We are the Association for Child and Adolescent Mental Health or ACAMH for short. And this is ACAMH learn. So in the first part of this two-part session on autism and eating disorders, I'm going to start off by talking about what is autism now, giving a bit of an update as to how our understanding of autism has changed over the last few years. I'll then briefly introduce the topic of eating disorders and disordered eating, and then go on to present some data on the link between autism and eating disorders. Next, I'll go on to think about implications of that research for delivering eating disorder services, and particularly delivering them for autistic people. And then I'll finish with some initial thoughts on mechanisms, on things that might link autism on the one hand and eating disorders on the other. So there's a pretty broad consensus on what is autism. There's the notion that this is a condition that has fundamentally two types of characteristic, two types of symptom, as they would be called in the medical model. The first concern, the social world. And we're talking here about differences in social relating and social communication. And then the second type of autistic symptom concern an insistence on sameness, a preference for predictability and for routine, and also a different style of processing sensory information. And the person can receive a diagnosis of autism, according to the diagnostic manuals, if they have both of these types of autistic characteristics to a notable degree, and they also experience significant impairment or disability as a result of having these autistic differences. So there have been some really important ways in which our understanding of autism has changed in the last 20 years. And I want to outline those because I think they're quite important for thinking about the relationship between autism and eating disorders. So the first one has been a shift from thinking of autism as a categorical condition, something that you either have or don't have, with autism being thought of as this qualitatively distinct state of development to non-autism, to a dimensional model. So really, if we look at the data, I think the dimensional model has a more convincing understanding of autism. And here, we think of autism as sitting at one end of an autistic trait continuum that extends all the way through the general population, with no natural cut point between being autistic and having high autistic traits, but not actually meeting criteria for the full autism diagnosis. The second important change concerns how we think about what autism is, but also what gives rise to the many challenges that autistic people commonly face. So previously, a medical model, or perhaps we should call it a pathology model, predominated. So here, the idea was that the high levels of disability, alienation, and distress that autistic people do often experience, that's understood in this medical model and this pathology model as a direct consequence of the individual's autistic characteristics, a inevitable consequence of autism. And also within this model, the characteristics of autism are understood as impairments. So things have really started to change, partly reflecting the growing voice of autistic people in autism research and practise. And there is a transition going on, I would argue, to a different way of thinking about autism, which is often called the neurodiversity model. So here autism is thought of not as a disorder, but as a difference, a form of neurodivergence. And the disability, alienation, and distress so commonly experienced by autistic people is not thought of as a direct consequence of being autistic or the neurodivergence, but rather it's seen as arising from a misfit between, on the one hand, the individual and their characteristics, and on the other hand, their environment, what it affords them and what it asks of them. A second, very notable-- a third, sorry, very notable change in our understanding of autism is that it was once thought of as a rare condition, whereas now it's considered common. And you can see here from these data, which show the rates of autism diagnosis on the special educational needs records of children in England, that autism is now pretty commonly diagnosed. So around about 3% of English pupils have an autism diagnosis on their special educational needs records. And that's about 4% for boys and 1.5% for girls. So there has been a growth in the diagnosis of autism over time, such that it's now considered a pretty common condition across the lifespan. And then the fourth change in our understanding of autism I wanted to highlight concerns sex and/or gender differences in autism. So it's important to recognise that there is a diagnostic bias against autistic girls and women. So autistic girls and women are less likely compared to autistic boys and men to get an autism assessment. And if they do get that assessment and receive a diagnosis, they tend to receive that diagnosis, on average, later than boys and men. So this is changing and progress is being made in many health systems. But nevertheless, autistic girls are still more likely to fly under the diagnostic radar compared to autistic boys. And one of the key reasons for this is that actually a person's sex and/or their gender influences how their autism is experienced and how it presents. And so for many autistic girls, their autism presents in a way that doesn't really fit with conventional understandings of autism, which were, until recently, largely based on studies of largely male samples. So when we think about how sex and gender influences the presentation of autism, researchers told us a few important areas that I think it's useful for clinicians to know about. So please bear in mind, here, I'm talking about averages. I'm talking about tendencies. So when I talk about sex/gender differences in autism, I'm certainly not saying all autistic girls are like this, all autistic boys are like that. I'm talking about tendencies. So on average, compared to autistic boys, autistic girls have higher social motivation. They have fewer or perhaps less obvious repetitive behaviours. In terms of their co-occurring difficulties, they're more likely to have internalising difficulties. So things like anxiety and depression. And that's especially true, this sex/gender difference becomes especially notable from adolescence onwards. And they're also less likely to have more overt emotional and behavioural difficulties, which we would call externalising problems. And then another important sex/gender difference here is that autistic girls have, on average, a greater tendency than autistic boys to camouflage or mask their autistic characteristics, which, of course, is very likely to contribute to the diagnostic bias against autistic girls. OK, so moving on to the next part of the talk. These are the eating disorders and types of disordered eating that, really, we're going to be focusing on today. Most research in this area concerns the overlap between autism and anorexia nervosa, where we see severe restricted eating in response to weight and shape concerns, body image concerns. There's also some work in relation to bulimia nervosa, which is an eating disorder, again, which is viewed as having body image, weight and shape concerns at its heart, but it's characterised by binge and/or purging behaviour. There's a little bit of work I'm able to talk about binge eating disorder. And then this fourth category here, Avoidant Restrictive Feeding and Eating Disorder, or ARFID, which is a relatively new addition to diagnostic practise, is when somebody has a significant restrictive eating, but it's not driven by weight and shape concerns, body image issues. And that is an emerging area of interest in terms of people trying to understand the overlap with autism. We'll also be talking a bit about disordered eating. And I've put a definition here of what I mean by that. So here, I'm talking about a spectrum of eating behaviours and attitudes towards food and appearance that are persistent and are detrimental to health and well-being, but which don't meet criteria, which don't qualify, if you like, for a specified diagnosis of an eating disorder, such as the ones you see on this slide. So what is the link between autism and eating disorders? Well, from a clinical research point of view, the story really starts here in Sweden with the work of a child psychiatrist and a clinical academic called Christopher Gillberg. And he had started to notice, amongst some teenage girls with anorexia nervosa, certain autistic characteristics. And he put forward the idea that perhaps there was, if you like, an overrepresentation of autism amongst women who were experiencing anorexia nervosa. And following that, which he did in the 1980s, him and his colleagues did a series of studies known as the Gothenburg Studies, where they recruited a cohort of 50 people with adolescent onset anorexia nervosa. Almost all of them were female, well-over 90%. And they followed them up over the years. And one of the things they did was to assess them for autism at various time points. And you can see from the slide, which presents different estimates of autism within this same cohort, different time points, different studies, but they ended up concluding that somewhere between 20 and 30% of these people, largely women with adolescent onset anorexia nervosa, were also autistic. So a very striking finding, a very much higher prevalence of autism than would be seen in a general population of women. So those findings were actually pretty controversial. And they provoked quite a lot of scepticism initially. Firstly, this reflective questions about the assessment measures used in the Gothenburg Studies. Although, actually, the later studies use very, very rigorous and valid assessment methods. But I think the more profound criticism, the findings, concerns starvation, and particularly the psychological effects of starvation. So the point here is that the psychological effects of starvation, some of them can mimic the characteristics of autism. And that can include starvation related changes in social cognition, starvation-related changes in social motivation, and also changes in flexibility and a tendency to develop focused interests. So the basic idea here was people were saying, perhaps you are mistaken some of the effects of starvation, which after all, is obviously highly associated with anorexia for characteristics of autism that's leading you to overestimate the proportion of your sample of people [INAUDIBLE]. Subsequent research has actually been pretty reassuring on that front. And to really counter this argument that starvation is really what's driving these high estimates of autism and eating [INAUDIBLE]. So studies using high quality autism assessments confirm the Gothenburg findings. Studies using historical report that sought to get at autistic characteristics prior to the onset of any eating disorder, prior to any starvation have also been in agreement. When people look at weight-restored samples, people who are no longer experiencing starvation, we still find high rates of autism. And perhaps most convincingly, studies that measured autistic traits even before the onset of an eating disorder, they all add up to this idea that there really is a true and pretty substantial link between autism and anorexia nervosa. And I would say that on current evidence, we're looking at perhaps somewhere between 20 and 30% of women who are experiencing anorexia nervosa also being autistic. So a substantial overlap. I've recently, with Audrey Linden at The Open University, done a literature review of the eating disorder literature. And also as part of that, we consulted with clinicians and with people with lived experience of being autistic and having an eating disorder. And so through this talk, I'll be sharing some of the findings from that exercise. And this is one instance of that. What about the degree of overlap between autism and other eating disorders other than anorexia nervosa. So as I said, most of the evidence is on anorexia, but we do have some information on other eating disorders. So ARFID is probably the next most researched eating disorder in this respect. And the evidence base is imperfect. But it does point very clearly to the idea that autism is significantly associated with ARFID. And in child samples, we'll sometimes see prevalence rates of autism in people who have ARFID up around as high as 30%. There is some initial evidence for an association between autistic traits, so measuring people's autistic traits, rather than looking at whether they've actually received a clinical diagnosis of autism. So autistic traits are associated with bulimia nervosa and also with binge eating disorder. So that's certainly suggestive of a link. And what is very clear from this literature, and this is an important point, clinically, is that most autistic people with an eating disorder are undiagnosed with autism at the point they present to services. And what I'm going to go on to say, I think, will that that's actually quite important and is a problem in terms of delivering good services to people with eating disorders. So given this overlap, this link between autism and eating disorders, I'd like to briefly explore some of the implications for delivering eating disorder services. So again, drawing on that literature review, and consultation with clinicians, and experts by experience site that I mentioned earlier, the literature on outcomes from eating disorder treatment, but also studies that have considered treatment of disordered eating for autistic people or people who don't have a diagnosis but have autistic traits, it's at an early stage. It mainly focuses on adult women with anorexia and high autistic traits. But here are some tentative conclusions that I think are helpful for our topic. So when we think about recovery from anorexia, and if we conceptualise it narrowly, we define recovery as restoration of weight or reduction of core anorexia symptoms, there is actually no evidence that we see worse outcomes for patients who are autistic or who have autistic traits. However, when we think more broadly about recovery to include things like other aspects of mental health being better beyond the eating disorder, when we think about functioning in education and employment socially, there is evidence for worse outcomes in eating disorder services if you're autistic compared to people who aren't autistic. And also, there is some suggestive evidence from several studies that autistic people and people without the diagnosis with high autistic traits may require more intensive services when receiving treatment for anorexia nervosa, and also experience a greater risk of receiving inpatient care. So if you like, I think we can understand having to be escalated to inpatient care as a sign that somebody really is pretty ill with an eating disorder, so therefore, it's a bad outcome if we find one particular group is especially likely to end up needing inpatient care. So given the evidence that autism is really common amongst people seeking help for eating disorders, including anorexia nervosa, and that that group of people appears to have worse outcomes to have a tougher time in services, myself and some colleagues have been researching this for several years. And this is one of the studies we've done, which is funded by the charity autistica, where we wanted to better understand barriers to service access for autistic women with the eating disorders, and to better understand what causes and maintains restrictive eating disorders in autistic women-- if you like, why they have eating disorders because, of course, that can be really helpful in thinking about developing better treatments and, indeed, prevention. So in that study, we had a first phase, where we did qualitative work to generate ideas and develop our understanding of what was going on, and then proceeded to quantitative work to test out the ideas generated in that first phase. And today, I'm largely going to be talking to you about the qualitative findings from this project. And just to say, this is very much a team effort. And these are the key players who contributed to this work. So what did we learn about autistic people's experiences of using eating disorder services, including how this can be improved? Well, a key paper for us in that respect was led by Charlie Babb. It involved interviewing autistic women with experience of anorexia nervosa, many of whom had first come into contact with services in adolescence, plus parents and health professionals. So here are some of the key findings from that work. So first of all, just to reiterate what I said before about the underdiagnosis of autism in this population, most participants were diagnosed with autism only after they were diagnosed with an eating disorder. And actually, on average, there was an eight-year gap between them coming to clinical attention for their eating disorder and receiving their autism diagnosis. So a really unhelpful delay, I would say, because it really matters. If you're autistic in eating disorder services but your autism is unrecognised, it influences your experiences of being in services and your chances of benefiting from those services. So this woman here told us, when I was in hospital, I kept getting told off for walking on tiptoes and fidgeting a lot. They thought I was doing these things to burn more calories, except I've been doing them for as long as I could remember. So the walking on tiptoes, the fidgeting was an autistic behaviour, but it's been misinterpreted as her care team as an eating disorder behaviour. And you can see the negative effect that's having on the therapeutic alliance. And again, we see that playing out in this quote as well. So another key theme that we were told about was the lack of autism knowledge in mental health services, and particularly in this instance, in eating disorder services. Although this is changing because there are lots of efforts to address this going on, but in general, there is evidence of low levels of knowledge about autism in many eating disorder services, which is perfectly understandable because it's not considered part of training for many people working those services, and this impacts upon treatment. So here, this woman said, I felt like they didn't care. I used to sit in the same seat just because I knew where it was. And every day a different staff member would go and sit there and they wouldn't understand why I was getting upset. So again, because she's autistic, she is looking for certainty and predictability in where she sits when she's expected to go in and eat as part of her eating disorder treatment. The staff don't know that this is an autistic characteristic and feel that it would be better for her to sit in a variety of places. And as a result, she gets really stressed out. And presumably, that impacts upon her ability to actually eat and restore her weight. This health professional said, I think the coexistence of autism, as well as eating disorder is something that just makes some adult teams feel it's just too complicated. We just don't really know what to-- we don't really want to know. So we have come across instances of teams where they have tried to screen out autistic people saying, we're not commissioned for this or we don't have the knowledge. So again, that's another way, I think, in a lack of autism knowledge impacts upon autistic people's chances of getting help for eating disorders. And it's important to show the flip side of this, which is when there is knowledge there in the teams, it can make a real difference. And so, for example, when I explained about needing the food separate, they were very good about accommodating that, and they would separate out the food. And they didn't necessarily challenge that. So here, we have somebody who is taking account of the sensory sensitivities of some autistic patients. So this health professional said noise is something that has got to patients. And they found that really difficult. We made allowances in terms of music therapy taking place far away from her as possible. So I think positive signs as to how even quite rudimentary knowledge about autism can really enhance the delivery of eating disorder treatment to autistic people. Overall, knowledge was patchy and tended to rely on personal experience of staff rather than systematic training. Although, as I've said, I think that situation is improving. So the third theme that I want to stress today from this qualitative work about how services can be challenging for autistic people is that standard eating disorder treatments aren't always accessible to autistic clients. There are barriers to accessing these, which is problematic because if those barriers could be removed, those treatments could be effective and could help to address a person's eating disorder. So this parent said, my daughter has not been able to go through the sausage machine of evidence-based care. She keeps falling off the conveyor belt. We heard a fair amount about CBT. This person said, with the CBT, maybe their problem is they assume you have a lot of these skills already. And I think what she's referring to there are things like, to access CBT, you're often called upon to introspect and identify certain feelings that you might have and articulate those feelings, to link those to certain thoughts that might have been going through your head at the same time. And for many autistic people, that's really challenging. And so that can make CBT ineffective. And actually, what might be required there is the clinician identifying that as a challenge in the autistic client and then taking time to help them build those foundational skills that would then make CBT accessible. We also heard a lot about groups that were taking place as part of eating disorder treatment, as being a challenging and unproductive for autistic people in eating disorder settings. And as you'll see from these quotes, I think it's really important to stress that-- what this research is not showing is that you can't use groups with autistic clients. I think what it's much more telling us is that unstructured groups, where there aren't clear tasks and there's not predictability, can be unhelpful for autistic clients because it can be so stressful for them that it means that they're actually unable to engage with the therapeutic element of what that group is intended for. And again, a more positive story, which is once the individual autistic person's challenges with accessing a treatment are identified, thought about, and responded to, that can make a real difference. So here, we see from this quote the adjustments they agreed were agreeing a time and a day for key work sessions, i.e, providing predictability, giving me plenty of notice of change. And then this next bit refers more to some sensory elements of autism. And I could bring my soft duvet cover in. And that then meant that I was comfortable and I could sleep. And it's just minor things like that can make a really big difference. So drawing on the literature and also consultation that we've done with clinicians and experts by experience, I just thought I'd share with you some themes that emerged from that work for how services can be adapted to make them more autism friendly and more effective for autistic people. So sensory adaptations is a big theme, understanding and responding to the sensory processing differences of autistic clients, Modifying communication, again, to accommodate the different style of communication that autistic clients may well have. There's a general theme about just being sensitive to potential differences in thinking styles associated with autism. And also, even if someone doesn't have a diagnosis with autistic traits and how this could affect a person's eating disorder, but also their experience and ability to access treatment. Quite a common idea is that often autistic clients might need a longer treatment duration compared to non-autistic clients, including to help build of foundational skills that I spoke about before that they might need to access certain treatments like CBT. Also, just extra time to build trust and mutual understanding in the interaction between the autistic person and their most likely non-autistic therapist, and also because many autistic people find change inherently challenging and so may need a bit more time to make changes and to accommodate changes. Flexibility and treatment goals is another idea that came out strongly from this work. And that relates to this question of whether recovery might look different for autistic people compared to non-autistic people in these [INAUDIBLE] services. A good example of this concerns the variety of foods eaten. So you might have an autistic person who's developed a severe restricted eating problem ended up with a diagnosis of anorexia. Now, when you think about their recovery, they may, ever since they were young, have eaten actually a very limited range of foods. And so their recovery is probably not going to involve them having a very diverse palette of foods that they eat. And so that would be an inappropriate goal to set for them in eating disorder treatment. And so there might need to be a bit of compromise in people accepting that whilst they may not eat a wide variety of foods as part of their recovery, the thing to focus on is making sure that they get sufficient nutrients and calories from a relatively limited range of foods. There's also work that needs to be done around building adaptive coping skills, if you like, addressing the challenges, addressing the person environment misfit that, if you like, contributed to the development of their eating disorder and the stress that that involved. And again, another theme, especially for young children and young people, but also young adults actually, is that there may need to be greater support for an involvement of carers, including the provision of psychoeducation to help families understand the co-occurrence of eating disorder and autism and what this could mean for how they combat the condition, but also what recovery looks like and how they stay well in the future. OK, so I'm going to finish this first part of the talk by moving now to this topic, towards understanding eating disorders in autistic people, really beginning to explore ideas that I know Dr. Catalano will take forward in the next part about what are the mechanisms that could help us understand the link between autism and eating disorders? Because, of course, this is such an important topic for thinking about preventing the development of eating disorders autistic people, but also helping treat eating disorders when they do occur [INAUDIBLE]. And I think a useful stepping off point for this discussion is this really, that we should at least be open to the idea that standard eating disorder treatment models don't always address the causes of the eating disorder as it occurs in an autistic person. So we can ask, are there autism-specific mechanisms that cause and maintain restrictive eating disorders? And the related question is, are these not well-addressed by current treatment approaches? So to begin to develop our understanding of this matter and to begin to develop answers to these questions, as part of that study I mentioned earlier, we conducted a qualitative study, the same sample but different analysis and data, with 15 autistic women who experienced anorexia nervosa, again, often with its onset in adolescence, 12 parents and 16 health professionals in eating disorder or autism services. And what we found was that really a core concept here is distress. So many of the people in our sample told us that, particularly as they were transitioning into adolescence, and then again as they were transitioning from adolescence into adulthood, they found themselves really struggling to manage as almost always undiagnosed autistic teenage girls struggling to manage the escalating demands that were being placed upon them. Be that educationally or be that socially. And were often experiencing things like bullying, social alienation, social exclusion, as well as things like sensory overwhelm, and found themselves with very high levels of stress that were often difficult for them to understand, difficult for them to manage and regulate. And several people in our sample described how their subsequent development of restrictive eating was like a coping behaviour. It was a way that they used to try and cope with their overwhelming and high levels of distress. And there seems to be a couple of ways in which restricted eating can do this. One is through starvation. People would report a physiological numbing of emotions and also sensory overwhelm that could result from being in a state of starvation. And the second mechanism really is about imposing predictability and control through management of eating and burning of calories that could, I think, especially to autistic people, bring a sense of calm in the face of that high levels of stress. So here are a couple of quotes that illustrate that. And what these quotes draw out is that we didn't hear a lot about body image concerns in this sample, despite the fact that these women had all been diagnosed with anorexia nervosa, which, by definition, should be driven by weight and shape concerns, body image worries. So what we were hearing, and so what we have formed as a hypothesis, is that when autistic people develop an eating disorder, it may well be less driven by body image concerns, by weight and shape concerns, and more driven as an attempt to regulate unbearable inner experiences, to manage unbearable inner experiences. And that's an interesting idea that I think is being taken forward in research and is well-worth taking seriously because it certainly came out of our interviews with autistic women, with parents, and with health professionals. So what causes a high level of distress? Well, I've alluded to it really. And this definitely fits with what I was saying about the neurodiversity model, which is that it's about person environment fit. It's about the experience of growing up as an autistic person without a diagnosis that can-- commonly without diagnosis and the support and understanding that come with it, and therefore, a misfit between, on the one hand, a person's autistic characteristics, their preferences, their needs, and on the other hand, what the environment is affording them. And the consequence of that can be all sorts of things like I mentioned before, things like bullying, social rejection, alienation, and all these things that can contribute in any one to high levels of stress. It's also worth noting that we did identify in these data the likelihood of a path between autism and eating disorders that isn't actually mediated by high levels of stress. It doesn't necessarily go via high levels of stress, but rather, we found some evidence, perhaps, for some direct effects on an autistic person's likelihood of developing restrictive eating. So, for example, many autistic people have sensory differences in how they process taste, smell, and texture when they're eating. And that means that for many autistic people, quite a range of foods can essentially be quite disgusting and off putting. And we heard stories of people how a lifelong challenge in eating contributed to their risk of developing restrictive eating because I think that as an emotion regulation strategy is much more available to you if, in the first place, food is quite a fraught thing already and you experience [INAUDIBLE] disgust in the face of certain quite common foods. Another really interesting potential direct effect between autism and restrictive eating difficulties is to do with interoception and proprioception. So the ability to sense internal signals from your body and make sense of them and act upon them. And it's summed up nicely by this quote here. Girls without autism do feel hunger, but they're actively working against those feelings of hunger. Some of the girls with autism I've spoken to don't seem to recognise it. There's something about their sensory profile. [INAUDIBLE] is they don't experience hunger in quite the same way. And we did hear tales of some autistic people in our sample saying, I can skip meals. I just don't notice. And I would understand that as a autism-related difference in the capacity to sense and make sense of internal bodily signals. OK, so to finish this first part of the talk, it's important, I think, when we're trying to help autistic people who have a disorder to avoid overly individualised decontextualized understandings of autistic mental health challenges, but rather to understand them as arising from person environment fit, and certainly not just a simple extrapolation of the person's autism. Under diagnosis of autism continues to be a major barrier to good mental health for autistic people, according to their risk of developing eating disorders. It increases their risk of getting the eating disorder in the first place because it makes them more likely to get into states of high distress. But it also, as I've explained, decreases opportunities for accessible and effective care. Services for eating disorders can be inaccessible to autistic people. Despite the very best intentions of the people who work in them, they can present practical barriers to access. Occasionally, they can be overtly exclusionary, such as people saying that this isn't an autism service. It's an eating disorder service. But I think much more commonly, it's more a case of services struggling to adapt their treatment pathways to make them accessible. And then, crucially, and this is something that Dr. Catalina is going to go on and present new work on, we currently need to build the evidence base for understanding autism-specific causal and maintaining factors which may impact upon the development of eating disorders, which in turn can inform development of more effective and more accessible treatment pathways for autistic people who have developed an eating disorder. Thank you. [MUSIC PLAYING]