Transcript
Dr Emma Willmott So, my name’s Dr Emma Willmott. I’m a Clinical Psychologist and I’m currently practising across a few different services. So, I work in the ARFID service, which is part of the Maudsley Centre for Child and Adolescent Eating Disorders, at SLaM NHS Trust, and I also work in the Complex Feeding Clinic at the Evelina London Children’s Hospital.
Just to say, I also – whilst I’m currently, kind of, practising more in ARFID, but I also have a background in neurodevelopmental conditions. So, I’m trained in things like the ADOS and the 3Di, and I’ve done lots of neurodevelopmental assessments in my life. But right now, that sort of work is taking place more for me in the context of my ARFID work. So, I’m not working separately in, kind of, autism pathways or diagnostic services. Tom, do you want to introduce yourself? Dr Tom Jewell Yes, thanks. So, morning, everyone. My name is Tom Jewell and I work now as a Lecturer, so a Lecturer in Mental Health Nursing at King’s College London. So, my clinical background is I’m a Mental Health Nurse and a Family Therapist, and I worked for about seven years in specialist eating disorder services, most recently at Great Ormond Street, which is where I met Emma. So, I was working in outpatient CAMHS eating disorders for about five years and not really seeing ARFID patients there. Seeing mainly young people with anorexia nervosa.
When I moved to GOSH, that was a, sort of – really, a first experience of working with young people with ARFID. I was also working on the inpatient ward. So, that’s really where my interest came from, but for the last couple of years or so, I’ve been really an Academic. I’ve been working at King’s as a Lecturer. So, the main focus of my work now is research. Most of the research is on eating disorders, but I’m still doing some clinical practice at Great Ormond Street, but not currently with ARFID patients. So, during this talk, Emma will be the true authority on clinical work. But as we’ll talk about later, I worked with Emma on a scoping review of ARFID interventions, and we will come to that a bit later.
So, I’ll just give you a quick overview of what we’re going to cover. So, we’re going to start off looking at the diagnostic criteria for ARFID and autism. And that’s going to help us to just really be clear about what we’re talking about, and, also, to see some of the areas of overlap that are there, even in the criteria. And we’re going to look at the prevalence of ARFID in autism and think a bit about why they commonly co-occur. And then, we’re going to talk about the evidence base for interventions and think about how to apply – what little that we do know, how to apply that to children and young people with ARFID and autism.
Dr Emma Willmott Okay, thanks, Tom. So – and as Tom said, we’re going to start just by talking about the diagnostic criteria, firstly for ARFID, and then we’ll think about it for autism. So, I do appreciate there’s lots of text and information on this slide, but you will get them afterwards, as well. So, really just wanted to say that ARFID is a relatively new diagnosis. So, it’s been added into our dos – diagnostic manuals in 2013, so that’s into the DSM-5, but it has also been added and introduced to the ICD, as well, so that’s more recently, in, kind of, 2019. So, it’s a relatively new diagnosis, and it sti – sits within the feeding and eating disorders category.
So, ARFID, essentially, I think the, kind of, easiest way to think about it, it is a bit of a label that, kind of, does what it says on the tin. It’s people who avoid and restrict their food intake. So, we might see children and young people, and adults sometimes, as well, depending on where we’re working, but where there’s a really limited diet. So, that can be in terms of either dietary variety or the range of foods, or the, kind of, volume of foods. So, there’s not actually anything in the diagnostic criteria that says it has to be under a certain number of foods, because actually, you might have quite a wide range of foods, but the volume of those foods might be, kind of, really low and not enough to meet energy needs.
But, essentially – so it describes people who have these eating or feeding disturbances or differences that’s contributing to a really limited diet in terms of variety or volume, and they’re based on, kind of, three main things, which I’ll talk a little bit more about later on in more detail. But really, that’s driven by a, kind of, a lack of interest in eating, or avoidance based on the sensory characteristics of food, or what we call, kind of, concern about the aversive consequences of eating. So, we might hear things like, “Oh, I’m worried I might choke,” or, “I worry I might vomit.” To meet diagnostic criteria for ARFID, one of four conditions have to be met, so that’s these four points on the right side there, on criterion A. So, significant weight loss, but that’s not always the case for patients with ARFID, because it’s just one of these four things. So, actually, people might not be losing weight. They might be a typical weight, they might actually even be overweight and, also, in children, it might not be weight loss. It might just be that they’re failing to gain weight as we’d, kind of, expect in their growth and development, and they might be, kind of, falling off their growth trajectories.
So, that’s one of the things that might be present, or there might be a significant nutritional deficiency, or a dependence on enteral feeding, so feeding, kind of, through NG tubes or PEGs, or a dependence on oral nutritional supplements. Or it might not be any of those things, contributing to any of those things, but there might be marked interference in psychosocial functioning. So, what we mean by that is that there might be lots of, kind of, distress or embarrassment. It might be causing people significant difficulties in their day-to-day lives, going to school, or for adults, kind of, going to work, or to, kind of, social events involving food. So, those are the, kind of – we need one of four of those things to be met.
We also have to think with ARFID about – so, that’s what it is, but what it isn’t, and these will, kind of, be exclusion criteria. So, we have to think that the, kind of, limited and restricted diet is not better explained by a lack of available food, or by a culturally sanctioned practice. So what we mean by that is any, kind of, religious or ethnical beliefs, that might be, kind of, influencing the diet or causing any limitations in the diet. So, for example, you know, a vegan diet, where it’s missing, kind of, animal products, is not going to be, kind of, categorised as ARFID.
We also have to very carefully think about whether there’s the presence of any body image, weight or shape concerns. So, we cannot diagnose ARFID, as things currently stand, we cannot diagnose ARFID in the context of anorexia or bulimia nervosa. There are some papers coming out about, you know – and we know that we see it in practice, where people don’t fall very neatly into one category or the other. But right now, if there’s a presence of body image, weight or shape distress, kind of, that’s influencing the diet, that would be the, kind of, primary diagnosis, and that would be the, kind of, treatment plan. But in terms of a formulation, it can be very interesting and important to think about, kind of, if there’s any, kind of, historical ARFID, or, kind of, ARFID in the background, when we’re supporting people with anorexia and bulimia, as well.
We also have to very carefully think about whether the limited diet is actually caused by any medical conditions. So, often, what we will want to do before we make a diagnosis of ARFID is just make sure that any, kind of, medical conditions have been screened for or ruled out, that might be, kind of, contributing to a limited diet. And we also have to think about whether a limited diet is better explained by a different, kind of, mental health condition. So, we know that people can have differences in their food and eating when they are particularly anxious, or they might be really low in mood.
And so, to diagnose ARFID in the context of those conditions, we’d have to see that there’s a, kind of, a – the severity of the limited diet and the impact of the limited diet, has to, kind of, exceed what we’d routinely expect with, kind of, anxiety or depression, or thinking about, kind of, autism, as well. I think – Tom and I might think about this a little bit later on, but that’s sometimes really, really tricky to think about, well, what do we mean by – when we’re thinking about autism and eating, what do we mean by, kind of, eating, you know, exceeding what we’d typically expect? Because we know that everybody with autism is, kind of, very, very different, so what do we typically expect someone who’s autistic, kind of, diet to look like?
So, just in terms of the diagnostic criteria for autism, so people might be a bit more, kind of, familiar with this, but we’re really looking at, kind of, two main areas. So, deficits or differences in somebody’s social communication and social interaction, and that has to be, kind of, across multiple contexts, and also, restricted and repetitive patterns of behaviour and interests. And so really, Tom and I, kind of, wanted to focus on this criterion B, about the restrictive and repetitive patterns of behaviours and interest, because interestingly, even within the diagnostic criteria for autism, there’s that bit about, kind of, insistence on sameness and wanting to, kind of, adhere to certain routines and ritualised patterns of behaviour. And it even includes, you know, eating the same food every day as something that’s, kind of, listed within the diagnostic criteria for autism. So, that’s just very interesting to think about, we can even start to see why there’d be this, kind of, overlap between autism and ARFID, when eating the same food every day is, kind of, listed as this criteria – part of the diagnostic criteria in autism.
And also, within that restricted and repetitive patterns of behaviour and interest there’s this bit about, kind of, hyper or hypo-reactivity to sensory input, and food’s a really sensory experience. So, within the ARFID diagnostic criteria, in that criterion A, there’s the bit about, kind of, sensory sensitivities that can contribute to a limited diet. So, you can just begin to start to see why, you know, these two conditions would commonly co-occur, and we’ll talk a little bit more about that later. Just to say, as well, a bit like ARFID, we have to think very carefully about, you know, that things aren’t better explained, perhaps, by an intellectual disability, but the two can co-occur, so autism with an intellectual disability. And for autism, as well, we have to think about that it must be causing, kind of, impairment in someone’s day-to-day functioning, as well. And we must see signs in the, kind of, early developmental period. But they might not become apparent until, kind of, social demands increase, and people we know – kind of, increasingly knowing about, kind of, masking. So, often, for, kind of, maybe older children and adolescents, and I think especially, kind of, girls as well, we sometimes see that actually we start to notice the traits of autism more throughout, kind of, somebody’s development, as those social demands, kind of, increase.
Dr Tom Jewell Okay, so I’m going to talk a little bit about the prevalence of ARFID in autism. So, the reason for the sliders, the studio sliders on the slide, is that whenever it comes to thinking about prevalence, you have these issues about, where do you draw the line? Especially when you start thinking about traits or a spectrum or a continuum, at what point do you draw the line and say, “Okay, these are the people that we count as having ARFID, these are the people who are sub-clinical”? So, you do see different numbers in the literature, so we’ve tried to pick maybe, kind of, conservative but, sort of, commonly cited figures.
So, for autism, one to 2%, for ARFID, maybe two to 5%. But I think when it comes to ARFID, it’s a diagnosis that’s only existed for ten years, so the amount of research on ARFID is obviously a lot less. And I think it’s important to say, for the UK, we really don’t have figures on this at the moment, but there are some studies that are useful for us to look at. So, for example, an Australian study put the figure at just under 2%, so Australian high school students. There was also a study of primary school aged kids in Switzerland, which I think around 3%. So, these are roughly the figures that we would consider to be the most reliable, at the moment, but there’s lots of caveats about this. And I guess one of the questions that comes to mind is, to what extent are the children with autism and the children with ARFID, if they were a Venn diagram, you know, to what extent are they the same children? And it’s hard to say, but we will – we’ll cover that shortly.
It’s important just to touch on, firstly, the fact that both ARFID and autism are highly heritable, and I guess, one of the areas in which there’s more and more research findings recently is the area of genetics. And some people will be familiar with this, but I guess the newer technique for looking at the genetics of different, kind of, health conditions are these genome-wide association studies. And there have been some quite high-profile studies in recent years, for example, for anorexia nervosa. So, we’re still waiting for ARFID. So, there is a study planned, I’ve mentioned there, Cynthia Bulik is the First Author, that’s a, like, a protocol paper. So, this is going to be really interesting, but we don’t really have that data yet, to see, to what extent is there an association between autism and ARFID, even in terms of genetics? So, that’s something we don’t yet know, really, but I guess we could hypothesise that when those studies come out, perhaps we see that, kind of, association. But in terms of what we do know from literature so far, so we know that feeding difficulties are five times more common in children with autism, compared to neurotypical peers. There’s one study by Koomar, which showed in a autism cohort that 21% screened as high-risk for ARFID. That was using a, like, a self-report screening measure, the Nine Item ARFID Screen. And then, Emma, do you want to speak to the Evelina and Maudsley findings?
Dr Emma Willmott Yeah, so although I work at the Evelina now, this was done prior to my time there. But they looked at their sample of children presenting to their Complex Feeding Clinic, and they looked at those that they had made a diagnosis of ARFID for, and of those, 58% also had co-occurring autism. So, that was, like, an established, known diagnosis. But we also know that there was an additional 14% which indicated that there were traits of autism. And more recently, so, in my current work, which I’ve been, kind of, involved in, we’ve audited our patient population in the ARFID service at the Maudsley. So, we looked at, kind of, 246 children.
So, we see children at the Maudsley within 28 days, and so our, kind of, figure there, for those that have known autism at the point of assessment, is less than that at the Evelina’s Children’s Hospital. So, 35% of our patients have a known diagnosis of autism at the point of assessment, but we queried – our percentage where there’s that, kind of, query of autism was higher, so that was 40%. So, both of those studies showing around, kind of, the 70 to 80%, kind of, mark, either with a known diagnosis of autism, or with a, kind of, suspected or queried autism. And that might be they’re on a waiting list, it might be that they’re screening on a screening measure for autism, or it might be that we’ve picked up lots of, kind of, traits in the assessment, or that parents are, kind of, querying that with us. So, that’s how we, kind of, categorised them into that autism queried group.
So, as I touched on in the diagnostic criteria, there’s these, kind of, three ARFID drivers. So, ‘drivers’ is a bit of a funny term, but generally, we tend to talk about that clinically, that what’s driving the limited diet? Rather than calling these subtypes, because suggesting that they’re subtypes maybe suggests that you neatly have to fall into one of these categories. And we’ll talk about this more on the next slide, but we know that it’s very common to have a combined presentation of these, kind of, drivers. So, yeah, we tend to use the term drivers rather than subtypes.
But the main three, kind of, drivers listed in the diagnostic criteria is sensory sensitivities. So, we know food’s a really, really sensory experience, so people might be particularly aversive to, kind of, the taste of food, but the texture, temperature, smell, the appearance of food, colour of food. So, all of those things can contribute to a really limited, restricted diet for somebody. Another category is that fear of aversive consequences. What I hear most commonly in practice is people who are very worried about choking or vomiting. For the people who have that, kind of, choking phobia, often, they’ve had their own individual experience of choking, which has then put them off their, kind of, usual foods. And for the people who are fearful of vomiting, that often seems to take place in the context of a, kind of, broader fear of vomiting, so, like, emetophobia.
More rarely, I might hear fears around, kind of, being contaminated by food, or poisoned by food. And that third category is, kind of, low interest. And the way I, sort of, explain this to families or to other people is, you know, just really thinking about, like, the opposite of a foodie. So, people who just don’t seem to have much interest in food and eating, they find it really boring, they find it a chore. They might not have much appetite or be particularly driven to eat. So, that’s, kind of, another, kind of, category.
So, just to say, as I said before, and this is just more of a, kind of, visual on this, that actually, having a combination of those things we know is the most common type of presentation of ARFID, rather than falling neatly into one of those three, kind of, categories. So, these are two different studies, both in child and adolescent, kind of, populations, where the combined type across both of these studies was more common than having, kind of, one of these – sitting in one of these categories. As we can see from the table on the right, as a standalone, kind of, category, the fear of aversive consequences was, kind of, the lowest percentage.
And then thinking about those drivers with – in autistic populations, there’s a really good study that you could, kind of, look into in – when you’ve got more time, but by Watts and colleagues. So, they looked at ARFID drivers, so the fear, sensory and lack of interest, across autistic patients, and found that all – you know, autistic patients experienced all three of those drivers in combination, just like anybody else with ARFID. So, there were no, kind of, massive differences. You know, lots of people experience those sensory sensitivities, lack of interest, and the fear of aversive consequences, when they’ve got autism or when they’ve not got autism. Although, they did notice that autistic patients scored more highly on the sensory sensitivities and lack of interest, kind of, drivers than those who are not autistic, and that supports prior research. So, you see time and time again in the literature, that actually sensory sensitivities is the most commonly reported, kind of, driver for autistic individuals who have ARFID. Tom, do you want to speak to the Kambanis study?
Dr Tom Jewell Yeah, so this is a study that’s just come out, and it also speaks to, I guess, different trajectories in outcome for different profiles. So, this study, it’s not an intervention study, it’s a follow-up. So, 100 patients with ARFID who had taken part in a different study were followed up at one year and two years to see what happened in terms of their symptom profile and their diagnosis. There was very little change, I’ll just mention that briefly, very little change in diagnosis, but I think three of the 100 did develop anorexia nervosa. But it’s a paper that’s definitely worth checking out, and it’s in the reference list.
But the thing that I want to draw attention to here related to drivers, so they used – one of the measures is the PARDI. We might talk later, if we have time, a bit more about measures, but on the PARDI they looked at scores at the beginning, at the baseline, so, like, time one or time zero. So, young people who had high scores for lack of interest and sensory sensitivities, that was associated with ARFID persisting. So, at one year, these children still had ARFID. But the children with the high scores on aversive consequences, that was actually associated with remission.
So, again, it points to ARFID being I guess what we would call very heterogeneous. There’s lots of different types of children or adults who get this diagnosis, and although there will be some things in common, you can also – within this big category of ARFID, you’ve got some quite – very different profiles. So, again, I guess the take-away might be that the children with those, like, sensory sensitivities and lack of interest are probably the more likely of your patients to also have autism.
Dr Emma Willmott And just thinking about why autism and ARFID tend to overlap, we’ve touched on this a little bit before, but there’s that sensory sensitivities that’s listed in both diagnostic criteria for ARFID and for autism. And research has found that the, kind of, sensory sensitivities in autism likely contributes to and perpetuates ARFID, so that, kind of, keeps it going, just because it continues to, kind of, contribute to people’s acceptance or rejection of food, based on their, kind of, sensory properties. And, also, if we think about autistic individuals, as well, often, kind of, their cognitive profile is, kind of, more cognitively rigid and inflexible, and so they might be really specific about, kind of, when, what or how food is prepared or consumed. And, also, you may get things like, kind of, intolerance of uncertainty that’s, kind of, higher in autistic populations.
So, we have something called “food neophobia,” which is, kind of, essentially, a fear around, kind of, new food or unfamiliar foods or trying new or unfamiliar foods. So, that, kind of, might link to that, kind of, intolerance of uncertainty, and just a preference for routine and a preference for sameness. So, just, “I like my preferred foods, and I’m not, kind of, particularly bothered about trying lots of other, kind of, new foods.” And this is a picture that actually was first, kind of, shown to me by a parent, and we use this with, kind of, other parents, actually, because it’s so helpful, because I think this picture on the right really speaks to those sensory sensitivities and that cognitive rigidity. So, parents often say to me, “Okay, well, my child has a really restricted, limited diet, but why do they struggle so much with fruits and vegetables? Like, I wouldn’t mind so much if the restriction was more, kind of, you know, that they ate loads of fruits and vegetables and didn’t eat so much of the, kind of, high carbohydrate foods.” But this picture’s really good, ‘cause it shows the sensory sensitivities and that cognitive rigidity around this, kind of, blueberry. Where its sensory properties, and it’s going to become different every time. So, you’ve got one on the left there that’s a bit bigger and more juicy, to one on the right that’s, kind of, maybe smaller and a bit more sour. Whereas something like the carbohydrate-based foods, and often the highly processed foods, they’re the same every time. So, you know, in terms of a sensory sensitivity, you know what you’re going to expect, and they’re a bit, kind of, plainer and more, kind of, bland, but yeah, it’s just a lot more of a, kind of, predictable food.
If we think about other things, as well, so this isn’t listed in the, kind of, diagnostic criteria for ARFID, but, you know, there – we know that autistic individuals often have differences in their interoceptive awareness. Which – and what we mean by that is, kind of, differences in the way that they’re, kind of, perceiving their body and reading their bodily cues. So, that might be, kind of, to pain, for example, but it also might be to, kind of, hunger and also, recognising their, kind of, appetite. So, often, I will meet children who are autistic and possibly also have ARFID, and they say to me, like, “I just really struggle to recognise when I’m hungry. Like, I have to be – I have it – I have to have a really, really bad headache and my stomach has to be, you know, really, really feeling, ver – like, very, kind of, strange or tight or rumbling, for me to really notice that I’m really getting hungry.” And I think those differences in interoceptive awareness can also, kind of, relate to that, kind of, lack of interest in food, because they’re not necessarily recognising their appetite in the same way, so they’re not as, kind of, internally or intrinsically motivated and driven towards food.
And, also, I think sometimes we forget that, you know, food is often a very, very social experience, and social communication and managing those demands can be really difficult for autistic individuals. So, trying to combine, kind of, food, which is a very sensory experience, with those, kind of, social aspects of mealtimes and eating can be really challenging, I think, for children who are autistic and who have ARFID. And this was just – I think Tom and I were just trying to think about a visual way of – you know, what would we categorise more as ARFID, and what would we categorise more as autism? And this is just a really, kind of, rough first draft and us just putting our thoughts, kind of, down on paper. So, we’d be very interested to, kind of, get people’s thoughts on this and talk about it, perhaps, in the panel discussion. But we were just trying to separate out, you know, if people are saying, “Well, when do we think it’s both? When do we think it’s more one or the other?” I would say, you know, the things that we’ve put more on the ARFID side are the things relating to the ARFID diagnostic criteria, so, kind of, the diet impacting on the physical health, there being reliance on oral nutritional supplements. And we’ve got the, kind of, three drivers there, so the fear-based driver, lack of interest, interoceptive awareness differences, so that low appetite, low interest. But we’ve, kind of, put some of those things more in the, kind of, middle of the Venn diagram and overlapping, as well, because we know that interoceptive awareness is also something that’s different in autistic individuals.
More on the right-hand side, and where I’m starting to think about, well, is this ARFID or this is actually, kind of, autism and better explained by autism? I’d be thinking about, you know, it might be that there’s some food preferences, but actually, if it’s preferences for just, “I want” – you know, “I like my foods, but I want them cut or presented in a certain way,” or, “I want the same plate, or cutlery,” or, “I really dislike, kind of, eating in a social context, and I prefer to eat alone,” those are more things that I would think are, kind of, more on the, kind of, autistic side of this, kind of, diagram.
And the same with those, kind of, routinised eating patterns. So, I meet some children who, they’re like, “It has to be four chicken nuggets,” for example. That’s not necessarily ARFID. That might be speaking a little bit more to, kind of, autism, or, kind of, eating – I’ve heard children, like, have to eat in a certain order, or a certain, kind of, way around the plate. Like, they have to go clockwise, for example, or eat one thing at a time, foods not touching. Those are the things that feel a little bit, like, kind of, on the autism side of the spectrum. The ones that I’ve – just picking up on a few that are in the middle there, sometimes we – parents talk to us about children really closely examining food. And I think that can be those, kind of, sensory sensitivities. So, they can maybe have to smell foods before they eat them, or look very closely at them visually, but also, you might sometimes see that in ARFID. So, if someone’s really worried about, kind of, the contamination or being poisoned, you might also get that, kind of, close examination of food. And what we often see as a real, kind of, overlap between these two conditions, is children who are brand specific. So, they might, kind of, eat chips, but it has to be a certain brand, and, also, children who are context specific, so they might eat certain foods at home, but they might be able to eat different foods at school or with other people. So, I feel like that’s quite common across both conditions.
Just in terms of, kind of, considerations for assessment. So, there’s obviously lots of things that we have to consider for assessment, both of ARFID and autism, but I’m just trying to think about considerations for, you know, both of those conditions. So, I think we really need to think about, you know, in ARFID, but also in autism, what do we need to understand about, kind of, physical and nutritional health? So, in ARFID, we look at this really quite closely, and that’s why we need the, kind of, MDT approach, and we need Doctors and Dieticians to support us in ARFID work. But we’ll look at, kind of, growth trajectories, and we’ll do a really thorough dietetic assessment and analysis, as well. So, we ask for three-day food diaries as part of ARFID assessments.
But I suppose it’s just thinking about within autism practices and autism assessments, what should we be asking about in terms of physical health? And should we be screening nutrition, at all? So, you know, I’m not necessarily suggesting a three-day food diary, but perhaps, kind of, a – just asking about the variety of foods, and asking a little bit more about the diet, eating behaviours, maybe a one-day food diary. What can we start to think about physically and nutritionally in our, kind of, autism assessments? For both assessments, as well, it’ll be really important to do a developmental and feeding history. For autism, the developmental history would probably be much more detailed than we’d be able to, kind of, get time for in an ARFID assessment, and maybe in an ARFID assessment, the feeding history would be a little bit more, kind of, detailed and thorough. But I think it’s really important to get an understanding, especially within ARFID, of the history of, kind of, food and eating, and to see how chronic and longstanding it is and was it occurring in the very early, kind of, developmental phase? Which might also make us think about, kind of, neurodevelopmental. Or has it been a really sudden, acute change? So, where they’ve eaten a really wide range of foods, perhaps something has then happened, like, a choking incident, and then that’s contributed to a, kind of, really quick narrowing of the diet, and it’s become very limited and selective. So, the, kind of, developmental and feeding history is very important in ARFID, ‘cause you’re always trying to think about how longstanding this pattern is, and where are you trying to, kind of, get children back to, and where are you, kind of, trying to move things onto?
We also are going to ask about family history in both assessments for ARFID and autism. And in autism, we might be asking a little bit – in a little bit more detail about neurodevelopment in the family, but, you know, we should also be asking about that in ARFID assessments, and thinking about, kind of, any history of eating difficulties or eating differences. So, it’s not uncommon for me to hear in an ARFID assessment a parent say, “Do you know what? I was really picky and fussy when I was younger. We didn’t have a diagnosis of ARFID, but I wonder if that would fit me now.” And, also, in terms of family history and just, kind of, family background, I think it’s really important to think about any cultural practices or beliefs around food, as well, as part of an ARFID assessment.
I think thinking about routine screening measures for autism and ARFID’s really important, as well. So, currently, in my service in SLaM, we are routinely screening everybody for autism, using a ten-item questionnaire, the AQ-10, but also, in autism, should we do any, kind of, screens for restrictive eating, because we know these two conditions commonly co-occur? And, also, just thinking about, you know, when we’re trying to think, is this one condition or is this ARFID and autism? I think I have to think very carefully about, are these sensory sensitivities specific to food and eating, and is the cognitive rigidity specific to food and eating, or is that occurring, kind of, in a broader context that might make me think a little bit about a neurodevelopmental condition and possible autism [pause].
Dr Tom Jewell Okay, so we’re going to move onto psychological interventions. I’m just aware of the time, so we may go through this fairly quickly, but we can definitely pick up on this in the Q&A. So, just to really highlight, at the moment, there is no recommended treatment, there’s no first-line treatment, as there are for other eating disorders, and there’s been a few different guidelines. But essentially, no guideline has said, “Okay, this is what we recommend,” and the Hay one, in the middle there is Australian and New Zealand Psychiatrist guideline. So, they’re talking about essentially, you know, offering some, kind of, you know, psychological-behavioural therapy, and thinking about, you know, physical, nutritional, mental health comorbidities. Similarly, APA in America have said something similar.
So, there’s, kind of, an idea that people, Clinicians, should be offering something that maybe looks a little bit like what’s being offered for other eating disorders, and there are some difficulties with that, I think. But I think another really important principle just to highlight is that Clinicians should be guided by individualised formulation, which we’ve touched on already, because probably, one size fits all, this is the treatment for everyone with ARFID, probably won’t work as an approach, because there’s just so much heterogeneity in patients with ARFID.
So, I’ll just probably skip this and just briefly highlight. So, Emma and I worked together on this scoping review of interventions. There’s a link there to the paper. There’s also a really nice blog post for the mental health blog, the link is there. But essentially, most of the literature out there is sh – it’s small case studies, case series, small samples, lots of different approaches to outcome measurement. So, essentially, we don’t really know what works best for ARFID and we can’t make those kinds of conclusions based on the, kind of, literature that we have right now.
But obviously, we wanted to try and bring some ideas together. So, again, I think we’ll come back to this in the Q&A, but essentially, the interventions that we found were, like, family-based interventions. We also grouped some as CBT, we grouped some as behavioural, but there was also quite a few that were a combination. But we also found that many of these different treatments, even if it was called CBT or behavioural or family therapy, often, there were common elements, like psychoeducation, exposure, anxiety management, family involvement and treatment generalisation. But also, importantly, you need to have an MDT approach, just as you would in treating other eating disorders.
Dr Emma Willmott Yeah, and just – so, to touch on, you know – I suppose regardless of whether you’re offering, kind of, a behavioural intervention, or cognitive behavioural intervention, or a family therapy-based, kind of, approach, just thinking about, kind of, adaptations for the people who are autistic and who have ARFID. So, what I find in my practice is that actually, if I’m working with a child with ARFID, and especially if they’re autistic, as well, I really need to spend more time getting to know the young person, building that rapport, kind of, getting to know them and their, kind of, special interests.
But things that I might be thinking about specifically would be maybe, kind of, thinking about things like meal plans, if we’re using meal plans in ARFID, to think about, what are their sensory sensitivities? What foods do they like, and how can we, kind of, incorporate that as much as possible in meal plans? And if we’re going to change those meal plans, people with – you know, people who are autistic having a little bit more time to know when those changes are going to come and when our, kind of, expectations might change. I think it’s really important in ARFID interventions, whether you’re working with someone who’s autistic or not, is just to think about the, kind of, wider sensory environment of the therapeutic space. Because we know that people who have ARFID are often very sensory sensitive to the food, and then, if they’ve got autism as well, there might be these, kind of, wider sensory sensitivities. So, just considering the sensory environment’s really important. I think using special interests in the therapeutic intervention can be very, very helpful. So, I’ve had children who particularly like certain TV characters, and that’s really motivated them to, kind of, eat and try a new food, and you can involve those, kind of, special interests in behavioural approaches, or cognitive behavioural therapy, with, kind of, reward and reinforcement, kind of, strategies.
I also think thinking about the role of family members in ARFID interventions is really important, because often, the work can be really practical, and they might need to go away and try things. So, certain foods might need to be bought or prepared, or the young person might be getting involved in cooking and baking. So, thinking about the role of family members in the intervention is really important. And thinking about the goal, as well, because I think, often, a lot of the, kind of, ARFID work is maybe, kind of, managing parents’ expectations. So, they might say, “Well, I want them to eat, kind of, all the foods in the world, and, you know, the rainbow of foods, and lots of different, kind of, cultural foods.” But for the child and young person, they might be, sort of, saying, “Actually, you know, it’d be really helpful if I could eat chips,” because, you know, I can chips in most places. So, kind of, making our interventions, kind of, very, kind of, goal-focused, and using SMART goals, and really thinking about what’s actually important and meaningful for the young person. And I also… Dr Tom Jewell Emma, sorry to interrupt… Dr Emma Willmott Yeah. Dr Tom Jewell …I think we’re, kind of, coming to time, but shall I move to the next slide, then we’ll wrap up?
Dr Emma Willmott Well, I’ll just touch on the, kind of… Dr Tom Jewell Yeah. Dr Emma Willmott …reasonable adjustments, as well. So, even if we’re not necessarily doing a direct therapeutic intervention, I suppose you’ll get these slides afterwards, but we just need to think about reasonable adjustments. So, I’ll often liaise with school to think about, you know, children with ARFID having access to their preferred foods. And that might mean that we have to think about, kind of, school rules and whether, you know, certain school policies can be applied, or around, kind of like, healthy eating, for example, or whether a child needs to eat in, kind of, a separate place, or have a queue pass. So, those sorts of things can be really useful, as well. So, you might not necessarily do a direct intervention with the young person. We might be, kind of, working with more the, kind of, people around the young person.
I suppose we just wanted to end on, you know – and hopefully, we can touch on these in the panel discussion, but, kind of, some food for thought. So, I just want to, kind of, get people to think about, what can we do in autism assessments to consider possible ARFID, and what can we do in ARFID assessments to consider possible autism? Because we do know these two conditions commonly co-occur. I think we need to think more about that, kind of, diagnostic criteria for ARFID, and that – especially that sentence about when the eating is better explained by another condition. So, what do we mean by that in the context of autism and neurodiversity? When should we diagnose one or the other, and when should we diagnose both?
Commonly in ARFID, in my practice, and in conversation with colleagues, we’ll always be thinking about when are we possibly imposing neurotypical beliefs or values? So, you know, I think we might think about, you know, a certain range of foods that’s deemed acceptable, or that, you know, we should be enjoying foods, or there’s real social value put on mealtimes, or, you know, we should be eating around other people. But autistic people might have a very different view of the world, and I think we have to think about, kind of, how we can be, kind of, neuro-affirmative, and just keep an eye on, kind of, any neurotypical beliefs or values that we might be imposing in our work.
But also, whilst we want to be neuro-affirmative in our care and support autistic individuals with their food and eating, we also want to ensure that we’re not just, kind of, saying, “Oh, it’s okay for you to, kind of, eat a very selective, limited diet, and – that might be contributing to, kind of, a poorer physical, nutritional health.” So, how can we be neuro-affirmative, but how can we try to ensure that people who are autistic and have ARFID, that their physical and nutritional health isn’t being compromised?
Dr Tom Jewell So, we’ll probably leave it there. There are some resources that we’ve highlighted, and we’ll be sharing the slides, so feel free to get in touch with us, as well. Our emails are there, but thank you very much for listening.