For this session we welcomed Dr. Francesca Solmi, UCL, and Dr. Lisa Dinkler, Karolinska Institutet to discuss papers on Autism and Eating Disorders.
Dr. Francesca Solmi’s JCPP paper ‘Trajectories of autistic social traits in childhood and adolescence and disordered eating behaviours at age 14 years: A UK general population cohort study’. doi.org/10.1111/jcpp.13255
Dr. Lisa Dinkler’s JCPP paper on ‘Anorexia nervosa and autism: a prospective twin cohort study’. doi.org/10.1111/jcpp.13265
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About the session
- Mental Elf blog
- Dr. Francesca Solmi paper doi.org/10.1111/jcpp.13255
- Dr. Lisa Dinkler’s paper doi.org/10.1111/jcpp.13265, a Research Digest of the paper, and a video abstract from Dr. Lisa Dinkler’s paper (below) or on the ACAMH YouTube Channel
- Food Sensitivities and Proclivities – Podcast Episode 6 ‘Autism, a parents guide’ with Dr. Vicki Ford
- ACAMH Topic Guides on Autism, and on Eating Disorders
[00:00:00.610] – Introduction
Hello. We are the Association for Child and Adolescent Mental Health, or ACAMH for short.
[00:00:09.470] – Andre Tomlin
Thank you, Matt. Good evening. Good morning. Good afternoon, everyone. Welcome to our ACAMHs campfire session on eating disorders and autism. My name is Andre Tomlin, I’m from the Mental Elf, and it’s a pleasure to chair this session this evening. We’ve got lots of hellos already in the Zoom chat. Do introduce yourself if you haven’t already. It’s really good for us to see who we’ve got in the meeting, and it’s lovely to see such a variety of people. We always have lots of people and a real mix of people at these sessions.
[00:00:41.290] – Andre Tomlin
So do please say hello. Tell us your name. Tell us where you’re from as we go along and do please use the chat to just share your thoughts and comments as we go along and to ask any questions that you have for our panellists. So we’re talking this evening about eating disorders and autism, and we’ve got a really fantastic panel. First of all, we have Francesca, that’s Dr Francesca Solmi from UCL Psychiatry in London. Francesca is a psychiatric epidemiologist, and she’s written one of the studies that we’re going to be talking about this evening.
[00:01:19.790] – Andre Tomlin
We also have Lisa, that’s Dr Lisa Dinkler from Karolinska Institute in Stockholm in Sweden. She’s also a psychiatric epidemiologist, and she’s also written a paper that we’re going to be talking about tonight. So regular audience members for these CAMHs Campfires, you’re going to notice something straight away, that’s a bit different this evening. We’ve got two papers that we’re going to be talking about. We normally have a paper that we focus on. This evening we’ve got two papers and they’re about the same thing. They’re trying to answer the same question.
[00:01:52.030] – Andre Tomlin
They do it in a slightly different way with a very different group of people, some from England and some from Sweden, but we thought we’d talk about them both together because they do highlight some interesting differences, and they do help us kind of move forward the science in this area. So really interesting that we’re covering two papers and we also have, I’m delighted to say, a young person with lived experience of eating disorders and autism. Her name is Lucy, and she’s a young woman from London, and she’s going to be sharing her lived experience this evening.
[00:02:31.970] – Andre Tomlin
As always, at these CAMHs campfires we like to have a young person present who can reflect on what happens in the conversation and share their own thoughts and ideas. My colleague, Douglas, Douglas Badenoch is also on our panel, and you’ll be hearing from Douglas later. He’s a co-founder and Director of the National Elf Service with me. He’s an information scientist like me, and he’s got a black belt in critical appraisal skills, unlike me. So first of all, tell us what profession best matches you. Tell us who you are.
[00:03:07.890] – Andre Tomlin
There’s a poll that has popped up on your screen. Hopefully there’s something in this list that relatively closely matches what you do. If you can just choose one of those that will really help us get a sense of who we’ve got here in the room for the webinar. Okay. So thanks very much for everyone who answered that. As usual, we’ve got a really nice mix of people. It looks like the biggest single group here this evening if educational professionals. We’ve also for a good sized group of psychiatrists. CAMHs professionals. Clinical psychologists, psychotherapists, students. Yeah, a really nice mix of people.
[00:04:13.150] – Douglas
I think we need a new call. Other is the biggest category.
[00:04:18.110] – Andre Tomlin
Yeah, absolutely. I guess we could have a list of a couple of hundred things, couldn’t we. A couple of hundred different groups that people come from, but yeah, maybe we need to revisit, Douglas, that’s absolutely right. So I’m just going to kind of put this conversation into perspective. As somebody who reads a lot of mental health research, eating disorders is a topic that we’ve covered a lot on the mental health blog, and it’s a topic that is very much in the minds, not just of researchers, but obviously of people who provide services.
[00:04:51.830] – Andre Tomlin
And it’s something that’s generally thought of as we don’t know as much about it as we should. We don’t provide a good enough service for young people. We don’t understand enough from research. Maybe we’re not funding research as much as we should, but really stark statistics that pop up all the time about eating disorders have the highest mortality of any mental health condition. Really serious disabling condition and yet we’re not investing as much in understanding it and helping people as we could. Of course, in the UK, we’ve invested a whole lot more in eating disorder services over the last decade or so.
[00:05:36.490] – Andre Tomlin
And that has really helped to reduce some of the waiting times and provide better services for young people, but we’ve also seen higher rates of mental illness generally in young people since the pandemic and really worrying increased numbers of young people at risk of eating disorders that’s being reported very regularly at the moment. It’s estimated that about 20% to 30% of people with anorexia nervosa will also meet diagnostic criteria for autism spectrum disorder. So there’s a definite comorbidity between these two conditions. There’s a definite link here and that’s really what we’re going to talk about this evening.
[00:06:16.910] – Andre Tomlin
We’re going to focus on that group. What is the link between eating disorders and autism? So, Lisa, I’m going to ask you initially to just give us a bit of an introduction to that, give us a flavour of what we know and importantly what we don’t know about the link between eating disorders and autism.
[00:06:38.610] – Lisa Dinkler
First of all, I would say there’s really a lot we don’t know. The research until now has mostly focused on the link between anorexia nervosa and autism. There’s actually quite little research on the other eating disorders, including polymer nervosa and binge eating disorder, and also the less well studied, the rest category, other specified eating disorders. So that’s the first thing I would like to say, and then when it comes to anorexia nervosa and autism I think the evidence so far is really unclear. You mentioned this estimate of 20% to 30% of people with anorexia will meet diagnostic criteria for autism, and that’s only one of the numbers out there actually.
[00:07:27.580] – Lisa Dinkler
I would say there is a broad range between 4% and 50% of the people with anorexia will meet autism criteria, and that broad range really tells us that we don’t know much, and I think we’re going to discuss this much more, why this is the case and how we can get closer to the real number maybe.
[00:07:50.550] – Andre Tomlin
Okay. So it sounds like there’s a lot more that we don’t know than there is that we do know. Francesca, do you want to add anything to that?
[00:08:00.860] – Francesca Solmi
No. I think Lisa has been very comprehensive in her answer and I think I saw comments popping was on the ARFID being another eating disorder that has not really been studied particularly with relevance to autism, and I think this might be something else that we touch upon today at some point.
[00:08:18.510] – Andre Tomlin
So give us, Francesca, a bit of a kind of overview of what we think the links may be and some of the ideas, some of the mechanisms, some of the ideas around why we think young people who have eating disorders may also have autism or autism traits, as you refer to in your paper.
[00:08:35.730] – Francesca Solmi
Yeah, sure. So a lot of the research so far has focused on clinical samples of samples of adolescents that were in treatment for anorexia, and what has been observed is that a lot, as we said, between 5% to 50% of people in this sample had traits that resemble very much those that are seen in people with autism, and what we don’t really know is what is the direction of the association between these two conditions? So is it because, is it a true comorbidity? So is it true that women with anorexia or men with anorexia have this increased rate of autism, or is it something about being acutely ill with anorexia that makes the cause of some symptoms to resemble very much those that we see in autism?
[00:09:31.690] – Francesca Solmi
So I think this is where we are at in some of the studies that Lisa and I have done that we’re discussing today. I’ve tried to get this answer really as to is it something? Are people with autism then at increased risk because there’s something about the cognitive fragility that is seen in autism or difficulties with social communication that constitutes a risk to develop anorexia or is perhaps being very ill with anorexia, being malnourished that causes changes in behaviours. That makes people behave in ways that are similar or similar to those that we see with autism. So I think this is where we are in terms of what we think might be happening.
[00:10:17.730] – Andre Tomlin
Thank you. I want to bring in Lucy now, and I think Lucy, one thing to say is that obviously you can’t be given the weight of representing everyone out there with autism and eating disorders. You’re just one person with lived experience and you’ve got your own particular story and perspective on all of this, but I’m really interested in hearing your reflections on what Lisa and Francesca have said there and your experience of having these two conditions.
[00:10:45.210] – Lucy
Yeah, sure. I think firstly, just to pick up on what Lisa said about how research kind of only really focuses on anorexia. I think that’s significant because for people like me who have kind of experienced multiple eating disorders as they would be, kind of, categorised. I’ve had anorexia. I’ve had binge eating disorder, and I’ve had bulimia and I’ve struggled with autistic symptoms alongside all of them conditions. I think I’m not a unique case in that sense, because a lot of people who have eating disorders will slide across spectrum throughout their lives.
[00:11:29.850] – Lucy
And I think more research needs to be done, kind of, into that area and across all different types of eating disorders, not just anorexia, but in terms of what Francesca said as well, what I do know is that when I had anorexia that was the point at which my symptoms became worse, and I think that’s because the effects of the restriction on my body and brain kind of amplified my rigid mind-set and my black and white thinking and my isolation and inability to kind of socialise and interact.
[00:12:14.160] – Lucy
So I think that, I don’t know the answer. I don’t know what the cause is, but I think definitely both factors came into play, and I think that definitely does have an effect on worsening symptoms.
[00:12:33.150] – Andre Tomlin
Thank you. Thank you for being so open and for sharing. I totally get that that’s not always easy to do. So really appreciate you joining us and sharing in this way. I wondered, Lisa and Francesca, if you’ve got anything you want to add or reflect on after what Lucy is saying now.
[00:12:55.090] – Francesca Solmi
Yeah, just to echo that what we know is about anorexia, which Lisa was touching upon earlier and Lucy also just said and we know a lot less on bulimia, and symptoms, but it was interesting to hear Lucy’s experience.
[00:13:12.310] – Andre Tomlin
Thank you for sharing the Peace Pathway, Barry. I thought it would be fairly soon that somebody will post the Peace Pathway link. This is the pathway for eating disorders and autism developed from clinical experience. That’s a really great resource and something we’ve blogged about, and it will certainly be one of the resources that we add to our list for the event. But yes, thanks very much for sharing that. It’s definitely worth having a look at if you haven’t seen it yet. So I think it’s time now to focus down on the particular two pieces of research that we’re going to tackle, one that Francesca led and one that Lisa led and Douglas is going to talk us through those now and then we’re going to have a bit more of a specific conversation about those papers.
[00:13:53.750] – Andre Tomlin
So over to you, Douglas.
[00:13:58.610] – Douglas
Thanks very much, Andre. I’m just going to do the dreaded share screen and share some slides to talk us through this. Here we go. Hopefully that’s all working out for everybody.
[00:14:18.110] – Andre Tomlin
Yeah. Thank you.
[00:14:19.850] – Douglas
Great. So just to say this is going to be quite a rapid run through what might be normally a process that one takes more time over. So please feel free to post any questions in the chat and we’ll try and get around to addressing them. It’s a very interesting introduction there and thank you so much for the different perspectives, and I think it’s a tricky question because we’ve got things that might be both cause and effect or have a complex relationship with each other, and we felt that because the two cohort studies have been published so close together, we needed to look at them at the same time to try and make the best use of time as it were.
[00:15:07.070] – Douglas
So what are we actually doing here when we’re talking about critical appraisal of research and why do we need to do it? Just a very sort of quick reminder. A lot of folks will be familiar with this concept, but maybe not everyone is. One of the unfortunate things we know from looking at research over the years is that if you like, not all evidence is created equal. Some papers just by the method, by the way the approach they take maybe are more reliable than others, and some studies have estimated that as many as 50% of published papers contain some sort of bias.
[00:15:44.810] – Douglas
So what this means is when we’re looking at evidence is that we have to rule out the possibility that bias caused the results. We also need to rule out or think about the possibility the results could occur by chance, and I think particularly when we’re trying to think about the associations and the way two different things influence each other it’s important we bear those in mind, because we can quite easily be misled by random results, for example. There’s a kind of general approach that is used in health care looking at research evidence.
[00:16:25.770] – Douglas
We start off by being clear about what the research question is. Then we ask about the methods. Then we look at the results to see how if they’re clinically important and how we apply them in practice. So I think in this session, if we get through one, two and a bit three we’ll be doing well for a discussion of what this all means. The two studies we looked at are both population cohort studies. So I’m just going to talk briefly about what that means in terms of what the researchers did.
[00:17:04.750] – Douglas
In this type of study one of the big pluses of a population cohort study is that the researchers try to include everybody within a population in the study, and that gives you very reliable data about that population because you’ve got everybody in it, and it’s likely to be data that can be applied to other similar groups because it’s such a big population. So what we look for is a well-defined, clearly defined group of people and a plan for how we’re going to analyse them over time. We recruit the population, we follow them up, and we measure exposures such as in this case, to other autistic traits involved.
[00:17:51.970] – Douglas
We measure outcomes such as eating disorder outcomes, and we look at the association between them and because we’re doing this forwards over time we can even look at cause and effect or which comes first. We can explore the impact of all sorts of different variables on the effects that we see. One of the things to point out about these two studies is that the particular analysis we’re looking at wasn’t part of the original plan, but what the researchers did was because there are two studies that have gone over a long period of time they’re looking at the evidence that they’ve got available. They’re looking at the data that’s been turned up. So if you like, we’re going back retrospectively to look at the data around eating disorders and autism.
[00:18:43.630] – Douglas
So some of the things we need to look out for here are sort of, I think, important things that we’ll see in the discussion. So we need to look at the other possible things about the population that might influence them to give a certain response. Are certain people dropping out for certain reasons, and those sorts of confounders might introduce a bit of bias to the result. We also need to think about how are they measuring autism and how are we measuring eating disorders, because those measures really define what we can say as a result of the individual studies. We also need to… do we think we’re happy that the measure we use for autistic traits are equivalent between the two studies or at different points in time, and if not what does that tell us? The other thing we just need to be mindful of is that when you go and look at a body of data and you do analysis, there’s a risk of false positive results of you finding patterns that might have appeared by chance.
[00:19:51.790] – Douglas
So those are the kinds of things that we bear in mind when we’re appraising this sort of study. You might kind of summarise that is that if you go backwards and just dredge through lots of data, you’ll see patterns in the stars that fit the things that you want to look for. So I grabbed this off a cycling website, so they see the arrangement of data in a certain way. So the process I used for appraising the two study follows this checklist which we’ve got a link to in the slides, which we’re going to upload to the website.
[00:20:29.990] – Douglas
This is a list of questions you just run through and check against the reported methods to see if there are any risks of bias as we looked at just before. So now we’re looking in a bit more detail about the two studies, and we can start off by thinking about how they define the different elements of the research question. We’ve already mentioned that the populations involved were the whole population that was eligible within twins within Sweden, young people born in the Avon area of the UK and both studies have measures that they use for autistic traits, but they used a slightly different method.
[00:21:14.400] – Douglas
So we used the communications checklist in the ALSPAC study, and the CAT study included other items as well. So ADHD items, I think, and there was repetitive behavioural items. So there were some slight differences in the way that the two studies conceived of autism or autistic traits. I think this third point around how eating disorders are measured is particularly important in this discussion because the Cat study, this Swedish study was looking very specifically at diagnosis of anorexia or people who had been receiving treatment. Whereas the ALSPAC study has a much broader definition, which included any disorder eating behaviour.
[00:22:10.130] – Douglas
So that perhaps suggest ALSPAC might have, you know, these two side studies are certainly looking at slightly different questions and maybe need to be interpreted slightly differently. So that’s the kind of overview of the methods that were used in the two studies, and when we look at their findings we find quite different results. So on the face of it the results are kind of slightly contradictory and with roughly similar size of sample in each group, around five to 6000 participants, but in the ALSPAC study we found that the autism scores were associated with a higher rate of disordered eating behaviour.
[00:23:03.070] – Douglas
This number, the relative risk of 1.25 is an average number that applies across the whole measure. So you’d expect some variation from one individual to another, but it equates to roughly a 25% higher rate roughly. The other thing to say I think about the ALSPAC results was that we had quite consistent, with all the different ways that they modelled the data they found more or less a consistent result, which suggests that it is a true result and not the result of random chance.
[00:23:39.670] – Douglas
And in contrast to that on the face of it the CAT study couldn’t find an association between autism scores, particularly at a younger age, looking at their association with the diagnosis of anorexia. They did find some evidence in some of the more repetitive behavioural aspects of autistic traits at age 18. So on the face of it, these results are quite different, but when you remember actually they’re looking at quite different questions. Perhaps they’re not as contradictory as we might think. I think one of the key things we do need to be cautious about with both the studies is that the number of patients that we followed up weren’t all the ones who joined the study at start.
[00:24:33.540] – Douglas
So there was quite a lot of people who were either lost to follow up or who didn’t have enough data to be included in the study. They might been missing where. Maybe they didn’t respond to a certain stage of the data gathering process. That might look like quite a small follow up rate but in the context of this type of study this is very typical. It isn’t anything out of the ordinary, but it does mean I think we need to be cautious about how solid our belief is in the results, if you like.
[00:25:14.730] – Speaker 5
Both teams took efforts to try and understand that the ALSPAC Team did quite a lot of sensitivity analysis to see how the results might be affected. If there was a lot of bias in the attrition, in the drop-outs. They did find that the folk who had missing data tended to have younger, less well educated mothers and who might also have a history of depression. So that might suggest there could be the loss follow up might have affected the results. So it’s just something else that we need to bear in mind a, kind of, health warning if you like, before we go forward to the next stage in interpreting the results.
[00:26:00.510] – Douglas
So I’ve done a very quick overview of the checklist, and as I said, there’s something we need to be careful around the attrition, but I think the key thing is we need to bear in mind that one study looks slightly different collection from the other. I did mention that there was a consistent pattern in ALSPAC and I thought this worth just showing this excerpt from the results, which showed you that there’s a round 25% difference and that was consistent across the study and that the autism scores tended to be higher in people with disorder eating, and it was also people who had weekly compared with monthly episodes of disorder eating.
[00:26:51.250] – Douglas
They experienced a higher increase in the autistic traits and just very quickly on CAT. An interesting piece of detail from that paper was that the impact of the repetitive behaviour in girls when they were particularly in the subset of girls who were 18 and diagnosed with anorexia. So that sort of I think, chimes in with what Lisa was saying earlier. So my conclusions were that, as I said before, the studies looked at quite different things. So although they seem to have different results, I think the findings are maybe compatible with one another.
[00:27:40.270] – Douglas
I would like to be particularly interested to hear what the rest of the team think about this and particularly possible effects of camouflaging. The fact we’ve got a very heterogeneous group with any disorder eating behaviour. This isn’t a clear conclusion. This is one where we need to look at the evidence and engage our judgement and think about patient experiences and values. Thank you very much. I’ll stop my slides share now.
[00:28:20.850] – Andre Tomlin
Thanks, Douglas. So I’m sure both Francesca and Lisa have got a kind of right reply slot here. So, Francesca, do you want to go first? What do you think of what Douglas has presented?
[00:28:33.450] – Francesca Solmi
I think it’s a wonderful job summarising. I think, yes. There were some differences between our two studies, and I think one thing that we had in our outcome measure of disorder eating that I think differed from Lisa’s study was that we included behaviours that are multi people of bulimia and binge eating and under the threshold eating disorder behaviours. We had binging and we had fasting and dieting. So some of the children we included could have been on the more anorexia spectrum or the bulimic spectrum and so on. As Douglas was just saying, there was a heterogeneous group that we picked up in our study.
[00:29:17.590] – Francesca Solmi
But I don’t know if there were specific questions about our study in particular. I saw that there was one question about excluding people that would have had autism. I saw a question coming up. So in our study we measured autistic traits at age seven. So our assumption was that at that point most children wouldn’t have had an eating disorder. Of course, we didn’t have any way of measuring that because we didn’t have a measure of eating disorder at age seven or disorder eating, but we thought if we pick up autistic traits at that age perhaps we could be somewhat confident that most eating disorders wouldn’t have emerged at that point. So that is a question that I saw opening up before.
[00:30:07.360] – Andre Tomlin
There’s also a question about boys. Were they included in the cohort?
[00:30:11.610] – Francesca Solmi
Yes. So in our study where I think, for our study yeah, we included the boys as well. We, of course, had fewer boys with the outcome compared to girls. So when we analysed the data separately for boys and girls, just to see whether there were any different patterns, we had a lot less statistical power. We didn’t have enough boys to do the same level of detailed analysis that we could do for the girls because they were a much smaller group, but the patterns were exactly the same in boys and girls.
[00:30:42.210] – Andre Tomlin
And we’re going to come on and talk about implications and what we should do now, but first of all, Lisa do you also say anything in response to Douglas’s presentation.
[00:30:50.800] – Lisa Dinkler
Yeah. So I do agree with Francesca and Douglas that at first sight our results seemed very contradictory, but they are actually not so much because as Francesca said, what they included was a very, very broad outcome. The disordered eating behaviours, and they also included dieting, for example, if I’m right and dieting is very common, right. Many people diet. So yeah, this yields a higher prevalence of these behaviours and then you have also more power to detect effect sizes and we, of course, focused on a very narrow phenotype which was the anorexia nervosa which is much less common.
[00:31:31.890] – Lisa Dinkler
And I also think what should be noted is that the effect size wasn’t so large of the increase of autistic traits, and also that we didn’t find any association with the actual disorder anorexia. This also points us to that there don’t seem to be huge effect sizes here, because otherwise we would have picked up on them, because if I’m correct, there’s another study, Francesca, that followed up your sample right with eating disorder diagnosis up to the age of 18. The Shamberkadal [s.l. 32:06] study, and they didn’t find very clear associations with eating disorder diagnosis either.
[00:32:14.980] – Lisa Dinkler
So I feel like there seems to be an association between autism and disordered eating behaviours, but that doesn’t always mean it’s also related to full blown-blown eating disorders, as we would sometimes say, meeting all the diagnostic criteria.
[00:32:30.450] – Andre Tomlin
Okay. So I want to open it up now because I think by far the most interesting conversation we can have for the audience at this point is to think a bit more broadly about these two conditions, and we’ve got a few questions that have come in already. So, Francesca, could you start by answering this one for me? A few people have mentioned the role that anxiety plays here. Is it possible that anxiety is a mediator somehow between eating disorders and autism?
[00:32:58.230] – Francesca Solmi
Well, that was actually one of our hypothesis at the end. So now we hypothesised this link back then in our list of the data that we observed, and we know that anxiety is very common in people with eating disorder anorexia as well and it is similarly common in ASC. So we thought that perhaps one of these the mechanism could be that anxiety and perhaps n girls could be camouflaged more. Could either get more or better when they’re younger? And then when they reach adolescence and life becomes a bit more complicated in adolescence because you’re navigating a whole new world and new friends.
[00:33:36.340] – Francesca Solmi
This anxiety could really become a lot more difficult to manage, and disordered eating behaviour it could become a way to sort of handle the anxiety. So that was actually one of our hypothesis in the study.
[00:33:53.070] – Andre Tomlin
That does make a lot of sense, doesn’t it? We’ve also had quite a few comments relating to the kind of biological underpinnings of these conditions and what we know in that sense about the kind of genetic risk and the overlap. Lisa, do you want to give us a bit of an overview of what we know in that sense?
[00:34:10.600] – Lisa Dinkler
Yeah. So there are a lot of genetic studies ongoing for all kinds of psychiatric and neurodevelopmental disorders. So there’s the speak consortium, the Psychiatric Genomics Consortium, with different groups. Each of the group investigates a specific disorder and then, of course, what is very interesting then there is to look at the overlap of genetics. What we call genetic correlations between different disorders and there are some studies that have, for example, looked at the genetic correlation between autism and anorexia. If I remember correctly, that was not significant.
[00:34:46.650] – Lisa Dinkler
So that means it was quite low but the problem here is that the genetic studies for anorexia nervosa are not yet well powered because very, very large sample sizes are needed here, and we are continuing to collect this data, and then we will rerun this analysis in a couple of years and then maybe we get different results. So this will take some time.
[00:35:17.470] – Douglas
I think we’re out.
[00:35:18.860] – Andre Tomlin
Yeah. I think we’ve lost Lisa for a second. Okay, let’s move on. She did mention in advance that she might have a problem with her internet connection, so hopefully she can join us again in a second. I wanted to also touch on ARFID which some of you I’m sure have heard of which is a relatively new eating disorder. ARFID stands for avoidant restrictive food intake disorder. It’s something that’s been researched a certain amount, and it’s been put forward as a new category in the International Classification of Disease.
[00:35:54.290] – Andre Tomlin
But it’s certainly something which is very new in terms of services and research. Do we know how common ARFID is in people with autism, Francesca? Is that a really hard question to answer?
[00:36:07.850] – Francesca Solmi
Well ARFID is not my primary area of research. So I don’t have on top of my head prevalence figures, but I think that the belief is that it’s probably the most common eating disorders, particularly in childhood, among children who have autism, and when we look at ARFID as a slightly different distribution compared to gender distribution, compared to other eating disorders, like anorexia and bulimia, where we know that there’s usually many more girls diagnosed with anorexia bulimia but with ARFID we tend to see a bit more boys. So that reflects this comorbidity with new developmental condition like ASD or ADHD.
[00:36:56.570] – Francesca Solmi
But unfortunately ARFID there’s not much research on ARFID at all. We don’t know very much on it, and as you said that reflects many services, also not being there as much as they should be for children with these difficulties. They often are not recognised, perhaps until very late and have been in the news in past years, you know, children that have suffered very big health problems later on adolescence because of the very restricted diet, and undiagnosed for years. So we know a little about eating disorder, but I think ARFID we know even less on ARFID.
[00:37:35.410] – Andre Tomlin
And I guess there’s a danger that calling it a disorder makes a lot of people immediately feel quite worried. I must admit, I looked at the Beat Eating Disorders website page on ARFID and as somebody who’s got a six year old and two eight year old children I thought I can relate to a lot of those behaviours avoiding food. How are we going to be sure that we bring in something and it’s not just medicalising a whole lot of young people who don’t actually have a disorder?
[00:38:07.910] – Francesca Solmi
Yeah, I can speak for some researcher that I’ve been involved with, but I’m not first primary author on, but I know someone who’s researching this in China and we see the most children as a phase where they are more picky around food, and that tends to resolve quite naturally over time, and it’s quite a common experience of childhood. I think the problem, the more problematic one would be the ones that persist into mid-child, late childhood and then adolescence and I think that is where probably it could become a health concern as well, because there could be deficiencies.
[00:38:45.090] – Francesca Solmi
So yeah, it’s a good point. We shouldn’t medicalise anyone who’s a picky eater at some point in childhood. I don’t have that clinical expertise to give insights on how do we discern which one is a child that could have a problem from another because it could be a more transient experience.
[00:39:06.470] – Andre Tomlin
Okay. Yeah, fair enough. Thank you very much, everyone, for the comments and the links that you’re posting in the chat about AFID. That’s. Really helpful. Lisa has come back on. That’s great. Welcome back, Lisa. Sorry, we missed you.
[00:39:17.760] – Lisa Dinkler
Sorry for that.
[00:39:18.760] – Andre Tomlin
I hope your internet is working now. We’ve moved on and we’re discussing AFID a little bit, and Francesca has shared what she knows about that. Do you want to add anything from your perspective about AFID and autism research?
[00:39:33.750] – Lisa Dinkler
Right. No, I’m not sure what Francisca has said already, but I do think that AFID is very important to include in our perspective now, especially looking at the link between autism and anorexia, because I think that many of us hypothesise that AFID could lie somewhere there on the pathway. That many people with autism might actually have AFID first and then later develop anorexia, but also that people with anorexia might actually be misdiagnosed and have ARFID, rather than anorexia with the body image issues and worries associated with anorexia.
[00:40:19.050] – Andre Tomlin
Okay, thank you. That’s really helpful. So I want to talk a bit about what we do in terms of services now, and it’s interesting that we’ve got a kind of UK and a Sweden perspective on this because I’m sure services in our two different countries are quite different. Lucy, I wanted to start by asking you quite a general question I think, just really in your experience, how well you think eating disorder services currently support autistic people? I’m really interested in whether we need to adapt our services so that we can provide better care for autistic people or whether we need a different service entirely. What’s your thoughts on that?
[00:41:04.290] – Lucy
Yeah, sure. So I’m 22 now. I was diagnosed with anorexia when I was 13 and I was hospitalised from 13 years to about 16. So I was in and out of hospital in-patient. So I was in quite bad condition. My psychiatrist mentioned the fact that it could be, I did have autistic traits, but it was never really looked into. I think the primary concerns was to treat the immediate effects of my eating disorder and get me out of hospital and to presume my life again, but I think it was kind of mentioned and I think there was an awareness of it.
[00:41:59.290] – Lucy
But at the time, I don’t think that referring me on to either get assessed for autism or to get treated for autism was a primary concern. So for me, I was diagnosed in adulthood, when I realised that the condition wasn’t improving, and it was very frustrating for me because I was trying everything, but I was still feeling kind of entrapped within a certain mind-set. So that kind of urged me to privately get an assessment and be diagnosed as a result of that. So I think in terms of the NHS I don’t really think there is the support there for people who might present with that issue.
[00:42:54.860] – Lucy
I don’t think that there’s funding and I mean just from my own personal experience the waiting list to get seen is months, potentially even years. So yeah, for me, it wasn’t a positive experience because it took me years to be diagnosed, but I don’t know about other people’s experience.
[00:43:22.610] – Andre Tomlin
Thank you. I’m really interested in how as a society we can provide a better world to live in for neuro-diverse individuals. I think we’re on the beginning of the journey and there’s a lot more interest in that as a thing, but I wonder if you’ve got any thoughts about what you see as priorities in terms of the health system. What do you think could have really helped you as a neuro-diverse person within an eating disorder service? Do you think there are particular things that they could have done differently that would really have made it easier for you?
[00:44:02.610] – Lucy
Yeah. Within an already over stretched service I think it’s difficult to make them kind of adjustments and kind of view someone as a whole person, not just their eating disorder, because I think when you’re in kind of an acute service like I was, you are literally just seen as a walking eating disorder and your symptoms that’s ultimately what you’re there to get rid of, and they’re there to kind of make you eat and make you stop exercising and kind of change your beliefs about food and dieting and exercise.
[00:44:41.570] – Lucy
But I didn’t feel like the whole of who I was was taken into account and I think that’s something that needs to be kind of redressed in mental health services. Yeah, I guess to stop categorising people and see them as a whole person with individual needs and everyone’s recovery will look very different. So yeah, I agree with you. I think that change does need to happen.
[00:45:13.630] – Andre Tomlin
Brilliant, really powerful. Thank you.
[00:45:17.950] – Francesca Solmi
Can I ask a question?
[00:45:21.070] – Andre Tomlin
Yeah, go on.
[00:45:21.070] – Lisa Dinkler
I would be really interested in hearing from Lucy, what has changed for you after you received your autism diagnosis and also specifically in terms of your eating disorder.
[00:45:33.970] – Lucy
Yeah. So for me, just clarity about why I was the way I was and that I wasn’t weird. I felt like I was constantly fighting like a losing battle in terms of I was meant to be getting well, but I still had kind of rules and I had kind of rigid structures around my eating and the way I felt towards food and just life in general, and I think just being able to kind of like, understand that and not feel guilty or like it was my fault that I wasn’t in “getting better”.
[00:46:13.070] – Lucy
And I think that gave me an understanding that I was kind of different in that sense and that actually living with certain food rules and preferences didn’t always have to be seen in a negative light, like they normally are, because actually that helped me function and help me cope. Obviously, that’s different, as in getting really unwell well and having a restricted life and the physical health effects of starvation. I think that’s completely different and feeling safe with certain foods and allowing them to get on with the rest of your life and the parts of what’s important to you.
[00:46:57.770] – Lucy
But I think just having my understanding was really important for me after diagnosis, and I think for me just getting the right support. So I’m currently receiving support for my autism which I wasn’t before and that’s definitely helped me. So yeah, I think that’s kind of that’s what I’d say is the changing factor for me.
[00:47:32.030] – Andre Tomlin
That’s great. Thank you, Lucy. Lisa, to you want to give us a picture of what’s happening in Sweden. What’s the situation like where you are in terms of eating disorder services generally, and then in terms of services specifically for autistic people?
[00:47:48.210] – Lisa Dinkler
Well, first of all, I’m not a clinician, so I only know what I’m told from my clinician colleagues, but as I understand that the services here are very, very separate from each other which, of course, is not great at all, and what we also feel here is that autism is more and more singled out because I come from a neurodevelopmental disorder background in a way. I did my PhD in a centre which focused on neurodevelopmental disorders research and we know that autism very often occurs together with ADHD and all the other neurodevelopmental disorders.
[00:48:29.880] – Lisa Dinkler
Right, and that they should always be considered in context with each other and that it’s very likely that you have another neurodevelopmental disorder if you have autism, but instead we see that there are these specialised assessment and treatment centres for autism, while everything else is disconnected and not really considered, and I think this also applies to the eating disorders. Then when clinicians detect that children with autism would have problems with eating as well, they have nowhere really to go, as long as it’s not a diagnosis that is anorexia or bulimia or other feeding disorder, but especially for ARFIT at the moment, there’s not much knowledge about the diagnosis itself. And then even if clinicians think this is probably an ARFT case diagnosis, then these people have nowhere to go basically. It’s not integrated at all yet into the health care system. So here we really have to work hard to get it integrated really.
[00:49:39.270] – Andre Tomlin
Yeah. There’s a strong message that comes from a lot of our webinars, which is that having separate services for separate conditions where actually people move from one condition to the next, and we all have complex lives where we end up with seven or eight conditions or seven or eight diagnoses. That’s not helpful for anyone. I suppose in England, Francesca, we’ve seen this big investment in eating disorder services over the last seven or eight years. How do you think we should target further investment if we’re really going to try and support young people with eating disorders and autism?
[00:50:15.190] – Francesca Solmi
Yeah. So CAMHS has received more investments, I think, the same as not being for adult services. So I would say that that is already an area where more investment would be needed, because there are probably many more people on waiting lists in the adult population, and there’s probably a very high level of comorbidities there as well. So I come from, I think my background is more in thinking about prevention as opposed to clinical services and I think there should be perhaps more support available even in schools for kids who might be experiencing difficulties that could perhaps help not progressing so far in developing disorders over time.
[00:51:01.530] – Francesca Solmi
But in order to do that we need to understand what are these risk factors? What are these pathways that explain this comorbidity? So perhaps more research, but maybe more investment also in prevention and helping these children beforehand. I saw there were comments about passes to secondary school, and that could be a moment of risk, and yeah, I think that’s definitely probably very true. So maybe that is what I think, perhaps not about services overall.
[00:51:38.470] – Andre Tomlin
I’m going to ask all three of you the same question now, I think it’s unsurprising to everyone that we’re going to be fighting for more research money for eating disorders research. Mental health research generally gets very poor funding in comparison to everything else, but then even within mental health research eating disorders gets remarkably little money compared to the impact it has on people’s lives on society widely. How do you think we should be targeting the money we’ve got? So what are the most important things you think that we should be researching specifically about eating disorders and autism?
[00:52:16.870] – Andre Tomlin
Lisa, do you want to answer that first?
[00:52:20.230] – Lisa Dinkler
Yeah. Sure. Well, as I said before, I would really start by taking ARFIT into the picture and then I think that this population based cohort studies, like our two papers have been are really the way to go here because we talked about earlier that basically when a person comes to the clinic with anorexia or another eating disorder it’s already too late, right. I mean, from a clinical perspective, but also from a research perspective, because then it’s very hard to know what was there first and what caused what and in order to disentangle these casual mechanisms and risk factors it is important to start at the very beginning, which means in pregnancy, basically.
[00:53:05.590] – Lisa Dinkler
And then from then on we would include, in the best case, a range of measurements for all kinds of traits and disorders and have very close follow ups. This would be the dream scenario, right, but then on the other hand this also means a quite high burden for the participants in those studies, and we do see a certain tiredness of people answering survey after survey after survey in the population. So that’s also a problem, apart from the research funding that could be more.
[00:53:41.890] – Andre Tomlin
Absolutely. How about you Francesca? Anything to add. Any other research avenues you’d like to look at?
[00:53:47.800] – Francesca Solmi
Very similar answer from me, but I think also understanding what are the experiences of girls and boys and if they are different, because at the moment I think a problem that we have is that how we diagnose autism has been informed by presentations in boys traditionally and in the same way that we have with eating disorders. Probably our [inaudible 00:54:10] disorders has been dictated by our belief that they are very common in girls, and maybe boys that present slightly different. So I think more research on how perhaps informed by people with lived experience and informing what kind of questions should we be asking. S really that lived experience input into future cohorts because we really need these longitudinal status if we want to understand the direction of risk and also what comes in between what we can intervene upon to design interventions. So I think it’s false.
[00:54:47.830] – Andre Tomlin
How about you, Lucy? Have you got particular questions that you think scientists should be prioritising?
[00:54:54.970] – Lucy
I think just more research in general. I agree with Francesca. There are stereotypes around autism as a male kind of condition and anorexia or eating disorders in general as a female condition, and I think neither of those are helpful in diagnosis and prevention. They’ve kind of muddied that the kind of explanations we can give to these conditions, because I guess if you’re a female and you kind of present with autistic traits, it’s easier to say you have anorexia then you might actually have autism, and I agree. I think that it’s a very under researched area, and it’s also a very complex area. So I think just more research in general.
[00:55:53.630] – Andre Tomlin
Thank you. That’s great. So we’re pretty much out of time now. We’ve just got a couple of minutes left. I just want to first of all, asked Matt to share the poll. We normally evaluate these sessions. So just tell us if you enjoyed the session and if you would recommend it to a colleague. Ten is a lot and one is not very much. So tell us what you think of this. That’s really helpful for us to see. Thank you, and while you’re doing that, I’m just going to thank our excellent panel.
[00:56:24.790] – Andre Tomlin
Thanks very much to Francesca and Lisa, Lucy, Douglas, Anja who’s been manning the comments and putting the questions into our WhatsApp group? Who’s been fantastic as always. Thanks very much to the McPin Young People’s Network who we run these webinars with. They are always fantastic in helping us find brilliant young people like Lucy to come along and share their experiences. If you want to tweet about this webinar, the hashtag is CAMHS Campfire. Please do when you come off Zoom, go on Twitter and tell us what you think.
[00:57:03.110] – Andre Tomlin
Thanks very much for your feedback there. It’s great to see so many people giving us seven, eight, nine, ten. That’s very nice. Thank you and, yeah, our next CAMHS Campfire is on the 22 November. It’s on Bullying and Parenting and back to you Matt.
[00:57:23.240] – Introduction
Find out more about becoming an ACAMH member and to be part of the advancement of child and adolescent mental Health visit www.acamh.org.
ACAMH’s vision is to be ‘Sharing best evidence, improving practice’, to this end in December 2020 we launched ‘CAMHS around the Campfire’, a free monthly virtual journal club, run in conjunction with André Tomlin. We use #CAMHScampfire on Twitter to amplify the discussion.
Each 1-hour meeting features a new piece of research, which we discuss in an informal journal club session. The focus is on critical appraisal of the research and implications for practice. Primarily targeted at CAMHS practitioners, and researchers, ‘CAMHS around the Campfire’ will be publicly accessible, free to attend, and relevant to a wider audience.
Previous sessions are listed in our Talks & Lectures section.
About the panel
My research broadly focuses on studying the risk factors for the development of eating disorders across the life-span. As part of my Sir Henry Wellcome Fellowship I am studying whether inflammation – conceptualisd as exposure to prenatal and childhood infections, high genetic risk, autoimmunity – increases a person’s risk of developing eating disorders. To do this, I use large general population datasets, including both biological and environmental data, and causal inference methods. I am also interested in studying inequalities in access to services and evaluating the effectiveness of current treatments for eating disorders using electronic medical records.
I teach on the following MSc programmes offered by UCL MSc in Mental Health Sciences (UCL Division of Psychiatry): Core research methods module; Epidemiology module, Statistics module (as a teaching assistant) MSc in Child and Adolescent Mental Health (UCL, Institute of Child Health); Epidemiological research methods in child & adolescent mental health. I welcome inquiries about PhD and MSc projects. Bio and image via UCL website.
Dr. Lisa Dinkler graduated from the PhD program at the University of Gothenburg in December 2020 and is now a postdoc at Karolinska Institutet. Her PhD project investigated the development and course of eating disorders in association to neurodevelopmental disorders (NDDs), and the mechanisms underlying the overlap of eating disorders and NDDs. Applying twin methodology Lisa studies the extent to which genetic and environmental factors are shared between eating disorders and NDDs. In a large birth cohort of Japanese preschool children she investigates the prevalence and course of a wide range of childhood eating problems, including Avoidant Restrictive Food Intake Disorder (ARFID), and their association with NDDs. Lisa’s research also explores neuropsychological factors underlying the social difficulties common to eating disorders and NDDs with the help of eye-tracking methodology.
Professor Helen Minnis and Lisa Dinkler discuss their paper “Maltreatment-associated neurodevelopmental disorders: a co-twin control analysis” published in the Journal of Child Psychology and Psychiatry.
André Tomlin is an Information Scientist with 20 years experience working in evidence-based healthcare. He’s worked in the NHS, for Oxford University and since 2002 as Managing Director of Minervation Ltd, a consultancy company who do clever digital stuff for charities, universities and the public sector. Most recently André has been the driving force behind the Mental Elf and the National Elf Service. The Mental Elf is a blogging platform that presents expert summaries of the latest reliable research and disseminates this evidence across social media. They have published thousands of blogs over the last 10 years, written by experts and discussed by patients, practitioners and researchers. This innovative digital platform helps professionals keep up to date with simple, clear and engaging summaries of evidence-based research. André is a Trustee at the Centre for Mental Health and an Honorary Research Fellow at University College London Division of Psychiatry. He lives in Bristol, surrounded by dogs, elflings and lots of woodland!
Follow on Twitter @Mental_Elf
I am an information scientist with an interest in making knowledge from systematic research more accessible to people who need it. This means you. I’ve been attempting this in the area of Evidence-Based Health Care since 1995. So far the results have been mixed. For some reason we expected busy clinicians to search databases and appraise papers instead of seeing patients. We also expected publishers to make the research freely available to the people who paid for it. Ha! Hence The National Elf service.