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.

Exploring the Intersection of Autism and ARFID

Duration: 41 mins Publication Date: 9 May 2024 Next Review Date: 9 May 2027 DOI: 10.13056/acamh.13595

Description

In this talk, Emma and Tom will share insights from research and clinical practice to help inform clinicians in their work with young people with ARFID and autism. The talk will include: 1) areas of overlap between ARFID and autism; 2) considerations for assessment of ARFID and co-occurring autism; 3) ideas about intervention.

Learning Objectives

A. Understand the overlap between ARFID and autism.

B. Understand the diagnostic criteria for ARFID and Autism, and the considerations involved when assessing co-occurring ARFID and autism in children and young people.

C. Understand the current evidence base for psychological interventions for ARFID, and how this can be applied clinically in children and young people with co-occurring ARFID and Autism.


About this Lesson

Speakers

Dr. Emma Willmott

Dr. Emma Willmott

Senior Clinical Psychologist, ARFID Service at Maudsley Centre for Child and Adolescent Eating Disorders (MCCAED) at SLAM

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