In this episode of the Can I Have Another Snack? pod, I’m speaking to Kevin Jarvis about Avoidant Restrictive Food Intake Disorder, or ARFID - a feeding difference that presents differently for different folks but might be characterised by a relatively limited number of preferred foods, sensory processing differences, and fear of eating. It also often intersects with OCD, Autism and other divergent neurotypes. Today we’re discussing the things Kevin wished more caregivers knew about ARFID. Feeding differences are so often framed as ‘picky’ or ‘fussy’ eating and we are handed strategies to ‘fix’ the so-called problems. These feeding therapies — rooted in the medical model of health — can often be traumatic and lead to masking. But what if we viewed feeding differences through the lens of acceptance? How might we be able to better support and accomadate feeding differences? Kevin shares some insight based on their own lived experience - I hope it helps parents and carers of kids with ARFID better understand their experiences.
We touch on some distressing experiences around ED treatment and trauma in this episode, so please look after yourself and skip this episode if you’re not feeling up to it.
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Here’s the transcript in full:
Kevin Jarvis: And I got a dietician and within 20 minutes of talking to her, she's like, have you ever heard of ARFID? I was like, no. So we like went on a deep dive about that, what that was. I was like, holy shit, like there's a name for something i've been experiencing my whole fucking life. What?
INTRO
Laura Thomas: Hey, and welcome to the Can I Have Another Snack? podcast, where we talk about food, bodies, and identity, especially through the lens of parenting. I'm Laura Thomas, I'm an anti-diet registered nutritionist, and I also write the Can I Have Another Snack newsletter. Today I'm talking to Kevin Jarvis. Kevin, who uses they/them pronouns, is a mad, disabled, and queer artist from so-called Western Massachusetts, located on the Pocomtuc People's Land.
Kevin's art and activism speaks to their lived experience with mental health in an unfiltered way. They exhibit a passionate effort towards making the world a more accessible place for everyone, and their lifelong struggle with things like ARFID, chronic illness, and mental illness fuels this passion. When they're not painting, sculpting, making, or building something, they enjoy being at the Nubble Lighthouse, hanging with their cats, Tucker and Potato, which is potentially the best name I've ever heard for a cat, cooking, and getting lost in the woods.
So I asked Kevin to come onto the podcast to speak about Avoidant Restrictive Food Intake Disorder, or ARFID. A lot of you have been asking me for more content around feeding neurodivergent kids, and there's a huge overlap between ARFID and various sensory sensitivities and divergent neurotypes. So I wanted to speak to someone who had some lived experience to talk about the things that they wished more caregivers knew about this feeding difference. We touch on some distressing experiences around eating disorder treatment and trauma so please look after yourself and skip this episode if you're not feeling up to it.
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Alright team, here's Kevin.
MAIN EPISODE
Laura Thomas: Hey, Kevin, thank you so much for joining us. I was wondering if we could start by saying a little bit about yourself and the work that you do.
Kevin Jarvis: Yeah, so I'm Kevin. I'm from Western Massachusetts. I use they/them pronouns. Yeah, I'm just like a disabled queer content creator and chef and peer mentor. I do a lot of work around eating disorders in the trans community and like neurodiversity and eating disorders. More specifically talking a lot about ARFID. And what that is and what it means to be a fidder, which is a term I coined for people with ARFID. People have enjoyed it. So yeah, just like what it's like being a fidder and like how the world, and providers specifically, can do better.
Yeah, and i'm also a cat dad which feels important to always add.. Yeah, like I also have a wonderful fiancé but also…cat dad.
Laura Thomas: I love that's where you derive your identity. And I also love that you were the person that coined the term fidder, I think, for lots of other kind of neurotypes…there's like a cute little name for them. ARFID didn't have one until you came along, so thank you for that.
Let's maybe start by explaining what exactly ARFID is, because I think my audience might have heard me use that term or use the term 'feeding differences', but they may never have had it properly defined. So do you want to start by explaining to us what exactly ARFID is?
Kevin Jarvis: Yeah, I would first say to get rid of the DSM definition and don't go by that if you've never heard of it because it's all a lie. But ARFID stands for Avoidant Restrictive Food Intake Disorder, so it's this fear of eating or the concept, like the fear of the concept of eating, due to like textures and tastes and fear of choking.
So when I talk about ARFID, I break it into two categories. There's a few different categories, but like the two main ones are like having it from birth and like connecting that to your neurotype. So for me, I'm autistic and I think ARFID has just forever been in my life because of that. Not saying every autistic person has ARFID, but the crossover between the two is really large.
And then there's folks that like might have had a fear... like might have choked or swallowed something wrong or gotten really sick from eating and they developed ARFID later in life. So those are like, the first two ways I like to think about it.
And then I also think about it as like people that are avoiding certain foods, but still getting nutrition where that avoiding part comes in. And then the restrictive part... people are restricting a lot and not taking in a lot of food for the same fears, fear of choking, fear of all the textures.
Yeah, and there's also a large crossover of ARFID and OCD and anxiety and queerness and neurodiversity. Yeah, it's all one big population of things, but I would also add that in the DSM and in treatment centres, but I’ll also add that you can't have, quote, can't have body dissatisfaction with ARFID, and that's complete bullshit and it definitely can exist, especially if the crossover between queerness is there and neurodivergence is there. Like it's just unreal to say that you can't have body distress and a lot of people get misdiagnosed for that. So that would be my very short answer of what ARFID is.
Laura Thomas: Yeah, there's so much to unpack just in what you said there, but I think that point that you made at the end is that...often if we're looking at it purely through the lens of the DSM, we sometimes label people incorrectly with anorexia nervosa or another eating or feeding disorder because they have the body image component because that's how the DSM kind of pigeonholes people. Basically the DSM says that folks who have ARFID do not have body image disturbances, is the vernacular that they use. So it must be anorexia because... that has a weight and shape concerns component to it, but what you're saying is that you can have ARFID, you can have body image disturbances, and it's not anorexia or another feeding or eating disorder. It's still ARFID. Those two things can coexist together. People get misdiagnosed and then that has like huge implications for the support that they can access and get.
Kevin Jarvis: Yeah I was misdiagnosed as anorexic and there were definitely anorexic tendencies and you can have both. But I wouldn't say that was, like, the main issue so I did four or five months of treatment for the wrong thing, and it traumatised me, and scared me into foods and things that still affect me three years later.
You can have both, and also you can just have ARFID and hate your body that's also real.
Laura Thomas: Look at the culture that we live in, right? It's very difficult to not hate your body in the cultural conditions that we're swimming in.
Okay. Yeah. My next question was going to be, can you tell us a bit more about your story and your experiences with ARFID and how you figured that out? It sounds like from what you were saying, it's always been a part of you, but maybe you were told it was something else, I don't know. So I'd love to hear more about that journey and figuring out that this was ARFID.
Kevin Jarvis: Yeah, so I always grew up just being called a picky eater, which now I despise that more than anything in the world. And when people are like, picky eating and ARFID, no it's, it's like far more than just your average quote, picky eating. So I was just labelled as the picky eater, and...I don't know.
My childhood was pretty great with like food wise stuff, but the older I got and the more I, like, voiced my concerns, it was just…grow up, like you're older now. You should be eating more things, like this was cute when you were a kid, but you're an adult now.
So when it came time that everyone in my life was like, hey, I think you need to get some help get some support, I wasn't involved in the eating disorder world. So I didn't know how traumatic treatment centres can be. So I did go to one and yeah, I was misdiagnosed on the first day and the whole time I was there it was very like, okay, let's get Kevin weight restored which..whatever that…whatever...
Laura Thomas: Yeah, that's a whole other podcast.
Kevin Jarvis: Yes, let's get Kevin to where - quote - they should be and then we'll worry about some other stuff. And I just remember one day distinctively I was told that, like I needed to eat a bowl of Froot Loops and not separate them by colour and it's…okay, who is that harming? Who's being harmed by me enjoying just the silly little game? Like, I can not do it, but also it is calming, and who cares?
And it was just like, the whole time I was there, that was it. It was like, oh, let's get Kevin to eat their sandwich put together and not apart. And it's okay, but who's that actually hurting other than now me, and bringing it back?
So yeah, I didn't have a great time there and they were randomly ended up telling me it was time for me to leave and then they didn't set me up with a care team afterwards. They just dropped me off. I sent several emails, just never heard back from them again. So I had to figure my own thing out.
And I got a dietician and within 20 minutes of talking to her, she's like, have you ever heard of ARFID? I was like, no. So we like went on a deep dive about that, what that was. I was like, holy shit, like there's a name for something i've been experiencing my whole fucking life. What?
So that was only three years ago that I learned that there was a word for it and then I got dropped by a couple care people because there's just like... I mean, preaching to the choir, but like as you know, there's just like these golden standards that patients should be meeting in care and I wasn't meeting them because it wasn't like neuro affirming care and it wasn't ARFID affirming care so they were actually just making everything worse and when you don't hit their goals you're like labelled a liability and then you're just dropped.
So I was dropped a few times. I was like this is fucking bullshit. So I made my own Instagram page and was like, I'm going to create the space that doesn't exist. And now I run support groups every month over there. I've done a few trainings. I've done some consultations. But it's really mostly about building and fostering communities. So that's kind of where I am now and how that all came to be.
Laura Thomas: Yeah. Okay. Wow. The treatment that you received, it just sounds so horrendous, but I know that, unfortunately, it's not uncommon to receive that type of, and I'm using like air quotes, care, because it's anything but care. It sounds like when you found that dietitian that was able to tell you, actually, I think we're dealing with something else and this is what it is, that seemed to be so affirming. Whereas the rest of your treatment was not affirming and was not offering support and accommodations, which is what anyone with even just a drop of knowledge about ARFID would be pushing for. So yeah, I'm just so angry and upset for you that has been your experience.
I wonder if you could maybe say more about the intersection of ARFID and autism, because, when did your autism diagnosis come into play? Or is that something that, you've even had formally diagnosed?
Kevin Jarvis: Yeah, so when I was a kid, I think the vibe that kind of still exists is like diagnoses hinder you. So I wasn't diagnosed. And I still haven't been, because now that I know okay, first thought is like, there's so much to say, but my first thought is first of all, that's bullshit, and it wouldn't have hindered me, it would have made my life significantly easier and now that I'm an adult, I'm like, okay well, It's harder to adopt children if you have an autism diagnosis.
There's like certain countries you literally can't even go to if you have a diagnosis. And there's so much stigma that I'm like, I'm glad I don't have a diagnosis. And also, it would be really affirming and nice to have a diagnosis.
Laura Thomas: It’s so complicated, like that whole, whether it's ADHD or autism or Tourette's or anything that falls within the neurodivergent umbrella, like it's such a complex mix of whether or not to get a diagnosis. Because as you say... for some people, it might open the appropriate doors for support and care but by opening those doors, you might be shutting other avenues of possibility. So like, oh, it's such a head fuck to sit with. Do I/don't I go for a diagnosis?
Kevin Jarvis: Yeah, like you're telling me I can't adopt children because I'm autistic? That's wild. So yeah, I don't have a diagnosis, but self diagnosis...
Laura Thomas: Oh, it's totally valid.
Kevin Jarvis: Yeah.
Laura Thomas: I'm conscious that parents might be listening and another sort of thread of this is around medication and that being like a form of support that you might not be able to access. Now, we could debate, the merits of medication as well.
And whatever, it's just trying to encourage people to conform to neurotypical capitalist bullshit standards. And at the same time, they can be a really helpful support for folks. So yeah, I just want to give that like side note.
Kevin Jarvis: Yeah, and a side note is that A lot of people with ARFID if they are autistic, their muscle tone is pretty bad and like I could easily get OT and speech Therapy right now, which I need if I had that diagnosis. So again, it's just like... it's all bullshit.
But yeah, so I would say like some of the main differences with autism and ARFID is like the fear is really different. So there's foods I don't like just because the texture is weird, but it doesn't terrify me to, like, have it around me. So that is like more just the autistic piece. And then the ARFID is just like literally the fear of eating, which is like so scary because you have to do it and like the work it takes to eat and like stuff like that.
Laura Thomas: I suppose what I'm hearing you say is that when it comes to food specifically, they manifest slightly differently, but in an overlapping way, it sounds?
And I was wondering, if you could speak to maybe any other clues, as it were... maybe growing up in your childhood, like you said that people labelled you as picky, which we've established as a problematic phrase, but I'm wondering for parents of kids... who, they're not sure like, is this just, your garden variety, picky eating from toddlerhood? Or is there something that might warrant some more support and help? If you look back, what were those sort of red flags for you in your childhood?
Kevin Jarvis: Yeah, I think with ARFID, it's just I was so afraid to eat things. So like an example would be like, I enjoy my food separated, I think that’s a very ARFID-y thing, but it could also be like an autistic thing, separating and sorting things is very calming. But the difference is if you give me a plate of everything touching, it's ruined now and I'm not going to eat it, while an autistic kid might just like divide it how they like it.
Everyone's different, but those are like, that would be my first example. And like, eating around people too. You have to look like, is your kid afraid to be around people because the sensory overload? Or are they afraid to be around people because there's food? And now they have to make decisions about what they want to eat, and they have to eat in front of people.
And another one is like I've always eaten with my fingers. I enjoy eating with my fingers and it's not because it's just like I enjoy it sensory wise which might be an autistic thing. It's because I need to know what is happening in my food and I need to be in control of what is happening with my food and if I'm eating with a fork there might be something hidden, which I think we're gonna talk about later, about lying to your children.
Laura Thomas: Yeah, for sure.
Kevin Jarvis: That was my experience, so now, as an adult, I enjoy picking through my food with my fingers. Just, it makes me feel better. So it's the anxiety...is your child doing it because it's calming? And are they self soothing, or are they fucking terrified?
Laura Thomas: They're trying to find safety, it sounds like. That pulling food apart to make sure that there's nothing hidden in it…that to me sounds like trying to find clues that the food that you're about to eat is safe. And I think there's a part of that as well that's just a sort of human instinct like... my three year old, who, as far as I know, is neurotypical, he will often want to sit on my lap and eat my food because he's seen me eat it and he's like, well, if it's safe for you to eat, then... I trust you, so it's safe for me to eat.
So side note for parents who have, like, toddlers and preschoolers who just constantly want to sit on your lap while they're eating. That might be why. But yeah, it's about that felt safety piece that is, is like just so fundamental when we're feeding ourselves or feeding other people.
So you kind of alluded to some of the stuff that we're going to talk about. And basically, I wanted to talk to you about a post that you had written where you cover six things that you wished caregivers understood about kids with ARFID, which I'll link to in the show notes. But I thought it was such a great summary that I wanted to go through it with you today, so we'll go through each of the six points that you make and just break them down.
So let's start with number one, which is that your child deserves autonomy no matter what. Can you say more about that?
Kevin Jarvis: Yeah, so autonomy is like self government and making your own choices, and being in control of your own life and that's something most adults have, not everybody but it's like in regards to food, like you decide what you're going to eat, and you decide how it's cooked, and you decide when you're eating it, so it's kind of the same idea as that like, your child deserves the same thing. And like children know what they like and they know what they don't like. And it's just super fucked up to be like this is what is happening and this is what we're doing and this is how it's being done and I don't really care.
And also this, forced oh, no, you like it. You do like it. You like it and it's like... how do you know that though? Like just because you like something doesn't mean your child's gonna like it so... the idea is like giving your child autonomy and like giving them... obviously not like free rein of the kitchen But like a step would be like…four options put in front of them. There you go. Now they have autonomy and what they're and like where you want to sit like these are the options of where you can sit or like these are the options for dips and like small steps like that and then eventually letting them make, like, help you make their grocery list and like help you grocery shop and have their own input and like... well, we need yogurt. So what kind of yogurt would you like? Yeah stuff like that autonomy and your children deserve it. They're like whole people
Laura Thomas: Yeah. There's obviously... like you said there, there's a practical aspect of this that like, like young kids, especially little kids cannot go to the store and buy whatever or cook whatever they want, right? So there's like a part of this that, obviously, parents are going to have to be responsible for some of that decision making. But within that, where can you give them a sense of control, a sense of ownership over what they're doing?
And that's why I talk so much about responsive feeding, one of the, like, the values of responsive feeding is autonomy. And so... there can be little things I've done a post, maybe probably a few posts that I'll link to in the show notes about this, but, things like family meals, where, if we put out various different options and let them put it on their plate for themselves, give them some control, give them some ownership.
But the other piece that I'm thinking about here is also the bodily autonomy piece of respecting and honouring appetite. And if a kid says, I'm full, I'm done, and they've had two bites of, I don't know, rice, we have to also trust that piece and not override their hunger and fullness cues by saying, no, you haven't had enough to eat or you haven't eaten the right things or you need to eat a vegetable or whatever it is.
Kevin Jarvis: Yes, it was very much like, growing up like, well, it's dinner, or you're just gonna go to bed hungry, or you can have peanut butter on toast. Oh! So because I don't like the food that you are making, I have to like, fucking starve for the night, and I'm not, again, not saying like, open up the pantries and let children run free, but also, yeah... Set mealtimes for a lot of autistic people, introception and like knowing what your body is wanting doesn't really exist. So for some people, yeah, like a very structured meal time can be very helpful. And then for other kids, like they just need to fucking graze all day and have meals on their own time.
And it's okay to, like, leave food out. And that's like the chef part of me coming out. I'm like, how long you can leave food out and like stuff like that. And you can leave food out for a while and let them make their own decisions. Yeah, it's wild that parents are just like, no, you're not full. And it's oh, you're inside my body? You know what I want?
Laura Thomas: Yeah. And I think what you're talking about is that a lot of advice in the kid feeding space is geared towards, like Ellyn Satter's division of responsibility, which says you have to have set meal and snack times, which for some kids is super helpful. Like the predictability, routine.
And the idea there is that if a kid doesn't eat much at one meal or snack that like another meal or snack is coming up fairly soon so they can afford to kind of like mess up a little bit because there will be something else there. Like, I don't think there's anything inherently wrong with that, providing that there's some flexibility, right?
But what I see is it being so rigidly applied and weaponised against people to say you should have eaten more at dinner time. We just had dinner. And kitchen's closed or whatever Instagram tells us to say to our kids.
And I think the key thing for me is that every kid is going to be different as to the level of structure versus flexibility that they need. And even with my own kid, who again, probably is probably neurotypical is like…even that varies, like, from day to day, the amount of structure versus, like, freedom he needs.
So yeah, super kind of nuanced conversation, but again, why like the response to feeding model can be really helpful because it encourages us to look at the individual kid right in front of us, rather than follow some rigid rules that some white lady made up in the 80s... we don't need that. Like, parenting has evolved, our understanding of neurodivergence has evolved. We know so much more than we did in the 80s. So we need to update these models that we're using to feed our kids.
Okay. Number two is that your child isn't being dramatic or seeking attention. I love this one. Just let me know your thoughts on this.
Kevin Jarvis: Yeah. So I think I always relate things back to myself. The panic attacks I would have over like, a meal having tiny pieces of onions in it and just being, like, called dramatic and told to suck it up, which is just like, rude and a lot of sexism and gross things. Your fears and your anxious thoughts are valid and so are your kids'.
And like in the post I wrote about like… imagine you just wake up and the thing that literally keeps you alive brings you so much anxiety and like... your child probably hasn't been to therapy yet for it and doesn't have the language to use for it. And they're just so fucking scared. It's just like how can you say that's not like real or that they're seeking attention and like being dramatic. That's just bullshit. They're not seeking attention. They're fucking scared.
Laura Thomas: Yeah. for a lot of kids, ARFID is like any other phobia, right? We're effectively like putting a tarantula on their plate and being like, here, eat this. And I think what you're saying is...that their emotions and experiences are valid, and I think the thing that's…the irony in it is that if we are to validate people's experiences, it helps bring felt safety to their body, which is going to make it easier for them to eat.
So by invalidating their experiences, we're actually making the situation so much worse and making it so much harder for them to nourish themselves. Yeah, it's such an important point.
The third one that you picked out was: lying about food creates a lack of trust and comfort with caregivers. I actually recently did a post about why we need to stop hiding veggies in our kids' food, but I'd love to hear your thoughts on this.
Kevin Jarvis: Yeah, so again, bringing it back to myself, that was something that was huge in my life. I remember asking my parents, is there X, Y, and Z? Usually it was like onions and mushrooms because canned food a lot has like little chunks in it. And they would just look at me and say, No. And it's just okay, now I trust you. You're the adult I'm supposed to trust. I can't make my own food.
And then you go to eat. And now everything involved with that meal is now on my shit list and I'm terrified of it and anything I see...I mean as an adult I've worked a lot back into my diet, but I still like... now it like creates so much anxiety that like my fiancé who would never a day in their life lie to me I asked them during mealtimes.
I'm like, hey, what's in it? Did you put X, Y, and Z and they don't get angry? They're just like, no, bub. There's none of that in there. I'm like 25 years old now and something that happened in my childhood is now causing so much anxiety in my adulthood. And it's just…why do you have to lie? Like, why can't you just be like here's what's in the food or put it on the side and just be like here's what I was gonna put in the food maybe next time we can actually work on putting it in the food. So yeah, just like why are you doing that and now I don't trust adults.
Or, like, when I go out to restaurants I usually get the same exact thing because I've had it and I know it's in it and I know that there's not going to be anything weird hidden in it. It's little things like that are going to affect your child literally for their entire life. It's just like what, why lie? Why can't you just be honest? You wouldn't like, lie to your fiancé or like your loved one and be like, Oh no, there's nothing in there. Your kid is smart! Your kid can find what’s in the food.
Laura Thomas: They will figure it out, especially because, like, kids with ARFID usually have such, like, sensitive palates, right? When I spoke to Rachel Millner for the podcast - I will link back to her episode - she talks about how she took, like, packets of chips out of their bags and presented it to her kid. And they were able to tell the difference…the same flavour of crisp but just different brands. And they were able to tell you like which one was which and there was one that they clearly liked and one they clearly didn't like and to her, they tasted exactly the same but kid there's a clear difference. And so basically what I'm trying to say is if you're lying to them they will know and it's also again counterproductive to actually helping them feel safe around food and helping them, you know, find ways to nourish their body right because like we have to do that one way or another.
By lying to them, you're making it less likely that they will be able to do that in a safe way.
Kevin Jarvis: Yeah, there's a word for that also, and you can get little test strips on Amazon to check if you're a super taster. It literally means you just have extra taste....like it scientifically we can tell the difference. Like we shop at BJ's which is like our whole food, wholesale food, whatever store
Laura Thomas: Yeah. Like a Costco kind of situation. Yeah.
Kevin Jarvis: We got Ritz Bits, which are... were one of my favorite crackers. We got them in like the large bag with mini bags And then we went to a different...I think we went to Walmart a few weeks later when we ran out of those…same thing, completely different fucking taste. My fiancé was like It tastes the same. I was like, no, you're not going to look me in the eyes and tell me that the cheese tastes the same in this one! And they're like, you're right, sorry, to me it tastes the same. I hear you and I'm validating you.
Laura Thomas: There's like a genetic component to that as well, right? The super taster gene.
The next thing that you had on your list was that sitting at the table three times a day is overwhelming and a neurotypical standard. Can you unpack that for us a bit?
Kevin Jarvis: Yeah. In treatment centres and like in most homes, I feel like sitting at the dinner table and being present and aware, usually with family, is really common, and nobody else can see me right now, but like I'm constantly moving. I'm always in motion. My body is never not moving. So for that aspect, it's just under stimulating to just sit at a table and then the mindfulness part of no, I cannot, and mindfulness is like a whole other thing that people think is supposed to be in eating disorder recovery. It's... no, if I am aware and present and like only focusing on my food, I'm only focusing on my food. And that is so, like, anxiety provoking, like I need to be like watching tv or on my phone and like sitting down and like also now you're comparing, you're like opening up the floor for comparison. It's, oh well my dad and my brother are eating this way and now iIm eating this way and i'm wrong and I'm the weird one and I’m the outcast so just sets like a lot of expectations.
Like when I was in treatment I had a puzzle next to me at the meal table and once in a while I would have to get up to move a puzzle piece and put it where it was and that was a eating disorder behaviour because I wasn't like focused on my meal. And another time I left my computer somewhere and I was just pacing around because I was under stimulated and needed to be doing something and they're like, oh no, you're trying to lose weight. You're trying to like, weigh out the calories in your food walking. It's no, I'm autistic and I need to be fucking moving, otherwise I'm going to implode and have a meltdown.
These standards are so harmful and also so silly. You're only gonna talk to your family at the dinner table? Like, why can't we all go do an activity or take a walk together or be sitting in the living room? Like, where did this come from? Why are we doing it?
Laura Thomas: But there's a lot that we could say about the standard of the family meal and, again, it's complicated because for some families, it is really like this place that they come together at the end of the day, and it's like, there is no pressure around the food and it can be like, whatever this wholesome experience. And for other families, it's a complete fucking nightmare.
Like I'm thinking again about my three year old and, even he needs to take body breaks at mealtimes, like he needs to get down, run around, go check out his toys and come back. And he does that a lot while he's eating. So I think that there is something like just inherent for probably most people. It feels good to get up and move around and take a break and come back.
You know, we just assert these standards, these, like, really violent standards over how people should show up at the table. And I think so much of it has to do with capitalism as well, in terms of the three meal a day structure, right? I feel like that was born out of…okay, I need to eat something before I go to work. And then I only have this one break in the middle of the day from my work. And then I have to go back and sit at my desk or do whatever labour is. And then I can't eat again until I go home. And so that's like where the three meal a day pattern comes from.
Kevin Jarvis: Capitalism!
Laura Thomas: Capitalism! It has so much to answer for.
So yeah, I think what we're saying is that first of all, sitting at a table is bullshit for a lot of people, and secondly that's that three meal a day structure. For some people, it does work, but not for everyone.
Number five is a big one. I think for parents to hear, which is: you haven't done anything wrong and you're not a failure.
I think so many parents that I speak to blame themselves for their kids' feeding differences. Because there's so much pressure to feed our kids so -quote unquote- perfectly and there's a lot of healthism and ableism and, I think white supremacy, built into these standards.
So yeah can you talk a little bit about how parents don't cause their kids ARFID? But also how there are things that they can do that might exacerbate things and make things worse for their kids?
Kevin Jarvis: I mean, I definitely think there's like maybe a 5% chance that you've caused your kid or your kids ARFID, because if you've lied to them a bunch, or say you didn't cut something up small enough, and they choked and now they're afraid. So there's very small instances.
But if you've done everything in your power. to treat your kids well, um, and to like love on them, then yeah, you haven't done anything. Some people are just born with it, like you haven't caused their autism, you haven't caused, like, their ARFID, that's just not a real thing. And I think giving yourself compassion is not only important for you, but also for your kid, because if you're just walking around just like very mopey, like everything is wrong, I did it, first of all, now your kid is going to feel guilty back towards you and like themselves. If you're just gonna walk around and just do this whole, woe is me act, which obviously is very comforting. And sometimes you just have to be in that headspace. It's just not giving the best message for your kid and It's more of just okay,this is the reality of the situation. This is what's happening and now what can I do to, like, help in like aid and meet the child where they are and like be there and be supportive. So yeah I think it's important not to blame yourself, a) because you deserve compassion and like kindness towards yourself and like you didn't do anything and like it's just putting a bad vibe in everyone's mouth when you do things like that.
You have to take a step back and be like, okay, what is right and wrong, and why does food have moral value, and where is this all rooted in, and it's like a lot of internal work. So yeah, it is easier to just be in like a very woe is me kind of place. But you can also be in a very, okay, this is the reality of the situation, here's what we got to do moving forward, here's how to get rid of and step out of these normative ideas that have been put on.
Laura Thomas: I have so much compassion for parents. I think because I'm on that side of the…divide as it were now, because there is just this just wild indecent amount of pressure on parents to feed their kids in a particular way.
And there's also something I think about, survival and, like, feeding your child is such a, like primitive, fundamental aspect of being a parent that if we feel like we're not doing that properly, as it were then, you know, it touches on something really deep inside us. The problem is that there's such a disconnect right between what we actually need to thrive versus what diet culture et cetera, et cetera, et cetera, teaches us is like the right way.
I walked past a birthday party, like in the playground a couple of weeks ago. There was, like, number three balloons up. So it was like a third birthday party and I just walked past this, this table that was literally just wall to wall with, like, strawberries, blueberries, blackberries, raspberries, like that was the party food.
Kevin Jarvis: Yeah?
Laura Thomas: And don't get me wrong, I like berries, but I don't only want to eat berries and I don't know any three year old that only wants to eat berries and think that's like a satisfying meal. But that's the standard that a lot of parents are trying to operate to.
So if you're a kid, which you know, for all the reasons that we've talked about today, like safety, texture, just deliciousness, like if they're only eating crackers, of course, you think, oh, I fucked up here. I'm a total failure because my kid only wants to eat, like, cheesy crackers. I can understand why it happens. And there's also so much...from the feeding community about, oh, if you give your kid green food, like broccoli and kale, when you're weaning them, then you can, like, train their palates.
There's so much that's really problematic about that, but these are the messages that parents are getting. So again, if their kid is…either they're going through the food neophobic developmental stage, or they're neurodivergent, or have ARFID, of course it's going to, like, be a huge disconnect for them.
Kevin Jarvis: I don't talk much about children 'cause I feel like well, like parents take everything you say very seriously. And I don't wanna affect a tiny child. But my friend Lauren - her handle's @ARFID.dietician. She's fantastic and she just did a post and she's gonna keep doing this series. The last one she did was five beige foods that give you all the macronutrients.
Laura Thomas: I saw that. Yeah.
Kevin Jarvis: There are ways to like, eat and your child could still live... yeah, the whole you have to eat fruits and veggies, and you have to do this, and you gotta fill the five things. No, your kid can, like, eat cheese crackers and like chicken nuggets and French fries and like beige things. I always joke about a lot of people that are just eating beige and like, I'm alive!
Get your kid what they need without forcing, like, diet culture on them, yeah.
Laura Thomas: For sure. And I think that's really where neurodiversity affirming nutritionist or dietitian can really come in and help you like, okay, let's just at minimum, make sure that all your nutritional bases are covered, whether that's through, okay, they will eat this and that preferred food. Okay, perfect. That meets that requirement. And here's how we can fill the gaps with the supplement.
And we'll get onto this in a second, probably, but then thinking, as the child feels comfortable and ready and willing in a child led way, we can start to explore new foods. But it has to be led by the child, like it can't be someone…like, particularly a neurotypical person being like you need to eat X, Y, and Z, so I'm going to make you sit at this table and you have to try it. You have to lick it, bite it, sniff it, whatever, stick it in your ear, like whatever it is before we're going to let you get away from the table.
Where I guess my head is that there is, is with the treatment aspect of ARFID. And the last thing that you said in your post is that sometimes there isn't a fix or a cure, and that's okay. But so often parents and families are, like, siphoned into feeding therapies and like CBT and all kinds of different therapies. And some of these things have their place. Others don't! So I'm wondering if you could just talk about the concept of like, cure within ARFID.
Kevin Jarvis: Yeah, so something I talked about, I don't think it was this post, but another post was like, you simply cannot cure my autism, so you are just not going to be able to cure my ARFID. They're so intertwined, and if we look at ARFID as a neurotype, which Naureen over at RDs for Neurodiversity talks a lot about how ARFID is like a neurotype, and it is a feeding difference. and it's just like, It is what it is, kind of, in a sense. Like you can't always fix things, and if the child wants to, like you said, they can slowly start incorporating more things but like…end of the day sometimes it is just what it is and that's life.
And then when you introduce…like, first of all, fuck ABA, no place for it anywhere.
Laura Thomas: Just for anyone who doesn't know what that is, just so they look out for it…what is ABA?
Kevin Jarvis: Gosh, what does it stand for...Applied Behavioural…?
Laura Thomas: Analysis.
Kevin Jarvis: Analysis. Yes. The way I describe ABA is like forcing your child to be neurotypical and like suppressing their, stimming and suppressing their autism and making them mask, in a lot of ways sneaks in, it's just like reward systems are very like, laced with ABA, I say. Okay, if you eat five bites of your preferred or five bites of this new food, then you can get like your preferred food. Or they can eat their preferred food when they want and try new foods when they want to.
Another thing with ABA is just like you have to sit at the table and you must eat and that's the rule. If you get up you're in trouble, like you did something wrong like,. Quiet hands is something you hear all the time with ABA like when kids are like flapping their hands or just like rocking back and forth... calm body and calm voice. Or they can like stim and self regulate, that way they can try new foods and they don't end up like being traumatised and like suppressing their shit.
I always also relate it to like Tourette's, when you hold back your tics you're just gonna fucking explode later on, so when you like suppress stimming, or you like, you suppress the way you like to eat, and it's just gonna come out in a giant shitstorm later, so why not just meet the kid where they're at, and like you said, child led is the only way to do it, and exposure therapy is kind of bullshit, in a sense, if you're not doing it from a neuroaffirming lens of like, okay, like you said lick it, smell it, put it in your mouth. Be with it. Take it out on a date. None of that makes sense. Explore it how you want and eat it if you want and don't eat it if you... yeah, child led is like the only way to go.
Laura Thomas: Yeah. So, there are a lot of therapies that…like SOS, ABA, like some other feeding therapies…that are effectively teaching kids to suppress, their natural instincts to mask and they're based on coercion and bribery and they're really traumatic for kids.
And as I think you're saying, Kevin... the more that we try to force kids to assimilate to neurotypical standards, a) the more trauma that we're going to cause and b) the more that we're going to see... let's say that the kid goes to school and kind of is a, like a good little neurotypical kid all day. Then they're going to have meltdowns and be explosive at home.
So it's going to, it's going to find a way to come out. Whereas if we were to meet that child with accommodations, with understanding and acceptance... maybe it means that they bring a lunch from home and get to eat it in their own little space away from the main dining hall or whatever.
There are different approaches. What that's going to look like for different kids is going to be different. But trying to force them into assimilating to neurotypical standards is never. going to be the solution, because like you said, ARFID is not something that we should be trying to treat or extinguish or exterminate. It's something that we need to find ways to work with and to support kids with.
Kevin Jarvis: Yeah, yeah. There's just... sometimes there's just no fix and that's life, baby. I think it's just like, also this, like, standard for eating disorders that like recovery is possible, recovery, recovery. And it's…first of all, now I feel like shit because I'm never going to meet, like, the golden standard to what recovery and like healing is supposed to look like.
Can we just reword and re imagine what recovery looks like and what ARFID recovery looks like and recovery in general. But yeah, when you're like, going to treatment, and they're like, oh no, you can get rid of it! You can get rid of ARFID! Now you're just like, showing me that I can get rid of a part of my brain that has always existed, and now you've put the expectation in a child that like, they can recover it, and then when they don't, now all of their self confidence is gone.
Laura Thomas: Yeah, it really sets them up to, to fail, doesn't it? Which is like, nobody wants that for their kids.
Oh, Kevin, it's been so interesting to talk to you and I'm…like, I know that this will have given so much insight to parents who maybe haven't experienced ARFID or maybe parents who are now figuring out that actually I have ARFID too. That's what's been going on for me.
So at the end of every episode, my guest and I share what they have been snacking on. So it could be anything, a show, a podcast, a literal snack, whatever. So I'd love to know, what have you been snacking on lately?
Kevin Jarvis: I picked two. The show, me and my fiancé have been watching Tiny House Hunting, which is fantastic because we want to buy a tiny house eventually. And then my snack has been feta cheese with pasta and Greek dressing just mixed together
Laura Thomas: Oh, that's like basically what I had for my lunch. That’s hilarious.
Kevin Jarvis: Oh my god, yeah. So it's still considered a pasta salad because everyone's like, that's not pasta salad, there's no veggies in it. Fuck you, it's pasta salad. It's pasta with two other things, it's a salad.
Laura Thomas: It's cold. It's a salad.
Kevin Jarvis: it's cold.
Laura Thomas: That sounds really good. So yeah, my pasta salad had cucumbers in it. Not that I'm like bragging, but it was a recipe from Sohla El-Waylly…I love her. She's just really cool. So just shout out to Sohla.
My snack is the TV show Somebody Somewhere. I don't know, have you seen it on HBO? So the premise is that um, this woman goes back to her hometown after not having lived there for a really long time because her sister is really sick and her having to just, like, navigate loss and grief and friendship and queerness and everything, like it's really tender. It's very funny, hilariously funny to the point that, like, you think you're watching a comedy and then it like totally catches you off guard with, like, feelings and I've cried a lot. So I just finished the second season. I think the third one is coming out. So it's HBO or Sky Go if you're in the UK and I think Tiny House hHunting... is that on Netflix?
Kevin Jarvis: Hulu.
Laura Thomas: Hulu. Okay. I think I've seen it on Netflix in the UK, at least. Or Hulu, if you're in the States.
So thank you so much, Kevin. Can you tell us where people can find out more about you and your work?
Kevin Jarvis: Yeah, I'm over @KevinDoesARFID on Instagram and then I recently made a Facebook page for people with ARFID and…
Laura Thomas: I thought you were going to say for boomers, but you didn't.
Kevin Jarvis: No, I could if that's like a need, because I know a lot of people, like, have been wanting to access my content but haven't been able to. So working on a website, am working on a website, but for now just over on Instagram.
Laura Thomas: Cool. I will link to your Instagram and your Facebook in the show notes. And thank you so much for the work you do and for being here.
Kevin Jarvis: Thanks.
OUTRO
Laura Thomas: Thanks so much for listening to the Can I Have Another Snack? podcast. You can support the show by subscribing in your podcast player and leaving a rating and review. And if you want to support the show further and get full access to the Can I Have Another Snack? universe, you can become a paid subscriber.
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Can I Have Another Snack? is hosted by me, Laura Thomas. Our sound engineer is Lucy Dearlove. Fiona Bray formats and schedules all of our posts and makes sure that they're out on time every week. Our funky artwork is by Caitlin Preyser, and the music is by Jason Barkhouse. Thanks so much for listening.
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