Podcast Transcript

Episode 67: How Do You Treat ARFID? A Deep Dive with Jaclyn Macchione, MOT, OTR/L, Part 1

[Bouncy theme music plays.]

Sam: Hey, I’m Sam.

Ashley: Hi, I’m Ashley, and you’re listening to All Bodies. All Foods. presented by The Renfrew Center for Eating Disorders. We want to create a space for all bodies to come together authentically and purposefully to discuss various areas that impact us on a cultural and relational level.

Sam: We believe that all bodies and all foods are welcome. We would love for you to join us on this journey. Let’s learn together.

Welcome to our deep dive into the world of ARFID, Avoidant Restrictive Food Intake Disorder. If you or someone you love is navigating this challenging diagnosis, or if you work with individuals who are, you’re in the right place. In today’s part one episode, we’re exploring something truly special, occupational therapy at Renfrew’s residential program and how it can play a transformative role in treating ARFID. This episode is truly like a crash course in ARFID.  We’ll unpack the diagnostic criteria for ARFID, the various subtypes, including what it feels like to experience a sensory aversion. Plus, we’re going to explore the overlap between ARFID and other restrictive eating disorders and talk about why understanding these nuances is so important for effective treatment.

Our guest today is Renfrew’s amazing Jaclyn Macchione, MOT, OTRL. She’s a licensed and registered occupational therapist with an extensive 20-year career specializing in the field of eating disorders. Jaclyn has worked at the Renfrew Center in both the residential and non-residential sites. She’s played a pivotal role in the development of Renfrew’s ARFID program, pioneering evidence-based therapeutic strategies to address the complex challenges associated with ARFID. Jaclyn is also the founder of Balancing Recovery, LLC, a private practice specializing in the treatment of ARFID. Her practice is dedicated to transforming the lives of children, teens, adults, and families through innovative therapeutic interventions. Her approach, grounded in sensory integration, behavior modification, and family-centered care, has yielded transformative results for countless children and their families. She has treated over 400 patients diagnosed with ARFID. She’s presented professionally on ARFID and is even published in Parents Magazine. In this episode, Jaclyn gives us a sneak peek into the highly individualized interventions she uses in our residential program and what to expect if you come into treatment. She talks about exposure therapy, oral motor work, and how patients often make incredible progress in just a matter of weeks.  It was amazing to discover how Jaclyn motivates patients to stay the course and how she truly creates a safe space by making every patient the boss of their own ARFID treatment. This episode, it’s not just educational. It’s full of hope and inspiration for anyone struggling with ARFID, for their families, and for the providers who are working to make a difference.  And don’t miss the part two next week when we’ll dive into what families can do to support their loved ones at home, helping them take what they’ve learned in therapy and bring it into everyday life. I am so happy you’re joining us for this powerful conversation. Get ready to enhance your understanding of ARFID, recognize the signs and symptoms, and discover how this diagnosis is treated with evidence-based care.

Hello everyone, welcome back to another episode of All Bodies All Foods. I’m Sam, I’m here with Ashley and I am thrilled to have our guest today on the show, our ARFID expert, Jaclyn. Welcome to the episode.

Jaclyn: Oh my gosh, thank you so much for the both of you for having me on. I am so excited for this. ARFID is my passion for sure, so I am so excited just to be able to talk to you guys about it and spread awareness and let people know that there is help out there for sure.  And, you know, to be able to give people some tips, some parents, some people who are experiencing some ARFID traits or are diagnosed with ARFID or think they may need to be diagnosed with ARFID.  So, I’m really looking forward to this. Thank you for having me.

Sam: Oh, thank you for being here. We are, we’re so excited. This is such an important topic. I think it’s really misunderstood. I think I agree with everything that you said, and I can’t wait to dive in. But before we do, we would love to learn more about you. You are an occupational therapist at Renfrew. You also have a private practice and you specialize in ARFID. And there might be people thinking, what is an occupational therapist and how does that differ from someone like me, you I’m a psychologist, you know, we have therapists who listen in. What’s different about an occupational therapist?

Jaclyn: It’s…this question, you know, I was just reflecting today on this question and I remember in graduate school, our professors saying you’re going to have a heck of a time explaining what occupational therapy is.

Sam: And here you are. 

Jaclyn: And here I am. Yes, like what is occupational therapy? Gosh, I mean, the way that I look at occupational therapy is like the overall goal is to help somebody function as independently as possible in all aspects of their life, you know? We have a model, it’s called the PEO model. And what it focuses on is the Person, the Environment, and their Occupations.  So occupations are defined in occupational therapy as, they are like your activities of daily living, they are your meaningful activities such as leisure, right, so how you are spending your time,  know, whether it is going to work, going to school,  volunteering in your community, it’s your relationships. So when you’re looking at the person, their environment, and the meaningful activities, you need to sit back and analyze, say your patient and ask them those questions. What, you know, “who are you?  What environments are you in throughout your day or your night and  what is important to you? How do you spend your time?”  So once you are able to analyze those, then you figure out a treatment plan, you know, where they are falling short.  And it could be somebody with a disability.  It could be an eating disorder, obviously. It could be somebody with a spinal cord injury. It could be someone who  fell and just broke their hip  and you are trying to get them back to their life, you know, during rehab.  You know, overall, what you want to do is really be able to figure out who this person is and what the demands are in their life  and  help them get back to their life, what they were doing prior to the disorder or the disability.  That’s a lot. I mean, when you’re thinking about, your goal is really to be in charge of helping this person regain their life back again.  Schooling is a lot. We are educated heavily in the medical field. I call it like a mini medical school we go to where we have to learn every disorder, every disability. We have to  learn how to treat in any kind of environment. It could be a school setting.  It could be, again, like in a rehab, in a hospital. It could be in a prison. I did my field work in a maximum-security prison.  And so, and of course, mental health is a huge part of this too.  So learning, again, learning about the person and the demands that they have and what their life was like before.  Everyone’s treatment plan looks different depending what environment you’re treating in.  So it’s a lot. And I think that’s why it’s so difficult to describe what occupational therapy is, because it is really trying to get somebody as independent as possible back to their life prior to whatever happened to them.

Sam: Wow.

Jaclyn: So it is difficult to describe.

Sam: Well, it’s so vast. It includes so much and it’s so individualized. I mean, every person in front of you, you are trying to figure out, you know, what is their very unique treatment plan to help them live life as fully as possible again.

Jaclyn: Correct. You know, so schooling is difficult, of course, because, you know, we take a whole summer of neurobiology where we are working on actual bodies and brains and learning all the nerves and the nervous system.  So it’s grueling, but yet it is obviously so rewarding. And it gives us a lot of options too once you graduate school of where you can work, who you want to work with. It’s wonderful. It’s a wonderful profession no matter what setting you’re in.

Sam: Well, how lucky are we to have you at Renfrew where you are, you know, you’re there, you’re helping patients with ARFID every day, and it’s, it’s so amazing. And, you know, one of the things I hear frequently is just that how individualized your treatment is. I mean, it’s really tailored so specifically to their needs  and it really makes a difference.

Jaclyn: It does, and I think, you know, every ARFID patient is unique, you know, and every ARFID patient,  their treatment plan does look really different. The approach a lot of times is the same. You know, we do treat through exposure therapy, of course, but, you know, these patients come with different learning styles.  So, and, you know, they carry other disorders with them sometimes, especially  the patients with anorexia and ARFID, you have to know both. You know how to treat both disorders because they are so opposite a lot of the times.  That’s why it’s so, I always say it’s so important that you find a clinician that knows both. If you’re struggling with both, like another eating disorder and ARFID, that it’s crucial that the person you go to for treatment understands both because a lot of times if not, if you go to somebody who maybe isn’t skilled with anorexia and you’re treating ARFID and then what you are telling them actually is reinforcing the anorexia. So you have to be very careful and make sure that both is being addressed and the person that you are going to is well versed in both disorders.

Sam: Makes sense.

Ashley: Jaclyn, I’m curious, how did you decide on like the eating disorder path within the OT realm, which we just discovered was extremely vast?

Jaclyn: It is very vast. Yeah, I knew early on in my schooling that I wanted to specialize in mental health. I didn’t know exactly where, but I knew that I just was connected to mental health.  Just from a personal story, my cousin had, he suffered a spinal cord injury when we were 19 years old, we’re the same age, in a car accident. And I went through a lot of his rehab with him by his side at the hospital. So I got to see hands-on what OTs were doing in the physical medical world, which is fascinating. And oh my gosh, I mean, the work is just so rewarding, you know, no matter what. But I just decided that mental health was more my thing.  I was really drawn to working, I spent some time in  West Philadelphia working at a community center with youth and really connected to them. And I was so fascinated by their culture and their lifestyle, and  I was really happy to help them. I started a afterschool program for them to give them a place to be in a safe environment and to do activities and life skills, teaching them life skills, and it just, I don’t know, there was just this passion there. It just really, really impacted me. And I just was placed at, you don’t get to pick really where you go for your field work.  My level two field work, which is three months, 40 hours a week, but like, let’s be real, it’s like 60 hours a week when you’re a student.  And they placed me at a psychiatric hospital, but it was for maximum security crimes. It was basically like at a maximum security prison, but the facility I was at housed all of, I think it was about 200, 200 inmates in the state that had severe mental illness,  that the prisons weren’t able to handle them.  So I did my field work there and my passion grew more and more for running groups. I loved running groups.  And so I knew then that I definitely wanted to be in mental health. And from there, I had a really hard time finding a job. It’s when the mental health hospitals were, they weren’t hiring occupational therapists anymore. They were replacing them with like rec therapists because they were, you know, more cost effective.  So then from there, I was really struggling and I actually went back to my professor and I said, you guys promised us that we’d be able to find a job when we graduated. I need your help. From there, my professor got back to me and said, I just saw a posting for some place called The Renfrew Center.  I don’t know what it is. I know it’s residential, but I’m not really sure. So why don’t you apply? So it was for 10 hours a week. That was it. And I thought, you know what? I was so confident. I thought if I get my foot in the door here, they’re going to see how valuable occupational therapy is. I was hired. And then that quickly turned into full time after two weeks of being here.

Sam:  And how many years now at Renfrew?

Jaclyn: Next month will be 18.

Ashley: Oh my goodness.

Sam: 18 years and you have developed the ARFID programming at Renfrew. You’ve helped so many patients. Let’s dive into just ARFID 101. I know there’s listeners out there that are just dying to hear more about what is ARFID. You know, ARFID just landed in the DSM-5. It’s relatively new diagnosis for a long time. It was just sort of called picky eating.

Jaclyn: Yeah.

Sam: And now we have actually diagnostic criteria. You’re here with us! What’s the difference between picky eating and a diagnosis of ARFID?

Jaclyn: Yeah. So I get that question a lot. So picky eating, the way that I look at this of, I mean, it’s been, I don’t, since the DSM came out, what, 2013, I believe. So I’ve had a lot of time to really reflect on the difference between picky eating and ARFID. What I’ve noticed is that ARFID is, you know, picky eating and ARFID, there’s a spectrum for sure, where,  you know, there’s people who  are picky eaters and there’s of course age appropriate picky eating, you know, through development. You know, children aren’t so thrilled to be eating vegetables, you know, at  age five.  So yes, we would consider them picky, of course, like maybe they want their crunchy, safe foods that they’re used to, what they’re familiar with, like goldfish and Cheez-Its and all that.  So that’s really age-appropriate picky eating.  And then there is ARFID on the other end of the spectrum.  And ARFID is different. ARFID, you know, I say you can grow out of picky eating, but you can’t grow out of ARFID.  You don’t grow out of ARFID.  ARFID really affects, you know I think of like the food groups  where variety is so limited. You know, these folks, you know, maybe eat three to five foods, you know, different foods a week.  It’s on heavy rotation. Usually when I ask, you know, during an assessment, “how many different foods are you rotating, different meals are you rotating throughout your week? Is it more than five, less than five?” I’d say 95% of the time they’re saying it’s less than five different meals throughout the week. And it’s more closer to three, I would say, three to five.  So when we have the patients fill out a food list and the food list really gives us an idea of how limited the variety really is.  And what we see on the food list a lot of times is entire food groups avoided.  You know, when you’re thinking of picky eater, maybe that food list would look like if they’re a bit like a pretty big picky eater, then maybe they’re eating 50% of those foods on the list, right? But when you’re looking at ARFID, you know, these folks are really  just eliminating full food groups, you know, where fruits are always like half and half, I’d say hit or miss because  I think children gravitate towards sweet foods. So they were more likely to eat fruits willingly growing up that they are UC eating fruits. Vegetables on the other hand, usually with ARFID, they might eat one or two veggies out of 40 different vegetables, but that’s usually eliminated.  We see seafood and fish is eliminated; condiments are eliminated. So we’re really seeing entire food groups avoided.  So that’s how I really distinguish picky eating versus ARFID.  Also the other big piece I look at is their social engagement. Are they declining invitations for birthday parties, for sport team dinners, that’s a big one where I have a lot of patients who are active in sports and they won’t attend the dinners before games  because they don’t know what is being served.  So I look at the social engagement and a lot of times they have a really big fear around social events when they don’t know what is being served. If food’s going to be there, it’s usually a no-go. You know, “I’m not going to go,” or they’re eating ahead of, like their parents are maybe feeding kids before birthday parties, before these social events, or they bring their own food.

Sam: So it really interferes. I mean, a kid’s life early on, elementary school, adolescent years, it’s like friends are everything and ARFID can really get in the way of kids spending time with their friends. A lot of stuff revolves around food.  And so I can see so much overlap with ARFID and restrictive eating disorders like anorexia.  And at the same time, these behaviors aren’t driven by a fear of weight gain or body image stuff, right?

Jaclyn: Correct. Yeah. You know, in the DSM-5, they talk about, you can’t have a formal diagnosis of ARFID if there is  food restriction, like driven by fear of weight gain, body image, all of that. You know, with that said, I will tell you that there’s probably here, at least at Renfrew, probably 85% of the patients I see for ARFID do have, you know, anorexia traits as well. Well, I mean, it’s very common,  very, very common.  You know, and my approach to that, and I tell them like, “I don’t care really what your formal diagnosis is.” You know, if the ARFID traits are there, they’re going to be treated, whether you are formally diagnosed with ARFID or not. Because a lot of the time, the ARFID traits developed, you know, from, I mean, if it’s sensory-based ARFID, developed from birth. So, you know, these  people who come in here  have been experiencing ARFID their entire life  and then, you know, maybe developed anorexia traits  along the way, but, you know, they have to be treated regardless, you know. So, yeah.

Sam:  So that brings me to my next question because there are subtypes of ARFID.

Jaclyn: Correct.

Sam: Would you be able to talk more about that? Because not all ARFID looks exactly the same.

Jaclyn: Correct. Yeah, like you can have, you can be in, you can have more than one subtype of ARFID. Like there are patients who, you know, maybe have all four actually of ARFID.  So the first one is the one that we see more often, I’d say is the Sensory Based Food Avoidance Subtype. And like I said, that one we see from birth. So these are the patients when I asked them, you know, have you been a picky eater your whole life? Yes. And I say, would your family agree with you?  Yes. They’re like, yes, a hundred percent would agree.  So that’s the sensory based one. And that is really deep rooted in your sensory system where, you know, your sensory system isn’t as organized as somebody else’s.  And I always tell them, listen, this isn’t a death sentence. Just because your sensory system is not organized doesn’t mean it can’t be. That’s ARFID treatment.  That’s what we do.  The interventions are to address their sensory system and to get it more organized. And then with this one, I do want to say that usually when I ask them the question, like, were you born on time? Were you born early? Were you born late?  Usually the folks that have this subtype, they were either born a week or more early or a week or more late.

Sam: Interesting.

Ashley: That is so interesting.

Jaclyn: It’s so interesting. You know, in school, we’ve, we learn about that. We learn about development and if you are born earlier or later, what might you experience and sensory issues, definitely one. And it’s just been my own little research where the majority of the time I’d probably say, gosh, like 85 % of the time, the patients that come in with a sensory, that’s the sensory subtype, are the ones that are born a week or more earlier, a week or more late, for sure. The second one is Fear Based Food Avoidance.  And these are the folks that are scared of consequences happening.  So they might have a fear of gagging, choking, vomiting, swallowing. So sometimes, and I do want to make this connection that sometimes it will start off as sensory based food avoidance. But because they are either like their parents are presenting foods that they are not ready for, that their sensory system isn’t ready for, and they have gagged on it, this sometimes becomes another subtype they’re dealing with. So it starts off sensory based, turns into fear based.

Sam: Something will trigger that other subtype on. And for our audience, when you say sensory, what exactly are the patients struggling with? Like what is their experience with the food? Is there something like an analogy that could help us understand what they might be experiencing?

Jaclyn: Yeah, like, so when, you know, we talk about our senses, we’re talking about texture, we’re talking about taste, we’re talking about visual, smell is a big one when it comes to ARFID. Tactile, which is, you know, any kind of stimuli that touches your skin that you may have an aversion to. So a lot of people can relate to uncomfortable clothing, like maybe you were a kid where you didn’t like wearing tight socks or tags on the back of your shirt. And you kept feeling and feeling that tag throughout your day. You never get used to it. It is just this, you know, nagging, uncomfortable thing that you’re dealing with throughout your day. So these folks are like, it’s magnified for them where that tag for us, maybe who, maybe we don’t have any sensory aversions, we can just grab our tag, you know, put it outside of our shirt maybe and go on with your life.  Where for them, they are feeling it so strongly throughout their day and they can’t focus on anything else.  So I mean, this goes, we get into the nitty gritty, it goes down to the cellular level, you know?  But it is an aversion of something touching your skin. And a lot of people can relate to that, because a lot of people say, “oh my gosh, yes, I don’t like this type of material.”  Maybe it really bothers them.

Sam: Scratchy, itchy?

Jaclyn: Scratchy, yes.

Sam: Got it.

Jaclyn: We call it a sensory shiver sometimes, where you literally get a shiver thinking about it. It’s so uncomfortable.

Sam:  Like Jaclyn, I was thinking, I think we all have had the experience of nails on a chalkboard.

Jaclyn: Yes, yep.

Sam: That’s a sort of sensory aversion that many of us can relate to.

Jaclyn: Yes, right.

Sam: But patients with ARFID, it’s like they’re experiencing that sort of physical sensation all the time?

Jaclyn: All the time.

Sam: With all different types of food?

Jaclyn: Yes, with all types of food. It’s, you know, I ask on my assessment, you know, the assessment is very involved. Like the OT assessment is very involved, but one of my questions is like, do you, have you had a hard time with clothing growing up? Like, would like, have you had tactile aversions? You know, people who don’t like sand on them, you know? And it’s similar to that, like nails on a chalkboard. It’s like, if you don’t like sand and you have sand on your body and you can’t get it off and you’re feeling it all over the place, you know, it’s really hard.  There is a connection when you think about, you know, if I’m having tactile aversions with certain clothing, so something touching my skin, why wouldn’t you have the aversion in your mouth? Like there’s skin in your mouth, right?  So it makes sense. There is a connection between tactile aversions and texture aversion. 

Sam: That makes sense. So we have the sensory subtype, the fear of aversive consequences, other subtypes?

Jaclyn: And then we have lack of interest in eating. This is not my favorite one. And this is why. Lack of interest in eating is so general. I mean, there’s probably a lot of patients at Renfrew right now, no matter what their eating disorder,  would say, Jac, I have a lack of interest in eating. Like I do. It’s very general.  My experience, the way that I look at this subtype is more of a lack of awareness that you need to eat. So especially the folks on the autism spectrum,  or folks with ADHD.

Sam: I was just going to say, because there’s a lot of overlap there.

Jaclyn: Yeah, there  is. Yeah, I mean I call it like the four A’s, it’s anxiety, ADHD, autism, ARFID. I mean, the four A’s, we see such connections with all four of those.  But yeah, lack of interest in eating.  Again, like my experience is these folks could go all day and you’re like, hey, did you, you asked me at eight o’clock at night, did you eat? And they really have to think about it. Like, did I eat today? I’m not sure, did I? And they really have to think about it where they may not be getting their hunger cues. They’re so distracted doing other things that they forget that they need to eat. So it’s not that they’re on purpose, they’re forgetting to eat.  They literally are not thinking about they need to eat.

Sam: Is it also that maybe the food doesn’t really give them that much pleasure? It’s just not that enjoyable of an experience?

Jaclyn: Right. And if you hear, a lot of the patients will talk about this feels like so much effort. You know, it’s so much effort, Jaclyn, they’ll say like, you know, thinking about what I need to eat and then, you know, preparing it and eating it and then cleaning it  up. Like there’s too many steps, they’ll say. Like this feels like work, a lot of work. 

Sam: Like it’s not worth it.

Jaclyn: It’s not worth it. And it doesn’t come natural, either. Because if you’re not getting your hunger cues, you’re easily forgetting that you need to eat and eating is really important and you need to eat. But yeah, they don’t have enjoyment out of it because I think they’re not doing it on a regular basis. And they’re really sticking to like their safe foods, too. So when you’re eating foods over and over and over again, it’s really predictable. There’s no, you know, you just keep eating the same thing over and over again that there really isn’t pleasure in it because you’re just doing the same thing every day. 

Sam: For those clients who have that lack of interest in food, do you think with treatment that shifts eventually that there is some enjoyment that can be developed?

Jaclyn: I try. Yes, that is one of my, you know, I don’t have any rules. The patients laugh at me because I just don’t have any rules except to have fun. I say, I don’t care what happens, but we need to have fun with it. You like the food or you don’t like the food is okay.

Sam: Well, Jac, I’ve seen your groups in the dining room before. We worked together for years at the Spring Lane residential site and everyone, I mean, it’s hard work, but they all do look like they’re having fun with you, which is really cool.

Jaclyn: Yeah, they do. I mean, I have done some crazy stuff I feel like in session over the years to get somebody to put food in their mouth, I will threaten them with singing, my dancing. I do, or I’m like, I’m going to play a song that you really hate until you do it. But we have to have fun. I practice the same way here as I practice at my practice. It is the same because really the less pressure and expectations you put on someone, the more willing they are to do it and having that intrinsic motivation and not just trying to people please me,  but  to try to have fun with it. And a big part of it is, you know, I tell them, especially for the kids who have been force fed, you know, they’re growing up that they have this really awful relationship with food, you know, and I tell them my job, my goal is for you to establish a healthier and a better relationship with food. And I tell them we’re going to undo a lot of that and we’re going to approach it in a whole different way.  And I really just say, you just need to have an open mind. I require an open mind, you know, and let me do the work and, you know, but that’s really important to me, for them to, you know, create a better relationship with food than what they had growing up, for sure.

Ashley: I’m going to ask a distinguishing question, maybe with this lack of interest.

Jaclyn: Yeah.

Ashley: And maybe you just covered it truly, but I’m curious if there’s an avoidant piece that plays out there for the person, or if it’s just a lack of awareness of what enjoyment can be with food, or if it’s on a spectrum with both of those.

Jaclyn: Yeah, it’s on a spectrum, I would say.  But I mean, it’s a really good point too, because like a lack of interest, again, this is why I have a hard time with this subject. There’s so many like components to this. Oh my gosh. like, it’s a really good point that you raise. Like, you know, if they’ve had a really awful relationship with food and food has really been a source of stress and anxiety, of course they’re going to have a lack of interest in eating. They’ve never experienced food as being pleasurable.  They never have.  And I’d say the majority of my patients, if I read them these subtypes, all of them say, yeah, I have a lack of interest in eating. From one reason to another. I mean, it could be lots of reasons why they have a lack of interest in eating. A lot. I mean, and that’s why it’s so important during the assessment really, really getting down to the root of all of this, you know, and asking those questions, really exploring the lack of interest in eating, because that can come from a lot of places.. You know? And then the fourth one that we see is the medical subtype of ARFID. And  I look at this as, you know, the patients that have learned that food can be harmful and hurtful. You know, so the patients that have grown up with GI issues, you know, or Crohn’s disease, for example,  that food can hurt, you know, it actually can hurt me, physically hurt me.  And the patients that grew up with allergies, you know, that like, yeah, food can be pretty, pretty harmful, you know, if you’re allergic to something and you ingest it, of course.  So they’ve learned that, you know, food can hurt. But with these patients, again, it’s like establishing, like doing a lot of work around, especially the allergy patients, and really finding out how that has impacted them. So a lot of times they generalize their allergies where, they’re allergic to peanuts, then all of a sudden they’re not eating jelly because it’s next to the peanut butter in the store.  And then they’re not, they don’t go down the whole peanut butter aisle and then they don’t eat anything that like is the shape of a peanut. Then they don’t eat anything that’s the color of the peanut. So, you know, again, it’s like reminding them of their allergies, doing a lot of, you know, education around their allergies  and what is actually safe and what is not safe. And, but you know, and that’s very different than medical subtype versus the other ones.  But it is approached a little bit differently here than the other subtypes. So, but yeah, they’re the four main ones that we see here. I mean, that’s pretty much what we see.

Ashley: That’s really helpful. I feel like I just got a crash course in ARFID and I actually understand it better now.

Jaclyn: Good.

Ashley: So I’m curious, who would you say is at elevated risk for developing ARFID and or are there signs and symptoms that we can look out for? Are there certain ages that we want to notice this stuff at?

Jaclyn: Yeah. I think like some symptoms like I’m thinking about parents maybe who are wondering if their child has ARFID. I would see, I would probably tell them to look out for like whether their anxiety has increased, you know, recently around food, you know, do you see them  more hesitant to start eating? They’re stalling their eating maybe, or they are saying no thank you to foods that used to be safe for them. So these foods that were safe and all of a sudden they feel unsafe, looking at that, seeing whether they are avoiding entire food groups? You know, all of a sudden, like have they, you realizing that like, wow, like they don’t eat any vegetables or they don’t eat any fruits now.  Also, are they avoiding social situations, going back to the social piece of all this?  You know, are they declining these birthday parties that they used to be so excited to go to, but you know, as they’ve gotten older, they’re realizing that others are noticing their eating.  So I would like, and if they’re gagging at meals too, you know, if you’re seeing, you know, they’re eating and you’re seeing a reaction that you’re not used to seeing.  And really just like watching their behavior at meals and not pointing it out, but like taking note of what’s different. You know, maybe they are asking for multiple forks during a meal and they want their food separated now when before it was okay to be on the same plate.  And loss of weight, you know, or they’re going to the pediatrician, and their growth chart has plateaued, you know, or has gone down, you know, that steady upward trend isn’t there anymore. 

Sam: Right. Or nutritional deficiencies.  Lab work might be showing that.  I remember you gave a training on ARFID a while ago that I sat in on. And one thing I remember from it was that folks with ARFID tend to describe food in a really unique way. I think you talked about describing food like grass clippings.

Jaclyn: Yes.

Sam: Could you say more about that? Cause I think that might be a sign.

Jaclyn: That is, it’s funny seeing that you’re bringing this up. Cause people do take when they talk to me like, Oh, I really, that was really interesting when you said that.  And they’re like, wow, now I’m thinking about, I’ve had patients described food in this way.  So I’m glad you took that away.

Sam: I did; I learned so much from your training.

Jaclyn: It is so interesting. So yeah, one of the, and this is in, I don’t know if it’s in the research yet, but it’s just years of doing it, I’ve noticed that patients would describe food as like objects that aren’t edible. Like they’ll say, Jac, like this tastes like bark from a tree, like walnuts, for example, that always comes up. They’re like, when we try walnuts, they’ll say, you know what, this just tastes like wood, you know? Or they’ll say, a couple of patients have said this a couple of times, where they’ll try something, they’re like, Jac, I feel like this tastes like an old boot, like how a boot would taste.

Sam: Oh, like leather, a shoe.

Jaclyn: Like an old shoe. Shoes come up a lot, I don’t know why.  Nature and shoes.  Yeah, but they do.  A lot of times they do relate it to objects that are not food. Yeah, the grass clipping is a big one.  Vegetables, I get a lot. Like, “oh, Jaclyn, this tastes like dirt. This is dirt,” you know.

Sam: Like soil,

Jaclyn: Like soil and dirt.  Yeah. But that is just, yeah. I mean, I always say, I wish I could just write a book right now of like, you know, these unusual descriptive words.  Yeah. It’s really interesting, but that does come up often.

Sam: Yeah. I wonder if some of that might even land in the next DSM. Who knows, but it seems like such a common thing. Right?

Jaclyn: Yeah. I would love to add to the DSM the next time.

Sam: I know, you should be a consultant. You should be a consultant for that.

Jaclyn: That would be my dream.

Sam:  Okay, so Jac, how do we treat ARFID? What can people expect if they come into treatment?

Jaclyn: Yeah, so treating ARFID.  So I had mentioned early on that it’s treated through exposure therapy. You know, the first, I would say what to expect, so whether you are coming here to Renfrew, whether you’re coming to my practice, depending your age,  you will get an assessment. So the assessment really covers sensory. The other big thing we didn’t mention is oral motor work.  So I’m doing a lot of oral motor work here at Renfrew  with chewing and swallowing, all of that. So I’m assessing if there are any underlining oral motor issues, because if so, and they go untreated, then the person’s still going to have a disruption in their eating. You have to treat both. And I think that is like the key when you are looking for somebody to do ARFID work with. You know, I always say how roads lead back to OT a lot, because we are the only profession that is through and through, educated in sensory integration, developmental feeding, oral motor work, because all of this has to be treated, or, I always say, then the patient’s getting half the treatment. So the assessments covering developmental issues, learning disabilities, learning styles, OCD, because we really, really need to dissect these behaviors out and figure out where it’s coming from. Is it a sensory issue? Is it OCD? Because they look very similar. You know, so after the assessment, I administer the assessment, then we determine what subtype or subtypes of ARFID  the patient has. And then from there,  we give a food list out and the patient needs to fill out the food list so we can really have a good idea of what their variety looks like, which also helps with meal planning,helps with their menus here, which something I do want to mention,  we do have ARFID menus. So in the dining room, which is huge, I mean, I think that really sets us apart from a lot of facilities,  other facilities that we do look at ARFID as a separate program, which is awesome.  I really made it that way. I wanted, it was so important for me to develop this, this program for the patient to feel like it is a separate program and they have their own menus.  They come down and see me three times a week. We have an ARFID party once a week, which is so fun.  But so then we fill out a food list and then we get to it. We start doing food exposure. The food exposures, like any exposure we do at Renfro, we work off of a hierarchy.  One thing I always want to ensure them that we are not going to make you do these really difficult foods at first. It’s quite the opposite.  So I’m a huge fan of baby steps and easing people into the work. We really start off with foods that maybe they ate in the past and they stopped eating it for whatever reason, but they’re familiar foods. They cause just like slight distress if anything.  So we really, really, I take, that is really important and we take it really seriously, that the patients will never be given food from me that they are not ready for. I always guarantee that I will never give you something that you are not ready for.  And so it’s all through exposure therapy. It’s very patient-led. Like I tell them that you are the boss, you’re in control. You always can tell me yes or no to a food. There’s always going to be a plan for the next session, so there are no surprises.  And I allow them to try the food any way they want. And I think that’s different because you hear sometimes you go to conferences and you hear therapists or dietitians or whoever say, you need to try the food four times to be able to tell me whether you like it or not. Now all the patients doing is focusing on eating something four times and they’re not focusing on their experience with the food.  So, and I say, I’m here to support you. I’m here to give you all the tips and tricks and all that with trying food and suggestions, but they are the boss. So, and again, that really reinforces that intrinsic motivation, you know, where they’re not, I don’t need them to do it for me or please me. I need them to be very mindful as they’re doing it, feeling control of the food and have again a positive experience with the food.  You know, they’re, like I said, they come down, you know, I get to see them three times a week while they’re here, and they usually do, and I don’t want to scare anybody because the numbers sound scary if you haven’t done it, but you know, they are up to about 10 foods the second session with me.

Sam: Wow. And then Jaclyn, by the end, I know sometimes you ask them, how many new foods do you think you tried? And then compared to what they actually did, you told me that it blew my mind.

Jaclyn: I know. So one of my favorite, favorite times with them is towards like their last discharge session with them. I will ask, okay, I’ll say, so how many foods do you think you tried while you’ve been here with me? So maybe it’s about four weeks or five weeks,  three times a week. So I’m like, how many foods? And they usually say, I don’t know, like maybe like 40 or 50. I’m like, okay. Usually it ends up being well over 100.

Ashley: Oh that is amazing.

Jaclyn: A hundred and twenty, hundred and thirty.

Sam: In four or five weeks. There are parents listening and they’re like, I could never do that.

Ashley: I know.

Jaclyn: Oh I hear it all the time.

Sam: Jaclyn works her magic at Renfrew. Well, they do it. You really give them so much voice and choice and you create such a safe space for them that they’re able to try so many because they trust you. And it’s fun.

Jaclyn: I know. And it’s fun. And it’s fun. Yeah. And, you know, the parents, I get to see the parents at my practice, because they sit in sessions with me and they’ll look at me and see, Jaclyn, what are you doing? I have been trying to get them to eat, like try something, you know, and they come here and they’re trying 10 foods and they’re having fun. Like what’s happening?

Ashley:  How do we do this?

Sam: What’s your secret? How do we do it? What’s the secret?

Jaclyn: And I would say the secret is all in the approach. It is creating a very safe place for them and knowing how to approach the work.

Ashley: So Jaclyn, I have a question for you. We are full on running out of time.

Sam: I hate that phrase.

Ashley: I know, I know. Sam’s like, “don’t you say it, Ashley.” We have so many more questions and I’m actually curious if we could do a second episode.

Jaclyn: Absolutely.

Ashley: Can we continue this? I think there again, there’s so much more information to unpack and uncover for folks that may feel like they have this diagnosis, for families, for professionals. So could we put a pin in it and come back? 

Jaclyn: Sure. Absolutely. I am fine with that. I would love that. That would be great. Yeah, there is a lot to unpack. You’re absolutely right. We just like

Sam and Jaclyn: scratched the surface.

Sam: But this was a crash course. I might name the episode that.  It was amazing.

Ashley: Well, thank you so much, Jaclyn. And we will get that second episode scheduled. And thank you to all of our listeners. We hope, you know, you really are taking away a lot from this episode. And we appreciate you being here with us. And we’ll see you next time. 

Jaclyn: Well, thank you for having me. I mean, anyway to help the field of eating disorders and of course, you know, give some education on ARFID and to help some families out there and some people who might think that, you know, they have it and they’re struggling to know there’s hope. There is hope and, you know, the first step is to do this, you know, start educating yourself and listening and, you know, knowing what to expect and all of that. So I appreciate you guys, and what you’re doing on your podcasts.  It’s wonderful. I love listening to you guys. So thank you for what you’re doing.

Ashley: Thank you.

Sam: Thank you.

Ashley: Thank you for listening with us today on All Bodies, All Foods, presented by the Renfrew Center for Eating Disorders. 

Sam: We’re looking forward to you joining us next time as we continue these conversations.

Ashley: Thank you for listening with us today on All Bodies. All Foods. presented by the Renfrew Center for Eating Disorders.

Sam: We’re looking forward to you joining us next time as we continue these conversations.

[Bouncy theme music plays.]