Transcript
Dr. Umar Toseeb Hello, welcome to the Papers Podcast series for the Association for Child and Adolescent Mental Health, or ACAMH for short. I’m Umar Toseeb, Professor of Psychology. My research focuses on special educational needs and mental health in childhood and adolescence. All listeners to this and, indeed, any of ACAMH’s podcasts are eligible for a free CPD certificate. Do please visit acamhlearn.org for details of this, together with information on how you can access hundreds of hours of free talks, lectures, interviews, all of which you can also get free CPD certificates for. The web address is acamhlearn.org, that’s a-c-a-m-h-l-e-a-r-n.org. If you’re a fan of our Papers Podcast series, please subscribe on your preferred streaming platform, let us know how we did, with a rating or review, and do share with your friends and colleagues.
Today, I’ll be speaking to Dr. Nicky Greaves, a Consultant Clinical Psychologist, with over 20 years’ experience of working with autistic young people. The focus of today’s podcast will be the clinical review in JCPP Advances called “Emotion Regulation Difficulties and Differences in Autism, Including Demand-Avoidant Presentations, A Clinical Review of Research and Models, and a Proposed Conceptual Formulation Neural-Preferencing Locus of Control.” Nicky, thank you so much for joining me. Dr. Nicky Greaves Oh, it’s great to be here, Umar, and many thanks for your interest in my paper. Dr. Umar Toseeb Oh no, you’re welcome, thank you. Given the paper is about autism, I want you to start by clarifying some autism terminology that you’ll be using.
Dr. Nicky Greaves So, I wanted to use identity-first language, but obviously acknowledging people will have individual preferences. Dr. Umar Toseeb Excellent, thank you, and let’s start by you telling us a bit about who you are and what you do? Dr. Nicky Greaves My context, kind of, directly relates to my thinking for the paper. I started out in the NHS as a Clinical Psychologist over 20 years ago. This was in early intervention for parents of typically developing the under-fives, and we were, kind of, offering psychoeducation for their child’s early emotional development and providing strategies for positive behaviour outcomes. And then I joined the child development team, so that was really, you know, within a multidisciplinary team in autism diagnosis.
And then through this work, I heard about a parent of two autistic children, and she’d opened a new school solely for autistic pupils, and I thought, I want to work there, you know, because I wanted to help with intervention. I, sort of, felt like the journey had just started really. And over the years, I’ve been so grateful for this opportunity, so I’ve spent in-depth time with autistic young people, and I can come here and observe their individual views and experiences of school and, kind of, daily life, as well. And then I, kind of, have a bit of private practice doing the same sorts of things, sort of, real skills-based approaches. And I’m trying to write a book as well, sort of, bring it altogether into a book, and that’s, kind of, based on the – I wanted a formulation to, sort of, help with my understanding of writing the book, so that’s one of the reasons for the NP-LOC formulation in the paper.
Dr. Umar Toseeb Thank you, and I really like that you’re coming from this from a practice-focused perspective, as in, like, your research and research questions and how you’re approaching this comes from your experience of working with autistic young people and in practice, and I think that’s also a great novelty of the work that you’re – you know, that we’re going to talk about here. Before we go into the details of the paper itself, let’s start with some definitions, what is emotion regulation or emotion dysregulation? Dr. Nicky Greaves Yes, I’ve had to have a big think about it, as well. In the paper, I, sort of, give the example of exam anxiety, but I was trying to think of a different one here. I thought, if I give a, kind of, user friendly description it might be helpful, okay. So, you’ve driven to get your weekly food shopping, you’ve been a good citizen, you’ve followed the one way system in the multistorey car park, and you’ve finally seen that space, but somebody else drives up the one way system the wrong way and they grab it first. But I don’t know about you, but this would, kind of, throw me really, ‘cause my sense of safety actually and, kind of, feeling calm, is partly based on the assumption that people follow society’s rules, so that we can all, kind of, function really.
So, for me, this behaviour might feel unreasonable, and I’d feel pretty, kind of, stressed and crossed, and maybe a bit anxious, you know, it’d, sort of, throw me in that way. The – kind of, that feeling, kind of, anxious or angry, that’s the, kind of, the emotion part of emotion regulation, and that’s separate from regulation, that’s just the emotion. And then following on from this is either regulation or dysregulation. The emotion makes you feel quite, sort of, automatic, you know, it’s automatic, just arrives, it’s, kind of, quite out of your control. Your heart starts beating faster ‘cause of the adrenaline. You’ve got these, kind of, quite negative, rigid thoughts, that, kind of, urge you to act in specific ways. So, kind of, fight or a fight – flight response, amongst others.
So, you know, and that’s, kind of, going back to, kind of, early humankind’s life or death survival mechanisms, and the emotions are just part of that autonomic response related to perceived threat. So, these urges are often counterproductive, you know, they’re unhelpful in coping with, sort of, the modern daily life, and that’s why we come onto dysregulation. I was thinking here emotion dysregulation would involve acting on that, sort of, angry urge, so you might get out of your car and get cross with the driver, or you might just go home, you know. So, one of them, you might get arrested and the second one means you’re not getting any food, so that’s, kind of, dysregulation.
And then over time, of course, we develop complex social structures with associated expectations of, sort of, safe behaviours that enable society to feel safe as a group. So, in doing – in feeling safe as a group, that creates personal feelings of safety and control and that, kind of, agency in life, and that – and then, of course, ‘cause we feel safe, we can think and function more creatively. We’re not in that perceived threat mode, and that’s what makes us perhaps, you know, successful as a species, you know, we’ve got all that space to think. So, emotion regulation is, kind of, really quite intentional, so, sort of, intentional processes, and it’s viewed functionally. So, it’s the ability to manage that emotion response in a way that enables you to achieve your own values and goal-based outcomes, but within the context of society. So, in this food shopping example I was, kind of, thinking, you know, about being a trusted and a safe citizen, you want to buy your weekly food shop, and maybe you want to meet your friend for a coffee.
So, you, kind of, think about managing those feelings in an intentional way. You might beep your horn briefly, just to get that message across, but, actually, you’re going to focus more on taking deep breaths to get rid of the stressful feelings, bringing that, sort of, balanced thinking about, yeah, you know, at least, you know, I can chat to my friend about it later on over coffee. And then, you know, you’ve got your knowledge that if you drive up to the top floor of a multistorey car park, there’s often more spaces, so you can get your food shopping done. So, it’s, sort of, that positive reorientation, communication and, actually, sort of, remaining motivated and willing to engage in, you know, sort of, the socially purposeful and culturally agreed activities. And, of course, with that, over time, you know, you feel more confident, you can manage everyday life, you have good self-esteem and wellbeing, and that increases our perceptions of control and helps us feel safe, as well, so… Dr. Umar Toseeb I suppose what I was thinking was – is – sometimes I say, “You can’t help how you feel,” as in, about… Dr. Nicky Greaves Hmmm.
Dr. Umar Toseeb …a situation, and that’s the emotion, but you can help what you do with those emotions, and you can change that, and that is that – is – that’s the regulation bit. So, the emotion you’re experiencing… Dr. Nicky Greaves Yeah, absolutely. Dr. Umar Toseeb …is the automatic bit, and then the regulation is the intentional bit that you change. Is that a fair…? Dr. Nicky Greaves Yeah, no, definitely, no, you – yeah, in a few words, yeah, you’ve really summarised it. Yeah, that’s how I take – that’s my take on it, as well. Yeah, yeah, that’s, kind of, my understanding too.
Dr. Umar Toseeb Excellent, and then the other thing that I just want you to provide a definition for, which we talk about in the paper, is “demand-avoidant presentations with reference to autism,” what does that mean? Dr. Nicky Greaves Actually, demand-avoidant features appear to be really quite common in autistic children, and it’s a, sort of – it’s involving a resistance to everyday demands. So, quite, kind of, rigid thinking, sort of, a need to control others and following a, sort of – very strong need to follow a preferred agenda, those sorts of features. Dr. Umar Toseeb Okay, excellent, so let’s get into it. What does the research say about the emotion regulation difficulties, or differences, in autistic young people?
Dr. Nicky Greaves You know, when I did – sort of, had a look into the research, it really is increasingly concluding that emotion regulation difficulties and differences are really quite universal in autism, and that they’re there across the lifespan. So, yeah, autistic pupils were showing more frequent and long lasting emotion dysregulation, and studies were showing that teenagers showed much more worries really about being, you know, rejected by peers, and maybe ruminating more after an event. And they’re much more reliant on parents to, I think, sort of, co-regulate those difficult feelings and to feel calmer again.
Findings were showing that in adults, 75% of autistic adults living in the community were feeling, you know, quite depressed or anxious, with emotion regulation difficulties being thought to really, kind of, underlie that. There’s another study looking at over 1,000 six to 17-year-olds, and that found difficulties in emotion regulation, predicted higher levels of anxiety, so that difficulty in regulating was related to much more, kind of, distress and anxiety. Dr. Umar Toseeb And are those emotion regulation difficulties or differences – what is the impact of, like, the core autistic features on emotion regulation in autistic people?
Dr. Nicky Greaves It’s a complicated one, really. It’s a, kind of, transdiagnostic challenge, because it’s, kind of, hard to know what’s a distinct disorder, like, anxiety, and then what’s actually part of a core feature in autism. I think a lot of research, it’s quite difficult in that respect really and, kind of, needing to keep that, sort of, complexity in mind. But studies show an impact of emotion regulation across core features, strongest one was with restricted and repetitive behaviours. That’s the, sort of, the strongest predictor, but, also, you know, looking at infants showing fewer social and early communication skills, you know, less robust perhaps eye gaze, facial expression and gesture use, and that relationship between social difficulties and emotion dysregulation and a decreased social motivation.
So, social commune – and communication difficulties, that’s a difficulty in understanding others, and then that, vice versa, sort of, being understood, was also thought to have an impact, as well. And creating, kind of, dialectical misattunement, so increasing the risk of feeling, kind of, misunderstood and perhaps isolated, and without that, sort of, sense of safety that I was talking about before, that social support can provide. Dr. Umar Toseeb And we’ve spoken about emotion regulation difficulties in – the definition of them, and then, also, we’ve talked about demand-avoidant presentations in autism, what’s the relationship between those two? Dr. Nicky Greaves In demand avoidance, it’s presenting to a degree that really hugely limits access to learning skills for daily life.
So it could be to the degree of, sort of – in my experience, it’s about, you know, school avoidance, that demand avoidance leads to not coming to school at all, or, kind of, other types of dysregulation. So things that might pose a risk to self or others, feeling such, sort of, distress that it’s creating barriers to, kind of, accessing daily skills learning. I’ve, sort of, noticed that even in our adapted school environment, you know, we’ve got visual, structured, individualised and adapted approaches, it can still be a big factor. It’s that idea of it being, kind of, out of – sort of, seemingly not really logical. It’s, sort of, so extreme that it’s – it – compared to the – what seems to be quite an innocuous or possible, you know, request that can be doable, and then – so, some Researchers have called that “extreme demand avoidance” or “pathological demand avoidance.” Dr. Umar Toseeb Okay, excellent. What about some strategies, so what might be some… Dr. Nicky Greaves Yeah.
Dr. Umar Toseeb …effective or ineffective st – emotion regulation strategies for autistic young people, including maybe some individual context strategies? Dr. Nicky Greaves Studies have found that autistic young people who engage in characteristically adaptive ER strategies, like, we, sort of, talked about before, much more improved outcome. So, they’re much better with things like peer social engagement, you know, kind of, getting on with their peers and understanding those, sort of – that interaction, and all the, kind of, good – the good wellbeing that can come from that. And a lot of research showed that, you know, just as in neurotypical development, actually, it’s that context around the young person that’s so critical, as well. So, parents and Teachers play a really critical role from an early age in supporting children to select good situations, and they might scaffold their skills, support them in terms of having more balanced thinking, encouragement. So changing that thinking from that critical negative thinking of perceived threat to a more, kind of, balanced thinking, support them in learning helpful regulation strategies and, you know, to help the young person to feel less anxious in everyday life and gain confidence.
We’ve also, sort of, found that other studies show that it can be stressful being a parent and that can be – have an impact, as well. So where that greater adult stress predisposed perhaps an increased tolerance for their autistic child’s avoidance to everyday situations, that’s difficult, ‘cause that’s, kind of, maintaining the anxiety, and the young person is not getting the experience. And that’s resulting in a, kind of – being able to develop that repertoire of adaptive strategies and, of course, then that’s impacting on independence and, sort of, wellbeing in adulthood, as well.
Dr. Umar Toseeb Just a follow-up question there, how do you determine in which situations avoidance would make things worse, versus asking the young people to try and engage with certain situations to reduce the anxiety? As in, like, you don’t want to ask a young person to engage in a situation that increases their anxiety in the hope that they would learn to regulate their emotions whilst doing that, if it was going to make it worse. Dr. Nicky Greaves I think it’s about finding – it’s that – often talk about comfort zones, it’s that, sort of, just that bit beyond your comfort zone idea. And I think often for autistic young people, it’s about explaining, as well, so I do think explaining, perhaps it’s a social story, or using some way that provides that understanding before of the expectation. Or it might be offering something that’s related to their preferred interests that is just a bit beyond their comfort zone, something a bit new.
One of the things that really comes out for me in looking into this clinical review was really making sense of the social world around the young person. That it might be really hard perhaps to understand the social world if that’s not been, sort of, something that’s been naturally there to, kind of, access, so it could be about explaining about that, as well. Dr. Umar Toseeb And part of your paper is about current models, so what are some of the current models for emotion regulation differences for your – for autistic young people? Dr. Nicky Greaves Most models really consider a predisposition to ER difficulties, and that’s related to interactions among many elements, and starting, you know, right from infancy. So, differences in neural circuitry, perhaps biological risks, and looking at the autistic core features, so the impact of sensory sensitivity, that preference for sameness and routines. And that’s, kind of, creating multiple mechanisms that interact with that context, that environment, you know, the – sort of, the parenting, the world around them, across, you know, sort of, across development. And that those result in emotion regulation difficulties, including the responses of anxiety, avoidance, other dysregulated type responses.
What’s a little bit different, I think, is that, sort of, extreme pathological demand avoidance has, sort of, been given its own hypothesis. That extreme anxiety and distress is related to the everyday demands and that’s, sort of, generating a fear and dislike of the demands, or perhaps having to cease a preferred activity and that that’s increasing this strong avoidance. And so, it’s really recommending interventions that use graded exposure type approaches, choices, but, you know, kind of, limited, and having some non-negotiable boundaries. For me, having looked through the literature, I have a slightly different view of that and, kind of, what might help.
Dr. Umar Toseeb And we’ve spoken a lot about emotion regulation difficulties in autistic populations, but how do emotion regulation abilities develop in a neurotypical population? Dr. Nicky Greaves Neurotypical infants are considered to be neurologically, kind of, hard wired to seek social attachments from caregivers as a way to access that emotional safety. And I suppose when you feel safe, you feel calm, and then feeling safe and calm keeps that perceived threat system at bay, so that’s what’s, sort of, freeing them up to function, to explore and learn and in that way develop. And this innate interest in the social world enables the developing child to then observe others and recognise positive attention and accept boundaries from adults and, kind of, learn to manage those, sort of, bumps of daily life, I suppose, in a way that enables them to access that, kind of, value-based goals in society, sort of, aim.
So, when they feel unsafe and experience stress and negative automatic thoughts come along, rather than engaging in the automatic dysfunctional regulation responses, they’re, kind of, learning to seek adults for support. You know, the adults are providing that, kind of, helpful self-soothing thoughts, which they can then internalise, and they’re explaining the social point of value of maybe have a go at something, you know, such as, practicing for exams, or, you know, something that’s just beyond their comfort zone. And then, over time, all of this learning becomes internalised. So it’s almost like a, sort of – I, sort of, thought about it in terms of locus of control. You’ve got that, kind of, adult perceived other locus of control initially, but then it becomes internalised, become a, sort of, internal locus of control. And then that’s creating those successful emotion regulation abilities, when you’re facing something challenging, you’ve got that, kind of, bank of resources internally as you grow up.
So, it’s, sort of, helping develop that understanding to see the point and value of being part of a social group, I was thinking. You, kind of – you know, you’re, sort of, therefore saying, “Okay, it’s worth intentionally regulating my emotions for this.” It’s, kind of, helping you see also that perhaps what’s functional is based on societal need, so you got to get up and go to school rather than stay at home and do your preferred thing. But you can see the point of that, and you get that agency and control and that ability to then function and engage in a broad range of, sort of, purposeful activities. And that’s really good for emotion regulation, actually, kind of, keeping yourself busy and occupied is very good, as well.
So, research is showing that effective emotion regulation really does improve dramatically over the first few years of life, and it’s then predictive of positive outcomes and better adaptive behaviour and functioning and social relationships. Yeah, and I suppose, in contrast, you know, actually what’s really difficult, I suppose, is that, you know, in autism, infants can form a secure attachment. So there’s evidence to show that, but there’s so many other aspects that seem to differ, and that’s perhaps more related to the – that impact, as we talked before, of those core autistic features.
Dr. Umar Toseeb And in your paper you suggest a formulation hypothesis, “neural-preferencing locus of control” in autism, and before we go into the details of that, can you just give us an indication of what is a formulation hypothesis? Dr. Nicky Greaves It’s a slightly unusual use of it here, really, ‘cause it’s usually specific just to an individual. It’s something that we use a lot in clinical psychology. So, the idea is that you – we’ve got the diagnosis of autism, and we’ve got lots of evidence and research to show about the impact of core features on emotion regulation, and we next want to suggest a, kind of, possible narrative, almost like a, kind of, a story really to fit those facts. So, you know, why across development are these factors leading to these emotion regulation difficulties?
And kind of, why does that get maintained? Why is that still happening in adulthood, as well? As I said, you know, in clinical psychology, we, kind of, do our assessment where we’re gathering the information and then we lead onto a formulation like this. And the purpose of doing that for us is really to guide intervention, so it’s thinking about what’s likely to be more effective. Dr. Umar Toseeb Thank you, and then moving onto the neural-preferencing locus of control in autism, can you talk us through that? Dr. Nicky Greaves If we, sort of, go back to the way the emotion regulation skills develop in neurotypical development, the NP-LOC hypothesis is hypothesising that it’s disrupted in autism. So, instead of that, kind of, neural-preferencing towards caregivers and social support to feel safe, it’s increasingly preference towards engaging in those preferred activities and routines and interests. And us, sort of, thinking, you know, if this was happening, you know, this could be for a number of reasons. So, it could be that these, sort of, social offers of, you know, a hug and a reassurance might feel sense – like a, sort of, sensory overload. You know, perhaps that’s not something that your brain is making sense of, or maybe it’s, sort of, difficulties understanding that – what social support is about, its, kind of, purpose.
It’s, sort of, that very early, kind of, neural network maybe, that, sort of, neural-preferencing, thinking about that, what happens then? So, you know, over time, if you’re engaging in your preferred interests as that, that’s the route when the bumps of daily life come along, and that’s what makes you feel in control and you have that perceived safety, and that sort of – you know, that’s where you get your mastery in wellbeing from. You’re not getting it through the neurotypical emotion regulation skills that’s based on that social context described before. This situation, kind of, reduces those social routes to accessing wellbeing. So, you know, you might not really know about asking for help, and that’s something actually I’ve observed a lot with the young people that I work with in the school over the years, it’s something that seems really hard. And so, I feel like a lot of young autistic people are perhaps missing out on the access to that social support, as well, so – and the impact of that too, and, you know, just how calming that is to, kind of, be able to ask for help, or, you know, just talk about what, you know, what a difficult day you’ve had or whatever.
And the difficulty is that, kind of, that, you know, that is helping mastery and that’s very helpful in society. You know, that young person is getting some skills that is really, you know – can be really important in society, but it’s – if you’re not, sort of, understanding what the social world is about, then it’s very hard, because everyday life is still coming along, it’s still, kind of, hitting you, you know, you’ve still got those bumps and challenges. And so, that, sort of, sense of safety and control is undermined, I think, it’s, sort of, you know, threatened by daily life in a way. It’s, sort of, leading to those kind of critical incidents in autism that it wouldn’t be doing perhaps for a neurotypical – in your typical development, and then that’s leading to those, sort of, negative chronic cognitions and that emotion dysregulation as a result.
Dr. Umar Toseeb And we know that autistic young people, on the whole, as a group, have higher levels of depression and anxiety, compared to neurotypical populations, but there’s lots of individual differences, and we’ve – you’ve mentioned this already. And emotion regulation difficulties seem to be a transdiagnostic thing that feature in a lot of these difficulties. How does the neural-preferencing locus of control model contribute to our understanding of anxiety and depression in autistic individuals? Dr. Nicky Greaves When faced with the inevitable bumps and challenges of daily life, autistic children are more likely to feel understandably anxious and may be confused or annoyed. So there might be a range of responses and different cognitions, and that’s reducing access to social support. And, you know, the NP-LOC model is, sort of, showing that reduced access and that, kind of – so, amplifying the situation. And, over time, this reduces feelings of safety and that sense of control, and it increases the likelihoods of those perceived threat responses coming. Actually, that button’s going to get pressed more often really to feeling under threat. And, of course, then you’re going to feel angry and anxious, and more likely to perhaps want to engage in those – or, you know, sort of, feeling that you have those urges to engage in those behaviours associated with it.
And I think over time it’s probably going to make you feel quite out of control really, sort of, lack of control and agency. And I feel that’s related to depression, so, over time, so perhaps in adulthood, you know, if you’ve had lots of those experiences, you might be more likely to have that experience of depression. I, kind of, find myself utilising that narrative of a well-known tank engine. I, kind of, felt it, sort of, helps. It does such a great job of explaining the complexities of emotion regulation, embedded ad – as it is, kind of, within the context of the social world, and I think it really demonstrates the practical implications.
So, each day, I don’t know, the train comes out of the sheds for the reason that he’s motivated to be a useful engine. That’s the reason he comes out, and he accepts the task from the authority figure, the Controller, and he goes along the line to complete the task. He goes along the tracks, and on his journey, there’s inevitably some stressful bumps and challenges, and he has other friends. He has engine friends that he can ask for help, as a team perhaps, or you know, they, kind of, help, and they work together to complete the task, and he tells the Controller that he’s done the task and he gets thanked. And he goes back to his shed and he feels really good and calm and relaxed.
And it made me think, gosh, all of those are social concepts, you know, you’ve got to – if you’re going to manage everyday life, you’ve, kind of, got to know all of that. You’ve also got to, you know, know unhealthy relationships like diesels and other stuff, as well, but, you know, it just really made me think. It’s so complex actually and really hard to explain. I suppose it, kind of, made me – sort of, unpacking it made me realise, you know, kind of, made me realise that really. So, NP-LOC’s suggesting that if across development you’ve gained your sense of wellbeing and perceived safety from a task that you enjoy in a setting where you have complete control, it’s not out on the tracks, it’s – as it were, it’s, kind of, you know, you’ve got that complete control. And, you know, if you know that going out of that environment is going to be stressful and challenging and you don’t necessarily have access to the emotion regulation skills, so things like knowing how to ask for help. And, perhaps, you know, you haven’t really had the access to learn the benefits and point of engaging in that social world, why would you leave that setting? You know, I’m, kind of, thinking, that makes complete sense to me, you know, I can understand that.
So, you know, if somebody then tried to make a demand of you, even as we said before, you know, what would be a reasonable demand? Even if it wasn’t one that wasn’t so anxiety provoking, you might feel quite stressed. You might refuse to do that, because it’s not really making sense to you. The difficulty is, I suppose, is that if you stay in that preferred setting, doing that task, you’re not really in a place to reduce your anxiety in daily life. That’s the thing, it’s that practise of daily life that helps you get your wellbeing and resilience. Dr. Umar Toseeb Thank you, and that brings me nicely to the next part, which is going to talk about the practical implications, for example, for education or clinical practice.
Dr. Nicky Greaves It’s really about addressing emotion regulation, rather than just addressing anxiety. It’s re – it is important to make it adapted, you know, it needs to be low arousal. But it’s about, kind of, using the concepts of emotion regulation to really help those cognitions, explain the purpose and benefits of daily demands and social support, and that could be in lots of ways. It’s really thinking about reducing emotion dysregulation, rather than just looking at graded exposure on its own, I would say. Dr. Umar Toseeb Okay, and what about some early interventions in, like, social understanding, what might be impact on emotional regulation be in autistic children?
Dr. Nicky Greaves So, it’s things like play-based sessions, something that’s also using that young person’s interest, something that they really enjoy. So, if it’s an interest in music, perhaps having a play-based session that involves music, or something that they like. That seems to really support that – making those connections of being in a social setting as being a good and relaxed – a nice place. And in terms of thinking about communication and seeing the point of communication, there was a study with preschool autistic children, where the adults actively provided social responses for their child’s attempts to communicate. But in ways that were on the child’s terms, and that showed significant improvements in the child’s behaviour and social communication and interaction over time, so that seemed really helpful.
Dr. Umar Toseeb And earlier we talked about individual context and how they interact, so what role might social support play in developing emotion regulation skills in autistic individuals? Dr. Nicky Greaves That early intervention is perhaps helping to build the perception of feeling safe in social settings. So placing that safety within a social setting as much as in a preferred interest setting and, in turn, supporting access to psychoeducation about engaging in daily demand. So, it’s getting that practice in, as well, really, that daily – that, sort of, day-to-day experience, and of accessing social supports, as well.
Dr. Umar Toseeb Fantastic. Where next? So, for the neural-preferencing locus of control formulation hypothesis, what else needs to happen? How do we move this forward? Dr. Nicky Greaves I suppose I’m interested to see whether NP-LOC can become a meaningful and helpful model really for explaining the strengths and differences and perhaps, you know, the difficulties seen in autism. Yes, I’m, sort of, curious really to know whether res – further research can confirm, you know, is neural-preferencing the mechanism that underpins the autism diagnosis? Are preferred interests linked to perceived control and safety? And what is the impact over time on emotion regulation and wellbeing in autism?
And I suppose I was thinking, you know, is this something universal, or is it perhaps more specific to demand avoidance? Does it make more sense to, sort of, perhaps particular ways that autism presents? Or is it something that we think of as more universal in autism? I’d really like to hear actually from different autistic young people themselves, you know, do they think it resonates for them? Does it resonate with their, sort of, personal beliefs and experiences? Dr. Umar Toseeb I think there’s a – there’s real value in that, ‘cause I think as Researchers, or as Clinicians who work with autistic people, you can only base things on your experience and people’s lived experience might not… Dr. Nicky Greaves Hmmm.
Dr. Umar Toseeb …resonate with that. So I think, you know, the final point that you make about what autistic people feel about this would really add to this, I think. Dr. Nicky Greaves Absolutely. Dr. Umar Toseeb And, finally, what’s your take home message for listeners? Dr. Nicky Greaves As we know strengths, interests and thinking styles in autism, you know, they offer such huge value, you know, that they’re so needed in our society, and I think, you know, managing the social demands of daily life places such a huge burden on wellbeing for autistic people. So, I’m thinking the clinical review demonstrates that alongside – understanding and adjustments are really needed, and it’s also suggesting that skills teaching might equally be needed. So, you know, so that autistic young people can more fully access the societal routes to wellbeing as much as, you know, the preferred interest as a route to wellbeing.
In terms of intervention, it is more about offering opportunities to autistic young people across development. Thinking about early intervention, I think it’s that – building that really good relationship, perhaps using preferred interests as one of the main ways to do that. So building that, sort of, safety, really, and then that, sort of, safety and enjoyment of being part of a community, kind – helping to increase that social understanding about the purpose and value of engaging in the social demands of daily life. So, it’s really making those connections as early on as you can, and then having those opportunities to learn those skills in emotion regulation that, sort of, fit within the context of society, so that you’ve got those skills about asking for help, and it’s, kind of – you know, it’s making sense really, perhaps. So, life is making more sense, then that’s helping reduce feelings of anxiety and that loss of control over time.
Dr. Umar Toseeb Thank you, Nicky, that’s been fantastic. Thank you so much for that wide ranging conversation. I think it’s really interesting, and the interface between emotion regulation difficulties, mental health, and autistic people, and how you provided a framework for potentially trying to understand some of the mechanisms through which that works. So thank you so much. Dr. Nicky Greaves Yeah, thank you so much, Umar, it’s been really fantastic talking with you. Thank you. Dr. Umar Toseeb For more details, please visit the ACAMH website, www.acamh.org, and Twitter @ACAMH. ACAMH is spelt A-C-A-M-H, and don’t forget to follow us on your preferred streaming platform, let us know if you enjoy the podcast, with a rating or review, and do share with your friends and colleagues.