Ovidio Bermudez: 

Well, hello. My name is Ovidio Bermudez, and I serve as chief clinical education officer, senior medical director of child and adolescent services, and executive ambassador for Eating Recovery Center, and today we're going to talk about ARFID, avoidant/restrictive food intake disorder. Kind of a newer diagnosis under the umbrella of eating disorders, but really an important one and one that we're seeing a significant number of people suffering from, both in children, adolescents, and adults, so really throughout the lifespan. I have no conflicts of interest to report, and if this conversation was just a few years ago, before 2013, then we would have talked about three eating disorders with published diagnostic criteria.  

Of course, today, that has changed, because as DSM-5 came out in May of 2013, we now are talking about eight eating disorders with published diagnostic criteria, and as you can see, there is still anorexia nervosa, bulimia nervosa, binge eating disorder, but we're also looking at other diagnoses like OSFED, other specified feeding and eating disorder, like UFED, unspecified feeding and eating disorder, and of course, what we're here to talk about today, which is this diagnosis of ARFID. So, let's talk about ARFID for the next several minutes here. The definition, the letters stand for avoidant/restrictive food intake disorder. Now, what's interesting about this is that, by definition, it implies that there is a bifurcation in the intent.  

So, avoidant food intake disorder can be quite different than restrictive food intake disorder. Of interest, the term in Spanish, as you see there, is TERIA, or [Spanish 00:02:04], and of course, since this affects people from all walks of life, all races, all ethnicities, people that speak different languages, I think it's important to sort of keep that in mind as well. So, today we want to discuss the definition, the prevalence, the diagnosis, the assessment, and the management of ARFID in children and adolescents, with the goal of really making you more familiar with the approach that we take at Eating Recovery Center, so let's start with the definition.  

So, as I alluded to earlier, we have this avoidant/restrictive bifurcation, and the reason that this became really a new diagnosis with new criteria is that there was the observation that a large number of people, primarily, but not exclusively children and teens, substantially restricted their food intake to the point that they had significant associated both physiological and psychological compromise, but did not meet criteria for other eating disorders like anorexia nervosa or bulimia nervosa, for example. So, the intention was that this would be a broad diagnostic category that would capture really a wide range of presentations, and really, across a lifespan.  

Here are the diagnostic criteria. So, we were talking about an eating or feeding disturbance, meaning the restrictive arm, apparent lack of interest in eating or in food, and then, in the avoidant arm, based on sensory characteristics of food or concerns about negative consequences of eating, like hurting or vomiting, for example. And this is persistent, and because of that persistence, then there is a failure to meet appropriate nutritional and or energy intake needs associated with one of the following: significant weight loss or failure to achieve continued growth, significant nutritional deficiencies, a dependence o enteral, meaning not orally, but but by a tube nutrition based on liquid supplements; and look at this criterion A4, this is really important, marked interference with psychosocial functioning, which really means that you only have to meet one of these sub-criterion. 

So, it really means that somebody may not have lost weight, that somebody may not necessarily have physiologic compromise, may not even be relying on liquid oral supplements or liquid supplements, but have such interference with psychosocial functioning that they meet criteria at least under this criterion for the diagnosis, and that's important because normal-weighted people can meet criterion for our fit. And of course, the rest of the criterion, B, C, and D, really speak to this is not lack of availability of food. This is not another illness, medical or psychiatric, that's underlying this, and it also really speaks to the fact that these criteria are mutually exclusive from anorexia and bulimia. 

So, if you have anorexia, then if you meet criteria for anorexia, then you don't have ARFID, and if you meet criteria for ARFID, then you don't have anorexia, so it's not about having both at the same time. So, to the question of what is ARFID, we could say gee, it's a serious eating disorder whose medical complications are commensurate with the degree of underweight and malnutrition, and in that sense, similar, if not identical to that of anorexia nervosa. Now, what is not is not just picky eating in kids. As a matter of fact, picky eating is normal, not only humans, but most young mammals, what's called food neophobia. It's actually quite adaptive, right? You don't want young ones to go and experiment with foods that they don't realize is safe. They ought to be taught by their parents that food are safe, and that occurs for humans as well.  

So, picky eating has a phase in which it's relatively normal and variable from child to child, but the truth of the matter is that persistent, highly selective, picky eating can become a problem. ARFID is also not a lesser eating disorder. You remember under the DSM-4 we had anorexia, bulimia, and eating disorder not otherwise specified. When a lot of young people were diagnosed with EDNOS, or E-D-N-O-S, a lot of families sort of felt relief. Well, at least it's not anorexia, at least it's not bulimia, and the truth of the matter is that EDNOS was just as serious a diagnosis; it was not a lesser diagnosis.  

It is not simply a behavioral disorder. It's interesting because kids who are not interested in food and sort of choose not to eat, it may appear that that's more like a choice than a serious mental illness, or people who become really afraid of vomiting or hurting, it may appear that it's more avoidance and more of a behavioral disorder. So, we got to be really careful with that, and yes, within the repertoire of behavioral challenges, there are young people who may not be so interested in food, be relatively picky, or become kind of avoidant and fearful of certain experiences like hurting or vomiting, but the truth of the matter is that once they cross the line into meeting criteria for ARFID, then we need to consider that a serious mental illness, not just a behavioral disorder. 

And then, lastly, ARFID is not caused by parents, and that is critical. If we learned anything from anorexia, it's that for a long time we sort of blamed parents, and knowledge has evolved, and we now know that is not the case. So, it's really important that we don't reenact that sort of scenario with the current diagnosis with a newer diagnosis like ARFID, and it's tempting. I mean, a lot of people, family members, maybe even clinicians may feel that, well, if a five-year-old is only eating very selectively, a certain type of chicken finger, well, five-year-olds don't get in the car and go buy their food, so the temptation is to say, "Well, obviously, there's a parent that's enabling that in some way."  

Sure, parents adjust to trying to parent their kids according to their individual needs, and this is one of the scenarios in which we as parents may find ourselves sort of trying to accommodate to make ends meet and have the child have enough intake to continue to grow and be okay. So, those are the definitions, and let's then move on to talk about the prevalence of ARFID. Now, the true incidence and the true prevalence are really unknown, and they're unknown because this was meant to be a broad diagnostic category to capture sort of these newer presentations. I don't know that we had enough data to say, "Gee, how many 40-year-olds are out there with ARFID? How many 50-year-olds with restrictive ARFID? Or how many 50-year-olds with avoidant ARFID?" For children, it's sort of the same scenario. 

So, we simply don't know with clarity as of yet, but it's very clear that this is more common in children and young adolescents, less common in late adolescence and in adulthood, but less common doesn't mean it doesn't happen. This can present in late adolescence. This can even present de novo in an adult. So, that's important to keep in mind. Usually present throughout the entire lifespan in both genders, so it's not like gender exclusive. It's not like anorexia that, for a very long time, we were saying, "Geez, upwards of 90% females." It's different with ARFID, and there's more of a both gender representation that sometimes vary a little with age, and often associated with psychiatric comorbidity, especially more of the anxious and obsessive compulsive features. Less depression is seen in ARFID than is seen in anorexia and or bulimia.  

So, significant anxiety, significant obsessive compulsive features. Sometimes a concurrence with children who may be on the autistic spectrum as well. Hence, that tends to relate itself to obsessive compulsive features and that sort of rigidity of thinking that some of these young patients present with, but not all of them, by any means. So, I want to share with you a little bit of data, so I'm going to share a couple of studies that people... When the diagnosis first came out, these were groups in pediatric hospitals, pediatric programs that had eating disorders program and looked back and said, "Okay, if we applied the DSM-5 criteria to the children that we have been seeing for the last few years, how would they be categorized diagnostically, and what could we learn from that experience?" 

So, this first one, characteristics of ARFID in children and adolescents, a new disorder in DSM-5, was a multi-center study, New York, Toronto, Nashville, and I've summarized here a little bit, kind of the gist of what this group reported, or these groups reported. Essentially, of the patients that they had seen, about 13.8, almost 14% would have met criteria for ARFID if those criteria would have existed back then. The age was younger than anorexia and younger than bulimia, as one would expect. The duration of illness was much longer: 33 months, compared to 14 months and 23 months. The percent male was higher, as we alluded to earlier. The percent mean body weight was in between anorexia, so it was higher than anorexia, but lower than bulimia.  

The medical comorbidity was much higher. 55% of the kids who would have met criteria for ARFID had medical concerns, medically-related complaints. Much lower in anorexia and bulimia, but they were much less frequently involved with a mood disorder, so only 19% compared to 31 and 56%. And these groups went as far as also saying, "Well, wait a minute. Not all these presentations are alike, so can we find some subgroups, some subtypes?" For example, 28% of these patients were picky eaters. 21% met criteria for generalized anxiety disorder. 19% presented with gastrointestinal symptoms as their primary concern. 13% were afraid of vomiting or of choking, and 4.1% really presented with fears related to food allergies or food intolerances.  

Now we know that's almost fourfold that of the general population, so clearly, it wasn't... The intent here was not that they had food allergies. The message here was they were preoccupied with food allergies, even if they didn't necessarily have true allergies. This other study is a single center. They have a medical stabilization and a PHP program up in Hershey, Pennsylvania, and they sort of analyzed their data, and here's the summary again. 22% of their eating disorder patients would have met criteria for ARFID. They were younger, they were more males, so no different than the other study. More dependence on oral supplements, greater fear of vomiting, greater number of them having food texture issues, lower child eating attitudes test scores, because the child eating attitudes test is meant to diagnose anorexia, primarily, so clearly, they did not have anorexia. Higher anxiety, lower depression, and then higher rates of pervasive developmental disorder and learning disabilities. 

So, all of those things were higher, were more significant or noted in the ARFID group. What was not different was the degree of malnutrition and underweight and weight loss based on their experience compared to anorexia or some of the other groups that they looked at. So, there's a little bit of information as to... Even if we look in hindsight, that's sort of what we're learning. So, let's talk a bit about diagnoses. Certainly, it's important to highlight that the clinical presentations of ARFID may vary significantly, widely, and may both depend on and evolve with the developmental context. Translation, two-year-old picky eater, that same brain may present at two looking a certain way, and maybe at five looks a little different, and then at 10 looks a little different, and so important to think about that.  

The lack of drive for thinness, the fact that these kids are not saying, "I feel I'm too heavy," or, "I'm afraid of getting heavy and I want to lose weight," is often confusing to families and to clinicians, frankly, unless you're familiar with these disorders, and the medical complications of underweight ARFID are very similar, if not identical to that of anorexia, and that's true both in children and in adults. Still a new diagnosis. Many clinicians really lack the knowledge, so they're sometimes delaying diagnoses or miss diagnoses, and this may actually lead to extensive medical workups. We see a number of patients referred to us who have had months and sometimes years of medical work of sort of looking for the mysterious cause of these symptoms without ever looking at, gee, we're talking about a mental illness, we're talking about mental disorders. 

Not all the presentations are alike. We talked about this bifurcation, so being restrictive, highly selective, picky may be very different in somebody that says, "I cannot stand the smell of food, of certain foods, or the taste or the texture in my mouth," or even the people that are saying, "What I'm afraid of is that I'm going to choke or I'm going to vomit, or my stomach is going to hurt." Those are really, really very different presentations, and so in order to tease this out, we've moved beyond the bifurcation, the avoidant and restrictive, and we're now looking at four subtypes, I guess, grammatically would be most correct. I like to think of them as types because they're so distinct, and the way we manage them may be different enough that we really need to look at these as perhaps more different than similar, if you will, and here they are. 

Avoidant type and aversive, so the avoidant in the name gets split into avoidant and aversive. The restrictive remains, and then we have noted these mixed type of ARFID and what we are calling ARFID Plus. Now, all of these can happen in children, all of these can happen in teens, all of these can happen in young adults, and all of these can happen in adults of any age, if you will. So, important to be thoughtful that there is not childhood ARFID and adult ARFID. We see these different types of presentations both in children and in adults as well. So, let's go through these for a minute. 

So, avoidant refers to individuals whose food refusal tends to be because of an aversive stance or a fear-based experience, what we call phobic avoidance, and that means that they want to avoid the sensation of they're going to choke, they're going to experience nausea or vomiting, they're going to experience abdominal pain. They may have difficulty swallowing, or pain on swallowing, and even fear of anaphylaxis, and that doesn't mean that people who have anaphylaxis shouldn't be afraid of... If someone has a true peanut allergy, of course they should be afraid of being exposed to peanuts, but when that fear of anaphylaxis goes too far, so far that it goes beyond just being careful to impairing that person's ability to function, then this has really become a phobic sort of avoidance stance, and it can represent a presentation of this avoidant ARFID.  

I also wanted to mention this globus sensation. Globus sensation means a sensation that there is something persistently stuck in the throat. It's not that it's something won't pass, it's that something is already stuck. And of course, medically, sometimes people can have something stuck in their throat, but that's usually transient and it's something that's easy to rule out, but it's a difficult sensation sometimes for individuals to overcome. The second type we call aversive, individuals who accept only a limited diet in relation to sensory features, so we call this sensory sensitivity. The sensory aversions, that is smell, taste, texture or in the mouth, even the color of food can be an issue, can be circumscribed to food only or expand to other sense, people who can not stand certain touches or cannot stand certain sounds, or things like this. Have aversion to colors just in general, not just in food. 

For other people this could be like, rather than a negative sensation, it is such a strong overstimulation of even a positive sensation that it becomes intolerable. Some of these patients are people called super tasters, and this can be super tasters for bitterness. Bitterness can be so strong that it becomes intolerable, or even for sweets, then sweetness becomes so strong it becomes intolerable, and of course, when these patients have had this lifelong, and most of them that do have some version since an early age, then we need to consider sensory processing disorder as a possibility, and of course, the diagnosis of that requires expert hands from an occupational therapist, speech and language pathologist, et cetera with expertise in this area.  

The third type, we talk about restrictive ARFID, individuals who do not eat enough, or show very little interest in the act of eating or in food itself, and we call them the low appetite drive group. They have been usually extremely picky since an early age, but can acquire the pickiness also. Distractible and forgetful. They often profess that they wish they ate more. And if you put food in front of them, they're not saying, "I don't want to eat this food," or, "I'm afraid of choking," or, "I'm afraid of gaining weight." These people are saying, "Put food in front of me. I'm more likely to eat it, but it's unlikely that I'm going to consistently seek it out."  

Sometimes some of these folks fit into the autistic spectrum, as I mentioned, so cognitively they can be sort of rigid and very patterned, and when food is outside of that pattern, then it's unlikely that they're going to necessarily seek it of their own accord. The mixed type is interesting, is either any combination of restrictive, avoidant, aversive features that coexist at the time of diagnosis. Now, they may have presented differently at the time of presentation, so somebody could have been baseline restrictive, and then acquire either avoidant or aversive features, or vice versa, and multiple combinations can be possible, so it's not just sort of one way. And of course, as far as thinking about how we treat these patients, it's important to be thoughtful about that. 

And then ARFID Plus becomes really interesting. I mentioned earlier that the criteria between anorexia and ARFID are mutually exclusively, but here we have somebody, and these young people with ARFID live in the same context from a social-cultural context that we all live under, and so we live in a culture that values thinness, and in many ways promotes dieting. So, these are young people that may have true features of ARFID, avoidant, aversive, or restrictive, but in their presentation they begin to develop features of anorexia now begin, because if they've moved into having body image distortion and drive for thinness, then they've crossed a line. They now meet criteria for anorexia and they no longer meet criteria for ARFID. But we're talking about ARFID kids, or young people, or people, who become increasingly concerned about their body weight and their size.  

They express fear of gaining weight, negativity about fatness, negative body image, but without body image distortion, so they size themselves correctly, but they begin to talk about not liking their body shape, not liking the way they look, for example, and a shift in preference to less calorically dense foods. Most picky eaters survive on a small number of foods, but those tend to be highly calorically dense, so things like chicken nuggets, macaroni and cheese, pizza. Those are typically preferential foods. Now, all of them are have high caloric density, so at the end of the day, if that was to shift... 

Examples of this is someone who's been saying, "I wish I ate more, but now I'm afraid that if I eat too much I may gain too much weight." Or, "Gee, I still only like macaroni and cheese, but I prefer to now have the boiled macaroni and no longer have cheese with it." That begins to speak of a shift in what they're experiencing and how they're experiencing their disorder. Okay, so let's shift gears now and talk about assessment. The assessment for us is very important. A lot of our patients come from a distance, and so before patients get to us we want to make sure that we're a good fit for them, that we're going to be able to help them, and that they're a good fit for us. So, it's important to understand as we move forward with trying to set up a treatment plan for them.  

So, the age of presentation, the assessment and the treatment differ from child to adolescent to young adult to adult. The presentations, the types of ARFID may not be different between those groups, but the way we approach them needs to be developmentally sensitive. In adults ARFID can often be misdiagnosed, and mislabeling as anorexia nervosa is really difficult for these patients. These are patients who have struggled with not being seen, that sense of nobody understands me, and here comes a professional, assesses them and says, "Oh, you have anorexia." That sometimes can be a significant injury. We've seen that happen. The age at onset matters, so adults with avoidant, aversive, or mixed types may have had similar symptoms since early childhood, being picky eaters, having food aversions, et cetera. 

They may also have other features of sensory integration disorder or difficulties like intolerant the touch of clothing or touching certain surfaces, et cetera, and when ARFID has an abrupt onset as a teen or as an adult, typically it involves a food-related adverse experience like having choked or having seen somebody choke, or vomited or having seen somebody vomit. So, it's unlikely the aversive type and the restrictive type tend to be patterns that are more sustained since childhood acquiring the avoidant that I think needs to speak to gee, maybe there was a trigger or an experience. 

The ARFID assessment for us starts with a comprehensive phone assessment upon referral from a professional or a family seeking help, and again, the important thing is both to understand the core principles of treatment that need to be addressed, so if a patient is medically unstable, we need to medically stabilize them. If they're psychiatrically unstable, either with self-harmful behaviors, non-suicidal self-injury, or suicidal challenges, then that needs to be assessed and stabilized. Nutritional rehabilitation is a core principle, and weight restoration, weight normalization, and in children that need it, to monitor catch-up growth, those are really core. Regardless of the type, those are core principles of treatment, and then we have specialty assessment, medical, psychiatric, nutritional, and of course, therapies, the psychotherapeutic approach.  

Here's an example of our phone assessment questionnaire that we've developed for ARFID patients, and it's more detailed as far as a history of feeding, a history of growth, developmental aspects, so we don't have to go through these one-by-one, but these are the types of questions that one our assessment specialists would have asked on the phone to try to better understand this ARFID presentation, and some of these things really matter. So, it's really important to gather this information before the facts so that we can say, "Gee, this is a case that we understand." And then, if the process moves along, then we look at specialty assessments, so we have a medical assessment that really looks at growth and development of the person, the child in this case, the degree and complications of malnutrition, to project growth. 

So, linear growth impairment, when a child stops growing taller at a time in life in which they should be growing taller, that really implies a profound nutritional insult. So, the lack of linear growth is very significant, as important as the lack of weight growth or weight loss, per se, and of course there is a medical differential diagnosis. We don't want to miss medical issues that may be causing the disorder or be an underlying cause of the disorder. Sometimes true gastrointestinal disorders, true food allergies or food intolerances, neurological or neuromuscular illnesses, and some congenital disorders can really look like this.  

There is one case report of a case that presented with a sense of difficulty swallowing, and initially thought to be ARFID, but upon further testing, there was something called a vascular ring around the esophagus. So, there was a malformation of the arteries coming out of the heart and going towards the lungs that actually was obstructing the ability of this young person to swallow. So, there is a medical differential diagnosis, and most of these can be diagnosed with adequate testing of history and physical examination. Then there is a psychiatric component to the ARFID assessment, a differential diagnosis and psychiatric comorbidities need to be evaluated, make sure that this is not a case that meets criteria for anorexia, that there is no abuse or neglect, anything related to reactive attachment disorder, whether or not this person, who may still have ARFID, fit into the autism spectrum.  

But if that is primary, then we need to perhaps view this differently. OCD, depression, whether somebody has a primary psychosis and this is really more of a budding or early manifestation of schizophrenia, et cetera, and of course, the psychiatrist needs to sort of ask the question what is the potential role of psychotropic medication to assist in this case. The psychotherapist needs to really understand the ARFID type or subtype, understand the developmental history and the stage of development of the patient, and then really define the stage of change and what is their sense of self-efficacy. What is their sense that they are going to be able to make changes? 

A lot of these patients and sometimes their family fall into a sense of low self-efficacy. We're stuck, we can't change what is going on, and that's something that needs to be identified and addressed as treatment goes on, and then look at what is the emotion regulation capacity of the patient? How aware are they of their emotions? What are the language that they use to name emotions? What are the coping strategies that they do to deal with the stress, coping skills, et cetera, and how to ideally, that they express through emotionality verbally and not by acting out behaviorally? And of course, if anxiety is present and we're talking about a specific phobia and we're talking about obsessive compulsive disorder, do specific assessments.  

The childhood version of the Yale-Brown Obsessive Compulsive Scale need to be considered and create a hierarchy of tolerable foods or intolerable foods to begin to work with, and also identify whether this child is mature enough to have internal motivators, values, for example, or external motivators like a token economy, right? Earning prizes to earn rewards may be the way. That all needs to be understood upfront to the extent possible, and then staying with caregivers. What is their sense of self-efficacy? What is their ability to connect, to redirect, to validate, to support some of the core principles behind behavior coaching, emotion coaching, which eventually will translate into meal coaching.  

And then the dietician, the nutritionist will take a food intake history, explore the language and awareness of food feelings, look at the mechanisms of eating, really the mechanics of eating. A lot of these patients may have difficulties because of mechanics related to congenital aversive sensory symptoms and the like, but some may have actually acquired abnormal biting and chewing and swallowing mechanics just coping with a longstanding pickiness or dislikes, et cetera, intolerances of textures and the like. Again, work on a hierarchy of acceptable foods. They can either be the preferred foods or the non-preferred foods, and here's an example that you can have a look for yourselves of what is the difference between, again, what is the normal picky eating versus what has been called problematic eating or feeders.  

One example, just to name one in this table, for example, is that picky eaters, when they sort of dislike the experience of a food and exclude it, they tend to exclude it for a couple of weeks, and then reintroduce it later. When you have somebody who's developing problematic eating, once they exclude a food that seems to be sort of done for life, and we need to be thoughtful about this sort of rule of thumb of the 10-10-10. Most humans should be able to eventually eat 10 proteins, 10 grains, and then 10 fruits and vegetables as a rule of thumb. There are people who do a little less, there are people who do a whole lot more. But this is a good rule of thumb.  

And then, finally, let's switch gears and talk a little bit about the management of ARFID, and we've divided this into steps. In step one we look at this comprehensive pre-admission assessment where we strive to identify the ARFID type so that we understand. We look at what are the needs and the core principles of treatment as far as medical stabilization, psychiatric stabilization, nutritional rehabilitation with restoration of weight and height were needed, normalization of vital signs, and really looking at growth trends historically so that we better understand where this patient has come from and where they're at.  

Step two means in-depth specialized assessments in the medical, specifically with a differential diagnosis, in the psychiatric realm with a differential diagnosis and indications for psychotropic medications. In the nutritional realm, sort of establishing weight targets, both in the individual and family therapy realms, looking at what modalities are we going to implement, things like exposure and response prevention, emotion-focused family therapy, family-based treatment, and sometimes even the consideration of psychological testing when we feel it's adequate and necessary. The third step that implies sort of a preparation, really education of the patient to the extent that developmentally they're able to understand, and the parents, about the diagnosis, about the ARFID type, about the interventions that we plan. Why are we going to do ERP, exposure and response prevention?  

About expectations and about goals. Expectations and goals may be very different for a child who has not grown taller in the last three years and needs to really normalize their weight, normalize their eating, and promote catch-up growth so they can end up with a normal adult height. That may be very different than a young adult who's attained a normal height, has lost weight, is underweight, and they just really need to normalize their weight. We're not addressing their height in this case, so important to be very case-specific. Individualize the expectations and goals so that we meet patients' needs and they understand why they're in treatment and what treatment is seeking to solve for them. 

And then step four is really implementation of interventions. We really educate as to a specific approach, what are the steps, so they learn. What is ERP? Why do we do ERP? How do we do ERP? What is FBT? How do we do FBT? Et cetera. Create an exposure hierarchy and implement it, develop coping skills to deal with the exposures, and then decide on an entry point, and then vet specific sensory interventions if that's what's indicated, and then decide whether to involve other disciplines, other professionals like occupational therapists, physical therapists, speech and language pathologists, but clearly, people with expertise. In other words, we're not talking about any occupational therapy or any physical therapies. It's not the person that we go see for our back pain as an adult. We're talking about with somebody who really understands the difficulties involved with children eating enough and growing well.  

The type-specific approaches are important to be thoughtful about, and that's why typing and understanding is so important. The core principles of treatment we have to respect, so anybody who is malnourished, that needs to be addressed with nutritional rehabilitation, weight normalization where weight gain is indicated, and then supporting and monitoring catch-up growth when applicable. For the restrictive ARFID type we're looking at structured eating. It's all about structure, structure, structure. Since you lack the drive to sort of sense the hunger and go seek food and ask for food, then we have to say we have to fit into a pattern in which you structure yourself.  

With that, we do a good bit of family-based treatment and emotion-focused family therapy treatment, so emotion coaching, including meal coaching or coaching to the structure of eating that we think helps these patients the most. For avoidant or aversive types of ARFIDs, we're using formal exposure and response prevention with features of family-based treatment and emotion-focused family therapy. Exposure and response prevention is really about learning to... And it's the treatment of phobias, right, so a good example is somebody who's afraid of spiders, the treatment is to very gradually be exposed to maybe first pictures in a book of spiders, then maybe a spider in a jar that's not alive, then maybe a live spider in a jar, and with that learn how to prevent the phobic response, because that's really sort of what makes things difficult.  

And then, for the mixed type of ARFID, it's tricky because sometimes we have to establish the priority of what type to address. So, if somebody's been restrictive all their life, and then became avoidant because they saw somebody choke, maybe we'll work on the avoidant features first, sort of take it back to the baseline, and then address their picky eating, highly selective or restrictive features, as an example. And then, with ARFID Plus, I put here proceed with caution, because oftentimes ARFID is and should be considered a risk factor for the development of anorexia, so a child who's been diagnosed with ARFID may relapse at some point in the future as a teenager or young adult, with the case of anorexia nervosa, and part of that because some of the personality features and the like are quite similar. Anxious, obsessive, sometimes a little rigid, but intelligent, high-achieving.  

These are features that usually combinations of this is what sets people at risk for ARFID and anorexia. So, when somebody with ARFID begins to talk about fear of weight, not wanting to gain excessive weight, dislike of their body, we have to be careful with the language that we use. So, for example, talking about calories or caloric density may be quite all right in somebody with true ARFID, and by the time they get to ARFID Plus we may have to be really careful with that type of language, because some of that may be triggering to them and move the needle towards anorexia. At the end of the day, at Eating Recovery Center, we believe that the critical ingredients for a team approach, and we work in teams, is expertise in all specialty areas, medical, psychiatric, psychotherapeutic, nutrition.  

Confidence in working with families and caregivers. It is clear that the agents have changed. We are sort of training the trainers, meaning training parents, to really emotion coach, meal coach, and be able to get these kids moving forward nutritionally. So, that partnership with families is absolutely critical, and confidence, therefore, in working with families is absolutely critical. Team alignment and tight communication. We put a lot of time and energy behind everybody being on the same page philosophically as far as how we view ARFID, how we diagnose it, how we treat it, and how we communicate internally so everybody's on the same page all the time.  

Consistency in the delivery of interventions, and that means that we may have great plans during the day, but our night staff then needs to continue to deliver and be consistent. So, really, it's across the board. Ability to adhere to the core principles of treatment and individualized treatment at the same time. So, if somebody's underweight and hasn't grown for a while, that is a core issue. If somebody's not psychiatrically safe, that is a core issue, and at the same time, we need to look at what are the differences between individuals, the circumstances of patients and families and how we work with them, sort of meet them where they're at. Treatment goals globally include moving people from disempowered, that's the aversive and the avoidant or disinterested, that's the restrictive, to empowered and motivated to make changes related to their acceptance of food, their tolerability of food, and their ability to grow and be healthy. 

It's important to think that... A lot of this work is about exposures, exposures, exposures. Since restrictive ARFID is that sort of structured eating, consistent exposure to a meal plan and to normalized eating patterns. In aversive or avoidant it's about exposure, sort of overcoming fears, if you will, and the reason that exposures are important is because at the end of the day, the brain learns by repetition. So, when these patients experience success, success, success, they're now in a new channel of learning where they can go home and continue to experience success. So, exposures become really important.  

As far as outcomes, very, very limited data, especially across the lifespan. We don't know. We don't know how many 50-, 60-year-olds out there have ARFID and what's happening with their treatment, but it's very likely that we're going to see different outcomes with different ARFID types, with different ages of onset, and with different ages of presentation. So, ear to the ground as far as how our interventions are going to take effect. So, with that, I hope I've made a case for these are real diagnoses. It's very important, so early recognition and timely and effective intervention are still the very best tools to help these patients sort of move from a disease state back towards health and wellness. Thank you.  

 

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