What is ARFID Anyway?

By Ellie Pike & Michelle Jones

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Today, we investigate Avoidant Restrictive Food Intake Disorder (ARFID) - a diagnosis that can be as confusing as its name suggests.

But fear not! We are lucky to have Dr. Michelle Jones as our guide. As a clinical psychologist who studied ARFID since it first became a diagnosis, she's uniquely qualified to distill years of research into succinct explanations. Together, we unpack all the fascinating ways ARFID affects our relationship with food, plus what to do if you or someone you love is diagnosed with it.

Transcript

Dr. Ellie Pike:
One of the most common themes when it comes to eating disorders is that they're often misunderstood. Think about it, pop culture's idea of a person struggling with an eating disorder is usually a thin, young, white, cis-gendered female who is overly focused on appearance. But let's be real, we all know that's rubbish. The truth is that the world of eating disorders is weird.

For example, think of all the complex reasons and connections that exist in your relationship with another person. How you feel the way you do about them is often a mystery even to yourself. Now, just replace that relationship to another person with your relationship to food. At the end of the day, untangling eating disorders means understanding this connection, everything from the taste, texture, and physicality of what's put in our mouth to all the ways it affects how our body feels, looks or feels like it looks to the complex social structures and identities we've built around meals. None of it is simple.

And for today's episode, we are investigating a category of eating disorders that even challenges the preconceptions of professionals who work in the field. I'm talking about avoidant restrictive food intake disorder, ARFID for short, a diagnosis as easy to understand as its name suggests. Obviously we need a little help sifting through the research. So I called up someone who has extensive experience treating ARFID. Meet Dr. Michelle Jones.

Dr. Michelle Jones:
Hi, I am Dr. Michelle Jones. I have a PhD in clinical psychology. My areas of specialty are primarily within eating disorders and within that I have a special interest in avoidant restrictive food intake disorder or ARFID.

Dr. Ellie Pike:
With Dr. Jones as our guide we will spend today deepening our understanding of ARFID, what it looks like, who it affects, and what to expect when you or someone you love is diagnosed with it. You are listening to Mental Note podcast. I'm Ellie Pike. Thank you so much Dr. Jones for being here. We're really looking forward to this conversation. I really want to know how you got interested specifically in this sect of the eating disorder realm.

Dr. Michelle Jones:
Yeah. I am really very passionate about this particular topic. It was something that I didn't have a lot of exposure to in my graduate school years. ARFID actually became a formal diagnosis while I was in graduate school and I didn't have exposure to it in the form of clinical work or research and until I was a pre-doctoral intern at UCSD. I was really fortunate there to work with some of the leading researchers and clinicians who are familiar with ARFID and really spend a lot of time working in that.

My two-year postdoc in the pediatric clinic that had a large proportion of patients who have an ARFID diagnosis and I really got a lot of intensive hands-on experience working with ARFID patients and just fell in love with it. I really just feel so deeply for the experience that many of them have before they get into treatment. It's just such a long road to make it into our doors and then to actually get to work with them and use really creative interventions and get to do something that's kind of outside of what people think of as the norm within eating disorders is just so exciting and interesting to me and it's just such a unique and fun patient population to work with.

Dr. Ellie Pike:
Dr. Jones, I just really appreciate the compassion that you bring to the table and that you can empathize with the personal experience of someone who is dealing with ARFID. And it's something that our community and even providers don't know much about and I'd love this podcast to be an incredible resource for them so that anyone can understand what ARFID is just in layman's terms.

Dr. Michelle Jones:
So ARFID, avoidant restrictive food intake disorder, is an eating disorder characterized by people not meeting appropriate nutritional needs due to a couple of different reasons. The first of which is sensory sensitivity, so limiting what you're eating based on the sensory properties of food. Most commonly this is taste or texture, but could also be things like temperature or color or anything like that.

We will also see individuals who restrict their intake due to a lack of interest in eating or really just a low reward response to food. They really don't enjoy eating the same way that those of us who are normative eaters do. They don't look forward to eating and their body really isn't giving them the same level or intensity or frequency of hunger cues that other people might experience, and so they tend to not eat as often and they don't find eating super enjoyable.

So it just kind of becomes a chore that they often will avoid and are eating less frequently than people who don't have the subtype of ARFID. The last subtype that we see is called fear of aversive consequences, and these are individuals who have experienced some kind of trauma related to eating or perceived trauma related to eating and then restrict their intake in order to prevent that perceived traumatic experience from occurring again. So we're looking at things like vomiting or choking or allergic reaction or fears of contamination or something along those lines.

Dr. Ellie Pike:
So is it solely that they're not concerned about their body shape or trying to lose weight intentionally?

Dr. Michelle Jones:
That's the primary distinction between ARFID and other eating disorders. So if we think about something like anorexia, the driving force behind anorexia in a necessary element of anorexia is some kind of disturbance in body image or overvaluation of shape and weight. And we're seeing an absence of that. So it doesn't mean that there's no body distortions whatsoever, it means that they're not crossing a clinical threshold into something that's driving the restrictive behavior.

So somebody who's restricting their eating because they're trying to lose weight or because they're worried about their appearance would not meet criteria for ARFID. They're actually excluded from the ARFID diagnosis for that reason. Somebody who is restricting their eating and maybe they're concerned that they're too thin or maybe they're concerned about their weight in the same way that all other 16-year-old girls for example might be concerned about their weight, somebody who's kind of more in that category could still meet criteria for ARFID as long as that's not the reasoning behind their restrictive eating.

Dr. Ellie Pike:
So as we talk about this restrictive eating when it comes to ARFID, who does it affect? Because in my mind I automatically go to children, but is that actually the case?

Dr. Michelle Jones:
It's not the case. We do see this a little bit more commonly in younger kids compared to other eating disorders. Anorexia for example, we tend to see kind of a bimodal distribution. And when this is coming on, we'll see this come on in preteen years or very early adolescence.

We're going to see it come on again during later adolescence entrance into adulthood. It can certainly happen other times, but those are kind of the primary times when it pops up. We'll see ARFID in kids as young as five or six years old all the way through the lifespan, so it doesn't exclude anyone based on age. Although when we look at kind of the research data, we do see the distribution leans a little bit on the younger side. The average age of a patient with ARFID is typically a little bit younger than a patient with a different eating disorder diagnosis.

Dr. Ellie Pike:
While ARFID seems like it's in its preliminary stages where it hasn't been a diagnosis for a long time, is there data on the prevalence of ARFID?

Dr. Michelle Jones:
There is some data on the prevalence of ARFID. It's not great. The studies that I've taken a look at really estimate it anywhere from I think around 0.5% of the population up to about 3% of the general population. Our more solid evidence comes from looking at treatment populations. So in general, looking at higher levels of care, we're seeing up to about 22, 23 percent of our patients with an ARFID diagnosis. So roughly a quarter of our patients sort of across the board in higher levels of care are coming in with an ARFID diagnosis.

Dr. Ellie Pike:
For a lot of people, I imagine actually understanding that tipping point between picky eating and ARFID is difficult and requires understanding what the differences are. And for a lot of families and individuals, I think it would be really beneficial for them to know what to look for. Can you speak to that a little bit?

Dr. Michelle Jones:
Sure. I think that's a really important distinction to bring up because it really feeds into the experience that a lot of patients and a lot of families have actually receiving the diagnosis and then receiving appropriate care for the diagnosis that they land with. When we think about kind of normative development in terms of eating and acceptance of new foods from infancy up into early to middle childhood, we typically see most babies and young toddlers are able to kind of seamlessly make that transition with a few hiccups.

I mean, there's a variation with kids during that time period, but most of them pretty seamlessly and kind of routinely incorporate solid foods and make that progression from an all liquid diet into a fully solid food diet. And then we'll see kind of an uptick and pickiness around age three. There's some variation in that, but that's usually where we see toddlers that ate everything or most things when they were younger will then start to become more picky as their taste buds go through normative changes.

And then we start to see that by preteen years we'll tend to see that variety start to expand back out. And taste buds change every so many years, right? And so we'll see kids kind of develop in terms of their brain functioning and they'll just mature and their taste buds change and they'll start to be more open to trying new foods by later childhood into preteen and early adolescence in most cases.

I know my brother, for example, would only eat his peas with ketchup for many years of his life, but then was very normative in other ways. And some people might look at that as something unusual, but then when you kind of take the whole picture of his dietary intake, he was still meeting all of his nutritional needs and so nobody was really worried about that even back in the 90s when this was going on.

When we think about somebody who falls outside of that normal range, we're looking at an individual who maybe really struggled with that transition into solid foods and they weren't able to incorporate solid foods until they were 18 months old or two years old. When kind of normally we're seeing kids start to incorporate solid foods between six and eight months old at the latest. They might reject more foods than other kids their age.

They might have a very limited number of foods from an early age and then start to decrease in the number of foods that they'll accept over time, and then that continues. Whereas with a child who has more normative eating, we're going to see them gradually start to add in new foods and be more open to accepting those new foods.

Dr. Ellie Pike:
So just to pause you for a second, because I have a toddler and I understand the picky eating and I understand the level of disgust that they can sometimes express around food. I think that that is a really key differentiator where all of that picky eating is really normal as they explore foods. But the difference being that if someone has potentially signs of ARFID, they're going to limit their foods more over time. When someone with more normative eating you're saying would eventually expand what they're willing to eat, especially by the ages of 12 or 13.

Dr. Michelle Jones:
Yes, exactly. And really we're usually seeing that sooner. We'll see the variety start to go down around age three, and then usually it's starting to come back up around age five or six and then gradually increasing over time with a more noticeable increase by age 12 or 13. It's to note kind of when these changes are tending to happen.

I think another important differentiator is with a child who is in that normative range of picky eating, we're usually seeing that they're eating at least a few foods from each of the major food categories. So I'm referring to grains, proteins, dietary fats, dairy, fruits and vegetables. And we're usually not seeing them completely eliminate or restrict entirely from one or more of those categories, and typically there's more than one or two options per category.

So a child who really doesn't like fruits or vegetables very much, but they will eat bananas and apples and potatoes and green beans, we're not going to worry too much about that until that's somebody who's much older and especially if they're also finding difficulty with consuming some of those more critical food groups like proteins, dietary fats and grains.

Dr. Ellie Pike:
And is there a risk of malnutrition with any of this high level of picky eating or ARFID really essentially?

Dr. Michelle Jones:
Yes, absolutely, and that's actually a piece of the diagnostic criteria that I didn't speak to earlier. We're looking for a few different markers, at least one, and one of those markers is nutritional deficiency. So it's not very common in modern society. Thankfully most of our food is pretty fortified and the foods that our patients with ARFID tend to gravitate towards tend to be those kind of carbohydrate heavy foods that are fortified with most of the essential nutrients.

But we will commonly see people come in and they have vitamin D deficiency or something like that because they're not consuming enough dairy and maybe they're not going outside in the sunlight enough or consuming other fruits and vegetables that could be a source of vitamin D too. That is an element for sure. We're seeing more nutritional insufficiencies than anything else, but it is possible to have a true nutritional deficiency.

Dr. Ellie Pike:
So that really does help me start to understand some of the differentiation and some of the risk factors too, of why to take it seriously if someone does think that an individual has ARFID. And as you described earlier, you talked about the three different types of ARFID.

And I'd imagine that there's a lot of overlap with ARFID and other issues that might be cropping up in life, whether that's sensory sensitivity or levels of anxiety. So I'd really like to talk about some of those overlaps. And start with the first one. So I think the first one you mentioned was sensory sensitivity. Would you mind talking about that realm of ARFID?

Dr. Michelle Jones:
Sure, absolutely. Sensory sensitivity, as I mentioned, is restricting food based on the sensory properties of food. And that does have a pretty significant overlap with other diagnoses that kind of involve sensory sensitivity, most notably autism spectrum disorder. I mean, as you would imagine, sensory sensitivities are pretty common in autism and particularly around food.

That's one of the things that we look for when we're looking to diagnose someone with autism spectrum disorder. And there's a degree of differentiating between autism and the sensory sensitivity subtype of ARFID. You definitely can have both. We will see kiddos with autism or adults with autism who have sensory sensitivities around food, but maybe don't meet full criteria for ARFID. They are a little bit pickier than the average person, but not enough where it's impacting their nutritional profile.

It's not impacting their growth or their development if it's a child, they're not losing weight because of the amount of food that they can eat, it's not interfering with their psychosocial functioning. They're kind of functioning relatively well outside of, "Hey, they're just kind of picky." With somebody who has ARFID, we're going to see both the symptoms of autism as well as this more market presentation of restriction based on sensory properties of food.

Dr. Ellie Pike:
Are there any cases with the sensory sensitivity category of ARFID that don't overlap with autism?

Dr. Michelle Jones:
Absolutely. We see it fairly commonly. It kind of varies a little bit, and our data's not great just because ARFID is so new. There's not just a plethora of research out there looking at all of these sort of nitty-gritty things. But we do absolutely see individuals who have ARFID, the sensory sensitivity subtype of ARFID who do not have autism.

And that's something else too that people might misdiagnose them as autistic or might not fully understand where their picky eating is coming from because their only understanding of picky eating is that that's related to autism, and instead these are people who just have ARFID and no other symptoms of autism.

Dr. Ellie Pike:
That's really helpful. Thank you for that differentiation. So what about the lack of interest form of ARFID?

Dr. Michelle Jones:
We'll see that sometimes with autism, but the comorbidity that comes to mind with that particular subtype. And again, these are people who just really don't find food very interesting. They don't have strong hunger cues. They tend to forget to eat. They'll go long periods of time without eating, maybe eat smaller amounts a few times a day compared to eating three regular meals and a snack or two or three throughout the day, like someone who might be categorized as a normative eater. We're seeing people who again eat very infrequently and usually smaller amounts. So we tend to see that co-occur most commonly with ADHD.

Dr. Ellie Pike:
It's interesting because as you're talking, maybe you can clarify this as you talk. I notice in a lot of things that I see around ADHD and eating that oftentimes people will binge because they're seeking that high stimulation, high salt, high fat, high sugar kind of food. So I'm intrigued as you explain it, maybe you could talk about how that intersects or is separate from ARFID.

Dr. Michelle Jones:
People who have ADHD tend to be less aware of what we refer to as interoceptive cues, so signals that our bodies are giving off to indicate that we have some kind of a need or there's some kind of body experience that we need to pay attention to. So this might be something like the urge to use the bathroom or our body's telling us that we're hungry and it's time to go eat, or our body's telling us that we're tired and we need to go to sleep.

If you have ADHD, your attention is not focused in a way that allows you to pay attention to that in quite the same way as someone with a neuro-typical brain. And when we think about this lack of interest, low reward response subtype of ARFID, it makes sense that ADHD would kind of go along with that because with ADHD, we're not paying as much attention to those kinds of things.

It's easy to forget to take care of our body's needs in a lot of ways, and we're easily pulled into other activities that feel more stimulating and engaging. So with this subtype, we're seeing individuals who also don't find eating to be a very interesting or exciting activity. It takes a lot of work, it takes a lot of organization and coordination, a lot of executive functioning skills to plan what you're having to eat to prepare your food.

And then you're also left eating something that doesn't really taste that great and it kind of just ends up feeling like a chore. And so it's something that is more easily forgotten or avoided or procrastinated on. And so that really has a reinforcing effect on the restrictive eating over time, and the ADHD can absolutely play into that for a lot of people with ARFID.

We think about ADHD as seeking out stimulation, and we'll think about people with ADHD who don't have ARFID, who might binge-eat or overeat or seek out high fat, high salt, high strongly flavored foods to kind of satisfy that need for sensory stimulation. And we don't typically see that as much with this subtype of ARFID. So that's something to look for if you have a loved one or somebody that you know who has ADHD and their eating seems a little bit different from other people you know who have ADHD. It may be that they also have this subtype of ARFID or you're seeing them satisfy that sensory stimulation in other ways instead of through eating.

Dr. Ellie Pike:
This is all very, very helpful and very applicable information for a lot of different folks. So the last subtype of ARFID that you mentioned was the fear of aversive consequences, fear of vomiting or fear of choking. And to me, I hear the word anxiety in all of that. So can you speak a little bit to the overlap and what that looks like?

Dr. Michelle Jones:
Yes, absolutely. I definitely think about the subtype as one that overlaps quite a bit with OCD and that is kind of clinically speaking what I see most commonly co-occurring with the subtype, although generally anxiety disorders as a whole are occurring along with this particular subtype. This is one, the first two that we talked about tend to be a little bit more lifelong. We'll see the traits of these popping up as early as infancy.

So kiddos, babies who the parents report that it was really difficult to feed them, they weren't interested in eating or they had a very hard time transitioning to solid foods or adding in new foods when they were a toddler. When we're looking at this fear of aversive consequences subtype, that tends to come up a little bit more acutely and usually later on in life, when the brain is developed enough to develop these kinds of fears around eating and connect the dots between the feared situation and something that could prevent that feared situation being restricting intake.

So usually with a subtype, we see some type of traumatic response or a perceived trauma that happens. So an actual vomiting incident, an actual or near-miss choking incident, maybe exposure to a true allergen or some kind of negative uncomfortable response to a food that they ate, food that was actually contaminated where they developed food poisoning or something like that from it.

And so there's some kind of real basis that they're getting from it and then the fear develops and becomes big enough that then the individual is looking to prevent that fear from happening. So when we think about that process of a feared response and then a behavior taken to prevent that feared response from occurring, it's essentially the same principle that applies to OCD where they have the obsessive thought and then the compulsive behavior intended to neutralize that obsessive thought and prevent the negative outcome from occurring.

So we do see a fair amount of overlap between OCD and this fear of aversive consequences subtype of ARFID. Not always, of course we do see them separately. But if we're looking for a disorder that's going to, those are the two that I would pair together. In the absence of OCD, I have yet to meet a child or an adult who has this fear of aversive consequences subtype who does not have some other anxiety disorder. Diagnosed or not diagnosed, they tend to just be kind of temperamentally a little bit more anxious than the average person.

Dr. Ellie Pike:
It seems like the individual is acting with avoidance and the avoidance temporarily relieves some of their anxiety. But then as we all know, avoidance doesn't really support us in the long term. So then there's aversive consequences for their health or how they function in daily life in the long run.

Dr. Michelle Jones:
Exactly.

Dr. Ellie Pike:
So I hear a lot of different pieces, right? The overlap of other mental health conditions, neuro-diversity, even just sensory processing. What does recovery look like for someone who has ARFID? And maybe it's different for children versus adults, I'm kind of curious about that too.

Dr. Michelle Jones:
I think that's one that's really important to bring up. One of the things that I really feel passionately about is making sure that we are not forcing anyone with an ARFID diagnosis into our expectations of recovery. This is really about their life and their functioning and how can we help them function in a way that is going to better their life and not cause some sort of adverse experience happening along the way.

I think that's something that has kind of been happening where patients get really turned off of treatment because they feel forced into a treatment modality that is kind of more geared towards people with a different diagnosis where we do have a different expectation of recovery. When we're looking at recovery for someone with ARFID, particularly the sensory sensitivity and the lack of interest in eating subtypes, their version of recovery is going to probably not look like typical normative eating, especially if their symptoms are more severe coming in.

If I have somebody coming into treatment that is eating five foods and not five categories of food, but five specific foods that are all brand specific and maybe they don't exactly go together and they don't meet all of their nutritional needs, we are not going to turn this one, this person into someone who's just an adventurous eater or who's going to eat a wide variety of fruits and vegetables and a wide variety of protein sources.

We're really looking at, "Okay, if this is a child, what can we help them take to school so that they can take a lunch to school because they won't eat anything in the school cafeteria?" And if they can't take a lunch to school, they're going all day at school without eating anything at all. And that's not good for their health or their growth or their development or socialization or anything like that.

For an adult, we might be helping them be able to order off of a restaurant menu so they can take someone on a date and not have to be embarrassed about that when they're going out to meet people or socialize with their friends because so many social activities have to do with food and eating in some way. So first and foremost, we're helping them get to a healthy weight if that's needed.

We are working on filling big important nutritional gaps. So again, if they have no sources of protein that they're consuming, no significant sources of protein, we're going to try to help them with that in a way that feels appropriate and comfortable for them to a large extent, or to the parents if it's a younger child who may be isn't in a place to be involved in those treatment decisions.

But again, our expectation is not that they're going to be eating normatively by the end of treatment. For these patients who have this sensory sensitivity subtype, it might take 30 to 40 tries of a new food before they know if they can actually incorporate that new food. And so when you plot that out and think about it, even if you're trying twice a day every day, that's weeks per one food.

And so I mean, we're looking at months or years of working on increasing variety and we have to kind of weigh the cost-benefit of that in some cases. So again, we're looking at functionality and physical health more than anything else versus putting someone in a box of what normative eating looks like to everyone else. For the lack of interest in eating subtype, we are primarily helping people get on a routine eating schedule.

So they're eating a regular amount of food that's going to satisfy their body's needs every two, three, four hours throughout the day. And so that might look like setting alarms to have them eat at periodic times throughout the day so their body kind of starts to expect to eat at different times and is getting nutritional needs met throughout the day at a regular interval.

They may have foods that are more convenience foods, more pre-packaged foods, so they're probably not going to be on any sort of organic cook-everything-from-scratch kind of a meal plan. It's going to be like, "Hey, what fast food restaurants are on your way home from work?" Or if it's a teenager, we're going to stock their freezer with bean burritos that you can warm up in the microwave or a frozen pizza you can throw in the oven, something that's going to be lower on in terms of workload to prepare it.

You might need support with meal planning and teaching some skills around that and working on what's the best way to meet nutritional needs that doesn't feel like so much work that it's not worth it. We're also really helping them focus in on foods that they do enjoy and helping them identify why they enjoy them. And then doing some experimenting with can we capitalize on that and try to find other foods that are similar that maybe you might also enjoy that have the same ingredients or similar flavor profiles.

Often once they get on this more routine of eating and they're eating more regularly, their body starts to feel better, their brains function a little bit better, and then we tend to see that kick in for most people. But what we're looking at long-term, if it's someone who really never, their body kind of never kicks in with those hunger cues the way that most of our bodies do, we're going to maybe have them set alarms on their phone that go off every single day at certain times so they have that reminder to eat and they're not distracted playing a game or working or talking to a friend or something and just completely forget to eat.

It happens to all of us I think sometimes, but certainly some of us need less help with that than others I will say. Speaking partially for myself with that one. With the fear of aversive consequences, we do tend to see that come back a little bit closer to normative eating. Our goal is really to look at what was their eating like before they got sick, and then our expectation is we can probably get them back to where that is.

Again, because it patterns on a little bit closer to types of behaviors and sort of profile that we see with other eating disorders like anorexia, the treatment interventions can fit slightly more with that than they can for other subtypes of ARFID. We are really working towards that if at all possible because we're challenging fears that are inherently not matching the reality of the situation, and so we want to work against that.

We're doing exposure and response prevention primarily the same way we would with OCD and really working them through exposures of things that they are worried is going to create the feared outcome as much as we ethically can do and responsibly can do. And we really see that to be a very effective treatment intervention for most people who with this subtype of ARFID, not all, but for most.

Again, we're not wanting to kind of push them into a place where they're just so miserable. But often they're so miserable coming into treatment because they're so imprisoned by this fear that they have that we want to kind of help them break free of that and exposure is honestly one of the best ways to help them out with that. But we do it in a very informed. We tell them about the process, we collaborate with them as much as we can on the process. We're not just showing them videos of people vomiting in a surprise way on day two of treatment or anything like that.

Dr. Ellie Pike:
Well, I appreciate when you talk about exposure, because I have some frame of reference. But to explain a little bit to someone else, what comes to my mind, for example, is if someone has a fear of spiders, then you could potentially work your way towards seeing a picture or a video of a spider before actually having to look at a real spider, right? So in a situation regarding food, is it talking more about the fear of the food or the fear of the aversive consequence, like vomiting or choking?

Dr. Michelle Jones:
It's really both. So the food is kind of representative of the fear of vomiting or choking. So the food is sort of one of the exposures we're going to do en route to challenging the fear of the actual event itself. So most commonly we're seeing fear of vomiting, so I'll speak to that in this example. If someone's afraid of vomiting because they're eating any food at all, we might have to work a little bit on some things like maybe they're so afraid of vomiting and have sort of a superstitious belief that if they talk about it, then that might make them vomit, so they won't even say the word vomit.

So our first level intervention might be, "Hey, we're going to sit here and just say the word vomit a bunch of times for 20 or 30 minutes." We might say all different kinds of gross vomit words together, and we're really kind of over challenging that fear, and then hopefully they have enough repetition that if we're saying spew and blow chunks and Ralph and all kinds of other gross words together, that eventually they get this sense of like, "Oh, hey, I did this really hard scary thing and actually nothing bad came of this."

And so they can help kind of form new neural connections that represents new learning that they can lean towards in the future. And so we gradually work our way up. Very often there are food exposures involved in that, but we're also going to do things like watch videos of people vomiting and listen to vomit sounds and make fake vomit and have them sit with it as though it were real vomit and smell it and all kinds of other really gross, fun, interesting things.

And so we're working our way gradually up that hierarchy of things that they're afraid of related to vomiting. But food is an integral part of that, and very often one of the things we're doing is just having them eat any food at all, because it's not uncommon to see individuals come in with a subtype who have not eaten or drink anything at all and are entirely dependent on an NG or NJ or PEG tube for their nutritional needs.

Dr. Ellie Pike:
It's really interesting. The way that you prioritize what's most important is to meet their medical and nutritional needs. And then it seems like working on some of the flexibility and just functional societal norms, right? Being able to eat out and about or in a social setting, and then the long, long-term version of recovery might be normative eating just depending on the individual.

But especially in this third category that really overlaps more with OCD or phobias. It really shows that it's such a complex eating disorder and it's so important to find the right people for help. So for those who are just out there in the world thinking, "Oh my gosh, I might have this or I might know someone who has this," where's the best place just to start to get more information or to seek help?

Dr. Michelle Jones:
It's a little bit tough because our food resources are kind of few and far between compared to resources for other eating disorders. So you really want to be looking for somebody who has experience and is familiar with this type of eating disorder and what the treatments are and feels comfortable and competent in doing so. A therapist is a really great resource. Looking for a dietitian is also a great resource. Ideally, if you're doing outpatient treatment, you're doing both.

Honestly, just Googling and finding websites that explain what ARFID is can kind of start you on that path of, "Hey, this kind of rings true to what I'm experiencing in my life," or, "This, my child or a loved one that I know in some capacity, we just want to understand what this is." And so there are some books out there. There are some more broad eating disorder websites that will speak to this, but unfortunately, there's just not a ton of ARFID specific information that's just kind of floating around out there these days.

Dr. Ellie Pike:
I am sure this will lead to more questions, so I hope that we get to have you back on the show sometime. Thank you so much, Dr. Jones.

Dr. Michelle Jones:
Yeah, thank you so much for having me.

Dr. Ellie Pike:
I hope today's exploration of ARFID expanded the way you relate to food and eating. For those of you diagnosed with ARFID or caring for someone who might have it, look to our show notes for numerous helpful resources, including a quiz to see if ARFID is what you or your loved one have been struggling with. I'd especially like to highlight a book that Dr. Jones recommends for caregivers called Avoidant Restrictive Food Intake Disorder: A Guide for Parents and Carers by Clinical Psychologist Rachel Bryant-Waugh.

Thanks for listening to Mental Note Podcast today. Our show is brought to you by Eating Recovery Center and Pathlight Mood & Anxiety Center. If you'd like to talk to a trained therapist to see if in-person or virtual treatment is right for you, please call them at 8778507199. If you need a free support group, check out eatingrecovery.com/support-groups.

If you like our show, sign up for our e-newsletter and learn more about the people we interview at mentalnotepodcast.com. We'd also love it if you left a review for us on iTunes. It helps others find our podcast. Mental Note is produced and hosted by me, Ellie Pike, edited by Carrie Daniels, and directed by Sam Pike. Till next time.

Presented by

Ellie Pike, MA, LPC

Ellie Pike is the Sr. Manager of Alumni/Family/Community Outreach at ERC & Pathlight Behavioral Health Centers. Over the years, she creatively combined her passions for clinical work with…
Presented by

Michelle Jones

Dr. Michelle Jones is a licensed clinical psychologist and clinical manager at Eating Recovery Center of Dallas. She earned a B.A. in psychology from Baylor University and an M.A. and Ph.D. in…
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