind of eating disorder, so what are some common causes and triggers for developing ARFID, specifically?

What are common causes or triggers for developing ARFID?

Lauren: We talked about the neurobiological component, then there are other parts with trauma. You brought up birth trauma, and that's something I've been asking more and more about my clients: What was your birth experience? Because a lot of people have some infancy trauma, even in the womb, because we experience trauma that young, so it might be that you don't even remember the trauma. It could be adults, who maybe didn't have ARFID at all when they were younger, experience an event when they are an adult, like a choking event, a vomiting event, allergic reaction, that kind of triggered it. Then there's sensory stuff over time – I call it “Small Trauma” – being forced to eat something, pressured to eat something, criticized for their differences, or picky eating. And there's masking, that's the big one in autistic culture, having to mask to seem more normal – that's trauma! No accommodations – trauma. And then the cultural and social component is huge, too. Because if we were like, "oh, you're eating normal, that's fine, you don't have to change, you don't have to eat a variety of different foods." if you don't have that label of pickiness or demonizing the foods, because a lot of people with ARFID, their safer foods might be what's considered by our diet culture as "unhealthy," so if there were none of those factors at play maybe there wouldn't be an issue. But they're there, and so that can make eating more difficult. Those are the big ones. Some sort of trauma and our society on top of, potentially, that neurobiological component.

Liv: I feel like any type of trauma that happens after birth is just our messed up society. I believe that my eating disorder, whether it was anorexia or whatever it was, was a manifestation of my autism, my neurodiversity. Especially what you just mentioned about diet culture, too, and things being unhealthy. When I was in fifth grade, literally the time I developed my eating disorder, you learn about health and nutrition, and have to take the fitness test, and get weighed at school, and get sent a BMI, like what range you're in - all the shitty stuff. But I remember sitting in a circle in fifth grade and the teacher pointing out on the whiteboard, "If you have an apple and if you have a cookie you have to eat the apple because the cookie is going to give you diabetes." I remember seeing that, and ever since that day, "If I eat cookies, I'm going to get diabetes," because I took it so literally with my autistic mind. And now you're explaining that trauma can be small things, I think even her pointing that out on the whiteboard could be considered trauma. That's also a very important thing that I want to emphasize for anyone: anything that you believe was trauma is valid. Because that's another thing in society, "That's not trauma, trauma is only being physically abused." That's a very, very extreme form of trauma, but you also have other forms of trauma. Huge misconceptions. What are common misconceptions about ARFID?

What are common misconceptions about ARFID?

Lauren: One of the biggest ones is picky eating. I hear that all the time and that they'll just, "grow out of it, it's not a problem." Again, is it a problem that needs to be fixed? I kind of talked about this, too: Is the base issue the problem? And, I guess, "What's full recovery?" A big misconception is it’s similar to anorexia, that some individuals, when they love a variety of different foods, they're going to eat normally, and they're going to be able to try to succeed at a million things at the same time. And that is not true, everyone's recovery is so individual and different. It's different for those with different subtypes. It's different because everyone's different.

Liv: I say the same thing about any kind of recovery or just life because you are a different person, you can't expect to take the same approach to recovery from an illness. That is a very big problem with the big, massive healthcare system and traditional treatment, not even for eating disorders but for any type of mental health, when we zooming out to the general public! I think it's more of a sickcare system because it's not about prevention. It's more of a pill culture, especially in the U.S. I had horrible back pain a couple of months ago, and when I went to the doctor, I was met with, "Here are three painkiller pills." And I thought, are you kidding me? I refused, because it’s not a pill problem!

Lauren: Slap a bandaid on it and it'll go away!

Liv: The same with my missing period when I was severely underweight. “Oh, take birth control and you'll get a period,” not even looking at the larger situation of, “Maybe you're not getting a period because you're severely malnourished.” It's very odd. Now that we are talking about treatment, how is ARFID being treated, currently? I'm especially curious to this one because it is such a "new" diagnosis.

How is ARFID being treated?

Lauren: That's a good question because there's not one way to do it, there are a few ways that are being used. One big one is called CBT-AR, which stands for Cognitive Behavioral Therapy for Avoidant Restrictive Eating Disorder. It works on increasing the volume of safe foods for weight restoration, and food exposures when appropriate. DBT (Dialectical Behavioral Therapy) is another therapy that's used, a lot of emotion regulation and coping skill work. Then, especially for autistic individuals, Systematic Desensitization is used a lot in younger kids, but it's not always super child-centered. The one therapy that I use a lot is called Responsive Feeding Therapy, that's the one that jives most with me. There are components of CBT-AR and DBT that I pull from, but Responsive Feeding Therapy is underlying. It works on facilitating the rediscovery of internal cues, so helping with that in terms of interoceptive awareness, curiosity around foods, and motivation; that more intrinsic, internalized motivation to try new foods or just to eat, in general. Working in a way that builds skills when an individual is ready, meeting them where they're at. The biggest thing is it's flexible. What works for one person doesn't work for another person. Feeding relationships, especially for younger kids – but even the feeding relationship with others as adults – is an important component that we don't talk about. Community around food and eating. The biggest thing is respect and autonomy. Autonomy is an individual's right to say yes or no around what's going in their body, for example.

Liv: It sounds like your approach is very holistic, which I am all about! That's kind of that whole idea of being label-free, too; not slapping a label on and saying, “this is how we do it." I think, especially as an undiagnosed neurodivergent person, for me going through treatment, it was always, "This is how we do it," and when I didn't get better, when my disorder seemingly got worse, it was, "Oh, you're too complex," or, "You're hopeless because our approach doesn't work." I've often wondered why healthcare professionals say that and I think it's because they are people, too, and by basically saying it's the patient's fault, they're off the hook. There are so many clients that I talk to that have had eating disorders for a very long time, and one of their biggest beliefs is, "I'm never going to fully recover, I'm always going to have to deal with this or manage this for the rest of my life." I ask them, "Why do you believe that?" and they reply, “Because a healthcare professional told me so when I was younger." It just doesn't make any sense to me. But I love your responsive eating approach, how you pick from here and pick from there, always focusing on the individual and what the individual needs, the autonomy. I think my eating disorder became worse in treatment because I was often forced to do things I didn’t agree with – but that is trauma! That force is trauma, and when you are traumatized, your body is going to respond in a rebellious way. It's going to reject that approach. This leads to the distrust, which results in tension…and how can you ever expect to heal in an environment that is infested with tension? I think the root cause of any kind of illness is stress and distrust, whether it be distrust of the body or distrust of the cells. So, I love to connect with people that take that holistic approach and see people for who they are, because we are all so different, individual, and unique! With all that said, you also work with parents and with families. How can they best support people with ARFID? What have you seen that's helpful and that works, or that doesn't work?

How can parents and caregivers support people with ARFID?

Lauren: The biggest thing is validation; that's not given often in healthcare, validating that lived experience. "You're not experiencing that, that's not real, you can just eat this food," all this rhetoric around it that just doesn't feel supportive. So just validating that experience they're having to kind of build that trust, trusting that relationship, trusting themselves, and helping them by supporting their safety. Making sure that there are safe foods available can be the easiest thing to do. An example is ensuring the environment that they're eating in is comfortable so they can accommodate for a situation that the noise in the room may be too loud. Again, all these sensory components. I have a lot of individuals who go to school in elementary and even college, and the cafeteria is loud, and there are lots of smells, and they can't eat; so how do we accommodate that? Can we find a quieter environment that doesn't have as many smells so they're able to eat at school? And in the home, what do they need to feel safe and that's going to help them feel calm so their appetite is better? And I think a big one is no pressure to try new foods, really neutralize the experience. If you're doing exposures or trying new foods, make it neutral – so no positive or negative feedback.

Liv: Labels, good or bad, are the root cause of tension, restriction, and distrust. I don't even say anymore that anything is healthy or not, because if I say this is healthy, if that's how I determine it, then anything that's not that must be “unhealthy.” You get just crazy in your mind and I have enough going on in that brain! We don't need labels. I have a phrase in my book that’s the question: "Hey, Livia, but isn't autism a label?” And the distinguishment that I often make is, does the label serve a helpful function, or does it restrict you or prohibit you? I think what you said about the positive or negative reinforcement, and making the trying of new foods a neutral thing is super important. Because even if there's positive reinforcement, from my perspective, I can imagine if someone is very restrictive in what they eat, say they only eat peanut butter sandwiches, and someone says, "Why don't you add a banana to that?" It's a very intimidating experience, but in a neutral environment, they're going to add a banana to their sandwich. I think if it was, "Good job, you added the banana," and I had ARFID, I would immediately feel pressure to always add a banana to prove myself somehow. When it's not coming from yourself, change is never sustainable.

Lauren: That's a good example. All of that is external versus that internal, intrinsic, "Hey, I did it." Everyone's different. That's the big thing, understanding what feels like pressure, and what doesn't feel like pressure to an individual. Because every child, specifically, is going to react to different things than adults would.

Liv: I think in the end, it all comes down to validating the individual – not necessarily understanding them. I always tell healthcare professionals if you do not have lived experience with autism or an eating disorder, do not tell your patient or client you understand, because you don't! I know that's very brutal, but every single autistic person I've spoken to about this says, "One of my biggest pet peeves is when they say they understand but they don't have our experience." Validating, being willing to listen, and accommodating, not even for just ARFID, but for life, for people, that's how you have positive relationships, that's how you can function best. If you feel seen. Because in the end, that's the main goal of life: to feel seen, understood, heard, and allowed to be who you are. Without labels!

Lauren: Yeah, there is no right way to do anything. In this case: eating: there's no right way. There are labels around, "This is a breakfast food," or, "This is a dinner food." We don't need that.

Liv: You just opened a can of worms! One of the hardest eating disorder rules for me to break was eating certain foods at different times, like eating pancakes at 4 PM. That is another thing that was so harmful in treatment. They had this word "normative" that they attached to everything. They would say, "Well, this is a normative food, and that is a normative food, but if you have them together, it's no longer normative, it's disordered." It's so funny because there's this one combination that I remember so clearly from treatment: "It's normative to eat scrambled eggs, and it's normative to eat chocolate cake, but it would not be normative to eat them together." That example stuck with me because, growing up, before my eating disorder, my sisters and I, whenever there was a birthday, were allowed to skip morning school, and we would celebrate with chocolate cake and scrambled eggs, ironically. During my eating disorder, I obviously did not participate in this event. But after treatment, I was very adamant we were going to have that, even though I wasn't even in treatment anymore, just so I could prove that they couldn't tell me what to do! As you said, it all comes down to respecting the individual's needs, neutralizing the situation, listening to them, and guiding and supporting them. I think any person with ARFID would be so lucky to work with you. Where can people get in touch if they want to work with you, or if they just want to learn more about ARFID and how they can support someone with ARFID?

Where can people learn more about you?

Lauren: You can find me on Instagram @arfid.dietitian, and my website is LaurenSharifi.com. You can find more information there if you have an interest in working together.

Liv: Well, Lauren, it has been such a pleasure speaking with you and I have learned so much about ARFID. I think you're doing very, very important work, especially with that neurodiversity component. It's been so great speaking with you. I'm sure that we'll get in touch again and do another episode in the future. Thank you so much!

Lauren: Thanks for having me!

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