Dr Jane Gilmour: Welcome to 'Mind the Kids'. I'm Dr. Jane Gilmour honorary consultant clinical psychologist and child developmental program director at UCL.

Professor Umar Toseeb: I'm Umar Toseeb, Professor of Psychology with a focus on child and adolescent mental health and special educational needs. In each episode we select a topic from the mental health literature and in conversation with invited authors sift through the data, dilemmas and debates to leave you with our takeaways.

Dr Jane Gilmour: So today we explore gender differences in the diagnostic journeys of autistic people. This episode is called Autism Diagnosis, The Long and Winding Road.

Professor Umar Toseeb: This is really interesting to talk about and it's really interesting for me to read about the topic of psychiatric diagnosis and autism because a lot of the work that I've done in the past has been around special educational needs or neurodevelopmental conditions and the overlap with mental health. So I was like, yay, let's do, let's talk about this. So my understanding is that autistic children and young people, are more likely to experience poor mental health or mental health difficulties compared to neurotypical young people. And they're more likely to experience symptoms but also more likely to be diagnosed with those psychiatric conditions and receive support for those.

Dr Jane Gilmour: And it really is an emerging picture, isn't it? Because Partly because there are increasing rates of identification in autism. So as we are uncovering these patterns of co-occurrence, we're also understanding the underlying rates of autism. And there's a great paper, isn't there, by Russell from Tamsin Ford's group, I think, that describes an almost 800 % increase in identification between 1998 and 2018. So there there is an underlying trend that is changing and also the co-occurrence and those patterns of co-occurrence are so complicated which is one of the reasons why we're delighted to have this paper which is a one step towards understanding these different patterns.

Professor Umar Toseeb: And I think something you were saying prior to the podcast today was about this idea of co-occurrence being the theme of our time and the thing that everyone is focusing on. know, definitely in the research space, I think that we're definitely guilty of looking at individual diagnostic labels in the absence of everything else that's going on within that child. And also sticking quite rigidly to those diagnostic labels. Is that what you also see in practice?

Dr Jane Gilmour: Well, you know, but there's good methodological reasons for that because we have to be rigid in our identifications and maybe look at one occurring condition in isolation in order to understand it and then broaden out. But I think academics and clinicians alike will all agree that the real world experience is different from a very carefully selected sample. But we have to start there. And I think this paper and that Miriam's going to talk about in more depth in a moment is wonderful because it's a cohort, Swedish cohort in fact, that looks at whole population patterns. And that's such a gift because it's not a predetermined group, if you like. It's looking at the extraordinary rough and ready population patterns and characteristics that we cannot select for. And I think that's one of our challenges, but this is one of the gifts of this paper.

Professor Umar Toseeb: Absolutely. think before we go into talking to Miriam about the paper, should we talk a bit about why autistic young people might experience poorer mental health? So we know that they do and the literature on that is quite strong and Miriam's paper also discusses some of those trends. But my experience and my work on the area, my reading of the topic is that autistic young people will experience poorer mental health, partly due to how the structures around them are set up for the neurotypical world, you know, the social model of disability, you know, they will experience distress in situations that other children who are neurotypical wouldn't because of the way in which those situations are set up.

Dr Jane Gilmour: Absolutely. I mean, the narrative in families that I see is certainly that camouflaging in girls in particular itself is so impactful. So the idea of anxiety being produced by the strain of fitting in and that is what is one of the, you know, one of the reasons why there's increased levels of anxiety and depression in young autistic girls. There's some great stuff, isn't there, from Will Mandy, Laura Hill and the rest of their group describing these diagnostic patterns in the female presentation, particularly, I think Laura Hills has wins the prize for one of the best journal article titles of recent times and talks about putting on my best normal. And those, those experiences of having to fit into a neurotypical world have certainly got to take an impact and have an outcome. And in addition, I think it's taken some time for both the clinical and the research world to understand that I can be autistic and I may have social anxiety. Those two things are separate. And sometimes that diagnostic overshadowing or the assumptions that the neurodevelopmental pattern will be the most important issue for that young person means that a number of the aspects of their presentation get neglected, which is really what this is all about.

Professor Umar Toseeb: And I'm interested to hear your perspective as a clinician here where in the mental health intervention literature, my reading of it is that a lot of the time when there are trials on a new intervention to improve mental health difficulties in children or young people, I can understand why they have quite specific inclusion and exclusion criteria. But a lot of the time, exclusion criteria are you can't have a neurodevelopmental condition and what that then means is that even if the intervention is seen to be effective we can't say that it will work in autistic young people.

Dr Jane Gilmour: Absolutely, those, you know, the age old efficacy versus effectiveness issue, which, which I think we all we all know, but it is a challenge because how then can we interpret findings, of course, if we have a consecutive series of young people in CAMHS, it's very difficult to pull apart, you know, what the impact is, or what the what the, you know, where the intervention is being applied. And this is really why I think we should get on to Miriam and ask some questions of our paper. on.

Professor Umar Toseeb: Yes, Let's do it. Okay, so today we're joined by Dr. Miriam Martini, Department of Medical Epidemiology and Biostatisticsat the Karolinksa Institute in Sweden. Did I say that all right?

Dr. Miriam Martini: Yes, you did.

Professor Umar Toseeb: Excellent. So Miriam is the lead author of the paper Sex Differences in Psychiatric Diagnoses, Preceding Autism Diagnosis and their Stability Post Autism Diagnosis, which was published in the Journal of Child Psychology and Psychiatry. Welcome Miriam.

Dr. Miriam Martini: Thank you very much.

Professor Umar Toseeb: So how did you get into this line of research?

Dr. Miriam Martini: So I don't actually have any personal experience with autism, but I've always been driven by the goal of contributing to better mental health. And during my psychology studies, I became especially interested in understanding why some groups struggle more with their mental health than others and how we can best support them. And during my master's, I did an internship at the Netherlands Autism Register and I got the chance to learn more about autism. And what really struck me was how heterogeneous the autistic population is and how that diversity often gets overlooked in research and clinical care, but also how poor their mental health is and that we still don't know how to best support this group. And at the same time, focusing on the sex differences, I had a long standing interest in how women might differ from men and how we can improve their outcomes. And then bringing all of these together, I did my PhD on mental health and sex differences in autism with a focus on young adults specifically.

Professor Umar Toseeb: Thank you. And let's talk about context, the paper that you've written was done in Sweden using Swedish data. Can you tell us a bit about the diagnostic pipeline in Sweden? if somebody is referred for an autism diagnosis or a mental health need, what happens? How does that process happen?

Dr. Miriam Martini: Yes, so it first starts with an appointment at the GP usually, and then we have a referral to specialist psychiatry. And then that's usually child psychiatric services. And there we have an initial screening. And if that screening comes back positive, then we have a proper assessment. And in Sweden, we have an assessment both by a psychologist and a doctor, which is usually a psychiatrist to ensure that we have comprehensive information. And often throughout this process, different informants are included like caregivers or information from school and teachers as well.

Dr Jane Gilmour: And that sounds quite similar to the process in the UK. And one of our dilemmas, I guess, is getting access to the assessment. There's been a huge uprise as we talked about about, you know, the demand for assessment. And part of the response to that is in the UK saying, well, GPs need to have greater awareness and screening training at least. What are your thoughts on that?

Dr. Miriam Martini: I think it could definitely be beneficial to have some kind of basic training for autism assessment or screening at the GP level, because it takes away some of the burden from specialist care and it might also reduce the waiting times for diagnosis. And in general, think awareness and knowledge around autism is crucial for all types of healthcare workers.

Professor Umar Toseeb: In your paper you focus on understanding the sequential ordering, if that's the right way of putting it, between psychiatric diagnosis and autism diagnosis. Why is it important to understand the order in which these things happen or the diagnosis are made?

Dr. Miriam Martini: Generally, want to understand which kind of mental health problems autistic people experience. But especially, it's interesting how do they get to an autism diagnosis? We know that this is not the same for everyone. There's often this idea that if you are in services, that things might get picked up more easily. We were interested in what does this... contact with services kind of look like before you receive an autism diagnosis, and is there somewhere that we can pick it up earlier? And how does that differ for females and males, as you've already talked about, you know, the difference in picking up autism and differentiating it from other conditions? So that is really what we were focusing on. And we focused on psychiatric conditions because we know that there's a big overlap in symptoms of psychiatric conditions and autistic traits, and that that might be quite complicated or complex for clinicians to disentangle.

Dr Jane Gilmour: Absolutely. And thinking, you know, from a clinical side, the approach will be very different if we use a neurodevelopmental framework. So the way that I approach a young person, the language that I use, the, you know, the ideas about the emotions that I'm feeling and how I'm labeling those, all of those things are very different once we have an autism lens on, you know, on a young person, if you like. And so I think that's it's such an important point to discuss the order of events and how that might impact the young person's experience in services. I mean, there's such a lot in your paper, Miriam, and you know, it is hugely informative. But one of the key messages was that girls are more likely to have a later diagnosis in general. What do you think underpins that? That's a big question.

Dr. Miriam Martini: Yes, this is a very big question. And I think there's many different factors that play into this. So as you already mentioned, there might be differences in how autism presents between males and females. So females might, for example, show more interest in social relationships compared to autistic males. And of course, it also highly depends on how other people perceive that child in their environment. So and how what we think autism looks like and then how we might recognise that. But then also I think there's some literature around masking and camouflaging and that has been found to be more common in girls and that kind of hides the autism and makes it more difficult for them to be recognised. And then of course there's also the fact that diagnostic criteria have been predominantly based on the male presentation and they might be less sensitive. to identify women and girls. But I also wanted to say that in recent years we have increasingly recognised girls and diagnostic criteria have widened over time. So we are picking up more girls and also more adults. But the problem still remains, I think.

Dr Jane Gilmour: But everything that you're saying has applications into the ADHD literature, for example, the models of gender presentation on ADHD as compared to autism. So in other words, the lessons we're learning from your paper can be lessons that can be generalized and applied elsewhere across neurodevelopmental issues and probably one assumes many other conditions. So it's a very valuable framework to consider. It's really useful.

Professor Umar Toseeb: So in your paper, one of your key findings was that females are more likely than males to have a psychiatric diagnosis first and then an autism diagnosis. What might be some of the reasons for that?

Dr. Miriam Martini: I think this is a really good question. I think part of the answer is that there are issues around diagnosis and diagnostic overshadowing where autistic traits might be interpreted as symptoms of other psychiatric conditions, making clinicians more likely maybe to give a diagnosis of anxiety or depression. And then later on... we notice that this is not explaining the full picture of difficulties these individuals might experience. So I think that is a big part of like this disentangling different diagnoses and figuring out what the underlying issue is. But then I also think if we consider that what we did in our paper, we also looked at the stability of these diagnoses after they receive an autism diagnosis, kind of trying to get at whether this is an issue with diagnosing and maybe potentially misdiagnosing or mislabelling the difficulties that they have or whether this reflects an early onset of co-occurring difficulties. And what we see here is that actually females also show more stability in these mental health problems over time. So that means that maybe living with undiagnosed autism might increase stress and exacerbate mental health problems. And that that we also at the same time might see that mental health problems in autistic people onset early and then persist over time. So another study, for example, we also showed that during young adulthood there's a lot of mental health problems on setting and we also clearly see a sex difference there. And we also saw that there's a lot of hospitalizations around that time as well.

Professor Umar Toseeb: So we're talking about psychiatric diagnosis and you the ordering of psychiatric diagnosis and autism diagnosis. What kind of psychiatric diagnosis are we talking about? Are we talking about eating disorders? Are we talking about depression, anxiety?

Dr. Miriam Martini: Yes, so in our study, we looked at 11 different categories of psychiatric conditions and we found that for most of those females were at an increased risk to receive this diagnosis compared to males. One exception was psychotic disorders where we didn't see any difference and males were more likely to receive an ADHD diagnosis before their autism diagnosis. And I think it's important to add that these differences are apparent also over time. So we looked at diagnosis also between 2000 and 2020 to see how, if this has changed over time, this difference. But we found that the sex difference persisted over time. And we also see this across different ages of autism diagnosis. So particularly those diagnosed from age nine and older, we can already see some sex differences there.

Professor Umar Toseeb: So what you're saying is that the gap between males and females persists from about the age of nine onwards and there's no time, like in terms of, it was the same in 2010 and it's the same in 2020 just before the pandemic, which has changed things probably. It's really interesting. we were having a conversation earlier about, eating disorders and the overlap with autism.

Dr Jane Gilmour: Yes, and actually, it was a clinical audit I was working in an eating disorder clinic, including ARFID , which is avoidant, restrictive food intake disorder or selective eating and a neurodevelopmental clinic at the same time. And it wasn't a surprise to me or anybody else working in either clinic that there was a huge overlap in populations. And our teams did a clinical audit. And I was telling Umar confidentially No, I'm joking. We are glossing over the fact that the audit wasn't submitted for publication. But the point here was at the coalface of CAMHs practice. And this was a consecutive clinical sample we found that a significant proportion of the young people from the eating disorder and the neuro developmental clinics were indistinguishable from one another in terms of their social communication patterns. So in other words, there was no difference in the severity of their social communication, whether they were in the eating disorder or the neuro developmental group. It was a quick and dirty, but very ecologically valid experience of the overlap between features and symptoms and the apparent wonder and mystery of how children end up in which clinic. And that is a big question, isn't it?

Professor Umar Toseeb: Yeah, and so, Miriam, in terms of the implications of your work, what does this mean for how we support autistic children and young people? And I want to try and I want to give you what I understood of the implications based on what you'd written and then tell me if it's the same or different. Are you suggesting that young people who access mental health services for various psychiatric conditions should then be screened for autism? Is that what you're suggesting?

Dr. Miriam Martini: Yes, I think that could be one of the implications. I think especially when we see individuals that have a very complex presentation of different mental health problems and have been in touch with services several times, I think it would be good then to go for an assessment of neurodevelopmental conditions, maybe also including ADHD, because we know that is a common co-occurrence as well. And I think in this way we could really facilitate earlier recognition and earlier support. Yeah, especially for the mental health problems.

Dr Jane Gilmour: I mean, Miriam, you've raised so many important issues about the gender differences and particularly the impact of the sequence of diagnosis and what you know what impact that might have on young people. I think although we could talk all day because there's so much in that paper, I think we should bring our chat with you to a close. And thank you so much for such a thought provoking discussion. Many, many thanks indeed.

Dr. Miriam Martini: Thank you very much for inviting me.

Professor Umar Toseeb: Thank you. That was really fascinating. I really enjoyed it.

Dr Jane Gilmour: Wasn't it. There was so much that we can extrapolate from and so much good quality live data as it were that makes it made me think about all sorts of different ways forward after listening to that it was really interesting.

Professor Umar Toseeb: Absolutely. And I think that it's really nice to, well, it's very nice to talk to other people who are doing work at the intersection of autism and mental health, because there's so many people doing this kind of work and it's not always possible to speak to those people. So it's nice to hear someone else doing work from a different position and seeing what that looks like. Should we move on and talk about the clinical implications of all of this? These conversations that we've had. And I think that it's interesting for this particular episode because it's about clinical diagnosis. So I suppose that, you know, the subject matter that we've been talking about is about clinical diagnosis. But in your view, what are some of the clinical implications for what we've been talking about today?

Dr Jane Gilmour: Well, I think what's so encouraging about this paper is it documents systematically the picture that's reflected in clinical practice. And that's a very rare find. And clearly this idea of the challenge in the variety of patterns of diagnostic routes are quite overwhelming. And I think the big question here is why. And of course, masking is obviously part of the picture. But perhaps one of the implied questions is whether the overt impact that one diagnosis has over another might have influence on whether it's picked up or what is picked up first. We really do need, as you touched on with Miriam, better awareness, training and screening, easier said than done. I think one of the most important issues that this paper raises is in terms of intervention for young people with co-occurring conditions. And what I'm about to say I know won't be news to any practitioners, a story that is only too well told. Because in some trusts, neurodevelopmental clinics will only offer assessment and so they need to refer on for treatment. But the catch is that the practitioners offering anxiety intervention may not be set up to offer autism adapted treatment. Now in some cases it's to do with the referral criteria but in others, know practitioners are rightly cautious by offering specialized treatment without specialized training. So we might want to think about adaptations for CBT using concrete language, focusing on behavior rather than cognition and so on. But my top tip, just while we're on it, for successful modification is to leverage a young person's special interests. So I had a really rewarding case, in which I used that young person's special interests in a TV soap and managed and treated her social anxiety using the characters that she loved. So it's a really, you know, there are are methodologies and evidence based methodologies. You can have a look at Tony Atwood's training packages. He's got some material in the ACAMH Learn site as well about how to manage that specific and specialized intervention. But that is the challenge. I think maybe the last thing to say, Umar, is that one of the things I find most rewarding is to consider joint working on therapy cases. So this might mean going across different clinics, which may feel like going across the great divide, but to work on a case with a colleague from a neurodevelopmental clinic means that you have a shared case and there's a great opportunity for knowledge exchange and I can thoroughly recommend it having done it. So there's a lot of challenges there and I'm talking about work arounds. I think there are bigger systemic challenges in terms of how we offer services to young people. But yeah, it's a great paper because it describes the problem and without the problem we can't offer a solution.

Professor Umar Toseeb: And that's really interesting to hear you say that because I think like in the education space when we're talking about special education needs, I think one of the challenges that we have is that the people who are working with children and young people in educational settings are well aware of the problems with diagnostic labels and you know they have their workarounds and they try and make it work but actually the research literature has not always caught up with that. So it's nice that what you're saying is, this is great because this is evidence for what's happening on the ground. Because I think in the education space, that is also needed and that's starting to happen. So as a clinician, what's your take home message for the clinicians?

Dr Jane Gilmour: I've got two. One is to expect a wide range of co-occurring conditions when you see a young person with autism or indeed any other condition. So the breadth of routine screening packages in CAMHS and ideally primary care is indicated. The second takeaway is that our care pathways, and this is what I was talking about in terms of systemic change and organisational change, is that our care pathways need to reflect the population characteristics. So we need to develop services in which both the psychiatric and neurodevelopmental conditions can be addressed in a cohesive and connected way. No small task.

Professor Umar Toseeb: I think for me as an academic, one of the things that I would like to see more as a result of this conversation reading this paper is I know that there's good reason for why we focus on diagnostic labels in research. And that's fine. But I think it's also helpful to know what other conditions the young person might have been identified as having. And I think that's possible to do within a research context. know, you might have your inclusion criteria for a diagnosis of autism, but then as part of the research study, ask about what are the co-occurring conditions a young person has and then report them in the paper. So then we have a fuller understanding of what is the sample that you're working with. Cause as you said earlier in the podcast, people tend not to appear in clinic with just one diagnostic label or with one thing going on, there's lots of stuff going on. Where actually, when we read a research paper, if they're looking at autistic children, young people as part of a research project, that's usually the diagnostic label that we know about. But it's not always the case that we know about the other diagnostic labels that they might also have. So yeah, my take home message would be ask about other diagnostic labels and then report them in the paper too.

Dr Jane Gilmour: Absolutely co-occurring conditions, it's the rule rather than the exception. Now Matt, our producer, has given me a reminder about two important conferences. First, the Jack Tizard Memorial International Conference. And it's focusing on neurodiversity, cutting-edge research, evolving perspectives and effects of innovations. A lot of really wonderful speakers, including Professor Emily Jones and Professor Jonathan Green and many, many others. There is also a conference called Unfolding Autism. So it's very pertinent to our conversation here, an international expert conference, and there's Dr. Susan White and Professor Geraldine Dawson on the agenda there. So both of those are well worth looking up.

Professor Umar Toseeb: Fascinating discussion there, I really enjoyed that, and as someone who researches autism I definitely learnt a lot, so I'm going to be checking out more of Miriam's work. Join us again next week on 'Mind the Kids' when myself and Jane are going to be speaking to Dr Tom Wu, who's a Research Fellow from University College London, and we'll be talking about 'Mental health: Best Mates and Class Mates'.