We are the Association for Child and Adolescent Mental Health, or ACAMH for short. And this is ACAMH Learn. Welcome to Mind the Kids podcast from the Association for Child and Adolescent Mental Health known as ACAMH. Today the question is, what does daily living skills really tell us about independence, well-being, and the life chances for autistic individuals and those with intellectual disability? I'm Mark Tebbs I'm your host for today. I spent my whole career working in mental health, from frontline service delivery to director of mental health commissioning. I'm currently a chief executive of charity, and I'm a trustee of a mental health organisation, and also a career coach. I'm really pleased to be hosting these podcasts. It gives me the opportunity to speak to some of the leading clinicians and academics in the forefront of children and young people's mental health. So if you're a clinician, if you're an educator, a parent, or just curious about mental health, I hope these discussions leave you with some fresh insights and practical tools to help. Don't forget to subscribe where you get your podcasts from and also on your YouTube channel. Just search A-C-A-M-H, and you'll find us across all socials. Today, I'm joined by Dr. Elaine Clarke, postdoctoral researcher in the LifeSPAN Autism Lab at Rutgers University, whose work focuses on the experience of autistic individuals and the factors that support success in adult life. We'll be discussing her recent research, published in ACAMHs JCPP journal, into daily living skills, cognitive ability, intellectual disability, and what this means for practise, support and opportunity. So let's get started. Welcome, Elaine. It's an absolute pleasure to be speaking. Elaine, it's lovely to be speaking with you. Thank you so much for having me, Mark. I'm very happy to be here. Great stuff. Let's start with some introductions. It'd be great to say-- if you could say a little bit about yourself, your research interests maybe. If you collaborated with anyone on this paper, then you can give them a little bit of a name check. Absolutely. So I am a postdoctoral researcher in the lifespan autism lab at Rutgers University, and my work is broadly focused on understanding the adult experiences of autistic individuals and those with related conditions, with an emphasis on identifying individual, family, and contextual factors that support success in adult life. And the study that we will be talking about today I conducted in collaboration with my principal investigator at Rutgers, Dr. Vanessa Bal, as well as my graduate advisor, Dr. Catherine Lord, both of whom are experts in using LifeSPAN approaches to understand and support autistic individuals. And Dr. Bal is also renowned for her work on autistic individuals with high support needs, which, as we'll talk about, was quite relevant to this project. Excellent. Brilliant. So let's start by setting the scene a little bit. So it'd be great if you could talk a little bit about daily living skills. And I think the question for me is, if daily living skills are well supported, what difference does that make to someone's life chances, opportunities, quality of life, well-being? Yeah, that's a great question and one that I spend a lot of time thinking about. So Daily Living Skills-- and I'll try not to use too much jargon, but you may also hear me refer to those as DLS by that acronym. It's a term that refers broadly to everyday tasks like cooking, dressing, and managing money. And these are skills that, often in the general population, may not be explicitly taught, but they're really important to success in day-to-day life. And we have research to suggest that is the case, both in the general population, and then particularly in individuals with developmental conditions, including autism. So a number of studies of independent longitudinal samples, both in the US and in the UK, actually have found that daily living skills or adaptive behaviour more broadly, which daily living skills is a part of, are a predictor of things in adult life, like attending college and having a job. And we see that going back into childhood even. So we know that supporting these skills early in life can be a protective factor, if you will, for later adult experiences. OK, so daily living skills can lead to a greater sense of independence and control over one's life. Is that the layman's terms for the research findings? Yeah. I would say yes, and I would also add to that. So I absolutely agree. I think one of the key reasons we should care about supporting daily living skills is that they do impact autonomy and independence. So they allow individuals to feel more confident in their own abilities because they can do more things for themselves, which makes us all feel more confident. And when we're thinking about, What are the things that you can be doing at age 9 or age 14 that are going to set you up for success as an adult? it seems like, for autistic individuals, daily living skills is one of those things. So having relatively strong daily living skills seems to predict your independence later in life as well. Yeah, OK, brilliant. So from the paper, it was a sense that research on daily living skills is focused more on autistic individuals without intellectual disabilities. So is there a risk that we group people with and without intellectual disabilities together and miss some of the nuance? I think "nuance" is the key word there. So you're exactly right. Most of the existing research that has looked at daily living skills in autism has focused on individuals who have average or higher cognitive abilities, so those who do not have a co-occurring intellectual disability. And much of that research has found that daily living skills lag behind IQ in autistic individuals. So effectively, we see that, even in autistic individuals who have a lot of strengths in terms of their cognitive ability, their daily living skills don't reflect that. They're not able to do the things that we would expect someone in the general population to be able to do. And that work has led some to assume, I think, that that is something we see almost across the board in all autistic individuals. So having that autism label implies that you're going to have a relative challenge or weakness in daily living skills. And I think that illustrates a bigger problem in autism research, which you were alluding to, which is that often, we do not include autistic individuals with a co-occurring intellectual disability in research studies. And the danger there is that by not including those individuals, by not representing them, it makes us more likely to assume that the findings we have that don't include that group can be applied to that group. Yeah, OK. So there's a couple of things there to unpack a little bit. So you said that research on people with autism with higher cognitive abilities has found that daily living skills lag behind their cognitive ability. I wonder whether you could bring that to life to people with an example, what would that look like in someone's life? Absolutely. So I'll take an example from my own clinical work. So very early in my clinical training, I had a client who was a lovely young man. He was middle school age, so 11 or 12. And he was very bright. I knew that he was learning algebra in school, for example. And I realised after a couple of months of working with him that he did not know how to tie his shoes, and I was amazed by that. And I finally kind of worked up the courage to ask his parents, why doesn't he know how to tie his shoes? He's so bright. And they thought about it and were like, well, it's something that we worked on for a while. And we really tried, but it just was so difficult to do things, to get out the door to go to school, or to go somewhere as a family because it was taking him so long to tie his shoes. And finally, we just decided it wasn't worth our time. And so now we buy him slip-on shoes or Velcro shoes. And I do not want to pass judgement on the family at all. I think that is a very reasonable decision to make and something a lot of people can relate to. You have to get to school. You have to get out the door. But I think it also illustrates what this can mean in people's real lives and the implications it can have. OK, so it's not an ability. It's like it's an opportunity to learn and practise and be supported through that kind of learning journey. Exactly, and that's a key point we really tried to make in this study and in this paper, is that, really, there's a need for more opportunity to learn and practise daily living skills for autistic individuals. So in the example I just gave, it's not that that young man was incapable of learning how to tie his shoes, it's just that he needed a lot more opportunity and structure and time to practise than other children his age might have needed. Yeah, that makes sense. So what was the particular gap in research you were trying to address through this kind of research paper? Yeah, I would say there were two main gaps. So the first, which we've already been alluding to, is that there wasn't a lot of research that had specifically looked at how daily living skills and cognitive ability relate to one another in individuals who had autism and co-occurring intellectual disability. So we had a lot of research, but it was really focused on those with average or higher cognitive abilities. The other gap is, a lot of the existing work in this area has been cross-sectional. So what I mean by that is that it looked at people at a single point in time, and there was work in children and in adults that had seen this gap. But when we do a cross-sectional study, it's really a snapshot. It gives us a sense of exactly how this individual is in this one moment of time. It doesn't tell us how they got there or how they might change in the future. So the other piece we wanted to address at this study was looking at how daily living skills and cognitive ability related to one another over time and how that either changed or stayed the same as people aged. OK, so how did you go about that longitudinal study. What was your research approach? Yeah, so I cannot take a whole lot of credit for this part, but I was able to use a really rich, incredible data set led by Dr. Catherine Lord. So she has this cohort called the Longitudinal Study of Autism, or the LSA cohort, that she has followed now for a little over 30 years. So the individuals in this cohort were first seen between the ages of two and three, and they have been followed since then into their mid-30s. So I think the average age of the cohort now is around 35. And so with that cohort, I or we have data on these individuals going back to very early childhood, so age two to three, when somebody first had a concern about their development. And then, for this study, we used data up through around age 25 or 26. So we were able to track both life skills and cognitive ability across that big swath of time within this cohort. I was really interested as well. You break down daily living skills into a subdomain, so you can pack that kind of daily living skills broad term into different categories. Could you tell us a little bit about how that did and what those kind of categories were? Yeah, and I do want to say, these aren't categories I came up with myself. These are just widely used in the literature and in clinical practise. And it's also based on the measure we use that's called the Vineland Adaptive Behaviour scales. So on the Vineland, daily living skills are broken down into three subdomains. There's personal skills, which relate to things like hygiene, dressing, grooming, anything relating to maintaining your person; domestic skills, which includes things like cooking and household chores; and then finally, community skills. And this refers to things like managing money, navigating public spaces and some vocational skills, things like, Can you be on time? Or do you let someone know if you're sick, and you can't go to school? things like that. OK, right, yeah. So this is like a pre-existing data set, but longitudinal. And it has enabled you to measure across a life course perspective rather than that kind of cross-sectional design. Exactly. And going back to your earlier question about gaps in the field or new things we were doing here, existing work that's looked at daily living skills has looked at the domain level. So they've just considered the broader umbrella of daily living skills. There weren't a lot of studies that had looked specifically at just personal skills, just domestic, just community. So that was another step we took here, was not just looking at daily living skills as a whole. But if we zoom in on those three things, are there differences we see? Right, yeah. So what were your main findings? What were the highlights of the report? Yeah, I think the biggest thing or one of the findings I was most excited about is that the findings we had really didn't line up with the assumption we were talking about earlier, that autistic individuals almost always have daily living skills that lag behind cognitive ability. In fact, we saw more of the opposite. So actually in this sample, when we looked at the subdomain level, so zooming in on those personal, domestic, and community skills, about 80% of autistic individuals with a co-occurring intellectual disability had daily living skills that were either about the same as their cognitive ability or were actually stronger, so they were able to do more in terms of life skills than we might have expected based on cognitive ability alone. So I think that was the most striking thing we saw from this study. And how have you interpreted that finding? What does that mean? Yeah, that's a great question. I think it means that we need to be really careful about the kinds of assumptions we're making about autistic individuals with co-occurring intellectual disability. I mean that both in terms of research and in terms of thinking about services, so what's happening in the clinic or in schools. So for research, it's a clear illustration that we can't always assume that studies that just focus on those who have average or higher cognitive abilities-- that those findings are going to be similar, will generalise to those who have a co-occurring intellectual disability. And in terms of services, I think it is maybe a little bit of a wake-up call, if you will, that there's a lot of potential strength here. In terms of services provision, I think that this potentially highlights that there are possible missed opportunities for autistic individuals with intellectual disability. Because without a lot of concentrated services on daily living skills, the majority of these individuals-- this was an area of strength. So they could either do about as much as we would expect or even more than we would expect. And I think that raises questions about how much people could do if they got really high-quality opportunities to learn and practise more skills. OK, so the assumption is that they are less capable than actually the research is showing. Is that the correct interpretation? Yes, exactly. Did that fit across all of the domains, like, the daily living skills domains? I'm just wondering because, I guess, the strengths would look different in different individuals, right? That's a great point, and I think that's absolutely the case. That is not something or a question that we were really able to answer in detail in this study, but I am actually working on another project right now that is building off of this work. And we definitely do see differences in the types of skills that may be more amenable, if you will, to growth. So it looks like domestic skills, so those household chores and cooking things and related stuff might be a really good intervention target for autistic individuals with co-occurring intellectual disability. Personal skills I think is another area that seems like it could be feasible. Community skills-- it seems like that is a harder area to move for this subgroup. I would just add to that as a caveat that when we're thinking about this for service providers, it's really important to get as much information and buy-in from autistic individuals and their families in terms of what skills they actually want to learn and work on. And I think it's really important to have that motivation and collaboration intrinsic desire to work on these things. Yeah, absolutely, that kind of, yeah, just very individualised personalised care, I guess, yeah. And I'm just interested about that kind of mental trajectories, how those kind of skills developed over time. And did the study highlight particular moments of opportunity, of greater support? I'm just wondering what the study showed around those kind of mental changes over time. Yeah, so like I said, we had data from around age 2 to 25, 26. So in that period, I think the most important things we saw in terms of particular windows where you might want to intervene is that across all of the subdomains, so regardless of what kind of life skill we were looking at, everybody looks about the same through age five. So two to five, obviously people were learning skills. But we weren't able to meaningfully differentiate who was going to have a lot of strength in this area versus who might have less strength. By age nine, those groups were much easier to distinguish. So they really seemed to separate out. And then whatever group you were in, from 9 to 25, that effect seemed to get a little bit stronger over time. So for example, if you were one of the individuals where you had a real strength in daily living skills, so you're able to do more in terms of life skills than we would expect based on cognitive ability, that was clear by age nine. And it was even more the case by early adulthood. And if you were in that minority of individuals where you did have a weakness in daily living skills, again, that was clear by age nine. And it got stronger the older you got. So I think what that says is, it's not so much that there's a magical age where this is when we have to teach everybody life skills. To me, it more suggests that this is something we should always be thinking about. We need to be really prioritising it early. So as soon as someone is diagnosed with autism, one of the things we should be thinking about is, how are we supporting their life skills? How are we giving them opportunities to learn these things? And perhaps that mid-childhood to pre-adolescence period is especially critical in terms of making and maintaining gains over time. Yeah. And I'm just wondering. I'm curious about, what role do everyday kind of environments, like home and school and community, play in shaping those outcomes? Yeah. I think one clear role that they play is in terms of expectations. And this is something we talk about a little bit in the discussion of the paper. One really clear example of what I mean by expectation in this context is, if we think about autistic children who might be placed in a general education classroom versus a specialised classroom, the expectations that those students are exposed to both from teachers and from their peers are going to vary really widely. And I think that that is meaningful. The things that the people around you assume that you are able to do are going to shape the things that you were trying to learn how to do. So that's one illustration of the expectation piece. I'm sorry. I forgot the rest of your question, Mark. [CHUCKLES] It was just around the role the environment plays in shaping outcomes. Yeah, so I want to be careful here to say that, particularly when we're thinking about the family environment, there are so many different things that parents have to weigh and so many different choices we're asking them to make in terms of what to prioritise for their child and for their family. One thing that I talk to families a lot about in my own clinical work is that I just want them to be aware that life skills are an important thing to consider when you're weighing those decisions, and that it's something that you have the right to ask for help in. So in the United States, for example, we think a lot about Individualised Education Plans, or IEPs, because that is the main way that families communicate with the public school system. In terms of, what supports are you providing to my child in a school environment? And a lot of families may not be aware that they can ask schools in the IEP to include nonacademic goals. So you're very much allowed to say, I want my child to be working on these life skills, and these are the ways I want that to be supported in the school. It doesn't have to just be, I want them to be reading at a fifth grade level. Or I want them to know how to do this particular type of math. So I think that's the biggest thing in terms of environment, is that awareness is often not there in terms of, this is something that we should be thinking about. And there are ways to support it. Yeah. And how well do schools do that at the moment? Do you think that they're-- are schools supported to be able to support young people in that way? Yeah, I think the short answer to that question is, probably not, unfortunately. And again, I wouldn't place the onus here on schools. Teachers, I think very similarly to parents, are often in situations where they're having to weigh lots of different decisions at once in terms of what to prioritise. And may feel really under-resourced, so I want to emphasise that. But even outside of that, when we think about the training that someone receives to become an educator, life skills is often not a part of that. And that makes a good deal of sense because, by definition almost with daily living skills, we assume that most people in the general population don't need a lot of opportunity and explicit learning and practise time to acquire these things. But of course, the downside of that is when we're thinking about populations where we know that's not the case, where they may need more opportunity to learn and practise, our systems don't always have effective ways of building that in or making sure that that happens. Yeah, so on a policy level, if you had a magic wand that could change that system so that it was better supported, maybe better resourced, what would the system look like? Yeah. This might sound a little old fashioned, but I sometimes think about this in the context of home economics classes, which have really fallen out of favour. But when you think about, What was the purpose of a home economics class? it actually was to teach a lot of life skills. So you learn how to cook. You learned how to sew. You learned how to make a budget for going grocery shopping or things of that nature. And I think these are exactly the sorts of skills that we really worry about individuals with developmental conditions falling behind in. And I think, from a policy perspective, I would also make the argument that prioritising those things in an intentional way wouldn't just support students who have additional learning needs. I think it has the potential to support a lot of students. So I also chuckle sometimes at the cultural phenomenon in the last few decades of people talking about "adulting," quote unquote, and how hard it is to adult or be an adult. And I think it gets back to a lot of these same things. Like, of course it's hard. If no one's ever taught you how to grocery shop or how to balance a budget or how to make a doctor's appointment, those things are difficult to learn on your own. So I think we just need to be intentional about building in these opportunities for everyone, and then especially so we're making sure that there are more opportunities for autistic individuals and those with related conditions. Yeah, that's certainly a phrase that my daughter uses with me. [LAUGHTER] And I wonder, like, so much emphasis around technology and education. It's whether that gap between practicals gets wider or whether that just makes me sound really old. I don't know. I mean, it's possible. Something I see a lot, again, thinking just anecdotally about families I've worked with clinically, is that there's so much emphasis on academics. And that's not to say that academics are not important. At the same time, I do worry-- if you have a high school student who is incredibly bright, is taking advanced courses in literature, computer science, or whatever that is, but they don't know how to do their own laundry, and they don't know how to make a snack, how are they going to succeed in college? Because the academics are one piece of that, but there are other pieces we need to be thinking about as well. So it all goes together. Yeah, absolutely. So what's your next steps in terms of your research? You've got other kind of things in the pipeline? Yeah, so as I alluded to already, we are doing some follow-up work to really try to zoom in on individual skills. So I talked about personal, domestic, and community, but going sort of a step further to say, what are the specific personal skills or the specific domestic skills that seem to be possibly amenable to growth or intervention? And in that project, we are focusing specifically on adults with high support needs. So we have a sample of adults who meet criteria for profound autism, which is defined as an IQ of 50 or lower, being non or minimally speaking, and having 24/7 support needs. So looking at adults who people might make a lot of assumptions about in terms of what they can and cannot do, and trying to look at individual skills and say, are there things that they just never were taught to do or things where maybe this is an emerging skill? And with more support, we think that they could learn some of these things. So we did in-depth interviews with caregivers of adults who met criteria for profound autism to ask some of these questions. And that's where some of the data I was talking about earlier, in terms of it seems like domestic skills might be a really important area to provide more services because caregivers were often endorsing that that was somewhere where they thought that their adult child could either learn to do more things. Or they had some skills that maybe they can do it, but only if they're prompted. So maybe with some intervention, we could remove the prompt eventually. Or cooking came up a lot in this example. So some parents said, I've never let this individual use a sharp knife. Or I've never let this individual be anywhere near an oven or a stove. And that makes a lot of sense in terms of safety concerns. And again, I think families make these sorts of decisions for very good reasons. As a clinician, my next thought or question then is, OK, is there some sort of service we can connect you with that can help your child learn this in an appropriately safe way? So maybe for a particular adult in this example, I don't want your mother to teach you how to use a sharp knife or how to use a stove. But is this something, if you're going to an adult services programme, that we could build a treatment plan around so you could learn to chop vegetables or make yourself a meal? Yeah, I guess the context of that learning is really important, isn't it, and yeah, I guess, highly specialist in terms of the skills required to be able to do that safely and effectively? Exactly. And getting back to policy, I think that's where we need resources to really make that a priority and do that in ways that are thoughtful and effective. Yeah, I like that. We're coming to the end of the podcast. I just wonder whether-- is there a final take-home message for the listeners? Is there something you'd like to summarise, your research, your paper, or some of the work you're doing next? Sure. I think the biggest takeaway from this study is that daily living skills are not necessarily limited by cognitive ability. So to help autistic individuals really maximise their capabilities, we need to be intentional about providing explicit opportunities for daily living skills learning and lots and lots of practise. We also need to really carefully think about individual profiles of strengths and challenges and priorities so that we can tailor treatment effectively. And then finally, as a field, autism researchers need to be really intentional about including individuals with co-occurring intellectual disability and with high-support needs in their studies because we can't assume that findings from autistic samples without intellectual disability will translate across the whole spectrum. Brilliant. Thank you, Elaine, for such an interesting conversation. I really enjoyed it. Of course. I have enjoyed it as well. Thank you again for having me. It's great to meet you, Mark. It's great to speak to Elaine, and some fascinating insights. I think what really stands out for me is that we shouldn't underestimate daily living skills or make assumptions about what autistic people can and can't do. This research really highlights how important it is to give people the right support, the right opportunities, and enough time and practise to build confidence and independence in everyday life. It's also a really important reminder for us all, whether you're in research, education, or service delivery, to think carefully about the expectations we set to make sure autistic people across the full spectrum are fully and properly included and supported. So once again, don't forget to subscribe wherever you get this podcast from. Also on the YouTube channel, if you search A-C-A-M-H, and you'll find us all across social media. Join me next week, and I'll be speaking to Lilja Jónsdóttir as we discuss her research using a longitudinal study to examine early inhibitory control and emotional regulation as predictors of childhood internalising and externalising problems. [MUSIC PLAYING]