ARFID Unmasked: Insights for Clinicians, Caregivers, and ARFID Warriors

 

Brianna Miluk: Hello, hello, and welcome to The Feeding Pod. This is your host, I'm Bri, Brianna Miluk, and I am a speech language pathologist and certified lactation counselor. I specialize in infant and medically complex feeding and primarily see patients in the home health setting, although I do have some that I see an outpatient or via tele practice.

I'm also an instructor at the university level and a PhD student studying communication and information sciences. I have a huge passion for evidence-based practice and supporting information literacy in speech, language, hearing, feeding, swallowing sciences, specifically as it pertains to social media and translational research.

This podcast is meant to share anything and everything related to being a pediatric feeding SLP feeding therapist with sprinkling in a little bit about working in academia, being a Ph. D. student, and how to access, appraise, and implement research into clinical practice. Some episodes may contain guests, and I'm already looking forward to some of those coming up, while others might just be me rambling about something that's been on my mind.

Regardless, my goal with this podcast is that you walk away not just with newfound knowledge, but with the inspiration to think critically and not be afraid of research. So, without further ado, let's get into today's episode. 

Welcome back to the feeding pod. I am Bri and I'm so excited because today I have Cassidy Arvidson with us today and she is going to be sharing about her lived experience as someone with ARFID. And if you're not familiar with ARFID, don't worry, we're going to go through all the ins and outs of like, you know, formal definition, all that stuff.

But also, what, you know, what it's like living with ARFID, how her experiences have been, her past experience with therapies, what it's important for us to know as clinicians. And yeah, I'm just, I'm so excited and I'm so grateful that Cassidy has agreed to share this with us because I think these lived in experiences are so important for us to better serve our patients and our families.

And yeah, so Cassidy, I'm so happy you're here. I'm going to pass it over to you to kind of give us like the, the, the quick synopsis of like, who is Cassidy? 

Cassidy Arvidson: Thanks so much, Bri. I, my name is Cassidy, Cassidy Arvidson, and I am 26 years old and I've actually had ARFID my entire life. So, this is a big part of my world and my reality and I'm super excited that Bri asked me to be a part of this.

It's my first, like, appearance outside of, like, my own Instagram, so I'm super excited to actually be moving forward in just spreading more awareness on ARFID because it's something that is really, really important to me. And I've like made it my mission now that I wanted to spread so much awareness about ARFID so I'm super excited to be here. And yeah. 

Brianna Miluk: Awesome. I, I love that that's your mission because, you know, I think You know, we want to make sure not to put like too much responsibility on people to like share your lived-in experience. But it's so powerful to know. And I know that a lot of what you share is to help validate the feelings that others have with ARFID.

But I hope you know that like as a clinician, as a feeding therapist, it is so powerful for me as well. And it helps me better understand the clients that I'm working with. Now primarily I work with pediatric feeding disorders, not ARFID, but it's really important for me to understand that delineation and also recognize like where I play a role and where I don't play a role.

So, I'm really excited and I appreciate you sharing all of the things. And before we kind of get into some of your experiences, can you just kind of help explain to people what is ARFID? Like what does ARFID stand for? What's kind of the formal definition? Like, so we can all start on that same base level of, like, definition.

Cassidy Arvidson: Yeah, for sure. So, I actually looked up the formal definition of ARFID because I didn't want to mess it up. So ARFID is an acronym that stands for Avoidant Restrictive Food Intake Disorder, which is less commonly known, which is a less commonly known eating disorder that in summary is a complex eating disorder cat cat- categorized not by issues with body image or weight gain, but by extreme fears or avoidance of foods because of their taste, texture, smell, and or other factors like overall disinterest and and or low appetite surrounding food. Was that good? 

Brianna Miluk: No, that's perfect. 

Cassidy Arvidson: I just fumbled that. 

Brianna Miluk: And I'm glad you brought up the fact that like this is an eating disorder and I think I like as a feeding therapist want to emphasize that point because this is different than a pediatric feeding disorder or picky eating or something related to like a feeding skill standpoint.

We're thinking of it more from the psychological piece, right? So, talking about like sensory differences or anxiety surrounding that, and it's very different in how you're going to approach you know, supporting someone with ARFID. So, I'm really glad that you, you brought that up. Okay. So. Now that we have, like, the formal definition, right, the boring part, how would you define ARFID? Like, in your own words, how would you, how would you, like, kind of bring, bring that description together for, for how your experience has been? 

Cassidy Arvidson: Yeah, no, for sure. ARFID shows up differently for everyone, which everyone, you're going to hear me say that a million times throughout this because it is so, so true. ARFID is literally so different. I have not met another person with ARFID who has shared the same experience as I. So, I just want to make that clear throughout, like, as we continue throughout the podcast. But because it shows up differently obviously the answer is going to look different to everybody.

But for me, ARFID is overlooked, misunderstood, and much, much more than picky eating. It is so and very much classified as picky eating, and you're just going to grow out of it. And I just want to be clear from the start that it is more than picky eating, if we actually are dealing with ARFID. 

Brianna Miluk: Yeah, I'm so glad you brought that up because there is, there is a difference between pediatric feeding disorder, ARFID, and picky eating. Like they are vastly different and you know, that's kind of part of a role as a feeding therapist is to help navigate and figure out which one so that you can best support that. I'm also glad though that you brought up like being overlooked and misunderstood. I think misunderstood probably is going to be, you know a common theme, especially like as you're sharing, like based on my lived experience, I feel that ARFID is misunderstood.

And so, I'm really excited to dive into that more. So hopefully people can leave here better understanding what exactly ARFID is. Now you had mentioned it shows up differently for everyone. Right. And I'm sure that's true within all aspects of ARFID, but are there sort of different types or categories sort of of ARFID that can better help people understand?

Maybe like, again, we're, we're talking themes here. Of course, each experience within it is going to be different. And you know, that's always valuable information with each client that you're working with, but could you give us a general overview of those different types? 

Cassidy Arvidson: Yeah. So there, so yes, that's definitely true. There are different types of ARFID and there are three main subtypes of ARFID which are avoidant, aversive, and restrictive, but as well as ARFID plus, which can be any of these subtypes of ARFID plus a coexisting eating disorder like anorexia.

And then there are, I can go into like what exactly those three categories are the avoidant ARFID subtype presents itself as one who avoids certain types of food based off of sensory features, leading to sensitivity or overstimulation reaction. They may feel sensitive to the smell of foods or textures, appearance, or foods that have a certain color.

So that's avoidant. There's also aversive. Aversive ARFID evokes fear of choking, nausea, vomiting, pain, and or difficulty or issues with swallowing. This is, this forces the person to avoid food altogether. And then, lastly, for the main sub or main subtype of ARFID, restrictive ARFID may show signs of little to no interest in food in general.

One may forget to eat altogether, show signs of low to no appetite, or get extremely distracted during mealtimes. Other symptoms include pickiness of food leading to limited intake and variety, but it is important to note that all of these subtypes of ARFID, but it is not uncommon to have more than one subtype of ARFID. Me personally, my ARFID shows up in both the avoidant and restrictive subtype. But I just want to say your ARFID is real and valid if you have all or just one of these subtypes. 

Brianna Miluk: I'm glad you brought that up because that was a question I was going to ask is like, you know, even though we have these you know, variations and types of ARFIDs, it can overlap. So, there's that. It's like, okay, I could have just one type of this ARFID, or there could be an overlap of, of all three of two of them. So, clarify that that's helpful. I feel like for. Like my experience as a clinician with ARFID, the one that I see the most which I know you said is not necessarily like the like biggest subtype is actually the aversive ARFID because of children that may have had a pediatric feeding disorder.

So, they had something medical going on that made swallowing difficult, increased risk of choking, made them feel uncomfortable when eating. And even though that medically has been managed, they will continue to show those aversive behaviors of like, I'm scared. I'm, I'm scared that if I eat, even though, you know, some of those things have been managed or resolved, I'm thinking about specifically with patients that have had like eosinophilic esophagitis, like doesn't feel good in the esophagus.

And even though the EOE is being managed. They're still really nervous about eating some of those foods. And so, and then of course the, the avoidant restrictive I've definitely seen versions of those as well. But I find it from a pediatric feeding disorder to ARFID. I find like that sort of the the one that it almost like we'll *talking at the same time* on after because some kids it's like, Oh, medical management's under control. I'm good. I can just start eating. But I've had some kids that are like, I'm just still, I don't want to feel bad. I don't want to choke. I don't want it to hurt. I don't want. And so That will still kind of hang out there.

So, I'm glad you brought those up though. That is honestly something that I learned from your page. With ARFID is like understanding ARFID, but then realizing that there's the, these like different types. So okay, so we have a good sort of foundation. What is ARFID? What are the types of ARFID? How to define ARFID.

So now I would like to know more about your experience with ARFID. So, let's start out, when did you first notice that you were having feeding difficulties? Or maybe because you had mentioned it had been your whole life, when did your, your caregivers first notice that maybe you were having some feeding difficulties?

Cassidy Arvidson: Yeah. So, when did I first notice? This isn't the case for everyone, as I said, because everyone's ARFID does develop at different times and for different causes. But for me, like we said, my ARFID, I was practically born with it is what I like to say. I don't even know if that's like an actual like confirmed possibility, but it seems to be so I'm just saying it is.

But growing up, I had always been labeled as an extreme picky eater and was told I would grow out of it. But here I am at the prime age of 26 and still eating the exact same foods that I was eating as a child. I believe the case of my ARFID actually started in utero slash like during my birth actually.

My mother didn't know that she was pregnant with me for most of her pregnancy and this is because she didn't show like there was just no Belly, there was no baby to be seen um and because there was no belly, there was no amniotic fluid in the placenta. So, I was just this little dried up little raisin hanging out. And so, when I was born or when it came time for me to be born, they guesstimated me roughly like premature, but that's just like a random side side fact.

So, when I was born, the umbilical cord was actually wrapped around my neck, my head and my body and was causing like difficulty in breathing. Obviously, any trauma to obviously the neck, the head is going to be traumatic. Which obviously, so this was traumatizing to me as an infant and I like to note that, like, the body does remember trauma, I don't know a whole, I'm not informed a lot about, like, the body remembering trauma, but I definitely do believe that that's a real thing.

And just like all other eating disorders, they develop subconsciously, so. That's kind of how I believe that my ARFID kind of came about and because it's just always been a thing when I was a toddler, like I didn't like candy as a kid, I didn't like juice, like all the things that like kids are like, Oh my God, I want to live on this lollipop for the rest of my life.

That was, that was not me. Now, I, I, I did have obviously safe foods and I, I just continue to eat those to this day. So, I don't believe it's anything that I or anyone did to me for this to develop. I believe that ARFID typically develops, like I said, through some sort of trauma. Whether that be big or small in quotes that's not really up to like us or even relevant.

Some people like, I don't know, they're just like, Oh, like someone from the outside can see it as like something small, but it's really not small. Like the body- the size of, like, the trauma doesn't matter is kind of what I'm trying to get at. And I just want to say that ARFID is not a choice. I have a lot of people who say it is a choice.

It's just a picky eating. And that goes to say, like, with all eating disorders I try to be an advocate and, like, just conscious of, like, all eating disorders that I'm aware of, not just ARFID, but I obviously speak more personal to ARFID. And just, like, informing people that I have no memory of my life without ARFID.

And the limitations of my ARFID and what that's kind of like capped me on. It's just kind of always been who I am. And sadly, I fear that it will always be who I am. Which, because ARFID, it's just so limiting in like so many aspects. And it's not something I want at all. And so yeah, that's a little bit about like the backstory of kind of how my ARFID developed and all of that.

Brianna Miluk: Yeah, no, this is super helpful. And I think that, you know, like you said, ARFID is very, very different for everyone. And I'm so glad you brought up the, you know, trauma being big or small and how like someone from the outside be like, that's, that's nothing. What do you mean? Like, just kind of, you know, get over it or whatever.

And it's like, that's. It's not how it works. I always like the phrase that trauma is perception. So, like a big trauma to you might be a small trauma to someone else, a small trauma to someone, maybe a big trauma to you. And, and that's why it's, it's based on that internal perception. There actually is a book if you haven't read it yet called the body keeps the score.

Cassidy Arvidson: I've heard of it. Yeah. 

Brianna Miluk: It is very good. It's good. And it really talks about how trauma can manifest in the body within the body. And so, you know, even something like you were saying that like a trauma in infancy may have presented itself in a way that the body kept the score and then it, you know, manifested as these difficulties with eating and experiences around eating.

I'm, I'm glad that you brought up too how you said you know, this is kind of in my own life, but I also sort of fear that it always will be because there are these limitations around it. And I think that, you know, we're gonna, we're going to talk a little bit about what's been helpful or not so helpful with, you know, your journey with ARFID.

But I would love to, and I definitely did not send you this question ahead of time it kind of popped into my head though, but. I feel that with, with ARFID treatment, there is, and we talked about this a little bit before we hit record, but you know, there's a, there's a piece to it where there has to be some internal motivation to say, okay, I want to expand my variety a little bit, or I want to engage in this exploration.

And I'd love for you to just speak on that a little bit and how maybe like at this point in your journey with seeking support to kind of, you know, work on whichever pieces of ARFID that you want to work on may have been different than if you had been placed in therapy as a child who maybe was not interested in expanding your diet variety at that time.

I would love to just hear your take sort of on on that because I think that internal motivation is a huge part of like, honestly, like, ethically, if we should be providing treatment, so. 

Cassidy Arvidson: Yeah. Yeah, no, that's, I, honestly, I kind of hold, I kind of hold some resentment to just like, my caregivers, my mom, my dad, the people who were just caring for me as a child, because I would have really liked, well, I can't say like, little me would have been like, so willing to do this, but.

It's just I currently as an adult, I hold a lot of resentment towards like not getting some type of treatment or something when I was younger and you do have to have like a sense of- there has to be a- a sense of willingness. If you want to move anywhere in like the direction that you want to move in with ARFID, like if I want to have more less limitations with ARFID in the sense of like the food itself.

Like if I want to have a wider variety. I have to have willingness to face the fear over and over and over and over again, and that's not something I'm currently interested in, even though that's a life that I really really want like I would love to be able to go on a first date and just have him pick a restaurant and we just go. That's not something that I'm, I'm able to do and, and I, I wish that I could have like done more work as a child, but I didn't even learn about what ARFID was until coming up on two years ago now. So that's, I hope that answers the question. 

Brianna Miluk: Yeah, no, that's so helpful. Cause I think that, you know, it kind of reflects on this like balance where let's say that you were. You know, really, really little that you were, you know, six, seven, eight years old, probably not recognizing, you know, like the, any of those limitations or impacts you're thinking about, but maybe had you been told what ARFID was in late middle school or high school. You would have been like, wait, I would like to investigate that more.

And I also think too, having that I'm sure. And I'd love for you to speak on that more too, of like finding out about ARFID two years ago. Like how validating that must've felt of like, wait a minute. This is, it's not like a, you know, quote unquote problem with me like this is a thing. This is, this is real and I can only imagine that that was super helpful and maybe that will kind of, you know, transition us into this next part of like what part of your journey has been helpful in your experience with ARFID, finding out what ARFID is, and, you know, any of the, the treatments along the way as well? 

Cassidy Arvidson: Yeah. So, what's helpful, again, varies from person to person. But ironically, like I said, I didn't even know ARFID was a thing until just coming up two summers, like, summers ago when I was literally in the exact room that I'm in right now.

I was on YouTube and I had I think I was researching, because ARFID was originally like, kind of categorized as Selective Eating Disorder, so SED. Which I had explored that, and I also had explored neophobia, because I was like, those were kind of like, the two pillars that I was like, This is, I'm resonating a lot with these, but not like fully, and then it kind of suggested a video of and I'm sure Bri can, like, we can, like, get the resources for this video because it was, like, it was amazing for how informative and direct but, like, easy to understand this video was.

Brianna Miluk: Yeah, if you find the link, re-find the video, we'll share it in the show notes. 

Cassidy Arvidson: Yes, perfect. Okay. And I just watched it. It's like a 10-minute video and I literally remember I was crying and I text my best friend when I watched it and I sent it to her and I was like, Oh my God, this is me. Nobody could tell me that this is not me because this is so me that like I feel like I wrote like I could have made this video.

If I understood myself with that like way. So that was a really monumental moment for me. And so, yeah, that was two summers ago. And I mean, that was. That made me 24 years old. And so, I've been living my life up until that moment, just believing, or just honestly, just gaslighting myself that like, I'm just a picky eater and I'll eventually grow out of this.

But I, in my head, I'm like, that's not going to happen. Like, I don't know how to put this into words. So that was, that was honestly, it was a big, it was a big moment and it's made- I've turned my life in like a different direction of like what I want what I need and just like getting the people around me to understand this, and just feel validated. I'm big on validation in all forms, but especially when it comes to this is because I spent so much of my life feeling invalidated, but like not knowing that there was a way for me to be validated. If that makes sense. 

Brianna Miluk: No, it does, I feel like that it, it You know, and, you know, correct, correct me if I'm wrong. I don't want to put words in your mouth. It's almost like it gave you the language to explain what was going on. Like, you're like- 

Cassidy Arvidson: 100% 

Brianna Miluk: Not only do I feel validated that like there is. You know, a diagnosis that like makes sense for how, you know, I experienced food, but it also gave you the language to advocate for yourself and to then say, okay, now I can find supports that I need.

Now I can like better, better help myself even like personally, like, okay, I don't, I don't have to gaslight myself into thinking that like, I'm just a picky eater. And like, why can't I just get over this and actually saying like, no, like this is. This is real. You know, and this is different than being a picky eater.

Cassidy Arvidson: Yeah. And I think like, for more like concrete, like what has helped me with like my ARFID, there's a few things. One thing, which I don't, I didn't even put in my notes, it just came to me is community. I mean, this is big in like all aspects of like life. Community really like just. Having ARFID is really, really lonely just because it's so, it's such a, I don't want to say it's a small thing, but like it's, the people are unaware.

Everyone's unaware of what it is. They're, it's, not uncommon that I run into someone and they're like, what is ARFID? This is my first time hearing what ARFID is. So, I think, and that's a big reason other of why I like created my, my profiles, my Instagram and my TikTok. But, so just having a sense of community and just like understanding, even though my ARFID is, I've not found someone who has my, my exact ARFID, like my exact safe foods, my exact blah, blah, blah.

I just having a sense of community is really, really helpful. So definitely that's one thing. Another thing is I personally struggle a lot with low appetite and just overall disinterest in food. And in these moments, I struggle the most. That's when like I I'm just like, I don't know. I'm just not doing well when those like moments are high.

Because I just quite literally don't want to eat and not for the reasons of like weight loss or because I'm quote unquote, I'm not hungry. But because I just hate eating. Eating has never been a pleasurable thing for me. It's simply a chore. Like, like, Every day when it comes to lunch, I'm like, Oh my God, I have to eat lunch.

And that's just exhausting. So, in these moments, the most helpful thing for me is having a list of foods that I know to be safe. And Kevin does ARFID on Instagram actually just made a post about how to do meal mapping and kind of gave a breakdown of like how to create a list like this. And I actually don't even, I've not even made a list like this.

So that is definitely something that is really helpful. Just having a list, however you want to create it and just having easy reference to food that, you know, to be safe and simply look at it. Cause another thing that people with ARFID struggle with is like, we get very overwhelmed just because we have such like disinterest in food that we just.

We're like overeating. Like I've had ramen so many times. I'm like, I cannot have any more ramen. So, let me go to the next best thing that I, I know, but I sometimes you forget about like your safe foods. So, having a list is super, super helpful. And then always having snacks. Snacks, snacks, snacks. If a snack has to be a meal, then that's just how it is.

Snacks are often, well, snacks in quotes, because I feel like a snack is just like, the term snack is like small amount, but like you can make a snack food just like larger. That's what I do. Like I'll, I have goldfish for breakfast like every single morning. So just always having some type of snack food or something that's super easy to eat with you. And just having that to eat is honestly what's helpful for me in my ARFID at this time. 

Brianna Miluk: No, I love that because you think there's, it's sort of like twofold the things you're talking about. One is validating that, like the foods that are safe for you are okay to eat at any time. It doesn't have to be a snack; it doesn't have to only be in a very small amount.

Like if goldfish is the choice of the meal, like that's okay. And kind of like helping with some of that, you know, self-acceptance piece of like, it's okay to eat the foods that I want to eat. But I also appreciate you bringing up that list example, because I think that it's sort of like if you're, you know, I'm reflecting, I don't have ARFID, but if I'm reflecting on moments where I'm feeling overwhelmed you know, I don't want to make a decision right now.

I can't think critically. I can't like go through the steps of something. And so, having that like actual visual of like, these are a list of foods that are safe for me. And if you've had, for example, ramen multiple times in a row, it's like, okay. Well, I also want to be careful that I don't like, you know, jag myself on a food.

I don't get a food jag. And then all of a sudden I don't like ramen at all. So, like what's another one I can rotate with, without having to think like too critically, it's like, it's like, no, they're right here. I can grab it. It's fast. It's convenient. Cause I think too, where you mentioned. Like feeding, like eating being a chore that you, it's just like something you have to do. I can imagine that that makes wanting to be involved in excessive cooking recipes. Like, just like, no, thank you.

And that's something that I've seen actually, ARFID dietitian share, which she's going to be in an upcoming episode talking where she's like talking about like convenient foods, like things that you can put in the microwave, things that you can open and eat immediately that that can alleviate some of that, like feeling of like, this is a chore and I just don't want to do it.

And so instead of not, you know, instead of saying like, well, I don't really want to do it. I'm just not going to eat it all. Having those like other convenient options, which kind of makes me think of your, like just having those little like safe food snacks around to be helpful. 

Cassidy Arvidson: Yep. I always have goldfish in my purse or my bag if I got a tote bag. Like I live in New York City, so I've always got a bag of some sort, whether it be a tote, a purse, whatever. There's always goldfish in there. Like I've gone to literal formal weddings with my purse and inside was goldfish. 

Brianna Miluk: I love it. 

Cassidy Arvidson: They are always there. So, and if that's what you have to have, like, then that's just how it is. And I think now the acceptance of that is a lot harder, but I think just like doing that act and having it available is really, really important. 

Brianna Miluk: I love that. Okay. So, kind of getting into a little bit, maybe more of the, the more difficult topic of like, what are some things that you you've heard or felt or seen that are just not helpful as you are working through this journey?

Cassidy Arvidson: Yeah. Again, this is going to vary from person to person, but I found that in my experience and we kind of touched on this a little bit earlier is that food exposure therapy is just not helpful for me. At least not right now. It's something that I really, really want to work towards and I've tried it multiple times.

I've even tried doing like hypnotherapy. I've done hypnotherapy for my ARFID, even before I knew it was ARFID. I was just like; I can't eat like an orange. Why? And I've had little successes and like less anxiety when I did like the hypnotherapy, but. I mean, here we are in this exact moment. I'm I'm not able to do them.

So yeah exposure therapy is just not something that I'm really interested in doing right now. And it's not helpful for me, but it can be helpful nonetheless, but like I said earlier, you really have to be willing and open to put in the work because it is a lot of work. It is a lot of emotional work and it's a lot of acceptance work.

It just results in a lot of anxiety. And I also find it to be a little humiliating after the fact, like once I've calmed down from my panic of trying a lick of some non-safe food, like example, peanut butter. I get embarrassed thinking about how ridiculous it was that I got that worked up over something that in reality seems so small.

But I do my best to remind myself that although this fear may seem irrational to others and even to myself at times that it is valid and true and I, of all people, should not be the one making myself feel bad for a subconscious reaction that my body is experiencing in order to simply protect itself.

My brain believes it is in danger and fear is the body's way to protect itself. And I must remind myself of this when I'm doing food exposures, although I don't do them often. 

Brianna Miluk: I'm so glad you brought that up. Cuz I think in the, in the feeding therapy world, like food exposures and like desensitizing clients to foods is is like the go to. And I really think that we should be reflecting a lot more on supporting the self-acceptance and advocating for needs and validating the feelings. Because unless somebody comes to me, it's like, all right.

Teach me the tools. Tell me what I need to do to be able to like expand my variety. And even then it's like, okay, here are the tools. Now you go, you know, it's like, it's also something that I need to be like checking in every couple of days. Like, did you do the, you know, it's like, no, here are the tools and I want to equip you with those tools.

But more than anything, I want you to feel validated. I want you to have that self-acceptance and understand like. I need to advocate for my needs or making those adjustments. I actually had a conversation yesterday from when we're recording this with a parent where I said, if your child is having difficulty and you know, like, if we go to a wedding, it's crazy that it was the same situation where you're like, okay, that's going to be an overwhelming situation.

Who knows what they're going to be serving? And you say, you know what? I'm going to make sure my child is fed before we go. And I'm going to bring a safe food there so that they can enjoy the event more than anything that that's being intuitive and attuned to your child's needs. And like. 

Cassidy Arvidson: Yeah. 

Brianna Miluk: It's not something to feel shame about. And like, that's exactly what we want to work toward. And when the child says, Hey, I'm ready to like try new food. And I want to go into that. I just think that, you know, it's so- Those are the things that matter much more long term. Then like you said like okay I tried the exposure and like guess what, you know, a year later from trying that it's like nothing stuck and it's because it's hard, it's really hard work and, but also recognizing- It's okay if you don't want to do it.

Like that's absolutely okay. You know, you can still be well nourished and get all the things that you need in a safe way that feels safe for your body. Cause like you said, it's like my body subconsciously is saying this isn't safe and that's your body protecting itself. 

Cassidy Arvidson: Yeah. I think it’s; I like that you said, or just brought up how the self-acceptance or just like acceptance in general. And Just feeling safe around that and validating people in their experience, I think that because that in return, I think is going to be more motivating for the individual to want to do food exposures. I feel like if I, example, peanut butter, if I am doing a food exposure with peanut butter and I took 45 minutes for me to do one tiny baby lick of peanut butter, I'm going to, I'm already going to feel discouraged, humiliated, panicked. And even though I may have, I may have done like one little lick, it feels, it doesn't feel like a celebration. And so, I think Working on the self-acceptance and just like, yeah, just working on self-acceptance. I think it's going to be the most motivating piece when it comes to moving towards expanding the variety because everyone's goal, whether you have ARFID or you just want to expand your variety in general for different reasons.

Maybe you have. I mean, I don't know you're the pediatric one, but I don't know the other struggles, but I'm sure that there are. And I think the main goal should be just like motivating the individual to get to the end result. We can't start where the most challenging part is. So, I think that's really important to highlight.

Brianna Miluk: No, I'm glad you brought that up. It's like, that is the most challenging part. We don't just skip to that. We, there's so many other things that we have to support first. So, thank you. Um okay. So, if there are any caregivers, parents who may be listening in, what is something that you would like to share with them that you would like them to to know or, or hear about that, you know, maybe have a child with ARFID. 

Cassidy Arvidson: I love that you have this question in here because I never really think about this. I actually have a lot of parents who DM me or like comment on my videos and are like, Oh my God, my seven-year-old, like literally only eats potato chips and Cheetos.

And like, I want to help them, which I love that they're even they found my page. They're aware of who ARFID is like that's the first step. So, I think that's mainly what I'm going to be talking about is like educating yourself on what may be going on. It may not be ARFID but it may be ARFID and the first step to actually helping them is to get educated.

So. What I would suggest is to actually listen to what your children are saying and feeling about food, whether that that could even be like in like a good reaction, like they could eat something that they like explore why they like that. What is it like? What is the sensory experience of that? Or Just exploring how they're feeling and what they're saying about food, good and bad, and then respecting their boundaries with food and exploring the fears if they have them.

And respecting their boundaries is really, really big. I feel like, I know I can speak to personal, like, experiences where, like, as a child, like, oh, I, I was given green beans, and I was like, absolutely not, like, I will not eat these green beans, like, no. And... I, I was saying, no, like I'm not eating these green beans and respecting that they don't want to have those green beans or whatever it is and just, I think showing, especially at a young age, like just respecting boundaries, boundaries in general are really, really important.

And that the force feeding should never ever be the first answer. And I may be controversial. I don't know, but I have been force fed and it only causes more issues. It just instills more fear. 

Brianna Miluk: 100% 

Cassidy Arvidson: It gives resistance. 

Brianna Miluk: Yeah. I'm a, I'm a hard stop on that. Absolutely. Absolutely should not ever. 

Cassidy Arvidson: Yeah. It's traumatic. Like the green beans example is literally, I have such a vivid memory of this because that was traumatic for me because I was force fed green beans. I was told you will sit here until you eat these two green beans. And I sat there for like an hour and then I did not eat them. And then my, my grandma literally fed them to me and like force.

And it was just like, that was, that's never, never should be the first option or even, I don't even know if it should ever be an option, but I mean, there are more extreme circumstances that I'm sure where it could be a possibility. And then also understanding that all food has nutrients all food. I hate we have like a hierarchy of food and that this food is healthy and this food is unhealthy.

I hate in my personal life. Like I'll have friends who will literally be like, Oh, all I eat is junk food or I hate the term junk food. No, a salad and a potato chip and a sandwich on white bread. They both have nutrients that your body needs, and it is important to have a balanced meal, but a balanced meal looks different for everybody.

Brianna Miluk: I, I had sorry to interrupt you, I took the course RDs for neurodiversity with Naureen Hunani. And one of the quotes she said was that she was like, the body knows nutrients, not recipes. And she's like, they don't, the body doesn't know the difference between a dino chicken nugget and like chicken that's on like you know grilled chicken salad.

Like it just knows the protein in the chicken. Like, and you know, the, the sort of, or like, it doesn't know the difference between a certain vitamin in like a supplement or a shake or, you know, some, some type of drink you've made as compared to like the vegetable, the raw vegetable. And I just think that that's so important and validating because like food doesn't have morals. Like food is just food. And I love that you said like the balanced meal can look very different for, for each person. 

Cassidy Arvidson: Yeah, no, I'm glad you brought that up more because I had seen a TikTok or not a TikTok Instagram post about like, yeah, chicken can look like dino nuggets or can literally look like a gourmet meal prepped five star like, you know, it's all these things.

So like for me, I quite literally grew up on like, I packed my lunch every single day as a child, every day I brought my lunch from the time I went to start school to the time I graduated, I packed my lunch and every single day I had crackers and bologna and probably another bag of chips like and I that's just like how it was for me.

And for me, I've been lucky. I've always had stable vitals I've not really had any huge like major health concerns. But I think that's important to like note that like I didn't grow up with a balanced meal And I just was fed like I literally just ate enough of what I liked and that was enough to keep me going, and I've, I've, I've, yes, I've been small my whole life, but, like, my vitals have been healthy, which is the most important.

So just remembering that eating something over nothing is always, always, always better. And last but certainly not least, get curious and get educated on ARFID, as well as just all eating disorders in general, eating disturbances, they're really, really important. And they're much, much, much more common than you would believe. So. 

Brianna Miluk: Yeah, I appreciate that and kind of bringing to light that, you know, this is something that is a newer diagnosis. And so, part of that is just getting educated, becoming more aware of it. You know, as, as caregivers and professionals so so that we can better identify and help people get the support that's actually going to, you know, make them feel validated and and hopefully support those long-term changes and in a much more positive manner. Okay, so. If you are talking to someone who maybe has ARFID who's listening to this episode, what is something that you would like to share with them? 

Cassidy Arvidson: Yes, I love this question and it was so fun like exploring this. Cause I was like, what do I really want to be saying to these people? Because I am one with you if you're listening. And honestly, it's just, don't be afraid to ask for accommodations. For the longest time- I mean, I didn't know I had ARFID until two years ago, but I was so scared to ask for accommodations. I've always been like, Oh my God, I can't do this because I won't be accommodated or just yeah. So, I had a friend last summer who I told him about my ARFID and everything and he, he would like just walk me, I would always bring my lunch with me somewhere and I'd have like leftovers that were cold.

I have an ice pack in there. You know, I'm ready to eat. I just need it warmed up. And he would just walk up to some restaurant, literally random in New York. Hey, you got a microwave in here? I know you do. Could you warm this up? She has dietary restrictions. She just needs this warmed up. Could you pretty please?

And they always say yes. Like I think finding the confidence to just ask for your accommodations, whatever your accommodations are, it's important to ask for them. And I know it can be scary to take up space in this world, and even more so, I know you don't want to feel more like an outcaster than you probably already do, because I know I already feel like an outcaster having ARFID and then I have to point it out to this individual when I'm asking for accommodations.

But you deserve to live a life that is as fulfilling as other ableists get to do. Kick the shame and the guilt to the curb and bring your cute little lunchbox with you everywhere you go. Okay? Last summer, like I said, I started doing this and I've slowly started to gain more confidence in accommodating myself in ways that I know are helpful and increase my quality of life because when it when I really start to think about like my outfit, the biggest fear I have is losing my quality of life, like by my limitations. 

So I think we really just need to pay attention to accommodating ourselves and asking for it, because that's the only way if we're not, if like, if, if food exposures are like, not something you want to do, the only way that I believe you're going to be able to increase your quality of life is to accommodate yourself and make others accommodate, make, that's a little aggressive, but like, you know, ask for them, encourage them, and if someone won't then do it, do it for yourself.

So just bring your favorite childhood snack to work or whip out your bag of goldfish on your first date. Like I said, I did it at the wedding, you're valid, and you're seen by me, and together we are going to make a difference, not only in the ARFID community, but in the world. 

Brianna Miluk: Oh, I love that so much. And I, I just appreciate you sharing all of those. And I hope that anyone listening feels so much more validated in it, but also recognizing like, it's hard, you know, you're sharing, like, it's really hard for me to bring my lunchbox places. It was really hard because unfortunately the society we live in is super stigmatized toward, you know, people with disabilities and differences and that, that makes it even harder.

But I think, you know, the more that you can say, I'm advocating for myself and I'm, I'm you know requesting this, the easier that it will get, but also the more awareness it brings to people that there are differences in food experiences. So, I'm so glad you brought that up. Okay. Last big question is what would you say to clinicians or physicians about ARFID? What should they know about it? Yeah, I was, I would like to know what you would share with us. 

Cassidy Arvidson: I want them to simply just take the time to get educated and I know that's like so general but it's like nothing more than I can ask for because once you're educated you become more curious and then it just in return gives the support to the people in need.

ARFID was officially declared an eating disorder in the DSM 5 in 2013. 2013! I know you guys know what year it is. It is 2023. It has been 10 years since then and little to no providers know anything about it. Literally, they're completely clueless to even the acronym, the term. It's honestly, it's really invalidating going into a PCP office or even an eating disorder like eating disorder specialized clinics who have little to no knowledge of what the disorder actually is.

They'll look it up by definition, but do they have the actual knowledge within their own brain to be able to support you? Because a textbook isn't going to support me. It's going to just teach you about a term that's pretty much what textbooks do. And then when you go in, you often get misdiagnosed with something else because there's the lack of education and awareness.

And then that can lead to other traumas. I have heard other people on like comment, like DM me all this stuff saying that like they were misdiagnosed. And now there there's even more fear. And there issues because they've been invalidated for so long, they got treatment for something they never even had so that, yeah, that's mainly that, but I think that the need for support for ARFID is out there, like there is a big need for it.

Like rightfully so. There's so many people who have ARFID that don't even know that they have ARFID. And the few resources that are out there, invest in them. Get curious and get educated. And then I also want to shout out the providers who are dedicating their, like, life, their time to supporting those with ARFID.

I thank them. Lauren, my dietician, ARFID dietician on Instagram. She's amazing. If you ever have the chance to work with her, I know she also does ARFID support groups for caregivers and for individuals, adults. So that's. Little shameless plug right there. It wasn't in my notes. 

Brianna Miluk: Okay, I love that we didn't even realize until we talked today that Lauren is who I am going to be talking with later today, actually, and her episode will be coming out right after yours, so I just think that's such a small world connection. Which also shows how small the ARFID community is. 

Cassidy Arvidson: Really, it is. It is quite small. Like, I kind of know of, I don't, like, personally know them, but, like, I do know of, like, the major, like, ARFID providers and supporters who are out there and are making a difference. And I just think that they deserve a shout out because they're really making a huge difference and making milestones of, like, hopefully a changed future that really benefits people with ARFID.

Another thing that I wanted to point out and just ask is, if you are wanting, if you are a physician or clinician and you want to get educated on ARFID, really hone in and explore those who have lived experience with ARFID. So just listening to this podcast in general, it's already a great start, but there are other people on Instagram, on TikTok, and on maybe other platforms as well, who are sharing their lived experience with ARFID online.

And just get curious about that. Ask some questions because like I was saying earlier, no textbook is going to outweigh the knowledge you'll gain from lived experience. So that is what I wish of the providers and the professionals out there. I would just greatly appreciate that. And I know the ARFID community would as well.

Brianna Miluk: Yeah, I love that. And I'm glad that you emphasize the importance of learning from people with the lived-in experiences because like you said, like a textbook can give you the definition. The textbook can give you kind of like the hard facts about like this- this is a pretty good treatment to try for it.

You know, for example, desensitization exposures tends to be pretty far up there. Cognitive behavioral therapy, like those are the things you're going to read about, but that's not what's going to make the lasting difference, and that's not always what's needed to support a person's quality of life. And, you know, we have to really weigh that out with each individual person.

So, thank you so much, Cassidy, for sharing all of this. Now, we've mentioned your Instagram throughout but tell us a little more. Tell us about your Instagram, you know, why you kind of started on there. And then, you know, where people can find you. I know you're on TikTok as well. That's another one. So just kind of share, where can people find you? How did you get started on there? Tell us a little bit about it. 

Cassidy Arvidson: Yeah. I actually started my Instagram and my tick talk last year after I discharged from my six months treatment stay. I, I had my treatment stay at ERC in Denver. I'm open to questions that people like people always mentioned me like, Oh my God, like I'm going there.

But yeah, so I discharged from treatment and I just wanted to continue to share my experience with ARFID. I really- one aspect of treatment that I liked was I was able to share my experience for the first time with people who were actually willing to listen and willing to understand whether that be with my team or just with other patients.

So, it was like 30 other patients and we're all just like in this residential area. So, I get to tell them about my experience for the first time and then validate it. It felt validating. So, I wanted to continue doing that. I didn't want to go back to my life and just like hide in my own little personal shell.

And just like, have nobody know about ARFID except for the people who are in my life, just. Like obviously not as impactful as you know, the mass amount of people like you can reach online. So that's mainly why I started it. And it's, it's taken off a lot quicker than I, I thought, honestly. And I, I'm just really, really happy.

Like I said earlier, it's my, it's part of my, it's my mission to just like spread awareness on ARFID. And I just want to be a place where when you first hear of ARFID, my page comes up. I, my lived experience shows up and I just want it to be a safe place, a safe place for people to feel seen. When I first learned about what ARFID was from that YouTube video, I went to Instagram and to TikTok and I didn't see a whole lot. And I feel like especially for the younger community, I guess, is that the right word? I don't even know. The younger side of the world. 

Brianna Miluk: Younger populations. 

Cassidy Arvidson: Younger population, yes. They really, at least I really go to TikTok and Instagram for like validation, news. Like I learned so much from those platforms. So, I think it's really, really important to have people on those platforms to help educate people. So, and they also teach you quickly, which I, I got that instant gratification. I like need to like, learn like all this and like two minutes. So, I think that that's mainly why I started it. And I just wanted to share my loop experience.

And I also want to say like, If you do go to my page which if you're curious, it is @arfidawarenesss, but has three S's at the end. So, @arfidawarenesss and I, my page is not about like being recovery focused cuz I personally don't. For me, in my journey, I don't believe that ARFID or that recovery for ARFID is real.

I think that there is coping. But in my experience, I don't believe that there's something to recover. Like I've, because I've always just been this way. So, my page is all about being authentic and raw. And I do, I don't want to say I post triggering things cause that can come off like very abrupt, but like I do just, I'm just real with my struggles and I'm not filtered.

So, if that's ARFID. Like I said, my page, my Instagram and my TikTok are both ARFID Awarenesss, the three S's at the end, and yeah, I'm super excited that I got to be on this podcast. This was so fun. 

Brianna Miluk: This was so fun. I appreciate you so much, Cassidy, in sharing your story and like. You know, not only on TikTok and Instagram, but being open to sharing it on here as well, because I 100% agree that as providers, we need to learn more and more from people with lived in experiences.

And you know, that it can be limited and I, I don't expect people to always share, you know, their, their experiences, but I so appreciate you doing so. And thank you for going through my questions, all the things. I will be sure to, if anyone the links to some of the things we've talked about as well as Cassidy's page.

I will have them linked on the show notes on my website, pediatricfeedingslp.com/podcast. So, you'll be able to get those there. And yeah, I just, thank you so much for your time today. I'm so excited to to have this episode go out. Which when people are listening they're gonna know it's out right now, but I'm so excited.

Cassidy Arvidson: I'm so excited. Yes. And it's so ironic that Lauren's going to be at you said on the next episode? 

Brianna Miluk: Yes, I was, I can't believe that. Like just such, such small world for ARFID, which is why we have to really be. Be listening in and learning more. And like you said, don't just rely on your textbooks to tell you there's there's so much more to it. So, thank you so much, Cassidy. 

Cassidy Arvidson: Of course. Thanks for having me, Bri.

Brianna Miluk: Thanks for tuning in to The Feeding Pod this week. If you enjoyed today's episode, please don't hesitate to share this podcast with your friends and colleagues and leave us a five-star review wherever you're listening from. If you're interested in learning more about pediatric feeding and swallowing, be sure to follow Bri, me, on Instagram @pediatricfeedingslp, or check out my website where you can get access to more courses and information, www. pediatricfeedingslp.com. Again, thanks for being here and listening to my ramblings, and I hope you'll keep listening. Until next time, cheers.

 

• What is ARFID Video: https://youtu.be/JK9r14D4d-k
• Kevin’s IG: instagram.com/kevindoesarfid
• RDs for Neurodiversity: https://www.rdsforneurodiversity.com/meet-the-founder
• Lauren ARFID RD on IG: https://www.instagram.com/arfid.dietitian/
• ARFID Awarenesss IG: https://www.instagram.com/arfidawarenesss/
• ARFID Awarenesss TikTok: https://www.tiktok.com/@arfidawarenesss