[MUSIC PLAYING] We are the Association for Child and Adolescent Mental Health, or ACAMH for short. And this is ACAMH Learn. Welcome to Mind the Kids, a podcast series dedicated to exploring the latest advancements in child and adolescent mental health research and practise. I'm Clara, an academic clinical fellow in child psychiatry. And I'm passionate about understanding and addressing the diverse mental health challenges faced by young people globally. And in this series, I will be joined by renowned experts and researchers worldwide to discuss their cutting-edge research, their interventions, and the best practises in child and adolescent mental health. Today, I have the pleasure of receiving Professor Lauren Kenworthy. Professor Kenworthy is the professor of neurology, paediatrics, and psychiatry at the George Washington University School of Medicine. And she's also the director of the Centre for Autism at the Children's National Medical Centre. And today, we're going to be discussing her research and her paper, "Executive Function Challenges Persist into Young Adulthood and Predict Mental Health Outcomes in Autism," that was published at JCPP. So it's an honour to have you here, Professor Kenworthy. Thank you so much for accepting our invite. Thank you for the opportunity. And I wanted to start by saying that in the past 20 years, autism research has expanded so much. And so many researchers like yourself helped to build that field and are dedicated to understanding the impacts of autism in young people's lives. So to start us off, I wanted to ask you, what was the key question or knowledge gap that you were hoping to address with your study? So we know that executive functions, which are a cognitive, brain-based ability, they live in prefrontal subcortical circuitry of our brain. And they're like language or memory or other things that our brain does to help us. But specifically, executive functions help us process information and produce information flexibly and plan to meet goals that we want to achieve and inhibit impulses that are going to take us in the wrong direction and keep track of information. There are a lot of different things that executive functions include, but there are these cognitive abilities. And we've known for a long time now that executive functions are strongly linked to mental health, things like depression and anxiety and aggression, for all of us. And we've also known for a long time that executive functions and mental health are really challenging areas for a lot of people with autism. So a lot of autistic people struggle with executive functions and mental health. But what we didn't know was, how do those things change as autistic youth grow through adolescence into young adulthood? And we especially didn't have information about what that looked like in real-world settings, from the perspectives of parents at home or teachers or the kids themselves. So what we wanted to do was look across this wide age range of 2 to 25 and look at not what a small group of kids in a small age range did when they came into our lab one year and then two years later and then three years later in a way that was very demanding and would limit who we would see. We wanted to know a more general group of kids who were, in this case, in our clinical and sample here at Children's National in Washington, DC and what it looked like for them in the real world over that whole long range of development. That's super interesting. And I love that you used like real-word data because oftentimes, a very common criticism that executive function task studies receive is that they use a very small sample of people in very artificial conditions. So I think it's fantastic that you used such a diverse in range sample of young people. And I wanted to ask you because in your introduction, you discuss and you talk a lot about symptoms of depression and anxiety and other mental health difficulties. They may manifest differently in autistic young people. And we have a lot of evidence to support that. And I was just wondering, can you tell us a little bit more about the relationship between executive function and depression in autism specifically and why understanding executive function trajectories, which is what your paper focused on, is important to better understand how depression manifests in autistic youth? The big place to start with here is that mental health problems are way, way too common for autistic people. So there are different statistics out there, but numbers like about 70% of autistic children and 63% of autistic adults are experiencing mental health challenges at any given time. That's way, way too much depression and anxiety. And so that's one reason why we need to really understand what it looks specifically for them. We found that depression over time for all of the autistic kids in our sample increased. And again, that's a really big concern. And we're not the only ones to raise that concern, that particularly as kids move into adolescence and young adulthood, they're at greater risk. And for anxiety, it didn't get better for the group in general. And it got worse for the girls. So we really think that it's a big, big issue. And we want more than anything to make sure that people are thinking about the mental health of autistic youth and how we can support it. And we also want to explore every opportunity we can to address that. And that's really why we wanted to look at the executive functioning component and how it might be related. And knowing that both these problems, mental health challenges and executive function challenges, are common in autism, we want to understand how they relate and how one may drive the other. And that's important to us because that would give us an opportunity to intervene. It's a moment when we could reach in and say, what if we help people with executive functions? Could that help their mental health as well? Yeah, 100%. And I suppose, we know that there is a well-documented link for neurotypical individuals between executive function dysfunction and depression and anxiety. And in your results, in your sample, did you expect to find specific executive function deficits in autistic young people that were different from their neurotypical peers? I know you didn't use a control group in your study, but I was just wondering if in your experience and in your hypothesis that that's something you considered. I mean that's a really sophisticated question. It's not just, are the executive functions different? Is the mental health different? But is the relationship between them different? And we didn't actually have a lot of hypotheses about that because it hasn't really been studied. Like you said, what we know is that executive functions drive mental health for a lot of us. And we know that in autism, executive functions are especially challenging. So we didn't have so much autism-specific hypotheses as wanting to understand specific aspects of executive functions. Because like I was saying, executive functions is a lot of things. So it was more important to us to think, what components of executive function might be playing what kind of a role? And the big thing that we found there was in this group of over 300 individuals and over 900 observations of them as they were growing up that there's this very powerful relationship between flexibility specifically and mental health. And it's stable across time. And it's driving all of the mental health outcomes in a really consistent way. And it was striking to us because we were accounting for things like intelligence, IQ scores. We were accounting for parent socioeconomic status, educational status. So we were looking beyond some of the common predictors and seeing flexibility still driving a lot of the challenges that people have with mental health. That's really interesting. And another result of your paper that I found really interesting-- so for those of you who didn't read the paper, Professor Kenworthy and her group, they looked at four executive functions. That's like subcomponents if I'm not mistaken. And one of them was this inhibit score. And I thought, really interesting that actually, as you said, you found a very clear relationship between mental health outcomes, specifically depression symptoms, increasing at a faster rate for individuals who had one standard deviation below scores in, specifically, this specific subscale called inhibit. And as you said as well, those symptoms, they tend to remain-- the same depressive symptoms, they tend to remain stable for individuals that had better executive functions. Actually, better executive function had a very clear relationship with better mental health outcomes as well. And I suppose, do you think that it might be that better executive function actually acts as a protective factor? How do you make sense of these findings that your study so clearly showed that this relationship? Yeah. It's complicated, isn't it? And so we looked at global executive functions, and then we looked at three components. And they're not the only components of executive function, but they're the most common and the most generally accepted components. And one was this flexibility. How easy is it for you to shift from one thing to another? Does it cost you something when you have to stop doing something and start doing something else? Or transition is hard. You get stuck on certain kinds of ideas. Conversely, I'll say there's inflexibility strengths. Are you a person that can get into flow, that can become an expert in a very specific area? But are you a person that's less inclined to be flexible? was one piece that we looked at. Then another piece of executive functions we looked at was working memory. And that's just, how do you hold information in mind to keep track of what's going on? I hope you're not like me, where sometimes I'm at the grocery store and I forget what I've actually put in the grocery cart. It's like I'm not tracking what's going on as well if I'm having a bad executive function day. And then that third area is what you're talking about, was we looked at inhibition. And this is all about impulse control. Back to the grocery store, if you're shopping when you're hungry, do you have trouble putting the brakes on your instinct? Which is for me, I'm reaching for those Milano cookies before I've thought about why I came to the store. So can I put the brakes on my behaviour? Can I put the brakes on my words so I don't say things that might be difficult for somebody to hear? Can I inhibit impulses that would take me in directions that would distract me from where it is that I need to go next? Those are all aspects of executive functioning. And as you're pointing out, we saw a really unusual relationship in terms of what parents described as kids who were doing better at controlling impulses when they were little and their symptoms of depression over time. And we didn't expect this. This was a surprise to us. But kids with less inhibition problems actually had more depression over time. And so that's interesting and something that we'd want to continue to think about. I think the big message that comes out of that finding is these relationships are bidirectional. So we have these core cognitive abilities that we think are really important to understanding outcomes like mental health. Also we have a paper coming out looking at executive function affecting adaptive behaviour, which is like a positive outcome. How do you do at just getting stuff done in your daily life as you get older? So we think executive functions are really important, but they don't live in isolation. They're interacting in the body, in the mind in guiding behaviour with all kinds of factors. So one possibility is that if people have a propensity towards mood problems, mood problems can come with slowing down of motor responses, of being less actively responsive. And that would affect inhibition as well. I don't think we fully understand that relationship yet, but it's definitely something to watch. And it's interesting because inhibition, the ability to put the brakes on behaviour, that was the one thing that we saw improve in executive functions over time, whereas flexibility and working memory challenges, they were high when kids were little, and they stayed high throughout development up to 25. So when I say high, I mean like clinically significant. Parents are saying, this is a real issue for our kiddos. And yeah, another thing I found really interesting about your findings is that as you said-- so you looked at the global executive function score and these three subdomains. But actually, when you look at which subscores are driving the persistence in executive function problems over time, the flexibility one was quite important. And I was just wondering, was there any of these results or these relationships between the subscores and the mental health difficulties that surprised you or that was not what you were expecting at first? Yeah. So I will say we had reasons to hypothesise or to predict that flexibility would be a big issue because it's been seen in smaller studies over smaller age spans. So that wasn't as much a surprise as the inhibition finding. But I think the biggest surprise and the things that worries me the most was just how persistent the challenges and executive function were over time because remember, these are kids who've come into our clinic for an evaluation. They, in theory, are part of a group of individuals who are getting some support. They weren't in treatment with us. They were in about getting evaluations. But we were making recommendations and trying to support-- that they were getting support. So we're not doing a good enough job by these kids. And that was something that came out of this study that I think really made me want to do better and make sure that we're doing more. That's really thoughtful of you to say. That's a really thoughtful reflection. And I don't know how it works in the US, but one thing that I think-- it took me a long time to realise. And it's obvious, but it took me such a long time to realise. I do clinics as well. And I love doing clinics. And I really, really enjoy it. But actually, if we think about the life span of those children, as much as we can-- it depends a lot on the service. But even if we can offer really intensive services and really intensive support, actually, when we think about the lifespan of these children, there are so many other environments and professionals that they interact with and that actually can also have a vital role, like schools and their parents. And as you said, one of the reflections you took from your findings is that we need to do better, considering this executive function challenges are still persisting and are still at a very high level. But how do you envision that we could do better? Do you think we could-- I don't know-- maybe improve partnership with schools? And I know different countries have different rules and operations about that. But yeah, I just wanted to hear your perspective. Yeah. I think it's such an important question. And of course, there is a lot of variability across countries. But it's also true. And I just came from the international meeting for the Society for Autism Research in Prague this year and so got to share data with a lot of my European and actually, international colleagues more broadly. And so I think across the world, we struggle with needing more evidence-based tools. And so there's just now very late, just recently came out data on ABA-- Applied Behaviour Analysis-- which has been a big tool that a lot of people have leaned on that actually may have, in a very large sample, over 17,000 individuals receiving Medicaid in the US, may actually be associated with increased mental health challenges. We don't have enough good tools. And it's not that any one intervention isn't right or trying in some way. But we need a lot more focus and a lot more consideration of what you mentioned, which is, where do kids get access to those interventions? So in the US in particular, there's a huge disparity in who gets access to mental health care in the clinic and hospital-based settings. And so in my lab, we've worked really hard to develop executive function interventions because that's something that I'm interested in and specifically, to improve kids' ability to be flexible and also to make those plans and set goals. And we've designed them to be delivered in our public school system. And that's because every kid gets to go to school, and every kid is-- also some of their most important work is happening in school. So it's a real-world setting that they need help. And also it's a place that they have access to. And so our tools are designed to be delivered by educators and not people with PhDs even or social work degrees. But we have interventions that can be delivered with fidelity, which meaning they can do them the way they're expected to be delivered by classroom teachers, special educators. And we also have a lot of support tools for families. And that's one thing that I think is really important for us to think about, is, can we develop evidence in the real world that something helps kids with these skills like in this paper? Then the next step would be, can we understand how that impacts kids over time? And that's where the proof is really in the pudding in terms of, can we make an intervention that leads to different outcomes when a person grows up over time? And those are things I really want to continue to work on, to make sure that we do better. That's fascinating. And I hadn't read the study about ABA therapy, actually. As soon as we finish this podcast, I'm going to go look for it. But yeah, I know it has been a controversial therapy for the autistic community. And as you've said, not speaking about ABA in particular but speaking about this translation from evidence into policy, I think that's a real challenge in all areas of mental health. But as you've said, I think-- actually, I have experience of two different health systems. So I currently practise in the UK, but I'm originally from Brazil. And my dad is actually American. So I've been a bit everywhere here and there. And looking at this three health systems, I find so striking, as you said, especially in I think in the US and in Brazil that are kind of similar health systems, there is such a huge disparity on the amount of an access help you can get from services, depending on where you are. But also I think because of sometimes the private nature of it in some places, as you said, the evidence level of the help you get, it's so varied. In some places-- and I think as you said, especially in autism, there are providers who are not delivering evidence-based interventions. And I'm not speaking just about ABA. I'm speaking also about other things. And as you said, I think it's so important to partner with parents and with schools in developing evidence-based interventions that work for these children. Yeah. And that's what we tried to do with this unstuck and on target, which is this executive function intervention that we have developed for kids from preschool age. We have an elementary school age and then younger adolescents and older adolescents into young adulthood versions. And we were really trying to think about those disparities, and as you just mentioned, this gap we talk about in the US-- there's different numbers, but this 12-year gap from evidence to implementation in the real world. And that's not because people in the real world are ignoring our science. It's because our science needs to be much more built around what happens in the real world and what the possibilities are in the real world and what the resources are. And that's why we're really committed to these effectiveness-based trials where we're looking at what actually happens in the schools and learning from educators and also parents about what they can and can't do and what makes sense to them. And I think our whole field is getting more sophisticated about that, and we'll get better and better at that. But the other piece that I'll say that's really important to me when we're thinking about this issue of next steps, and what do we do when we get these, what to me, are really disturbing data saying that autistic youth are suffering with depression in particular and anxiety and that their executive functions that we know are important to those are really not improving as they grow up? One of the things that I think we need to do as well as think about delivering interventions in real-world settings and testing them in real-world settings is we also need to listen more to the autistic youth themselves. And they've been left out of the equation too often. And certainly, that's an issue with ABA. And again, ABA started a long time ago. So it's a different culture and context. But you're at real risk when you don't hear the voice of the person who is receiving the support, whatever it may be, or who is in need of that support. And so we've done more and more of trying to ask autistic people themselves what's going on. And so, for instance, the focus on flexibility, that's something that is driven not simply because parents in this study are reporting a lot of challenges, but we have other work published showing that autistic youth also described that as their primary executive function challenge. But in addition to that, we need to ask them about, what are the supports that they need? When does flexibility work well-- inflexibility work well for them, like those flow examples? And when do they need supports to move on beyond that? It's like we've left all this information kind of sitting there unused by leaving them out of the equation. And it's so important, as people move into adolescence and adulthood, they expect some autonomy. That's what they're supposed to be doing. And so we need to figure out how to engage them more. And because of that, I really value the work that I've been able to do that's in co-production with autistic people so I can learn from them what their priorities are and then work on that. Yeah. I think you've mentioned a very, very important point. I think the whole field of mental health research but especially-- and I think autism research is leading the way in that. It's moving towards participatory research, which I think is so important. And I think I've never been to-- you mentioned Inser. I've never been to Inser. But yeah, I know there's been some really nice work shown around this area there. And yeah, it's such important work you're doing. So you've mentioned the fact that there's lots of evidence to support that when it comes to depressive and anxiety symptoms, autistic youth, they perform worse. And another aspect that your study looked at, which I also found it was super interesting and is also super relevant to autism research, is the differences between females and males. And as you've mentioned also before, you found that females, they've experienced increasing anxiety problems over time. I just wanted to ask you your views on it. Why do you think that's the case specifically for anxiety, but you didn't find any differences for depression, for example? And also, if you want to talk a bit about gender differences in autism because I know that's also a very relevant topic for the community. Yeah. It's a huge issue. I appreciate you bringing it up. So one of the reasons why we have to study bigger samples of kids like we did here is because you need to look at variables like gender. And you can't do that when you have a small number. It's really hard to parse your sample even further, to divide it up into to males and females. But because a lot of us, myself included, have done a lot of research with smaller numbers of kiddos, some of the impact of gender, we've been slow to understand it. And if you think about it, neurodevelopmental condition like autism that has as a primary component differences in social communication is likely to be experienced differently by males than females because we as cultures-- and this would be across Western cultures-- we really educate and engage from a very young age males and females differently. And then we also have evidence that there's biologically based differences as well in the autistic community specifically related to gender. So for both cultural reasons and biology and others, we shouldn't be at all surprised when we see differences across male and female autism. There's another big factor that we study here a lot, which is that there's this disparity in who gets access to an autism diagnosis. So girls get diagnosed later than boys. We've got multiple samples here in the US showing that. We have it in our own clinic. When you do population-based studies, you see a slower-- you see more girls compared to what you see when you look at people who are coming in through research. So we miss girls. We diagnose them later. That in itself is going to have an impact on mental health because they're not having access to the supports or the identity that helps them to navigate growing through adolescence. We raise girls differently. The biology is different. And so for all those reasons, it's not a surprise that we saw that autistic girls in particular are experiencing higher levels of anxiety as they. And the difference in our data really emerged around age 12 than boys. So their anxiety is high and gets worse, the girls, in such a way that by age 12, they're showing more anxiety than the boys in our study. And again, that's bad news. We don't want people to be suffering with anxiety, and we want to make sure that we're thinking about how to help them. The whys of that, those are complicated. And there's some really good work that's come out-- some of it in JCPP, as well as other journals-- looking at globally, what's the difference between boys and girls with autism? And one of the pieces of data that's come out is that the girls are doing more generally to manage other people's impressions of them. You can call that compensation. I mean, it can appear in different ways. Compensation, camouflaging-- there's different words. But they're actively working to try to appear or present in a way that neurotypical people they're interacting with would find acceptable or that they think would find acceptable. So that extra effort and work also happens for boys. It's not like that's a girl-specific thing, but there's more of it that comes out in meta-analyses and big studies that girls are doing more of it. And that could drive of anxiety. There's a relationship between how hard you're working to meet the expectations of the person you're talking with and the amount of anxiety you may feel. It could lead to more effort, and that could lead to more exhaustion and multiple things that could drive mental health challenges. Yeah, 100%. Yeah. I was going to mention the masking compensation you mentioned. And yes, I think it's so important that your study looked at this gender differences. And we spoke about this already indirectly. But well, as we've said, your study was the first to look at long-term executive function measures and their relationship with mental health outcomes in youth. And thinking about the implications from your findings-- and we spoke about needing to improved support for autistic people-- what would you consider are the main implications of your paper for parents, schools, and clinicians? And autistic people themselves too, I hope. Yes, yes, yes. Yeah. I think, I mean the big implication to me is we've got a problem. We've got a group of folks who have incredible gifts to share with the world and incredible potential to live, to thrive in their own lives, and to lead a high quality of life experiences as they grow up. And yet we've got some barriers for that. And I would say mental health is a really big barrier, and it has huge, huge impacts. I mean we have increased rates of suicide in autism as compared to other populations. And that's not OK. We have to recognise that this is a crisis and that it needs resources and supports. And I think that's a first big, big implication. I think the next implication is we also have an opportunity. It's not that there's nothing for us to do next. And thinking about-- there's a lot of really interesting evidence-based interventions that have emerged in the US. There's a programme called Facing Your Fears that's designed to support and reduce anxiety symptoms in autistic individuals. A lot of people are thinking about how to modify and adjust depression protocols to be appropriate for folks with autism. So there's a lot of opportunity there. And I think supporting executive function from an early age is another opportunity that we want to think about. If that's underlying multiple different mental health challenges, let's go for something that's at a root causal level and see if we can't improve it. And let's get supports out there that are useful to people in the real world that they can use to support autistic folks. And let's engage autistic youth in how we're going to do that and what they need and what they want. Yeah. And I think, as you said, the real test of time, the real proof would be to see this intervention co-developed with autistic youth and as you said before, see if it has an impact on improving executive function in the long term. That would be amazing. My last question, Professor Kenworthy, is about looking ahead. And if you could highlight one area of research or one research question that you would really like to see developed in the field, what would it be? Is there any studies that you read recently that you felt were addressing one of those questions? God, that's like a kid in a candy shop. There's so much that I'd love to see us move forward with. I think, just to pick up on what you just said, one area that I would love to see much more support for-- in the UK and the US and some other countries in Europe, there's been a lot more support for community-based participatory research. So that's like this label that we give to work, where we are engaging the people who are directly involved in the receiving or delivering the interventions that we want to do. And so that's a really exciting development that's come along that I think will continue to grow and flourish. And as part of that, we've been able to develop this unstuck and on target intervention with voices of autistic people, teachers, parents, and others. The part that is hard from the funding perspective is we can get funded to run trials. And we can do them as effectiveness trials in real-world settings like school and home. But that funding for longitudinal following of those kids, that's a struggle. And that's something I'd love to see a lot more of. So we can do in treatment trials. It's we'll say a follow-up evaluation is six months after the intervention is done. Or maybe if we're lucky, we get 12 months in before the grant cycle ends. But that's really different than saying, if I do something when you are in preschool or you're early and you're at young childhood, 8, 9, 10, does that make a difference for you as you're leaving high school or going to college or becoming an adult? And there's some of that work establishing executive function as important for predicting adult outcomes, but it's not tied to specific interventions. The other thing I'd love to see-- and I think a lot of people are thinking about this. It's not just me, and people are starting to design trials this way-- is, how can we individualise these interventions? A lot of us have developed interventions. And I'm a big proponent of unstuck as one of them. But a lot of them work well for people. And what we tend not to be very transparent about is no intervention works for everybody. There's always people for whom a specific intervention isn't what they need. And so really thinking much more carefully about what works for whom and also thinking not just about, how do I give you tools? Clara, you have a challenge. You're feeling depressed. I want to give you some tools to address that. I'm going to teach you to be more flexible. But also, how do I help you and me together think about, what does the environment need to do differently for you? Because it's always a two-way street. You can have tools, but you could also have supports. And there's a lot, particularly when you work with kids who are neurodiverse, about the settings they're in. They just don't fit them very well. And so helping them to become aware of that and empowered in their knowledge of, I'm having a mismatch here between my inflexibility and this school schedule that asked me to transition every 45 minutes. That's not the way I learn well. Or this incredibly sensory stimulating, overwhelming lunchroom that I'm sitting in. This is exhausting me. I can't possibly learn after lunch, after going through that. And so really asking the question, if there's a problem, what are our opportunities to address that problem within the individual but in the larger context, in building understanding of what that challenge is and why it's there? And then also once we've identified that, what are the different kinds of interventions and angles we could take to improve things? And I think we're going to get much more sophisticated about that. But it's a long-term project. That sounds fascinating. And yeah, I think I'm not a qualitative researcher. But from qualitative studies that I've been reading, especially studies done with parents and autistic youth, it's really interesting to see, as you said, sometimes lots of the challenges they are facing, they're very environment responsive. And sometimes there's not a lot of understanding of-- as you said, there is a mismatch between their needs and the demands of the environment. So yeah, it would be so interesting to see if there would be a way of individualising interventions but also trying to make the environment more responsive to-- and also, as you said, each person is different, neurodiverse or neurotypical. Every person has different needs. So it might be that an autistic child struggles a lot with task shifting and doesn't work well in 45-minute blocks, but it might be that other doesn't find that much of a problem. But yeah, it's-- so the individual approach would be really fascinating to see. Yeah, yeah, I really agree. And also just that pause when you have a problem to first stop and think, let's just understand this because it's so common, especially for neurodiverse individuals, that the first understanding of the problem is that the-- particularly when their child, the child is not trying, doesn't care, is refusing, especially around flexibility. They're stubborn, or they're rigid, and then everybody gets stuck. There's no next step there. But if we can start with curiosity around, what is this problem? Is there an underlying cognitive challenge like flexibility that it means that the person is cognitively stuck? That's different than stubborn. I have a whole bunch more different intervention opportunities all of a sudden because it's not just about trying to reward you into being flexible or punish you into being flexible. But it's like, could I teach you a new skill? But then also, what is this problem emerging because of this bad fit between the setting and the person. And is that really all on the person to fix? So as we get curious, I think it just increases our opportunities. And like you said, then it gets much more complicated. So what's going to work for one person versus another person? But I hope that drives a lot of scientific inquiry as we move forward. Well, on that lovely and optimistic note, I just wanted to say a huge thank you, Professor Kenworthy, for this masterclass on autism research and also on your paper. Yeah, that was a really lovely, lovely conversation. And for you that's listening, I hope that you enjoyed it too. And there will be a link to the paper in case you want to read the full paper. And thank you so much for the listen. [MUSIC PLAYING]