Avoidant Restrictive Food Intake Disorder (ARFID): Prevalence and Implications

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In this In Conversation podcast, we are joined by Dr. Emma Willmott and Dr. Tom Jewell, from the South London and Maudsley NHS Trust and King’s College London, to discuss Avoidant Restrictive Food Intake Disorder (ARFID).

Discussion points include:

  • An overview of ARFID and what underlies the dietary restriction in ARFID.
  • Similarities and differences in how ARFID may present and people’s experiences of ARFID.
  • Prevalence of ARFID and how it differs from Anorexia Nervosa.
  • Difference between ARFID and picky or fussy eating.
  • The co-morbidity between Autism and ARFID.

This is the first episode of a two-part series on ARFID with Dr. Emma Willmott and Dr. Tom Jewell. Episode two can be found here: ‘Avoidant Restrictive Food Intake Disorder (ARFID): Psychological Interventions and Outcomes’.

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Other resources

  • Podcast ‘Avoidant Restrictive Food Intake Disorder (ARFID): Psychological Interventions and Outcomes’ with Dr. Emma Willmott and Dr. Tom Jewell. This is the second episode of a two-part series on ARFID with Dr. Emma Willmott and Dr. Tom Jewell.
  • Blog ‘An Overview of Psychological Interventions for Avoidant Restrictive Food Intake Disorder (ARFID)’ with Dr. Emma Willmott and Dr. Tom Jewell
  • Scoping Review ‘A scoping review of psychological interventions and outcomes for avoidant and restrictive food intake disorder (ARFID)’, International Journal of Eating Disorders, Vol. 57, Iss. 1 (2023), Emma Willmott DClinPsy, Rachel Dickinson BSc, Celine Hall MSc, Kevser Sadikovic BSc, Emily Wadhera, Nadia Micali MD, PhD, Nora Trompeter PhD, Tom Jewell PhD
Dr. Emma Willmott
Dr. Emma Willmott

Dr. Emma Willmott is a Senior Clinical Psychologist who works with young people experiencing ARFID and their families across community-based and national and specialist NHS CAMHS services. Emma has worked at the Feeding and Eating Disorder Service at Great Ormond Street Hospital (GOSH) and currently works at the ARFID Service at Maudsley Centre for Child and Adolescent Eating Disorders (MCCAED) at SLAM. Emma has recently published a scoping review exploring psychological interventions and outcomes for ARIFD and is interested in the links between neurodiversity and eating disorders.

Dr. Tom Jewell
Dr. Tom Jewell

Dr. Tom Jewell is a Lecturer in Mental Health Nursing at King’s College London, with a clinical and research interest in adolescent eating disorders. He is a mental health nurse and family therapist and works clinically at Great Ormond Street Hospital.


[00:00:01.430] Clara Faria: Hello, welcome to the In Conversation podcast series for the Association for Child and Adolescent Mental Health, or ACAMH for short. I’m Clara Faria, an ACAMH Young Person Ambassador, and in today’s episode, I have the pleasure to talk to Dr. Emma Willmott and Dr. Tom Jewell, from the South London and Maudsley NHS Trust and King’s College London, to discuss avoidant restrictive food intake disorder, ARFID, and their recently published scoping review on psychological interventions for this condition.

If you’re a fan of our In Conversation series, please subscribe on your preferred streaming platform, let us know how we did, with a rating or review, and share with friends and colleagues.

Welcome, Emma and Tom. Thank you so much for being here today. Can you each start with an introduction, giving a short overview of what you do?

[00:00:59.170] Dr. Emma Willmott: Sure. Thanks, Clara, and thanks for inviting Tom and I to talk today. I’m Emma, and I’m a Clinical Psychologist. So, day-to-day, I work full-time in the NHS with children and young people who are experiencing significant difficulties with their food or with eating. And lots of them have avoidant restrictive food intake disorder, or ARFID for short, which we’ll be talking much more about today, and I feel really lucky to have worked in an area that I’m, kind of, very interested in and very passionate about. And alongside my clinical work, I try to engage in research for ARFID, too, and I know we’ll be talking more about that in the second episode.

[00:01:35.979] Dr. Tom Jewell: I’m Tom Jewell, and I work at King’s College London as a Lecturer in Mental Health Nursing. So, my clinical background is I’m a Mental Health Nurse and a Family Therapist, and I used to work at Great Ormond Street full-time, which is where I met Emma. I used to work in inpatient CAMHS and the Feeding and Eating Disorders Service there. But right now, my job is now, like, full-time Academic, but I’m doing a small amount of clinical work, still, at Great Ormond Street.

[00:02:01.810] Clara Faria: Brilliant. I’m really looking forward to our conversation today, actually, as we’ve got a brilliant opportunity to do a little bit of a deep dive into the topic. So, we’re going to do a series of two podcasts so we can explore ARFID and its implications, before turning to your recently published scoping review. With that in mind, it was recently ten years since the avoidant restrictive food intake disorder, ARFID, was included as a diagnostic category in the DSM-5, yet many people still aren’t familiar with the diagnosis. Could you give us an overview about ARFID, Emma?

[00:02:36.220] Dr. Emma Willmott: Sure. So, ARFID is a diagnosis that sits within the “Feeding and Eating Disorders” category in the DSM-5, as you said. So, that’s one of our mental health diagnostic manuals, and as you say, it was introduced about, kind of, ten years ago now, so in 2013. And ARFID is a label, I’d say, that, kind of, does what it says on the tin. So, many people, kind of, avoid foods, or have a very restrictive food intake. And I suppose, what this means, and what we may see for someone experiencing ARFID, is that they may have a very limited number of foods in their diet, so a very, kind of, small dietary variety, or they may not eat enough food, so they may have a very small, kind of, dietary volume, or it can be both of those things.

And lots of the literature on ARFID focuses on child and adolescent populations, but importantly, we know that ARFID can affect individuals across the lifespan. And when we’re thinking about the, kind of, diagnostic criteria, we have to think about several things. So, one of those, we think about whether the diet is contributing to weight loss, or for children and young people, that might be whether they’re, kind of, not gaining weight as we’d expect. But I just want to add that the – that weight loss isn’t an essential, kind of, criteria, because there are other considerations, too.

So, another one of those is whether there’s any nutritional deficiencies, or any reliance on nutritional supplements or what we call enteral feeding, so being fed by nasogastric tubes or tubes into the stomach. And we also consider whether the limited diet is contributing to any, kind of, what we call psychosocial impairment, and what we mean by that is that it might be causing a negative impact or distress on a person’s life. It might be affecting things like school or social situations, for example.

And, unlike other eating disorders, with ARFID, the dietary range or volume of food doesn’t result from body image or weight concerns, and actually, the – any evidence of the presence of body image or weight concerns is encompassed in the exclusion criteria for ARFID.

[00:04:36.800] Clara Faria: You mentioned that in ARFID, the limited diet does not result from body image or weight concern. What does underly the dietary restriction in ARFID?

[00:04:45.889] Dr. Emma Willmott: So, the DSM-5 describes three factors that may underly and contribute to ARFID, and clinically, we often refer to these factors as drivers. So, firstly, there might be heightened sensory sensitivities to the properties of food. So, we know that food is a very sensory experience, and some people experience significant sensitivities to tastes and textures. Often, food smells can be particularly aversive. I’ve known young people to have preference for the temperature of foods, some people only eating cold foods, or others only liking warm foods. And it can also extend to the appearance of foods, too, so, for example, not liking foods that looked mixed in texture, or foods that are a certain colour, or the way in which foods are presented.

Secondly, there may be a lack of interest in food or eating. So, people seem to get little pleasure or comfort from food. They may not feel particularly intrinsically motivated to eat, and might require external cues or prompts to eat, or they may get very distracted when eating and find eating a chore, eating only out of necessity and function, rather than getting any enjoyment from the food.

And, thirdly, there may be, kind of, what we call “fear of aversive consequences,” which, essentially, describes a significant anxiety regarding food in which people are often very worried that something bad might happen to them if they eat certain foods, for example, that they might choke, or they might vomit. And in my clinical experience, this is often, but not always, associated with a prior experience of choking or a broader fear of vomiting, perhaps based on a, kind of, past history, or an observation of others vomiting or choking.

It is important to say that although three main drivers have been suggested, so the sensory sensitivities, lack of interest and fear of aversive consequences, people with ARFID can, and often do, have more than one of these factors. So, a very recently published study in The Lancet, looking at 319 children and young people with ARFID, found that a combined presentation was the most common type of presentation of ARFID.

[00:06:46.020] Clara Faria: Thank you so much for such a comprehensive explanation, Emma. And could you tell us about how ARFID may present for people and whether there are any similarities or differences in people’s presentations or experiences of ARFID?

[00:06:59.500] Dr. Tom Jewell: Yes, so, I guess, ARFID’s often described as a heterogeneous condition, which means that the presentation varies a lot from person to person. So, we often see people who have very strong food preferences and might be very avoidant of certain foods, or trying new foods, whereas other people have a wider range of foods, but they struggle with consuming enough food through each day. And some people are able to manage all of their dietary requirements through their, like, oral intake of food, but other people might need oral nutritional supplements to meet their energy needs, and some people require tube feeding, so they’re not able to get all of their nutritional needs through eating orally.

And one other thing to say about the, sort of, the heterogeneity of those differences is that people with ARFID can present across the weight spectrum. So, it’s not as though people with ARFID are necessarily underweight. So, you could be anywhere on the weight spectrum, and still meet criteria for ARFID.

[00:07:56.289] Dr. Emma Willmott: And I suppose another way in which it’s heterogeneous in its presentation, and varies from person to person, is that people will present with different drivers, or combination of drivers, that I spoke about previously. So, some people may present with a strong fear of choking that’s affecting their food intake, and others might present with more of a, kind of, sensory sensitivity profile, or a low interest in food. And I think, clinically, from my experience, the sensory sensitivities and lack of interest are often much more chronic, longstanding patterns, whereas the fear, for example, of choking, can come on really suddenly after an experience of a choking incident. So, I’ve known a young person go from eating a wide range of foods to eating just six smooth chocolate bars per day, alongside milk-based drinks.

[00:08:42.480] Clara Faria: Thank you so much, Tom and Emma. And, I’m curious, how common is ARFID? Are there recent estimates on how many children and young people in the UK currently have this condition?

[00:08:53.630] Dr. Tom Jewell: Yeah, so that’s a really good question, and for the UK, we don’t really have good figures for any eating disorders, and certainly not for ARFID, so that’s a general problem for the UK is that we need to get good estimates through research. So, I think there are plans to do that, but currently, that’s just a gap in the research. So, really, we have to, kind of, look more at what’s been done in other countries, and none of these numbers are, sort of, are perfect. So, for example, one estimate from Australia with high school students was just under 2%, and then there was a study of primary school children in Switzerland and the estimated prevalence of ARFID was 3.5%, and that’s in the general population.

So, as I say, there is a bit of a gap, and if you look into this, there are lots of different estimates that you can find, like, quite wide ranges. But, I guess, our summary would be that, like, compared with other eating disorders, ARFID is probably just as common as any of the, kind of, better known eating disorders.

[00:09:55.140] Clara Faria: How is ARFID different from picky or fussy eating?

[00:09:58.680] Dr. Emma Willmott: Yeah, so, it’s a good question, but one that’s difficult to answer, because there’s no consensus by Clinicians and Researchers on the definition of picky or fussy eating. So, there has been a review into picky or fussy eating and thinking about the, kind of, various definitions used across studies, and it seems to refer to young people who have a limited variety or quantity of food. Often, there are lower intakes of fruits and vegetables, wholegrains and dietary fibre. Young people with picky eating will often have strong food likes and dislikes, and there may be something that we refer to as “food neophobia,” which describes a general, kind of, unwillingness to try unfamiliar foods, or a rejection of new foods.

And in the literature, some see picky eating as part of a broad se – spectrum of eating difficulties, where at the severe end, someone may meet a threshold for a diagnosis such as ARFID, whereas others see picky eating as something that’s part of typical childhood development. And that’s something that children tend to grow out of, and they will expand their diets as they get older, and gradually become less fearful of trying new foods, without requiring support or intervention to do so. And, I think, clinically, I think about the level of risk, distress and impairment. So, I think about if the diet’s causing any physical or nutritional risks, how distressed is the person by food or their limited diet, and what impact or impairment is it causing them in their day-to-day life? And if all of those things are heightened, I’d be thinking perhaps more about ARFID than picky eating.

[00:11:29.250] Clara Faria: Thank you, Emma, and how is ARFID different to anorexia nervosa, for example, which is another common eating disorder, as Tom mentioned earlier?

[00:11:38.950] Dr. Tom Jewell: So, that’s a really good question. There are lots of differences between anorexia nervosa and ARFID. The first thing to say is that the cognitive symptoms or thoughts are very different. So, with anorexia nervosa you see an intense fear of gaining weight or becoming fat, which you don’t see in ARFID. Secondly, in anorexia nervosa, you typically see some kind of disturbance around body weight and shape, so, for example, seeing body weight and shape as really important for how you evaluate yourself.

So, thirdly, for a diagnosis of typical anorexia nervosa, you need a significantly low body weight in the context of a person’s age, gender, developmental trajectory. Whereas in ARFID, you can be anywhere on the weight spectrum and still get a diagnosis of ARFID. And then, finally, the picture in terms of onset tends to be different. So, with anorexia nervosa, there tends to be a more acute onset in adolescence, whereas with ARFID, you typically see a – sort of, a more longstanding picture, where there’s been some kind of difficulties with eating from early childhood.

[00:12:41.350] Dr. Emma Willmott: I would just add to that, as well, that, typically, what we see with children and young people with ARFID would be that they might be more bothered by things like the brands of foods or the textures of foods or the sensory properties of foods. And that’s a generalisation, because some people with anorexia may also be really specific about some of those things. But generally, someone with anorexia might be a bit more avoidant of foods based on the caloric content than the sensory properties of foods.

[00:13:07.470] Clara Faria: In the literature, there’s often high comorbidity between autism and eating disorders. Is there a high co-occurrence of ARFID and autism?

[00:13:17.750] Dr. Emma Willmott: That’s a good question, and in brief, I’d say yes. I suppose, you know, just like everyone, autistic people can have good mental health, but we also know that autistic individuals are often more vulnerable to developing and experiencing a whole, kind of, array of difficulties and conditions. And I was reading recently that according to the autism research charity, Autistica, seven out of ten autistic people have a mental health condition. And I suppose it’s becoming increasingly well established in the literature that there is a high co-occurrence of autism and eating disorders, and that includes ARFID, too.

So, kind of, looking at some of the literature on autism, one paper found that feeding difficulties were five times more common in autistic children relative to neurotypical children. Another paper reported that over half, I think it was almost 62% of autistic children, present with some kind of feeding difficulty. So, we know that feeding difficulties are common for autistic individuals, and very likely, some of those individuals would meet criteria for an ARFID diagnosis. Similarly, if we look at the literature on ARFID, often, a fairly high proportion of those with ARFID are also autistic, but it’s not to say that everybody who is autistic has ARFID, nor that everybody who has ARFID is autistic.

I suppose one thing I want to say is that we know that autistic people often have poorer health outcomes, and so, I think it’s vitally important that feeding difficulties in ARFID are understood, bett – you know, better understood and supported in this population.

[00:14:51.620] Clara Faria: Are there any possible reasons for the high comorbidity between ASD and ARFID, Emma?

[00:14:57.540] Dr. Emma Willmott: I think this is probably where we need more research. So, we definitely know that there’s a high co-occurrence of autism and ARFID, but we really need to, kind of, continue to improve our understanding as to why that might be. I suppose, from, kind of, meeting lots of people who are autistic and have ARFID, and speaking with parents and colleagues, there’s, you know, a number a possible reasons that, you know, that these two conditions often co-occur together. I’d say one of those things would be sensory sensitivities. So, we know that autistic individuals have a different, kind of, sensory perception of the world, and that food is a really sensory experience, and that sensory sensitivities is one of the named drivers in ARFID.

I think, also, we know that autistic individuals have a preference, often, for, kind of, familiarity and predictability, so we often hear from parents whose children are autistic and may also have ARFID that, you know, they’re really brand specific, or they really dislike it when packaging changes. For example, you know, at Christmas time, sometimes, you know, the Pringles tubes change, and some children with autism, you know, really struggle with that change, to recognise that that’s going to be the same food.

And I suppose another way of, kind of, thinking about that is, both the sensory sensitivities and the, kind of, predictability, is often I have lots of, kind of, parents that say to me, you know, “Why does my child struggle so much with fruits and vegetables?” And there’s lots of natural variation in fruits and vegetables, so I sometimes get them to think about, kind of, a blueberry, and how – I, kind of, show them a picture, how blueberries look really different. So, one might be, kind of, large, the next one small, one juicy, one quite firm, one more sweet, one more sour. Whereas certain foods are a bit more, kind of, predictable every time, like a cracker, for example.

I think, often, with my colleagues, we sometimes talk about, kind of, differences in interoceptive awareness, for individuals who are autistic. So, they may just have a harder time reading the bodily cues, such as, hunger cues or thirst cues, so they might be more reliant on other people prompting them to eat or drink, or, kind of, more reliant on external cues, such as, the daily routine or the time of the day. I think food’s often a really social experience, as well, so managing the social demands alongside eating I think can be really challenging for individuals who are autistic and who have ARFID.

[00:17:23.140] Clara Faria: And our last question for our first episode, do you or Tom have any advice for people who think that they, or somebody they know, may have ARFID?

[00:17:31.480] Dr. Emma Willmott: Yeah, so I would suggest that, generally, the first port of call is for people to go to their GP, who can check over their physical health, and think about if any physical investigations might be required, and can often refer on to other professionals who might be able to support a child or young person, or whoever it may be, with ARFID, for example, a Paediatrician, or a Dietitian. I think seeing a Dietitian can be incredibly helpful to assess and support someone’s nutritional adequacy through food and think about whether any supports, such as, multivitamins or nutritional supplements, are required.

I think it’s a really – it’s a tricky question, because provision looks very different across the UK. Some areas of the country have feeding clinics, which are often part of paediatric teams, or child development centres, and some areas have pathways, or are developing pathways for ARFID. For example, that might be as part of a community CAMHS team, or as part of a CAMHS eating disorder service. In terms of, kind of, websites and organisations that I’d suggest people look into, there’s ARFID Awareness UK, which is the UK’s first charity dedicated to raising, kind of, awareness and support for people with ARFID, and there’s the Beat eating disorders charity, which have information and workshops about ARFID. And I’d also recommend people, kind of, look into the National Autistic Society and Beyond Autism websites, which tend to have whole sections about food and YouTube videos and visual resources, that can be really useful for those with ARFID, as well.

[00:18:57.250] Clara Faria: Thank you so much, Emma and Tom. I’m really looking forward to doing the second podcast with you, following your recently scoping review on Psychological Interventions for ARFID. For more details on Emma and Tom’s work, please visit the ACAMH website, where you can find their review in full, www.acamh.org, and our Twitter @ACAMH. ACAMH is spelt A-C-A-M-H. Do keep an eye out for other podcasts in the In Conversation series, and don’t forget to follow us on your preferred streaming platform, let us know if you enjoyed the podcast, with a rating or review, and do share with your friends and colleagues.

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