Nine years after DSM-5, Avoidant Restrictive Food Intake Disorder (ARFID) is still settling into clinical practice. Dr. Jennifer Thomas helps sort out the differential diagnosis between ARFID, anorexia, and other conditions and plan treatment in the context of comorbid conditions, such as anxiety disorders and Autism Spectrum Disorder.
Published On: 08/08/2022
Duration: 23 minutes, 15 seconds
Referenced Article: “Diagnosing and Treating Avoidant/Restrictive Food Intake Disorder,” The Carlat Child Psychiatry Report, July 2022
Joshua Feder, MD, Mara Goverman, LCSW, and Jennifer J. Thomas, PhD, have disclosed no relevant financial or other interests in any commercial companies pertaining to this educational activity
Dr. Feder: Nine years after DSM-5, Avoidant Restrictive Food Intake Disorder (ARFID) is still settling into clinical practice. In this podcast, Mara and I will help sort out the differential diagnosis between ARFID, anorexia, and other conditions and plan treatment in the context of comorbid conditions, such as anxiety disorders and Autism Spectrum Disorder. Dr. Jennifer J. Thomas joins us today to help us unpack this topic. She is an associate Professor of Psychology in the Department of Psychiatry at Harvard Medical School. She is also the co-director of the Eating Disorders Clinical and Research Program at Massachusetts General Hospital and the associate editor for the International Journal of Eating Disorders.
Welcome to The Carlat Psychiatry Podcast.
This is a special episode from the child psychiatry team.
I’m Dr. Josh Feder, The Editor-in-Chief of The Carlat Child Psychiatry Report and co-author of The Child Medication Fact Book for Psychiatric Practice and the new Prescribing Psychotropics.
Mara: And I’m Mara Goverman, a Licensed Clinical Social Worker in Southern California with a private practice.
So avoidant/restrictive food intake disorder (ARFID) is still a fairly new disorder, added to the DSM-5 in 2013. Lets begin by talking about what exactly it is.
ARFID is a newly designated feeding or eating disorder where the person does not eat enough food for a reason unrelated to body image problems, environmental factors, cultural reasons, or medical conditions.
Dr. Feder: ARFID occurs at any age—from very young children to adults—but its onset is typically earlier than other eating disorders and it often appears before puberty, where it can be confused with developmental pickiness. That’s a problem because ARFID is as common and serious as other eating disorders
So, Dr. Thomas, can you talk about what the initial reason was for including ARFID in the DSM-5?
Dr. Thomas: Yeah, it’s a great question. So, prior to 2013 when we were working with DSM-4 type of diagnoses, at least half of patients with eating disorders did not fit into the major categories of the ones that we’re pretty familiar with like anorexia nervosa or bulimia nervosa. They would have – well, it was previously called “eating disorder not otherwise specified” or a lot of the diagnoses have this “NOS,” which now is maybe “not elsewhere classified” or the OSPED group.
And so, there are a lot of people who had eating disorders that didn’t quite fit the criteria that we already had and some subset of them were folks who had like extremely picky eating or people who maybe had lost a lot of weight or had difficulty gaining weight, but it wasn’t because of body image disturbance or people who were really afraid of bad things that might happen if they would eat and not bad things, like eventually getting fat, but immediately choking or vomiting.
And so, I think it was a real innovation in DSM-5 that this new category was developed in terms of fixing that EDNOS problem, and the other way that it’s helpful is that there used to be a category in DSM-4, Feeding Disorder of Infancy and Early Childhood. But that would only capture little kids with feeding disorders who had an onset before age 6 and who were underweight, which would be some of the people who now we would call ARFID, but there are also people who are not underweight or people who are adults who have these symptoms.
So, I think it really helped to capture a lot of people who were suffering and to give them a name and also to help facilitate them getting into treatment and then also people doing research to figure out why do people have ARFID, or how can we help them?
Mara: DSM-5 also includes three kinds of ARFID and patients can have more than one of these presentations. The three prototypical presentations of ARFID are: 1) sensory sensitivity leading to highly selective eating, like you might see with autism spectrum disorder (ASD); 2) lack of hunger or lack of interest in eating or food, which can sometimes be confused with anorexia nervosa; and 3) a fear of aversive consequences like choking or vomiting, which is similar to other anxiety disorders.
Dr. Feder: So Dr. Thomas, how can we screen for ARFID in clinical practice?
Dr. Thomas: So, our team in collaboration with colleagues has developed a structured interview to help diagnose ARFID. It’s called the Pica, ARFID, and Rumination Disorder Interview, or the PARDI. The thing is it takes about 45 minutes to do that interview.
If you are in your clinical practice and are having to screen for like a ton of different disorders in a first encounter, you’re not going to have time to do like a deep dive 45-minute interview.
Mara: Are there tip-off’s that might get us thinking about it in a clinical interview?
Dr. Thomas: Asking the person (or if it’s a young person, the parents), do you think that you have a problem with your eating? And do you think that you’re not getting enough food overall, or enough different kinds of foods? And we do find that with very young children, like probably with lots of other mental health issues, it is the parents that are telling us, gosh, I’ve got to go to ten different grocery stores to find the one yogurt that my child will be able to eat and meanwhile, that might be really impairing for the family, and they’re really worried in hearing at the well-child checks that the child is not on their growth curve. But the child might not feel like it’s really a problem for them at all. So, I think it is good to ask collaterals in that case, like you would with any good assessment of a young person.
Mara: Do you know of any shorter screens available?
Dr. Thomas: Yeah, there’s another measure that was developed by a colleague of mine, Hana Zickgraf, and it’s called the Nine Item ARFID Screen or the NIAS. I’m not sure that is has been validated yet with children, but definitely in clinical practice we’ll use it with children. And so being nine items, it is fairly brief, and it asks questions about those different ARFID prototypes. So, asking questions like, to what extent do you agree with statements like ‘I’m a picky eater’ or ‘the list of foods that I do eat is shorter than the list of foods that I don’t eat.’ Stuff like that. So, that can be useful, as well. And then there are cut points at which somebody would sort of screen in for maybe having ARFID.
The challenge is that it doesn’t get at the diagnostic criteria for ARFID specifically. It kind of gets at the prototypes, so there could be people who could be maybe are fairly picky or selective in their eating, but it’s not causing them to have poor growth or impairment or nutrition deficiencies and so, there could be some false positives on that screen, like with any screening instrument.
Dr. Feder: It is also important to be aware of the conditions that co-occur with ARFID. About half of children and teens with ARFID have an anxiety disorder and about 10% have autism spectrum disorder. There is a point in time at which symptoms may be impacting above and beyond what you would see in general with autism. For example, if a patient is developing a nutritional deficiency or if their ability to grow taller and gain weight is getting impacted, providers need to realize that the patient may have ARFID and it is not just part of their ASD.
Dr. Thomas can you talk more about what you do when you begin to notice a patient is falling off their growth curve?
Dr. Thomas: It’s a really good question because there can be so much error with that and people go through growth spurts at different times. But I think if they are, they’ve been a 50th percentile kid and now all of a sudden, they’re at the 30th or something, then you might start to worry. And certainly, if they’re below the 10th or the 5th, if they haven’t always been there, you’d be worried.
I think the thing that’s also tricky with ARFID, though, is that it has a younger age of onset than other eating disorders. So, if you think of a typical patient with anorexia nervosa, you’d expect it to onset maybe bimodally, like one wave right around puberty and that transition would be around 12, 13, 14 and then another wave around kind of transition to young adulthood, maybe like 17-18 and that might also be more so where you’re seeing bulimia nervosa and then young adulthood binge eating disorder.
But in contrast with ARFID, oftentimes families will tell us, my child has always had this. They were really particular about the infant formula that they would accept and take onboard, or they did fine feeding on milk and then when we started doing solid food, they were kind of rejecting everything. Or maybe they were going okay until they were about 2 years old and then they just started declining to have anything that I would feed them.
So, all of that is to say that sometimes the ARFID growth curve will look different from another eating disorder growth curve. Say, with anorexia you might see that someone was trucking along on the 50th percentile and then all of a sudden they turned 14 and it’s like – whoo! They’re in figure skating or ballet or something and then it goes way down because they’re trying to lose weight for that, whereas with ARFID it would be oftentimes it’s more insidious slowly going down, or maybe it’s always been really low.
And in the case where it’s always been really low, that’s always interesting, too, to figure out how meaningful that is. Because sometimes, everyone in the person’s life or the pediatrician will say, oh, well, so-and-so has always been a really small kid. And does it mean they’ve always been a small kid, or does it mean they’ve always had ARFID? So, in that case it’s helpful to think about the family and their stature, if both parents are six feet tall and the child is fairly short, that might be a tip-off, as well.
Mara: I am interested in talking more about anorexia nervosa, because it seems so similar to ARFID. Have you seen instances where ARFID obscures anorexia nervosa?
Dr. Thomas: Yeah, definitely I would say sometimes we’ll see, say, like a 12-year-old girl who comes in and is a very low weight and has a sort of selective diet and they say, oh, well, I’m not worried about getting fat. And that could be somebody who truly has ARFID and you’re going to help them to gain weight and grow and expand their diet through an ARFID treatment and they’re going to be like high-fiving you as they gain weight and be really excited.
I had a patient who told me that she didn’t care how much weight she had to gain, and she was really excited. She wanted to go to eat with her friends, and if she had to part of that show called “My Six Hundred Pound Life,” she would be happy with that. That would fine. We were, I think, trying to weight-restore her to like 110 pounds or something like that. But she was someone who really didn’t have body image concerns, so that would sort of be way that that eval could go.
On the other hand, that same 12-year-old who is kind of denying any shape and weight concerns maybe as they gain weight, they might start to develop those shape and weight concerns. So, not necessarily that the treatment is iatrogenic because at the end of the day they’re going to have to gain weight for their health. But it could be that they’ve never had to experience those shape and weight concerns, their body dissatisfaction because they’ve always been small and that’s kind of been part of their identity and they’ve always defined themselves in that way, and so that has never been threatened until all of a sudden, they start to gain weight and go into puberty. And so, like in those cases sometimes we’ll start on an ARFID treatment track and then we’ll be like, uh-oh, the person is developing anorexia-type of symptoms. Like, we might have to move to a different sort of treatment.
And then a third way that that eval could turn out with that same 12-year-old is that maybe they had anorexia all along and they know that it’s not socially acceptable, or they know that it’s a disorder to say that they want to diet and they’re just kind of couching it in more ARFID terms to say, well, I don’t like X food, or I don’t like ice cream or something like that.
Dr. Feder: Some ways we can tease out anorexia from ARFID can be through looking at the foods that the child prefers. Dr. Thomas tells us that kids with ARFID eat more carbohydrates and fewer vegetables and proteins compared to healthy kids. Kids with anorexia nervosa trend more toward fruits and vegetables and are afraid of eating mac and cheese or candy. If someone is underweight and they come in and they’re eating mac and cheese and ice cream, shes thinking ARFID. If they’re only eating salad, shes thinking anorexia.
Mara: So, Dr. Feder, how would you explain ARFID treatment to a child?
Dr. Feder: For kids with selective diets, rather than saying, “I think you need to add broccoli to your diet,” I might say, “Here are 50 vegetables. Which ones might you be willing to try or learn about?” It is important to use nonjudgmental exposure: “What does this food look like? What does it feel like?” Dr. Thomas has them do tastings (“What does it taste like?”) and then try to move from tasting to incorporating those foods into their diet. For children who have fears about choking or vomiting, she might create a hierarchy of foods they worry about and figure out how certain they are that the bad outcome will occur. Then we can help them learn what would really happen when they eat those foods. For kids who aren’t interested in eating, she talks about helping them habituate to body sensations associated with feeling full (eg, chugging water to get used to feeling full). Providers can also borrow ideas from depression behavioral activation literature (eg, have them eat their favorite foods for pleasure) and engage the child in relapse prevention.
Dr. Thomas: Also we have a patients and family workbook that we’ve developed that is freely available. Anyone could download it and it has a lot of different handouts that describe like, okay, here’s what ARFID is and here’s what we know about it and here is our treatment approach and kind of why it makes sense.
So, we typically will walk patients through that. And so, with ARFID, just to get started, we’ll start out with making the point that it is a psychiatric disorder. You or (slash) your child are not just being picky or stubborn. You might have heard of other eating disorders like anorexia or bulimia, and this is not that. Here is now it’s different. There’s kind of no body image issue and then we have pictures of the three different presentations that we tend to see, like a picture of somebody who doesn’t want to eat broccoli and we’ll talk about sensory sensitivity and selectivity and then a picture of someone who looks like they’re choking and we’ll talk about that fear of aversive consequences and then a picture of someone who’s like looking at their food looking kind of like it doesn’t look very tasty and then talk about the lack of interest and then kind of go from there and say, hey, is there a category that you feel like you fall into, or that your child falls into? And then talk a little bit about what we’re learning from the research about each of the profiles that would make those eating behaviors make sense to the person.
Mara: That sounds really helpful! Can you also talk about what treatments you use and what you have found to work the best?
Dr. Thomas: Yeah, so my group at Mass General, we have developed a cognitive behavioral therapy for ARFID that’s for ages 10 and up and we have basically borrowed techniques from the pediatric feeding literature, from anxiety literature and from eating disorder literature, including cognitive behavioral eating disorder techniques, as well as family-based treatment techniques.
And so, what we do in our CBT for ARFID, or CBT AR approach is that we’ll offer about 20 sessions where we start out in the first stage just providing education, talking about, hey, ARFID is a disorder. It’s not just your child being picky or it’s not just you being stubborn or weird. It’s like there might be this underlying that we’re starting to study that could give rise to these symptoms and we have people do self-monitoring records.
Dr. Feder: Besides your program Dr. Thomas, you are probably aware of other places that are developing approaches as well as maybe publishing on it. Is that a thing, or is it really just isolated to your studies?
Dr. Thomas: We kind of adopted a lot of things that we thought made a lot of sense and then put them together in a package. But we also have lots of awesome colleagues that are doing other research on other types of treatment, some of which have similarities to ours and then some distinctions.
So, for example, a colleague, Jim Lock at Stanford is studying family-based treatment for ARFID. So, basically adapting the family-based treatment for anorexia nervosa that kind of empowers parents to help kids to eat more, kind of adapting that for the ARFID setting and he’s actually doing a randomized control trial of that right now, which is awesome. I’m excited to see the results of FBT versus – I believe his control is maybe kind of a less directed, maybe play-based or supportive type of therapy. And I think that will be really interesting to see. So, there are some similarities between his approach and ours in terms of if it’s a young person having the parents really step in and help to regularize the eating.
And then another colleague who I think is doing awesome work, is Bill Sharp at Emory and he has some higher levels of care program for ARFID where they have looking at a day hospital program where they do a lot of techniques from behavior analysis where they’re also doing exposure, but the interventions are very micro, like at the bite level; and they work with a lot of younger children, as well. So, they might do things like if the child is declining to eat, like taking a spoon and following their mouth with it until they accept it or giving immediate, very tiny reinforcements. So, again, pulling from more behavior analysis. I had the chance to visit his clinic and it was really cool, because they’ll have an interventionist leading the intervention and somebody in their ear telling them, okay, here’s the next step that you take, which was very fun.
And then I guess the last colleague I would say is doing amazing work is Rachel Bryant-Waugh in the U.K. in London, who does a lot of – right now, she has a number of different approaches, I think, that she’ll kind of endorse but she’s creating kind of a care pathway where basically, it’s a conceptualization of like when would you refer somebody to behavioral therapy versus occupational therapy or speech therapy, or when could you sort of wait and watch and they don’t need treatment. I think that’ll be really interesting, as well
Mara: That sounds really fun, and I love hearing about the spread of different possible treatments. So, obviously, ARFID is such a new disorder that there’s no FDA-approved medications. There’s also been no randomized controlled trials, so overall there is really very little research on this.
Some clinicians try medications known for increasing appetite such as mirtazapine, cyproheptadine, and even antipsychotics. In a couple of uncontrolled case series cyproheptadine and olanzapine appeared to help kids eat more and gain weight, but it is not clear that the kids had recovered from ARFID.
Dr. Thomas, how does your team approach prescribing medications for kids with ARFID?
Dr. Thomas: Sometimes we’ll have kids and adults who are on anti-anxiety or antidepressant medication, either for a co-occurring disorder or sometimes maybe to help them with mealtime. So, I think those are all really interesting and worth exploring.
The other thing that our team has started to think about, although we have not done any research on this as an intervention, but it looks like if you look at underweight kids with ARFID and you compare their appetite-regulating hormones to those of healthy kids or kids with anorexia, we just published a paper showing that the kids with ARFID have lower levels of ghrelin, which is like an appetite-stimulating hormone than equally-weighted individuals with anorexia nervosa who are also at a low weight. So, it just suggests that it’s possible that it would be worth exploring like an agonist of an appetite-stimulating hormone, like a ghrelin agonist maybe to help. So, that’s not something that’s been researched yet, but it's something we’re thinking about on our team.
Dr. Feder: What kind of outcomes are you seeing?
Dr. Thomas: So, we’ve done two uncontrolled trials. We have a grant under review, hopefully, to do an RCT of this. But yeah, what we have found is that about two-thirds of kids in our uncontrolled trial of this study had remission from ARFID by the end of the treatment, and about half of adults. And I think part of the reason we’re a little bit less successful with adults is because ARFID has such an early age of onset, it’s so chronic by the time somebody is an adult. You know, if someone’s only been eating ten foods since they were two years old and now they’re 45 and they’re seeing you, might be a little bit harder to treat by that time.
Mara: We’ve unpacked a lot over this podcast. ARFID can be tricky to identify in youth, considering its symptom overlap with other disorders. And, not to mention, there are disorders that are comorbid with ARFID such as ASD and anorexia nervosa.
Any final thoughts Dr. Thomas?
Dr. Thomas: Just that it’s a new disorder, but just as common as other eating disorders that you probably are already familiar with and assessing for and there are treatments that are being studied that have some preliminary evidence of being helpful for people with ARFID. So, I think there’s every reason to be hopeful that these folks can improve.
Dr. Feder: Our printed interview with Dr. Thomas is available for subscribers to read in The Carlat Child Psychiatry Report. Hopefully, people will check it out. Subscribers get print issues in the mail and email notifications when new issues are available on the website. Subscriptions also come with CME credits as well as full access to all the articles on the website.
Mara: And everything from Carlat Publishing is independently researched and produced. There’s no funding from the pharmaceutical industry.
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Mara: As always, thanks for listening and have a great day!