[00:00:00] Hello and welcome to
today's webinar. My name is Harriet Hummerstone. I'm a postdoctoral research associate at Autistica and I'll be the host for today. For those of you who are new to us, Autistica is the UK's leading autism research and campaigning charity. We create breakthroughs to enable autistic people to live happy, healthy and long lives.

We do this through research, shaping policy and working with
autistic people to make more of a difference. A big part of that is sharing the latest research and evidence based practice, which is what we're doing today.

Our topic for today is understanding eating in autistic people. And we're joined by Josephine Neal and Elizabeth Evans, who
will lead the conversation. And we're also welcoming Nicole Kirkland from ARFID Awareness UK, who will be joining us for the audience question and answer session. Before we hand over to our speakers, I just have some brief webinar guidance for you.

Live captions are available on Zoom by pressing the CC button
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The topic today can be difficult for some people, so please
listen at your comfort level. And if you need to speak to someone, please reach out to a trusted person or contact the Samaritans by calling 116 123 or emailing jo@samaritans.org. Please look after yourselves when listening today.

Thank you so much for joining us. I'm now going to hand over to
Elizabeth, our first speaker. Liz, over to you.

Dr Elizabeth Evans: Hello and welcome to the webinar. Okay, so, I feel very lucky to come here and talk to you today about this topic
that's extremely close to my heart. And I hope that my presentation today will primarily serve to amplify the words and the experiences of autistic people, their lived experiences, and the priorities to try and improve our understanding of eating.

So a very quick introduction to me. My name's Liz and my
pronouns are she, her. And if you'd like to get in touch with me about anything [00:02:00] at all, um, this is my email address
and I work for Durham University, as you can probably tell from the email
address.

So what we'll do today, we'll have a very quick, quite surface-level
introduction to what feeding and eating disorders are. We’ll then think about what we do know about eating and autism. We'll move on to the much larger topic of what we don't know about eating and autism.

I will then, the primarily, the focus of this group,of this session rather, is to talk about our findings from some focus groups that we've run with autistic people to think more deeply about the lived experience of eating, both with and without eating disorders and distress in the picture.

We'll go through the key themes that people identified and read
out their quotes to exemplify their experiences and then we'll come to some conclusions. So that's what you can expect from my presentation.

So this is the definition of feeding and eating disorders according to the DSM 5, which is a diagnostic manual commonly used by
psychologists and psychiatrists in the UK and beyond. It's very clinical
language that's used to describe feeding and eating disorders, which can sound very pathologizing, so I apologise for that.

So, feeding and eating disorders is a big category that covers
lots of individual disorders, which I've listed here. All of them have
something in common, which is that they are, they represent a disturbance or an imbalance of, eating or eating related behaviour. And the result of this change to behaviour is that the consumption, so eating or drinking, or the absorption, so how much your body is able to take in, of food and drink is altered compared to what you might typically expect.

And this disturbance and the alteration [00:04:00] to consumption or absorption results in a degree ofimpairment to people's wellbeing, physical, psychosocial, and mental health - or both of them at the same time. Some of the diagnoses mentioned on this slide you may well have heard of already, and others you might not have done.

Anorexia nervosa, which is one of the ones that people have
most commonly heard of, involves having a, um, a lower than would be healthy for you weight, so that varies between individuals as a result of changes to eating, physical activity, and behaviour.

Bulimia nervosa involves, having a range of different weights. You
can't tell if someone has an eating disorder by looking or by weighing them necessarily, particularly with bulimia. It involves periods of feeling like one is eating, a lot more food than one would normally do, and then behaviour that is designed to in some way compensate or make up for that, whether it's not eating for a long time, or whether it's doing other things to compensate for that.

Binge eating disorder involves eating a large amount of food
and a sensation of being out of control and distressed while doing it. So
that's similar with bulimia nervosa. Unlike bulimia nervosa, it doesn't tend to involve a behaviour designed to try and compensate for that period of
overeating.

Then we have kind-of a catch-all diagnostic category called
Other Specified Feeding and Eating Disorder. It's OSFED, and I perpetually mispronounce it as OfSTED, so I promise not to do that. This is designed to cover people who have eating disorder symptoms, but whose experiences don't neatly fit into the boxes of the three that I've just described.

So for example, one could have anorexia nervosa with changes to
physical activity and eating behaviour and often quite significant weight loss, even if one's weight might not be considered clinically riskily low. So you can have anorexia nervosa without being at a specifically low weight and you could also have bulimia nervosa or binge eating disorder, even [00:06:00] if one's periods of overeating or
compensation weren't as frequent as the diagnostic criteria require.

You've also got some other feeding eating disorders down here,
which are more commonly diagnosed in childhood. The ones above are often diagnosed in adolescence and young adulthood. You've got Avoidant Restrictive Food Intake Disorder, which the disorders described above, particularly anorexia nervosa and bulimia nervosa, often involve a degree of body image involvement and concern about weight, size, shape and preoccupation with them. Avoidant Restrictive Food Intake Disorder involves a similar disruption of eating behaviour, but importantly doesn't involve body image components, or particularly a wish to
lose weight. Obviously this will be covered amply in the rest of the seminar, so I won't go further there.

And we have PICA as well, which is often quite underdiagnosed.
It's eating things that aren't designed to be food. So, it could be something as benign as ice, or something a bit riskier like stones or other substances.

And finally, rumination disorder is an experience where people
regurgitate the food that they've already swallowed, and sort of, you know, chew it again, that sort of thing, whether they spit it out or swallow it. Those two are the probably least heard of disorders.

And that's a whistle stop tour through something that could be five lectures on its own. So I hope that's enough defining. I hope this wasn't too boring or bland for you.

So we have these categories of feeding eating disorder and they
are inherently based on neurotypical principles, neurotypical theories, they have been framed very much from the idea that there is one way to understand say anorexia nervosa, and it involves a very specific set of experiences. And as we'll see in a minute, this is not useful or often not useful for autistic people.

[00:08:00] First of all, we know that eating is a really important topic for autistic people. Not only do they tell me it, and I listen, but also we know that eating disorders or feeding eating disorders are far more common in autistic people than neurotypical people. About four times more common. So the prevalence of eating disorders in neurotypical people is about 1%. It's nearing 4%. in people, in autistic people. And that's probably a massive underestimate because a lot of the diagnostic procedures for eating disorders are highly neurotypical biased.

So we know that eating disorders are more common in autistic
people, but also, autism is more common in people with eating disorders. So just under 40 percent of people with a diagnosed eating disorder in one study met the criteria for autism. So there is a really close link between difficulties with eating and autism. We also know that, incredibly concerningly, traditional treatments for eating disorders can be less effective for autistic people. Things are slowly getting better in this area, but it needs to move faster and it needs to centre autistic people in this process.

And finally, if we think beyond diagnostic categories, we know
that 62% of autistic children eat what might be characterised as a restricted range of foods, and about 70% of autistic youth, so that's children and adolescents, have got some eating behaviours that might be defined as disordered.

However, there is a lot more that we don't know about eating
and autism because our current ideas are very rooted in these neurotypical theories and principles of diagnosis that we mentioned. This means that we're highly likely to miss eating disorders in people who are autistic because they present differently.

And potentially, autism-related eating behaviours, like eating
a smaller range of foods in total, [00:10:00] could be inappropriately seen as a problem when they're actually very helpful for the individual. The solution, or at least part of it, and that's the research I'm going to show you today, is that autistic people should lead the development of research priorities for understanding experiences of eating in autism.

And it's really important to go beyond eating disorders and see
the whole picture if we want to make the right decisions about what constitutes an eating disorder or distress and differentiate it from autistic relationships with food in a broader sense.

So we've carried out a series of three online focus groups, repeated.
So we've got 13 autistic people and they met us in groups of anything between three and five people. In total we've got about 13 hours-worth of focus group data from these absolutely brilliant community consultants. They've been witty, they've been honest, they have been tremendous fun to spend time with.

These groups were facilitated by an autistic researcher keeping it an autistic space. They met three times over three months. People could communicate however worked for them. So that could involve the chat function, AAC, or verbally. And we talked about so many different things, but the broadest experiences of eating, enjoyment, difficulties, and far more.

And we've worked together to develop a set of potential priorities for future research, which we will then go and share with a broader group of people. And I will mention that at the end of my talk.

So one key theme, in these data were that individuals studied with, sorry, struggled with interception. So this involved being aware of body cues about being hungry or thirsty. So individuals sometimes said that they realised that they were hungry or thirsty and other times didn't. And even when reminders were set on phones and that sort of thing. Sometimes [00:12:00] eating just didn't happen. And there was definitely an intersection between autistic people and ADHDers with this.

So lots of our participants had both. And it was kind of compounded that aspect of remembering to eat when your body doesn't tell you you're hungry. And there's a lot of other things that you're trying to remember to do.

Other people described not being aware when they were full, or always feeling thirsty. So again, there's a difference here with interoceptive awareness of what the body might need at a point in time. Particularly when people were hyper-focused on an activity it was really hard for them to recognise bodily sensations of hunger.

But others that did regularly experience hunger, often described it as being an overwhelming sensory experience that was extremely distracting and they would need to eat really quite soon. They couldn't just put off eating for an hour or similar. So, it was a really big part of trying to, I suppose, keep one's body healthy when it was common to forget to eat for a long period of time or not notice the need to eat or drink. People talked about sensory experiences a lot, so there's two slides on this one.

People's preferences for food were very variable. There are cliches around the idea of food that autistic people eat, and we saw far more variation than that. Many people had a specific preference for taste, texture, or smell. So, for example, this participant here is saying, “I can't eat soggy or very smooth food, it has to have a texture or a crunch.”

Some people preferred things to be smooth without bits in. Some people preferred things not to be liquid at all. And others had preferences that leaned towards diversity, so novel, spicy, unpredictable, or fizzy food was quite common, and mixtures of textures, more of a sensory seeking, experience is what they described.

And people's sensory experiences really varied depending on whether they had enough [00:14:00] energy and time to really take on the sensory challenge of eating. So, some people talked about the fact that they sometimes sought sensory experiences, but when they were overwhelmed and had too much else to do, they preferred a meal with much less sensory challenge, and that was a big part of accommodating their eating needs.

People often found that the experience of eating could be really overwhelming. So, particularly if there was an ingredient in that they definitely didn't like, it took over the entire dish. And they couldn't simply, you know, people suggest picking it out, it's just not something you can do.

People talked about the fact that food had different sensory properties in terms of smell, depending on its temperature. And people also talked about the fact that things like fruit and vegetables, they knew that they were meant to be eating it. But actually, fruit and vegetables, you can't necessarily predict the texture or the taste, even by looking at food sometimes, and that was often a really big challenge. Food for which the texture was unpredictable was something that was really stressful and created lots of anxiety for our participants.

We looked at the relationship between emotions and eating. So
again, this was complex and really varied between people. Some people talked about eating when they were bored and food being a celebration, so they enjoyed having food to celebrate events.

Whereas others did not take joy in food in any circumstance.
They ate because they knew they had to eat, but they characterised their
relationship with food as negative. Some people found that essentially food was pretty neutral unless someone was trying to make them eat something they didn't want to eat.

And sometimes eating could be so intense it triggered a
meltdown. So too much emotion in one's brain to cope with sensory aspects of food. “Or I make myself eat regularly because I have to but it's a lot and it triggers meltdowns.” Conversely, some people talked about the fact that during a meltdown they tended to eat a lot of food.

When people ate or drank away [00:16:00] from home, it was really challenging. So, people talked about, particularly things like work meals, where there was very little choice about where one went [was] incredibly stressful, the fact that there was nothing on the menu that was familiar that you could predict the taste experience of.

Going out to eat with friends or at a friend's house was fraught with difficulty. The worry of offending someone who'd worked really hard to cook food that the person just couldn't eat.

People describe the sensory nightmare of being in busy
restaurants and cafes, people being really put off when they could smell other people's foods, or the loudness of sound systems or inappropriately intrusive music making it too overwhelming to eat in that experience.

Some people found the sensory aspects of eating away from home
more manageable, but didn't like the social aspect of it in particular, in
terms of, you know, ambiguous rules at restaurants, what you're meant to be doing, how you're meant to be interacting with people. But where people were able to go to a place that they wanted to go, eat food that was right for them, and go with people that they knew just were relaxing to spend time with.

People also described eating away from home as a pleasant kind
of parallel activity where you could, it broke up conversation and you could really sort of relax into it. Because you had a shared task, you're not just being expected to sit there and have a conversation. Your shared task is all there to eat.

So there was that positive aspect of eating away from home as
well.

Shopping for and preparing food was a massive challenge. So, people talked about the fact that if they were trying to follow a recipe, the fact that, you know, you might run out of an ingredient or there wasn't quite enough of something or it didn't quite match up is really stressful and take you a lot of time and energy.

People talked about once they got home from work, the last thing that they could bear doing was going and facing a supermarket, which again is a sensory onslaught, particularly in terms of interacting with people. One of our people, [00:18:00] one of our participants was a wheelchair user and she talked about the necessity of asking people to move constantly and that alone just being enough not to go into supermarkets, which is very understandable.

And people talked about the executive function of trying to get food, store it. prep it, not have it go off. It's been really overwhelming. It's a massive sequence of things that all have to be managed at the same time. And people, even those that really quite enjoyed varied eating, they'd say 'Look, I like food, but cooking is a whole different matter. It's a masssive task and that will shape what I eat because cooking, preparing food, monitoring use by dates, that sort of thing. It is too much to add to everything else I'm already having to carry here.'

People talked about things that helped them when they were eating. and drinking. So people talked about, usefully stimming, whilst they were eating, watching TV. Sometimes they watch TV or listen to music to distract themselves from the sound of people eating, and sometimes if it's from the texture of food, the textural taste of food, because they were so hungry. So intense from a sensory perspective, people often have strong preferences for their plates, glasses, cutlery, the type of cutlery, the size of it, because it's, it's a very sensory experience to stick cutlery in your mouth or similar. And it's important that it's sort of, it's, it's pleasing on a sensory level.

People also talked about putting in earplugs, particularly when eating away from home as a useful way to help accommodate and manage some of the stressors there. People also had preferences to have their foods on the same plate or separately or in separate plates.

That also was really helpful. And things touching or mixing hot and cold foods were fairly common things that people identified as useful accommodations, to enable them to enjoy food.

People had, understandably strong opinions on the idea that
people, they should be forced to try new foods.

Many people have encountered it in their childhood. Some of
them encountered [00:20:00] it in adulthood.

'I've got more adventurous through being able to have more control' was a really important message. People had tried new foods in their own terms without pressure. That was the only context in which new foods have sometimes been added. It was where there was no pressure and the person steered it, which of course makes a lot of sense.

People related some relatively distressing experiences, around
food and drink growing up. So people talked about being made to eat, talked about being given their food the next day if they hadn't eaten it the previous day.

And someone talked about having to go under the table if their
table, if their table manners in holding knives and forks and things went up to scratch. So some really quite damaging and coercive practices, which were of course potentially more accepted in previous years. But then there was a perception of the fact that there has been a generational shift in parenting approaches.

Particularly lots of our participants had autistic children of
their own. They talked about the fact: expose people to stuff, give them full choice. That's a far more productive way to approach things with children.

Some reflected that having a child has helped them try new
foods, because they wanted to present a variety of foods to their kids, so
they've naturally tried some more in that process.

People highlighted that there was a lack of understanding
amongst the general public of eating for autistic people. They talked about being made ‘difficult’, you know, called difficult, treated like they were inconvenient or childish. The words ‘picky’ and ‘fussy had’ frequently been used about them. It's not this. It is sensory. It is Interceptive needs. It is individual preference. And our participants said they wished people just understood that it's fine to be comfy in your own limits. That's how you build a positive relationship with food, staying [00:22:00] within those limits, and then giving people the choice to go beyond them step-by-step if they wish.

And people repeatedly commented on other people's eating
behaviour. This is a personal bugbear. Just, we should not comment on how somebody else is eating anyway. But someone described that their boss had, you know, the boss was aware they were autistic. Their boss was their friend, sat down and said, “You know, the way you eat and drink isn't the same as other people.”

And the idea that the boss hadn't at all put together the idea
that an autistic person might have differences in their eating and drinking experiences and thought it was appropriate to just announce it in front of a group of people. I think it highlights how far we've got to go improperly raising public and actually, as I'll hint in a second, professional
understandings of, autistic eating.

So people have encountered both lack of understanding from
clinical services and a lack of any clinical services to use. This included the
idea that the average GP has almost no sense of the idea that you can't deliversimilar dietary advice just to everyone who walks through your door, regardless of neurotype.

For example, when people are experiencing, say, vitamin
deficiencies, you know, any other difficulties, we're simply told, well, 'eat
more of this', despite the fact that a solution to that could also have been
using supplements or seeing a dietician. It was seen as, you know, just sort 'yourself out and eat the food that you need to eat.'

So very, just a lack of understanding, a lack of really any
insight. And people also had experienced their eating being pathologized because they were autistic.

So, we have an example of someone who went into eating disorder
treatment and was told that they had to try and stop having their food separate on the plate. They had to make their food touch. Now that was a manifestation of their autism. It wasn't their eating disorder. They'd always wanted their food separate. And actually, by making the food touch [00:24:00], they made it less likely that that individual was going to be able to eat that plate of food.

People pointed out that the idea that you could somehow just
force the eating part of an individual to change without affecting the entire system was ludicrous. Eating is an integral part of people's autistic identity and experiences. It's part of a functioning system. People develop their own accommodations. People are incredibly empathic to others.

Our autistic participants were accommodating for other people.They constantly tried so hard to attend these occasions that we're just not accommodating them. People were extremely invested in trying not to make neurotypical people feel uncomfortable about their eating. They had gone to great lengths to do so, but there was no reciprocity from neurotypical people trying to understand that eating was part of their autism, part of their autistic self.

So, to conclude, we know that the eating profiles of people who
are autistic are varied and individual, and using a one-size-fits all approach is never going to work. But there are distinct sensory, social, and interceptive experiences that are key to the experience of eating for autistic people.

There's a real need to better understand how we can support
autistic people, which includes children and their families with their eating, particularly throughout childhood, because it has such a massive impact then on what happens in adulthood.

There is an urgent need to educate neurotypical people, public
and professionals, about their misunderstandings and their lack of, and the lack of education and empathy that they're showing to autistic people about their eating.

And it's really important to work slowly and sequentially to
differentiate between eating that is helpful and part of someone's autistic
identity, and eating that autistic people just experience as distressing.

And that line is likely to be different between individuals, but only by [00:26:00] doing this can we start to get a more holistic understanding of what autistic eating disorders, may properly manifest as. And my next step is going to be, well, our next step is a large-scale survey of autistic people, hopefully partially by Autistica, to set and rank research priorities for research about eating, followed by autistic-led research that actually pursues those priorities, trying to answer the questions and honour the lived experiences of autistic people to make their lives better.

And thank you to Karen McLaren, my colleague at Durham
University who studies sensory experiences in autism, our absolutely astounding 13 autistic experts by experience who, absolutely, it's been a wonderful experience and Charlie Greenhall, who is our focus group facilitator and she's my PhD student at Durham, and also to the funders of this work. Thanks very much.

Harriet: Thank you very much, Liz. That was absolutely fascinating. There's lots of comments coming in the chat, illustrating exactly what I've
just said there.

I'm now going to hand over to Josephine for our next
presentation.

Josephine: Okay, so, great to have so many people, in the webinar today
and, as Liz has been talking about keeping an eye on the chat and the Q&A and lots of interesting comments and questions coming up already.

So, my talk is slightly different from Liz's, but the reason we did this webinar together was because there's lots of overlap between the sort
of research that we've done and, obviously a big overlap in terms of people that it's relevant to. Participants in research and those who it affects. So what I'm going to talk about today is ARFID.

Just so you know who I am, I'm a consultant child and adolescent psychiatrist at Priory and I also, [00:28:00] have roles at Honorary Clinical Research Fellow at Imperial College London. That's where the research that I will talk about today has come from.

So Liz has done a really nice job of introducing a lovely overview of feeding and eating disorders, and we'll go into a little bit more depth about ARFID.

So, for those of you who are not familiar with the term, ARFID
is, stands for Avoidant Restrictive Food Intake Disorder. It's an umbrella
term, and what that means is that a term that's used to describe a feeding disorder, but it presents in several different ways and has different drivers behind it as find out as we go along.

ARFID describes restrictive eating patterns which result in
significant health problems. Now that might be anything from weight loss or failure to gain weight at the expected rate. It might be about poor growth in children. It might be about nutritional deficits or dependence on things like oral nutritional supplements.

Alternatively, it may result in poor emotional wellbeing, and Liz mentioned the psychosocial aspect to feeding and eating disorders, which is actually really important and often has the biggest impact on day-to-day life.

Just one important thing to mention about the diagnostic criteria side of ARFID. ARFID is not diagnosed if it's better explained by something else.

So if there is a lack of available food, for example, through
poverty, if it's a restrictive eating pattern as an associated culturally
sanctioned practice, such as, religious fasting [00:30:00] it wouldn't be deemed as ARFID, or if there's another physical or mental health
cause, which is more likely to be causing the restrictive eating patterns.

So, if someone is very unwell, physically, and that is the reason that they're not eating, in their usual pattern. That would be a better
explanation. So there is no test for ARFID as there is no test for any of the
feeding or eating disorders. but it's about thinking about the most likely
cause.

What do we know about ARFID in children and adults? Well, I'm a
child and adolescent psychiatrist, so naturally I tend to focus more on
children. That's the population that I work with. So it's also been the focus of the research that we've completed. But what we do know is that ARFID is not just picky eating.

As I said in the previous slide, ARFID leads to significant health problems. So, we know there is a spectrum of eating patterns from picky,
fussy eating, which can be completely normal, particularly in toddlers. And lots of older children and lots of adults are also very picky or fussy eaters. But ARFID is beyond that.

It's a much more restrictive eating pattern that results in
those significant health problems, either physical or emotional well-being. And as you've heard from Liz, we know that eating patterns in childhood can then heavily influence how people eat into adulthood. And as Liz was talking about those descriptions of how coercive some people, sort of experienced eating [00:32:00] behaviours in their family.

Eating is a really emotional topic, and lots of links between kind of eating and emotions. So what we know and what we learn about children really influences, what people experience in adulthood.

So Liz also mentioned, the variety of feeding and eating disorders and very briefly touched on the differences in diagnostics. The key
thing about ARFID is that it may well present with restricted eating, it may well present with weight loss, but the key differentiator from anorexia, where it's associated with restricted eating, is that ARFID is not associated with concerns about body image, weight, or shape.

So the driver of ARFID is completely different from the driver
of something like anorexia. The person with ARFID is not intentionally trying to lose weight. They are not intentionally trying to control their body image.
There are, no episodes of binge eating. It's not associated with eating non-food substances, so that would be PICA. And it's not associated with regurgitating food, which would be more in keeping with rumination disorder.

So thinking about the webinar and the audience today, what is
the relevance of ARFID for autistic people? Well, from Liz's research that shone more light on what typical autistic eating patterns may look like. Although I appreciate that is different for every individual. We think that ARFID is more common in autistic people.

And as Liz was introducing, there are lots of, [00:34:00] things that might overlap between ARFID and autistic eating. So Liz mentioned, to start with the lack of hunger that might be experienced. I can see in the chat that people were reflecting on their own experiences of that. Liz also mentioned sensory sensitivities, and we know that's a big driver of eating patterns in general.

What I often do when I'm talking about ARFID is ask people to
think of a food that they really dislike. And if they were forced to eat that
food, could they eat it? Or could they even be in the same room as it? That might be the first question.

But those sensory sensitivities influence all of us, but it may
be more problematic for some autistic people if they have higher sensory
sensitivities.

So the example that Liz gave about, someone saying they were
more sensitive to pepper, that's something that not many people would guess would be a sensitivity. And it's not very, probably not very well understood by that person's friendship group and family. We know that autistic people may experience higher levels of anxiety and that also may affect eating.

So ARFID was introduced as a new diagnosis in 2013. And even
though that sounds like a long time ago now, that's a very short space of time in terms of diagnostic criteria and how diagnostic criteria new diagnoses make their way through to research and clinical environments and become more commonly known about.

So lots of people working in healthcare may not have heard about ARFID just because they've never come across it. I think when you, break
down and [00:36:00] start to describe ARFID, or you start to describe typical presentations, it's easier for people to identify with that, so they may not have heard of ARFID, but they will know generally, a child, teen, or adult who struggles with eating and may have had some serious
health problems from that.

So, ARFID is on the rise. There is as you see in this slide, a
postcode lottery, for treatment with ARFID. So one of the problems with ARFID treatment is that lots of eating disorder services are not commissioned to treat ARFID. So even though someone may be presenting with some very serious physical health problems, they may be presenting with some very serious mental health problems or emotional wellbeing difficulties as a result of the restrictive eating patterns.

They may not have access to, appropriate support in their local area because their, their local teams are simply not set up or funded correctly
to be able to support them.

So the research that I'll talk to you about today, our aim was
to find out more about ARFID in children and young people. As I said, I'm a child and adolescent psychiatrist, so I work with young people. But we know that finding out more about ARFID in children young people will also influence them.

What we know and what we can develop in future research that's
relevant to adults as well. So this was a research project that we had planned before the COVID pandemic and ended up taking quite a long time because of various restrictions and healthcare services being under even more pressure than ever before.

But we managed to get [00:38:00] it done. We ran a national surveillance study with the British Paediatric Surveillance Unit, the BPSU, and the Child and Adolescent Psychiatry Surveillance System, known as CAPS. And what these systems do is ask paediatricians and child and adolescent psychiatrists to report new cases of rarer conditions.

So they send out invitations to those clinicians on a monthly basis to report new cases within a time frame or certain diagnoses. So between
March 21 and March 22 in the UK and Ireland. We asked those pediatricians and child and adolescent psychiatrists to report newly diagnosed cases, not everyone that they knew with ARFID, but newly diagnosed cases of ARFID for anyone between the ages of five up to 18.

And on this slide is the reference of the paper if anyone wants to have a look in more detail. So during this period, we found, in this, younger age range, there were 319 new cases of ARFID diagnosed in that space of
time. Now we think that's probably an underestimate. We know that, as I said, healthcare services are under significant pressure.

Not everyone will have been fortunate enough to, get to the right services, get a diagnosis of ARFID and they may be supported elsewhere in healthcare services are not necessarily seen by a pediatrician or a
psychiatrist, but this is a good start.

It was thought before we did this study that there were three
subtypes of ARFID that have been proposed from the study results.

We now propose that there are four subtypes of ARFID and [00:40:00] we have derived that from data that we gathered. So not only did we ask the clinicians to report new cases when they have done that, we then sent them a questionnaire and asked them to provide more detail about the background of that individual presenting with ARFID, any medical complications, the type of symptoms they were presenting with.

ARFID subtype: lack of interest

So what we know about those subtypes, and this fits with what
Liz was talking about, we know that the first subtype, is what we call lack of interest, and that's relating to low appetite. Often in children you see, long meal times, really protracted small bites at a time. They just don't seem interested in eating.They don't seem particularly hungry. And again, that's something that may be feeding into adulthood, is that sort of feeling of forgetting to eat or just not really interested in food. And I know that was coming up in the chat as well, reflections on that.

ARFID subtype: the sensory subtype

The second subtype, is what we call the sensory subtype.

So this is relating to sensory sensitivities and typically
results in a low variety of, food intake. So you may get people who avoid whole food groups or textures. And as Liz was mentioning there may be, kind of textural elements, which people are very sensitive to, or they don't like things like fruit or vegetables.

It may be a visual sensitivity. It may be about temperature. It
may be about colour of the food. And as you can see, this is quite different to having low appetite. So the subtypes do differ.

ARFID subtype: fear subtype

The third subtype is what we term ‘fear subtype’. And that [00:42:00] relates to, having an aversive experience with food or having specific anxiety, such as choking. Sometimes triggered by
an aversive experience, but not all at once.

ARFID: combined subtype

And then the fourth subtype, is what we term the combined
subtype, so that is a mixed presentation, mixed symptoms, primarily from the lack of interest and the sensory.

So, the whole idea of the research was to capture how many
children and adolescents are out there with ARFID and how many new diagnoses are being made. We also wanted to know a bit about the referral pathways and how these young people were being treated. But the subtypes was, or finding out more about the subtypes was one of the primary goals of the research.

We need to know about subtypes to identify the drivers of
ARFID, to identify what's driving the problems. We need to know about subtypes to support screening of other symptoms or other conditions that might be associated with that presentation. So if the fear subtype, for example, is highly associated with anxiety, it's really worth thinking about anxiety screening or asking more questions about that in a more generalised sense when you're seeing a child or young person with ARFID.

And subsequently, subtypes also influence treatment pathways.
So we know that if you're presenting with a lack of appetite or lack of
interest in food. The treatment of them may look quite different from treatment of a fear subtype, and I'm not going to talk too much about treatment options today, but we can certainly share some resources about. There are different treatment options for [00:44:00] ARFID, and
hopefully have a discussion, when we get to the questions and answers as well.

Sorry that I'm sharing, graphs and, some more graphs on the
next slides coming up, but this is a nice visual representation of the
different subtypes. You can see along the bottom, the list of common symptoms.

So, we've got lack of appetite, lack of interest, difficulty with feeding
behaviours, sensory sensitivities, rigid eating, and fear of the consequences of eating.

And across the top you can see the four subtypes listed. And the numbers at the bottom represent the likelihood of, children being in each subtype. So the sensory, for example, you can see that sensory sensitivity bar is the highest, kind of symptom within that subtype. Lack of interest shows lack of interest highest, as expected.But also shows a significant element of lack of appetite. And the fear subtype, as expected, showing fear of consequences of eating as higher.

Now the interesting bit is then the combined subtype, where you
see, as it says on the tin, the combination of lack of interest, sensory
sensitivities, and to some extent rigid eating as well.

Now why am I talking about the different subtypes in detail in
this forum? Well, We then looked at, uh, what ARFID looks like in different populations and what it looks like, uh, and the subtypes in different, populations in males and females, and autistic young people and those that are not autistic.

So, bear with me because there are a [00:46:00] lot of colours shapes and lines on the screen all hopefully make sense when we get to the next screen. And I'm sorry I haven't translated the key across to the next screen, but orange squares, are young males, young autistic males; red
crosses - young males, not autistic; green diamonds, young autistic females; and blue crosses, females who are not autistic.

Now, hopefully this is where it starts to make a little bit more sense. And you can always look back at these slides, if you want to come
back to it, and spend a bit more time looking at it.

So what we saw is that for the sensory subtype, if I start at the top right of the screen, we saw that, this was not necessarily associated
with weight loss or not as much weight loss as the other subtypes.

Males and females were about equal across the age ranges but
more likely,autistic young people, having the sensory subtype. In the lack of interest subtype, you can see in the bottom left of the screen, you can see, all of the lines in the bottom left hand graph are generally going in an upward direction as age advances across that bottom of the graph.

So lack of interest subtype was more common in older children.
It was more likely to be associated with weight loss, not as much distress as other subtypes and not as likely in autistic young people.

In the fear subtype, bottom right, more likely to be associated
with weight loss, more likely to be an acute [00:48:00]
presentation, so a short-term presentation, highly associated with anxiety, and less likely to be associated, seen in autistic young people.

Going back to the combined subtype, you can see in the top left
of the screen, you can see that the lines on the graph generally have a
downward trend across all of the four groups. So more common in younger people and gets less common as children get older. More likely to be males, and if I just quickly flip back to the previous screen, so orange squares, if you remember, are young autistic males.

And you can see in the top left screen, that combined subtype,
the orange squares and that line is much higher than the other subgroups, when we did this part of the analysis. So younger autistic males are more likely to have the combined subtype with increased distress.

So how do we best summarise what we know about ARFID and eating
in autistic people? We know that those with ARFID should be assessed and treated by a multidisciplinary team and that's due to the wide variety of clinical presentations. You can see from the subtypes that we have identified and the differences in, gender and, whether they're autistic or not and whether they have other disorders associated with that.

They really need the support of a multidisciplinary team with a
specialist skill set within that team, and to be treated by those with
experience of ARFID. We know that being combined and sensory subtypes may be more likely in autistic people. That's not to say [00:50:00] autistic people don't experience the other subtypes, but we're more likely to see this.

We know that, there may be more overlap with, autistic sort of
symptoms or presentations. And that makes it really, really important to, for clinicians in particular, to take a really detailed history. And really get to the bottom of how longstanding symptoms are.

With these different characteristics of each subtype of ARFID, we know that clinicians need to identify the class or the subtype early on in
treatment, so that children and young people, and adults, can be provided with the most appropriate treatment and we can identify those things that might overlap.

Thank you very much for listening.

We're now going to move on to questions and answers, so I will
stop sharing my screen.

Harriet: Thank you so much Josephine, and again loads of questions and comments coming in the chat about how helpful both of the presentations have been today. Thank you for everybody who has also kept adding questions. We're compiling them and we're trying to get through as many as possible in the next 30 minutes.

So Liz, we're going to come to you first for questions because we still have some coming in, about, Josephine's presentation. But a question for both of you to start off with is, are you happy to share any references that you've mentioned in your presentations today?

That's a nod there from both the presenters. Excellent. Okay. That one is a nice tick. Objective achieved!

Interoception

Okay. So Liz, first question for you then is, do you have any research or know of any research on whether interoception and specifically hunger and fullness cues improve in people with autism and or ADHD if they're able to establish a regular pattern of eating?

Liz: So I've, since this question [00:52:00] came in to me about 10 minutes, I've been doing a literature search in the opposite window. I cannot find anything on this. I did find a really interesting review that talked about the fact that interoception is knotted up with lots of other things. This includes things like, for example, aversion to feelings of fullness.

So sometimes it's not just not being aware of things. It might be hyper aware of some cues and maybe less aware of hunger because you're responding to fullness cues because they're uncomfortable for you. And that relates to the fact that GI, diagnoses, gastrointestinal diagnoses are more common in autistic people as well.

So my hypothesis with regular eating is it would depend why this interoceptive difficulty.

If someone has alexithymia, I suspect it's not as simple as eating regularly. If someone has GI disturbances, then actually you'd want to get to the root of that before eating regularly could have a difference. But for someone who didn't have those things going on, in theory, one could begin to learn one's individual patterns of cues, but interceptive awareness training is very difficult, and it tends to be centered around things like heart rates and breathing.

Gastric stuff is, there's less research there, so jury's still out.

Harriet: All right. Thank you very much, Liz.

This is what happens with research, everybody. Sometimes you don't have a simple cut and dry yes or no question.

Liz: sorry!

Harriet: No it's one of those things, isn't it? It's why we keep doing what we do.

Eating in autistic people with a learning disability

Okay, then. So the next question for you then, Liz, is, is another research question. Is there research in autistic people who also have learning disabilities and therefore may have other difficulties in learning to eat and drink? So, pediatric feeding disorder was mentioned, dysphagia, which I think is, issues swallowing if I remember correctly.

So unsurprisingly lots of the literature in this area comes from occupational therapy, and it depends how, what kind of research one's interested [00:54:00] in. So lots of what's reported is the experience of parents, and the experience of professionals. There is a lack overall of research in every area of autistic people with learning disabilities.

And it's definitely true that I can't think of anything that encapsulates the lived experience of eating or feeding, for individuals, with learning disabilities. I don't think there's anything out there.

There's some really, really positive work in terms of how to best support the family as a whole, but nothing, I don't think, from the individual's perspective. And that's important.

This question is important because we need to work better using methods that include voices of people who communicate differently and use different methods than speaking because a lot of it has been work based on focus group type communication, for example.

Harriet: Yeah. Brilliant. Thank you, Liz. And just to flag to everybody as well, there is a link to a Padlet, which has just been posted in the chat. So presenters are very much like your views on the presentations today and your thoughts on future research. So it's completely optional, but if you would like to share your views, then the link for that has just gone in the chat, click on there and you can add your responses and comments to the question prompts that are up there.I think there's four, or you can add your own comments as well.

Okay. So the next question for you then Liz is, do you have any good resources on understanding hunger and thirst cues?

Resources for understanding hunger and thirst cues

Liz: A lot of the resources that are written are designed for neurotypical people who are on diets or trying to eat more intuitively, which is really, really, really unhelpful.

There are, there are some good resources on introspection in general, but again, I'd be really cautious about recommending them because there's not great, it's, it's not, it doesn't take into account people's autistic identities. So lots of the things people have been told to look for and listen for, and, you know, for example, somehow perceive are things that can be hard [00:56:00] versus impossible sometimes if you've got some like alexithymia going on.

What I can do is have a bit more of a thorough look and if I find anything that I think is reputable I'll share it along with the references and the other resources after this. But I'll make sure that it's done from an autistic perspective because you can do more harm than good by telling people just to try harder with these things.

I know that's not what you were suggesting but I'm cautious that I don't want to just go and recommend something more neurotypical.

Harriet: Brilliant. Thank you very much. And yeah, any of the resources that have been mentioned today, we will be sending those out with the recording links, probably in the next few weeks or so.So if everyone's scrabbling around going, Oh, what was it they just mentioned? Don't worry. We will be sending a list out.

Autistic children’s experiences of eating environments

Okay. So the next question we've got is how might the adult experiences that you've reported on in your research contrast with children's experiences where they have less control over food provision and their eating environment?

Liz: We've been interviewing children in schools about this. We specifically looked at their experiences of school dining halls, or as one of our teenagers called it “the seventh circle of hell”. They very much felt that actually home was quite a safe place for eating and because they could make accommodations in their environments and have the people with them that they trusted.

And school was sometimes a place where kids didn't eat at all, or would only eat snack foods, or were enabled to eat at school only by the provision of separate rooms and still feared going into the main canteen or dining hall.

My impression is that particularly as schools get fuller and there's various strains and stresses on the education system, kids in our study have reported more difficulties within school eating than home-related eating. Many kids reflected that home was somewhere where they could kind of just be themselves, stop masking, that sort of thing. But I do think it is, whilst there are challenges to being an adult and having all that responsibility and [00:58:00] organising food and things, at the same time, being a kid where there are multiple pressures to eat in different ways, including from your peers, really strong pressures, and bullying around eating, it's a particularly difficult time for children, so 10, 11, all the way through to early adolescence. So I would say things are probably worse for kids and it would be really great if we can get sensory-friendly dining environments, as a bare minimum standard in schools.

Harriet: Fantastic. Thank you very much. We had a lot of comments in the chat as well as questions with people relating really strongly to some of the experiences, that were described in the study. Both from a personal experience and from a professional experience saying, oh yeah, this is what people have been talking to me about.

How can we share this and improve people’s understanding of autistic people’s eating?

So really nice question from somebody was how can we help get this information more widely shared to increase understanding?

Liz: I mean, to some extent, this webinar is a brilliant place to be doing it. I know it's a bit like, preaching to the choir, if that's the phrase. It's people who are already interested in this topic coming to learn about it.

So, you all listening can be part of that, if you wish, which is talking and engaging with other people on this topic, if you personally have the resources and feel able to do so. And reading the resources we provide and sharing those with professional networks, if you're that kind of listener. But how can this go further?

I think there needs to be several pronged attacks, which is think about health systems, think about educational systems and how they're feeding into problems. There's going to be a policy-level implication, but in terms of actually just getting people's lived experiences out there, I think that we need to think about engaging with the general public, certainly in terms of their understanding of autism more generally, but the fact that eating is wrapped up in autism, I think would be a really good first step.

Because like my understanding is most people, neurotypical people don't even really consider that as a first step. So potentially, you know, outreach through [01:00:00] scientists and it would be really great if we could get some engagement from the press or from some of the people with wide reach to talk about this issue and get people's responses so we can do the research that actually meets the needs of people.

Harriet: Brilliant.

Jodie: Can I ask Nicole if you've got any thoughts in response to that one because a lot of your work is about sort of increasing awareness of ARFID as your charity’s name implies. But I just wonder if you have any thoughts about how we spread the word?

The power of conversations to raise awareness

Nicole (ARFID Awareness UK): Gosh, I think one of the most basic things we always say is don't be afraid to talk about it, you know, and I think, all too often with whether it's our food or autistic eating, there can be stigmas attached to it and actually the best and most simple thing we can do is be honest, be transparent, and just get these things in everyday conversation where possible. You know, formal events like this are absolutely fantastic, as Liz was saying, but I think the more that we can normalise these things the more helpful and the faster we can raise awareness of them.

Harriet: Fantastic. And we've had a related question that's come in, which again, I'd like to open up to all the panelists. In your roles and with your current knowledge,do you use (this potentially a bit contentious) do you see willingness within the department of health to appreciate fund and train for future NHS provision regarding autism and eating issues? Because the link there is we can't underestimate limitations without awareness and funding.

So yeah, do you see willingness within the Department of Health to appreciate, fund and train for NHS provision regarding autism and eating issues?[01:02:00]

Anyone can go first to answer that. Or if you'd like to plead the fifth and be neutral, that's also fine.

Jodie: Well, I think it's I think it's unfair to say there's not a willingness. I think a lot of what we have to do is education and raising awareness. And, if we don't talk about the sort of issues that are you know, the sort of issues we talked about today, eating and autistic people, eating and autistic children, then it's not a hugely known about topic. It's still in early days of research. So any changes, any funding routes are slow to change. And what I'm seeing over the last few years is that we're getting more of the right people with the right knowledge in the right advisory positions. So it will come, but it's about increasing awareness, increasing, the knowledge of the right people.

So it's not just about clinicians being aware, it's not just about families being aware. But it's about, yes, those people who make the funding decisions to be aware as well. And, you know, that can range from charity influence like Nicole does. It can range from, clinicians and researchers talking about those issues, it can range from families individually lobbying, their local MPs for awareness, for example. So everyone has a role to play.

Harriet: Fantastic. Thank you, Josephine. Nicole, you are muted, so I'm going to come to you.

Nicole: I am. I'm itching to piggyback off that one. And I agree completely with Josephine. And I think one of the most difficult things that Stacey and I've had to get our head around, or one of the biggest sort of, I guess, [01:04:00] hurdles that we've come to appreciate is the fact that any sort of policy change often requires numbers and it requires hard facts and although we can raise awareness. And again, it's great that these sorts of events are taking place. But ultimately, everyone is challenged, budgets are stretched and the numbers are, you know, often what make for deciding factors. Numbers come from research and research takes time. So I think. We as a charity have seen a huge, change over the past five years in terms of growth of awareness, more common knowledge about ARFID, for example, amongst not just the general public, but healthcare professionals, government groups, policymakers, but again, just getting those facts, getting that research down first it's, it's just a lengthy process.


Harriet: Thank you, Nicole.

The Eating Disorders in Autism Collaboration

Liz: I'd like to highlight briefly that in terms of funding, one recent ray of sunshine has been the funding of the Eating Disorders in Autism Collaboration in Edinburgh. And they are always looking for interested individuals to join with them who are professionally or personally interested in the area.

I've started working with them and the aim is to link up professionals and researchers and interested people, stakeholders around the UK, get a critical mass of people who care about this in order to try and enact this kind of change, despite all the barriers that we will inevitably experience to it.

So they have a great website. I'll add it to the resources. Have a look. And if you want to get involved on any level, get in touch with them. They are super welcoming.

Harriet: Fantastic. Thank you very much, Liz.

The tension between encouraging people to try new foods and acknowledging that this could be traumatic

Harriet: We've got another question again for all of the panellists. Now, although any advice should be taken on an individual basis, and you should be seeking [01:06:00] specialist help and support, a general question which has come up quite a few times is this: there's a tension between encouraging autistic individuals who have a restricted intake or diet to try new foods whilst at the same time acknowledging that that can be deeply distressing and traumatic.

So is there any general comments that anybody would like to make about how and when you do this or is it actually just going to make things worse?

Nicole: I can comment from the ARFID standpoint, and that would be that any pressure, any coaxing, any pushing to try new foods is actually going to have a detrimental effect, um, and most likely, you know, do more harm than good in terms of setbacks. So I think, again, Josephine talked about in her research that It's either Josephine or Liz. Sorry, I can't remember now which one.

But, you know, the greatest likelihood of trying new foods comes when, the individual does it all of their own free will. I think as a parent of a child with ARFID, I can say categorically, this is definitely true no matter how many times I offer something, it will always be turned down.But the moment it's her idea, um, it's likely going to lead to a success.

Harriet: Brilliant. Thank you, Nicole.

Josephine: Yeah, I'd say this kind of underlines the importance of individualised treatment plans and finding out what individual people's motivation is to eat. I've certainly had conversations recently around children who have really struggled with eating for a long, long time, and then they grow into adulthood and independence, and actually going off to university might be a [01:08:00] motivating factor to eat differently, or getting into a relationship where you might go out to eat more often, or with someone else more often. Might be a motivating factor.

So as well as finding out what the subtype is of the eating difficulty, it's also important to know what might motivate that person and what might motivate them one day might not the next day. And there's never one consistent answer.

In terms of kind of encouraging new foods, if, children in particular have a restricted diet, it creates a huge sense of anxiety in not only their parents, but all of their family around them. Food has a huge social element. So it's at every social occasion, it's at every celebration. And if a child isn't eating what they're expected to eat, everyone tends to comment on it.

Um, as Liz, you alluded to in your research from adults as well, so not just relevant to children. But it can really instill a lot of anxiety and trauma in whole families as a result. I think you probably do much better with introducing new foods if you have the support and the right team around you. And that's not necessarily just clinical, you need your immediate system around you to be very understanding as well.

Harriet: Thank you, Josephine.

Liz: I would say particularly outside of an ARFID context many of the principles, exactly the same principles relate. I was reading, a conversation with an autistic teenager the other day who'd recently introduced eggs to his diet, and how he decided to do it was that he loves, really loves bacon, and he realised that eggs and bacon was something that people were interested in, so [01:10:00] he thought about it for a few months, and then he tried egg in several different forms at once with his bacon, and he found one he liked. He wasn't keen on the rest. There's one at the side. But because he'd had the time to kind of think it through and think about what it works with things I already like, then he made that decision and now he's trying eggs on their own with toast and it turns out that works too because it's crunchy and kind of salty with butter on and it's got the same characteristics and he's figured that out. He's hacking his own eating.

People particularly, you know, once they're able to articulate to some degree their experiences, they're the experts in what's going to work for them. And I'm speaking not from an eating disorder perspective here, but for autistic people who have been pushed into eating stuff just because it makes them look more neurotypical.

Just a bit of reassurance that actually you are the expert. I know that this might not apply to children, might not apply to people with ARFID, but more generally, autistic people eating, that ultimately, people make the right decision for themselves at that time, and that is probably going to end up being the food that lasts in that person's diet, versus something they're just trying to try and get you off their back.

Harriet: Brilliant, thank you all so much for your comments. We're going to move now, to focus on, there's a lot of questions about ARFID coming up, which is fantastic, as we've got both Josephine and, Nicole here with us today.

Can ARFID be linked to a fear of vomiting, choking or unhealthy foods?

So the first question that's come up is, can ARFID be linked to a fear of vomiting or choking or unhealthy foods?

Josephine: Great question. Yeah, absolutely. It tends to be the more fear subtype that I talked about. So the kmore anxiety driven presentation. I briefly touched on, the sort of aversive experience, but, often you'll see children and young people who have had an aversive experience like they've had food poisoning, or they've [01:12:00] choked on something, or they've had something horrible to eat and vomited afterwards. And that is enough to tip them into much more restricted eating or not wanting to eat anything solid, for example, or not wanting to smell anything that smells like that again. So certainly, that can, kind of trigger ARFID. And that's one of the one of the interesting things about the variety of ARFID presentations, I suppose, is it can be very short-term, so it can just be a few weeks, or it can be over many years.

So yes, absolutely. The unhealthy foods aspects of that, might be a bit different and worth exploring a bit more.

Having more than one ARFID subtype and if they can change over time

Harriet: Lovely, thank you Josephine. And speaking of the ARFID subtypes, we've had a number of questions coming in about them. The two main ones is, can an individual present with more than one subtype? And a follow up question to that is, can they change over time?

Josephine: Yes, is the short answer.

Harriet (Laughing) ‘good! Then we’ll move on’

Josephine: They, they're not mutually exclusive. We have categorised the subtypes as best the data fit. But it's not to say if you have one, you can't have another. So it's to identify different drivers.

But, in the same way that people have different drivers for why they like certain foods, they'll have different drivers for why they dislike certain foods as well. And changing over time? Yes, as well. For the same reasons that the drivers behind it may well change. I think things like sensory sensitivities may stay more consistent.

But the sort of key driver or the [01:14:00] key problem, is likely to, well, may change over time, but I don't actually have any data on sort of consistency and stability of those, diagnoses, but that would be my best guess.

Harriet: Brilliant, thank you. and a kind of follow up question actually to that is, are there, is there any practice guidance recommending different treatments based on each subtype yet?

Josephine: It's coming. The more we learn about ARFID, through research such as this, the more we know, how to apply different treatments. So that there is evidence coming out. It's a bit piecemeal at the moment. What we hope over the next few years, is that, it kind of all adds together to make a bigger picture and the evidence-base increases. It's fairly slow, but it's happening. Nicole, do you want to add to that?

Nicole: No, I, I mean, you, you summarised it perfectly. Again, it just comes back to, you know, evidence numbers take research and research takes time. So it is, it is all coming, but it's just slow.

Harriet: Brilliant. Well, thank you for doing the research, both of you.

Existing research and resources on ARFID

So, another question has come up around treatment options. Now I just think you commented specifically and said, it's done on an individual and case-by-case basis, but people are asking, are there any general resources that you know of regarding treatment options for ARFID, especially about people getting more information about it? Just generally looking for research and resources that might be out there already.

Nicole: So if you go on to our website, ARFIDawarenessUK.org [01:16:00] There is a resources tab on there and it's got a bunch of resources that people can download.

These are things like booklets for schools, booklets for early years settings. (Oh, apologies. There's an alarm that's just gone off in the background). That said, it's not exhaustive, and we know it's not exhaustive. So one of the things we're looking at developing this year is a booklet for secondary schools.

So again, something that can help parents and children in the school environment.

There's also a sensory toolkit that was developed by some researchers during the pandemic at DeMott Fort University, and that's on there now. It was developed without ARFID particularly in mind, it's probably more appropriate as it is for autistic individuals. That said, it can be used with people who have ARFID. And again, that's something that we're looking to commission this year is actually one that has been researched and created with ARFID individuals in mind, so that is coming. And then there is just some other downloads on there that people can take, print off, take to their GP to help them have conversations if they're concerned about themselves or a family member.

And again, just some general information leaflets, both for people in the general public, but also healthcare professionals as well, if you're one of those and you'd like to learn more about it.

Harriet: Fantastic. Thanks, Nicole.

Josephine: I think, Harriet, that might link to, I saw some other comments and questions coming up about “how do we convince XYZ service to understand, diagnose, etc etc.” The resources, as Nicole mentioned, the more information you can arm yourself with, the more sort of [01:18:00] conversation you can have around those areas when you do get your appointments.

Where can people gather further information about the different ARFID subtypes?

Harriet: Brilliant. Thank you both very much. Another question that's come up is, for Josephine, do you have details of the questionnaire that you use and is it something that can be shared? Quite a few people asking in the chat about [that] for diagnosing or, for getting people, with more information on the different subtypes.

Josephine: Okay, yeah, so the questionnaire we used in the research won't be that helpful because that was more about gathering data, on individuals, with ARFID for clinicians to report.

What is worth looking up and we'll put in the resources is something called PARDI, which is a sort of structured interview, and freely available on the internet. So we'll include that because that's quite a nice one to kind of work through gradually.

Harriet: Lovely. Thank you very much. A similar sort of measurement question which has come up for all the panelists is, interoception is something that's been talked about a lot today. Are there any ways of measuring it or getting people's views on it, apart from asking them?

Liz: Interoception is a really hard thing to study because if you ask someone about their experience of interoception, you're measuring their ability to report on interoception, not their experience. Interception. And given that most of our interceptive experiences are things that we're not even aware of, so we might “think, oh, I need to eat soon,” rather than, “gosh, I have slight discomfort in my left lower quadrant.”

So we try and find proxies, like being aware of changes in heart rate, being aware of respiratory changes, that sort of thing. But how much that actually translates into a complex set of putting experience together to come to a conclusion about a, [01:20:00] intended or like desirable behaviour on the back of that.

That's less clear. And the review I was just speed reading during the seminar seems to suggest that there's a long way to go in properly measuring interception in this context of eating and autism.

What I will do is I will pop that review because I think it's quite user friendly, particularly conclusions, and I'll add it to the references I'm sharing.

So that's far more conclusive than what I can say in like five seconds.

Harriet: Fantastic. Thank you, Liz. Josephine or Nicole, any comments on interception?

Josephine: I don't have anything to add on that one.

Harriet: No, that's fine.

Nicole: Me Neither:

That's fine. Just checking. And probably our last question for today. And again, we said throughout that with any of these case, case studies for individuals, it should be taken on a case-by-case basis.

But there's been quite a lot of comments from the chat and questions people saying, “I'm really struggling to get a diagnosis of ARFID or a particular eating disorder”, which has been measured. “What can I do?” And again, obviously some of it is going to be on a case-by-case basis, but people especially looking for information or what to do if, you know, one of the things that's coming up quite specifically is, I want to get a diagnosis of this, but somebody else is going, we're not going to do that because so and so is autistic.


Is there any advice or resources you can direct people towards?

Josephine: Yeah, I think it's, it's really hard. And one of the sort of key things around diagnosis, is that, uh, clinicians don't necessarily think diagnosis is the be all and end all, but actually often it's really meaningful to families, and individuals because it's a form of validation and someone has believed your symptoms and believed that there is.[01:22:00]

I think, you know, we all have a lot more choice in terms of health care now and that is provided. So if you're struggling with your local service, you can ask for a second opinion, you can see a different GP, that may not be easy, that's a different matter, but you're within your rights to see someone else if you feel you're not being treated appropriately or you're not being listened to.

That doesn't mean that seeing someone else will automatically give you a diagnosis or they'll be, any more aware or understanding, but it's, not putting all your eggs in one basket. I think it's… we mentioned the resources from the ARFID Awareness UK website arm yourselves with those resources, and there's sort of evidence for why you think this is the problem, and this is why a diagnosis is important.

Treatment avenues are tricky, like I said, not commissioned widely. really different in different areas. I think it's really helpful to link up on, sort of websites, forums, where you can interact with other people having a similar experience. I don't have any in particular to recommend, Nicole may well do, um, but I think kind of linking up and hearing about how things work in a different county, city, whatever it is, might help shed some light on what to do.

Brilliant. Thank you, Josephine. Nicole or Liz, we've got about 30 seconds left. If you've got anything to add, no pressure.

Nicole: Can I, can I jump in? We do have a Facebook support group that people can access via our website. We have a closed one, which does not allow health care professionals. So parents and carers can feel comfortable discussing themselves or their child’s situation.

We also then have an open one. And the other thing is, you know, the great [01:24:00] thing about the Internet is that it's democratised our access to information. So Google, Google, Google. Look for research papers, look for evidence based. Anything that's based in evidence. You know, the world's sort of your oyster and we're all in it together.

Harriet: Fantastic. I'm afraid that's all the time that we have for today. Thank you so much, everybody, for all of your questions and for all of your comments on the Padlet as well. There's loads going on there. They really do allow us to dig much deeper into such an important topic. So all that's left for me is to say a huge thank you to Josephine, Elizabeth and Nicole for their time today and joining us and to all of you for attending.

It's been an absolute pleasure having you with us. Thank you so much. Hope you enjoy the rest of your days. Thank you.