Neurodiversity, Autism and Healthcare

In this Papers Podcast, Professor Jonathan Green discusses his CAMH journal Debate paper ‘Debate: Neurodiversity, autism and healthcare’ (https://doi.org/10.1111/camh.12663). This podcast coincides with World Autism Acceptance Week.

Discussion points include:

• The current experience of CAMH professionals working in the field of neurodiversity.
• The evolution of the autism concept and where we are currently in our understanding.
• The different realities of autism (as a clinical concept, an administrative term, and as a self-identification) and whether these different realities can co-exist.
• The risk of fragmentation and loss of a common language and why it matters to have a common language.
• Insight into an evidence-based framework for autism.
• Autism as emergent and transactional and the impact for CAMH professionals.

In this series, we speak to authors of papers published in one of ACAMH’s three journals. These are The Journal of Child Psychology and Psychiatry (JCPP); The Child and Adolescent Mental Health (CAMH) journal; and JCPP Advances.

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Jonathan Green is Professor of Child and Adolescent Psychiatry at University of Manchester and Hon Consultant Child and Adolescent Psychiatrist at the Royal Manchester Children’s Hospital. He studied medicine at Cambridge, Paediatrics in London and Psychiatry in Oxford before establishing clinical and research groups in Manchester, UK. He has focused clinically and in research on early social and relational development in children generally, and on autistic development in particular. His group has led development and testing of early parent-mediated interventions for autistic development for both pre-school diagnosed children (PACT) and in the pre-diagnostic stage (iBASIS); and built on this evidence to advocate an early developmental pathway approach to autistic care that is now being applied in UK and internationally.

In the last few years, he has undertaken increasing participatory work with the autistic community, including discussion on neurodiversity and the ethics of intervention, explorations of autistic phenomenology and full co-design of a new anxiety intervention for young autistic children.

Jonathan sat on the most recent UK NICE development group for autism. He is a Senior Investigator in NIHR, Fellow of the UK Academy of Medical Sciences, and UK Global Senior Leader for autism for the International Society of Autism Research (INSAR).

Other resources

• ACAMH Featured CAMH journal Debate Paper ‘Debate: Neurodiversity, autism and healthcare’, (July 2023), Jonathan Green
  • CAMH journal Commentary ‘A spectrum for all? A response to Green et al. (2023), neurodiversity, autism and health care’, (July 2023), Andrew Whitehouse
  • CAMH journal Commentary ‘Reviewing neurodiversity, autism, and healthcare by Jonathan Green (2023) from an autistic perspective’, (July 2023), Rhiannon Hawkins
  • CAMH journal Debate Paper ‘Responses to commentaries – neurodiversity, autism and healthcare’, (December 2023), Jonathan Green

Transcript

[00:00:01.310] Jo Carlowe: Hello, welcome to the Papers Podcast series for the Association for Child and Adolescent Mental Health, or ACAMH for short. I’m Jo Carlowe, a Freelance Journalist with a specialism in psychology. In this series, we speak to authors of papers published in one of ACAMH’s three journals. These are the Journal of Child Psychology and Psychiatry, commonly known as JCPP, the Child and Adolescent Mental Health, known as CAMH, and JCPP Advances.

Today, I’m interviewing Jonathan Green, Professor of Child and Adolescent Psychiatry, University of Manchester and Manchester Academic Health Sciences Centre. This podcast coincides with World Autism Awareness Week, and we’ll focus on Jonathan’s CAMH paper, “Debate: Neurodiversity, Autism and Healthcare.” 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 friends and colleagues.

Jonathan, welcome. Thank you for joining me. Can you start with an introduction about who you are and what you do?

[00:01:08.040] Professor Jonathan Green: Hi, Jo, yes, very good to be here. So, I’m a Clinical Child Psychiatrist, as you mentioned, working at the Manchester Children’s Hospital, and there, I run a clinical service, and have done for many years now, focusing on early child social development and particularly autism. And have worked in inpatient settings and specialist outpatient settings, which is more where I’m at now. I’m also a Research Professor in the university and I run a Research Team, and we are particularly interested, in the Research Team, in early child social development, early autistic development, intervention development and testing. So, I’ve done a lot of work on early intervention and testing those in rigorous trials. And in the last few years, increasingly worked with the autistic community, and we’ll be talking a bit more about this, I think, in the podcast, thinking about autistic experience and how we can co-produce interventions and services with the community.

[00:02:15.550] Jo Carlowe: Fantastic, thank you. So, we’re going to focus on your paper. This is “Debate: Neurodiversity, Autism and Healthcare,” recently published in CAMH. The paper opens with the following statement, “We are at a time of unparalleled flux in our understanding of what autism is and how to respond to it, including our understanding of the role of clinical services.” Jonathan, can you set the scene for us? What is it currently like for CAMH professionals working in this field?

[00:02:45.840] Professor Jonathan Green: I think the experience for CAMHs professionals is quite a complex one, which is really why I wrote the paper. So, this paper is – was really primarily addressed to Clinician colleagues, but of course, given the current environment, one knows that all papers of this kind are going to be read by a diverse audience. I was thinking about my Clinician colleagues, and I think now we’re in a phase of CAMHs, of child mental health, but also, paediatric – child paediatric practice, of huge interest in autism, huge referral demand. So, it’s quite extraordinary, actually, that for many CAMHs services, up to 70/80% of new referrals, at the present time, are in relation to neurodiversity and autism.

There’s a huge preoccupation with this, obviously in the referring community, as well as the clinical one. So, there’s that. There’s a – in other words, an experience for Clinicians of huge demand, trying to manage that demand efficiently, often feeling overwhelmed with waiting lists and constantly feeling under pressure and feeling bad for parents who have to wait so long with their children on waitlists, etc. And I think a confusion about what to do, and “So, what is autism, anyway?” as I say in the paper. And what should we do about it within healthcare? And I think those questions that – which are, essentially, conceptual ones and practical service provision ones, dominate the experience of Clinicians at the moment.

[00:04:17.000] Jo Carlowe: Thank you. We’ll dig a bit deeper into the questions you’ve just raised in a moment, but can you give us a, kind of, brief overview of the paper? What was the aim?

[00:04:27.610] Professor Jonathan Green: So, the aim is to, as I say, engage Clinicians, engage, hopefully, with their experience and concerns, and to try and present a conceptualisation of autism as we currently understand it from the developmental science literature and the intervention literature. So, an evidence-based, I hope, conceptualisation of autism, as I say in the paper, “emergent and transactional,” and we’ll come back to those terms, I know, in the podcast. So, to try and give them a conceptualisation of neurodiversity and autism in the current state of things and also, then, some suggestions of how – what this might imply for how we can develop and apply services.

I’m particularly interested and finished the paper off, really, with this, in how we should organise services now, better, more efficiently and more evidence-based. So, I end the paper with some proposals for what I call an “evidenced care pathway for autism” in the current state of things, and I hope that, you know, colleagues will come away with perhaps a language, a way of thinking about autism in the current state of things and some signposts for how they might respond clinically.

[00:05:39.580] Jo Carlowe: I’m sure that would be greatly appreciated.

[00:05:41.500] Professor Jonathan Green: Hmmm hmm.

[00:05:42.500] Jo Carlowe: I want to go back to the conceptualisation of autism. Can you describe the evolution of the autism concept over time and explain where we are at currently?

[00:05:53.800] Professor Jonathan Green: Yeah, well, this is a deep and interesting question. The, sort of, classical sense we have of autism as an entity, really, I would say, clinically pretty stable since the 1940s, when we had the descriptions from Leo Kanner, classically, and others, of this entity called ‘childhood autism’.

Really, from the 60s and 70s, this notion of autism got codified into what was called at the time, what we still call, really, a ‘behavioural phenotype’. And what this meant was that the – particularly the Clinical Scientists at the time wanted to try and work out a way of investigating autism systematically and scientifically and epidemiologically, and they developed a notion of measuring behaviour.

They felt that they couldn’t really approach autism in any other way than observing behaviour at the time. And indeed, this was successful and developed a really consistent, coherent and reproducible sense of what we call the behavioural phenotype of autism, based on observed behaviours, mainly in children. Though adults were not so much considered at this time, which has changed.

And this so-called behavioural phenotype really defined what people thought about as autism and what Clinicians came to understand as autism, as well. And we can see this now in historical evolution and it was in – codified into the DSM and the ICD iterations of those nosologies, into really, 50/60 years of clinical science development and investigation. And I think behind that, at the beginning, was a rather typical biomedical kind of approach to say, “Okay, here’s an entity. We define it by this behavioural phenotype. Let’s look for the cause of it,” so-called biomarkers and original causes, and these were particularly focused on genetics and on brain science. And so, the search was on for particular genes.

When I was first involved, at the beginning of my career in early genetic studies, there were the notion there would probably be five or six main genes that would explain this entity. And that we would be able to find some key neurodevelopmental signatures in what was called at the time, the ‘social brain’, the, sort of, areas of the brain that might be affected to explain why autism development happened.

So, this was a dominant paradigm for a long time, and I think what’s changed, and I mention in the paper this sense of a paradigm shift, and I do believe that that is happening at the moment, for a number of reasons, one is that that scientific project has evolved into increasing complexity. So, the idea that we were going to find a single cause, genetic or other, has really disappeared on the horizon. We’re into a much more complex landscape of what we call now ‘neurodiversity’, or ‘distributed autistic traits’, and on the other hand, simple neurodevelopmental brain biomarkers, so-called, have not been realised. We haven’t found these.

What we found instead, through some lovely studies, some of which I’ve been involved in myself, research wise, have been a number of different subtle differences all across brain functioning and psychological developmental functioning. So, it’s like a whole diffuse set of differences, and from a genetic point of view, we know that there are several hundred, now, genes of small effect that attribute to autistic development, except for that minority of single-gene cases, which are real and important, but they’re not the majority of what we think of as autism in the community.

Our concept of autism now is – and that’s partly my – what I’m addressing in the paper, is how we can still understand autism as an entity against this background of diversity and diffusion. We’ve got a – if you want in, sort of, technical terms, sort of, dispersed traits across population, without particular simple boundaries between autistic trait variation and as it call – were, normal distribution. So, it fades – they fade into each other when you look at it at a trait level, and yet, we still recognise an autism entity. And this contrast between an entity that we realise, against a background of distributed traits, that we understand as highly heritable, understandable within neurodevelopment, that contrast between distributed traits and an entity is what I tackle in the paper, by calling autism ‘emergent’ within development.  And the concept of emergence is used in order to try and bridge this conceptual paradox between the dimensional trait version and the categorical entity version of autism.

The innovation in the idea of autism that I’m putting forward in the paper is that autism, for a long period in its conceptual evolution, was thought of as, basically, genetically determined, particularly in the Anglo-Saxon tradition. That it was highly heritable, and we know that’s true, at a family level, and that actually, autism would just develop in child development as a process of genetic unfolding. So, it’s highly intrinsic to the child.

The different that – and I’m not contradicting that at all, that happens, but what I’m adding to it is a more modern notion of what I call the transactional environment within which the neurodiverse child develops. In other words, a baby who’s born neurodiverse experiences the world, just like any baby does, both in physical terms and in interpersonal terms, and the way that they experience the world early on also has an effect on autism emergence.

We know autism as an entity emerges in the first few years of life. You can see it as a baby. It’s like something that comes early in development, and the question has always been what’s the antecedent to that? What are the developmental processes? And I’m suggesting there are transactional processes between the young child and the environment that contribute to autism emergence.

The reason I say that is that this is not just a, sort of, theory, it’s based on the fact that when we do clinical trials of interventions into the early environment around the neurodiverse child, and we succeed in altering that early environment, we do also the way autism emerges. In other words, the logical inference from that is that the autism concept is, at least and partly, determined by environmental experience.

It’s, to some extent, malleable, not completely, but to some extent, that emergence is malleable, depending on environmental transactions. And that idea of autism as emergent early on, out of the complexity of distributed trait variation, and the idea of emergence really is that it’s more than the sum of its parts. Autism emerges as an entity, a recognisable entity. It can’t be reduced to its component parts successfully and part of those parts is the transactional experience in the environment, that – so, I think of autism in that sense as both emergent and transactional.

[00:13:31.210] Jo Carlowe: Thank you. You very comprehensively have described the paradigm shift that has occurred over the decades. It sounds like we haven’t quite landed yet, and you talk about “Profound changes are afoot.” Can you elaborate on what you anticipate when you talk about ‘profound changes’?

[00:13:49.620] Professor Jonathan Green: To some extent, they relate to what I’ve just described, in terms of some paradoxes that have emerged in the science investigation over the last 50/60 years. But also, in parallel, in the last ten/15 years has been a rise in awareness from the clinical and science community of the neurodiversity movement and autistic advocacy. And this is – has been a powerful phenomenon, which has given us a new perspective on the experience of autistic people. They’re basic autistic people who have found their voice about what it’s like to be autistic and their opinions on how those people, those advocates or the community, wish to be treated. And alongside that has been a real expansion in the concept of what autism might be.

So, we have another paradox here, which is the core entity, or core prototypical entity that we recog – sort of, recognise clinically, and yet, what we call autism has gradually expanded as we’ve expanded the description. And as autistic people talk about their experience, those experiences are quite diverse and expand the concept still further. And this has led to a bit of a crisis, if you like, in the conceptualisation of what autism is, which we need to have a language to try and explain.

So, these are some of the factors. There’s social, in terms of the autism advocacy from the community, who wish to be understood and treated, often, differently, and they don’t want to be talked about. They want to be talked with. They don’t want to be treated on. They want to be supported with, as it were. So, a much more participatory approach that they’re – and of course, this is happening across medicine, but it’s particularly pointed here. And so, we have this combination of the scientific paradigm that is, as it were, under internal, I would say internal stress, and often, those are moments when science comes up with new innovations. And I think we are in one of those exciting periods now, alongside of which the neurodiversity and autism community gives us an extra dimension to think about as we go forward.

[00:16:05.380] Jo Carlowe: So, just to, sort of, summarise, so we have autism as a clinical concept, autism as an administrative term, used as a gateway to access services, and autism as self-identification, which advocates for a de-pathologized concept of autism. So, can these different realities co-exist? And I want to quote something from your paper, ‘cause your paper talks of the risk of “fragmentation,” and “the loss of a common language,” which you referred to just before. Why does this matter? Why does it matter to have a common language?

[00:16:41.880] Professor Jonathan Green: It is characteristic, of course, of the current time, that there is vigorous debate, but also, often, oppositional debate and divisions and position taking. We’re all familiar with the culture wars and the, kind of, the sense of positions being taken and divisiveness, and this has certainly affected some of the discussion around autism in recent years.

Does this matter? Well, I think it really does matter a lot. You know, we are having, as Clinicians, to, sort of, rethink our relationship to what we thought of as autism and autistic people and you’re right to say that a lot of the autistic community argue for a, what they call a de-pathologized autism. In other words, autism as an idea, or concept, shouldn’t be thought of as a disorder. And yet, in our clinics, the kind of children and families who come to us are in great distress, are really struggling, often, and, you know, any Clinician who’s worked in services with autism knows the real stress and distress and disability that can occur in our clinical cohorts.

The danger is that we – the clinical reality that we see gets divorced from this notion of a de-pathologized autism and there is just an issue of healthcare legitimacy here, which is that a lot of the autistic community have argued that because they want to see – they want to argue for a de-pathologized autism, that means that we shouldn’t be treating autism. And there’s been a lot of argument focused on whether treatment should happen at all, and this relates to all sorts of other issues around eugenics and a sense of trying to do away with autism. So, that is – some of the concern from the community has been that, that there – that “You’re trying to do away with us.”

And so, we have, as Clinicians, to hear that, listen to it, really respect that view, but also, be aware of our own clinical realities and say, “Okay, so how do we conceptualise what clinical service provision and intervention is in the current day with autism?” And for that, I think we do need a common language, a clinical language with which we can ident – understand what autism is and how to talk with autistic people, colleagues, in a unified way. Otherwise, we just end up being siloed. Clinicians who do this, but actually no-one trusts us, or at least a lot of the community don’t trust us, don’t think what we’re doing is legitimate, that is an unsustainable situation for a healthcare system.

In my view, I think we need a participatory approach, one where we co-construct it with our users and our colleagues and the community around us, and that we need a common language across culture, as well as healthcare, to make sense of this thing we call autism. That’s the challenge at the moment, and I think there are a lot of forces, as it were, pushing us apart, and part of my article is to try and find a common concept and language to help bridge that.

[00:20:02.120] Jo Carlowe: We’re going to move on in a moment to the way that you’ve set out your framework for this, but before we go then, I just want to know where intellectual disability and language impairment, how do they tie in with this debate?

[00:20:16.170] Professor Jonathan Green: Yes, they tie in importantly, because over the last, you know, 20/30 years, the basic science, the epidemiology, the clinical science, has disaggregated, has taken apart, intellectual disability and autism per se. So, it used to be, when I first came into the field, personally, these things were very interlinked and part of a definition of autism related to delayed developmental milestones in various kinds. The science since then has, basically, contradicted that idea, because we can find autism, recognisable autism, across the spectrum, the range of intellectual ability and disability. We can find people with extreme cognitive abilities and, you know, superior, if you like, skills, cognitively, who are autistic.

So, autism and intellectual disability have been disaggregated. They often co-occur in our – certainly – especially in our clinical samples, but they are fundamentally, rather different in concept, and this has been – and language development is rather similar. So, language development strongly correlates with intellectual disability, in other words, developmental delay and language delay really go hand-in-hand, often. And language ability delay in itself has also been disaggregated from autism. In other words, one can have autism with extremely good language skills or no language skills at all.

So, these are separate, kind of, entities now in our understanding, and this has been a real evolution in our concept of what autism is. What it means is that we need to have clear in our mind what relates to autism and what relates to intellectual disability and language disability. And as long as we keep those concepts clear, both clinically and conceptually, then the whole thing becomes much easier to make sense of, in my view.

One of the contributory issues here is that intellectual disability per se has not received nearly enough science, clinical science, research attention, comparatively with other things, and that needs redressing, so that we are – we don’t understand enough about intellectual disability across all its forms. But in clinical practice, we have to work with that and also with autism, but not confuse the two.

[00:22:39.170] Jo Carlowe: Thank you. So, Jonathan, in your paper, you set out a way forward in which you lay out a coherent and evidence-based framework for autism. Can you describe this for us?

[00:22:49.940] Professor Jonathan Green: Yes. So, it partly goes back to what I was saying earlier. We understand now that we have a landscape, if you like, of what we call distributed traits within what I think of as the tradition of individual difference psychology. And that’s a long tradition that goes back to the 50s and 60s, of recognising what, in a sense, is the obvious thing, but really taking it seriously, which is that babies/children are born different. You know, they have different characteristics, different brains, different bodies and then, as they grow, different minds. And this individual difference psychology is more than just a, sort of, cliché form of words. It’s a profound understanding of the important fundamental differences across biology, across psychology, in development, and taking that seriously when we come to think about our theorising.

So, within individual difference psychology, what I’m advocating is the fact that we see autistic or neurodiversity difference as part of that individual difference landscape. That’s fundamental here, on the one hand, and as with individual difference psychology across a lot of different phenomena, this is inherently non-pathological. This is biological difference. So, we’re saying there’s a distributed trait landscape of neurodiverse difference that’s inherently non-pathological. I’m saying that however, this neurodiverse landscape includes neurodevelopmental differences that are profound. It’s not that I’m trivialising this. It is – you know, some of these differences are very significant and do completely shape how development progresses.

But I’m saying that within this notion of neurodiverse infant development, these babies experience the world differently and they have – this is this notion of transactional interaction. In other words, one person influences the other. The other person influences that person. It’s a transaction both ways, and one understands that in terms of a neurodiverse baby/child’s transaction with the environment around them, particularly the interpersonal environment. And because autism is so fundamentally social in its manifestations, this interpersonal environment is particularly important.

So, the neurodiverse child, who, by the way, experiences the neurodiversity most likely fundamentally, in non-social terms, these are what we call in the – the sensorium, the experience of the sensory world, space and time, how time flows, the ways attention flows from one way or another. These are the kinds of experiences that are really fundamental to autistic experience. They actually have a big difference on the way that the autistic child experiences the environment and it’s out of that that grows, emerges autistic states or recognisable autism in the first few years of life. And that transaction between the neurodiverse child and the environment is the transactional aspect.

So, I’m talking about autism as emergent, from the background of neurodiversity and transactional with the environment. And we still then have an autistic entity, which we have to define. It’s got fuzzy borders. It’s never been easy to totally define yes/no, but we think we know it when we see it. But there’s another aspect to it, which I come to in the paper, which is now the experience of the autistic person needs to be incorporated into it. So, we have this neurodiverse background, the emergence of autism on transactions with the environment, but also, on evolving neurological and neurodevelopment, and then we have an autistic state. So, it’s trying to understand the entity of autism as emergent against this back – a non-pathological background.

And we understand that neurodiversity does make many children, not all, but many children, vulnerable to mental health conditions and to developmental struggles, and it’s those, those mental health conditions and developmental struggles, that the Healthcare Service needs to address and support. And the kind of intervention that I propose, that we’ll come onto in a minute, is what does that? And so, I’m proposing a way of understanding intervention, which doesn’t treat autism in the sense of trying to take it away, but supports it in the sense of neurodiversity, towards optimal outcomes and ‘autistic flourishing’, as we say.

[00:27:25.700] Jo Carlowe: So, with this recasting of autism as emergent and transactional, what are the implications for CAMH professionals and other stakeholders?

[00:27:35.200] Professor Jonathan Green: I think firstly, it helps us conceptually bridge this ‘pathology/non-pathology’ contradiction. We don’t have to think of all neurodiversity or autism as ‘pathological’. There are many autistic people who don’t need or want clinical services and, of course, one respects that. As Clinicians, we need to understand that autism is not necessarily ‘pathological’. However, we also, of course, understand that autistic children, autistic adults, often do need services. They are vulnerable, often, and they have a lot of associated difficulties and their autism itself needs support. So, that’s one thing.

Then we can think well, okay, so what can we usefully, legitimately, ethically, do, as Clinicians, in partnership with the autistic community so that we have mutual trust and understanding? And, you know, what I’ve proposed, certainly focusing on the childhood end, which is my particular specialty, what I’ve proposed is that we understand this neurodivergence as individual difference. We look for evidence-based practice that can best support the individual difference towards optimal outcomes. And that comes to the intervention development that I’ve done and tested.

So, what we’ve done in these interventions is we, basically, focus on optimising the interpersonal environment around the neurodiverse child, by just working with the parents, initially. And this is a real difference from traditional autism treatments that had specialists working directly with children, usually doing behavioural modification type therapies to try and remove their autistic behaviours and make them more normalised. And that kind of behavioural approach has received a lot of criticism from the autistic community, so ABA and things like that. And personally, I think that that’s justified in lots of ways. I don’t think that that is a paradigm that really can be legitimised for core autism at this time, but maybe I can nuance that.

So, what we do is we work just with the parents to help them both recognise and understand their neurodiverse child’s communication. And by understanding it and recognising and being able to attend to the communication of the child, what they find is that then they’re able to relate to the neurodiversity more effectively, to respond more effectively to their child, and these things, sort of, happen automatically, in a way.

It’s the attending to and the understanding and the awareness that we help the parents develop through video feedback. And this is the key of our therapy approach, which is quite unique to it in lots of ways, that we work using this video feedback mechanism with parents to help them understand their child in relation to them. So, we, basically, show the parents videotapes of them interacting with their own child, and the parent explores these videos and helps them understand their child’s interactions and intent in communication.

So, once we do that, what we find in the research in the trials, is that once the parent becomes more responsive and accurate in their responses to the child, something magical starts to happen, which is that the child automatically, as it were, spontaneously responds by initiating social interaction themselves. They’re doing this autonomously and no-one’s forcing them to do it. They just are drawn to interact more. So, what we do is work with the parents’ responsiveness, but as that improves, the child’s social engagement improves as a consequence, and we’ve shown that this is a general phenomenon that we see over the trials that we do. It’s very repeatable. And as the child engages more spontaneously with the parent, what they’re doing is engaging in an environment, an opportunity for social learning and developmental learning with their caregiver, in a very normal way, in the way all babies do.

So, what we’re helping, really, is helping the neurodiverse child engage in those learning experiences, which are, if you want, the birthright of all children. That, you know, all children benefit from this. And what we then see going downstream, when we follow these children in their development, is that they generalise this, kind of, improvement in social engagement with the parent. They generalise that out into social engagement and other adaptation and phenomena with other people in the world. So, they are actually more socially aware and engage with others outside the family.

And also, what we show is that they seem less stressed. If we measure stress by the amount of stimming and stereotypies and – it’s not that these go away. These are something that are often very intrinsic to neurodiverse development and we don’t try and get rid of them, but what we show is they’re often arousal and tension related. They’re worse if the child is stressed. What we see is that they reduce behaviourally. This, we think, reflects the fact the child is less stressed. They feel more at home in the world, more at ease in their skin and more engaged with the reality around them, and more – feeling more accepted and more integrated. Those kinds of experiences we think they have from this, and there are a lot of benefits from it.

And when we measure the – what’s called the behavioural phenotype of autism as a result, actually, that actually changes. So, we’re changing that expression of the autistic phenotype. We’re not getting rid of autism or neurodiversity, but we’re changing that expression by improving what we call social competencies, social engagement, social communication and reducing stress. And that has the consequence of changing what we see as au – ‘autistic behaviour’.

Now, this is – has been misunderstood as we’re changing autism, and the answer is we’re not doing that. What we’re doing is we’re improving social abilities, the, sort of, sense of comfortableness, and reducing stress. And what we see, which is pretty extraordinary, actually, is when we do this in the dyadic – the family setting, that the benefits of that continue for years after the end of therapy. So, we’ve done a – the longest formal follow-up we’ve done is for six years after the end of therapy and what we see is these improvements, these benefits for the child’s development, are sustained over the next six years, which for a psychoso – what we call a psychosocial intervention, is a remarkable result.

That – to me, then, from that evidence, is a paradigm for me, or a model for how we should put in healthcare support for neurodiversity and families who have a child who’s neurodiverse. And if we can put this in at the earliest stages, we think that does the families good, it empowers parents, it help – it signposts them. It helps them to feel competent as parents and more in touch with their child, which is a key issue. They feel engaged and they feel, “I’ve got my child back,” or “I’ve got my child for the first time” is often what they say. And they’re probably sustained because this is embedded in family life so that it’s, sort of, 24/7.

Once the parents get the hang of this, the child’s getting that all the time, and that continues after the end of therapy, so we think that’s ideal. I think it’s neurodiverse aware and respectful of the, you know, the neurodiverse community, and does what we want it to do within the healthcare system.

There are other things we need to do within CAMHs’ response to autism. There – many autistic kids as they get older, have – develop anxiety, depression, other co-occurring mental health conditions, and those need to be treated in their own right with interventions that are, themselves, autism aware and ideally, co-produced with autistic people to make them as effective as possible. So, we need to do all that.

[00:35:44.750] Jo Carlowe: It’s so helpful. So, are there any further recommendations that emerged from your paper, or anything else that you would like to highlight?

[00:35:52.960] Professor Jonathan Green: Like anything, you know, there’s no magic bullet here. I think one of the big things for services are, as I mentioned right at the beginning, wait times, so that’s one issue. And one thing that we’ve proposed is that if we take this, kind of, support model of care, if I could put it like that, early on, in a way that we call pre-emptive, in other words, as early as the child is identified with neurodiversity or concerns about autism development, that if we can put this pre-emptive support in, that’s the most likely to be developmentally effective. And so, this is about a redesign of services, really, which at the moment, are very reactive, they’re, kind of, firefighting, they’re overwhelmed.

We think that by redesigning services like this into a what I’ve called the “Detection Care Pathway,” so that we have ways of detecting early neurodiversity, and then we immediately link that, and this can be pre-diagnosis, but we link that with this early support model that I’ve suggested, when you have that kind of early detection care, you should be able to reduce wait times and waitlists. And we’ve actually shown empirically, as we’ve done this in Manchester, that we do reduce the number of kids on the waitlist and we reduce the amount of time they spend on the waitlist.

The second thing I’d point to is that education is really key to the whole of any child’s experience, and the whole SEND issue, special educational needs and how we gatekeep into that is a real issue. So, at the moment, autism diagnosis, as you mentioned yourself, is used as a gateway label and this may or may not be really useful for the future, and I think there have to be some redesigned ways of special needs support within communities and schools. That takes us a bit beyond this conversation, but I do think there needs to be a redesign, based on something that’s more efficient and less based on a diagnosis, which, in the end, it seems in the current system to be inefficient, and because children are waiting for years for a diagnosis, which – and that’s hopeless because their needs are not being met.

The last one would be, and this is going to be coming, is that – more interest in autistic experience, what we call ‘phenomenology’, but perhaps we’ll come to that.

[00:38:21.671] Jo Carlowe: Okay, thank you, and Jonathan, is there anything else in the pipeline that you would like to share with us?

[00:38:24.740] Professor Jonathan Green: Yeah, so that comes, really, to what I’ve just said, which is that I think that we are – I am, certainly, myself, and I think the field will move this way, I predict, is a greater interest in autistic experience, what we call phenomenology. Because autism’s unusual in developmental mental health conditions, in not having subjective experience as part of its conceptualisation. They – when I – right at the beginning, I talked about this ‘behavioural phenotype’, where people made the decision, “We’re just going to look at behaviour, observed behaviour.” Which was successful in its own terms, but we now start to feel rather partial, and that what we need to is redress a balance and think more about autistic experience, phenomenology. It may give us a lot of insights into how to understand autism better and what scientific areas of investigation may be good. And of course, for autistic adults, their experience is really important, and we need to have a better way of understanding and conceptualising that.

So, one of the things I’m doing at the moment is really trying to think about how we could systematically get some evidence about what autistic experience actually is across the diversity of autism, and we’re planning a project to really look at that at the moment. That’s one of the key things I’m looking at.

[00:39:43.220] Jo Carlowe: Great, and finally, Jonathan, what is your take home message for our listeners?

[00:39:48.060] Professor Jonathan Green: Clearly, there’s a, you know, a diverse listenership for this and the messages will be perhaps different for different groups. But I think for Clinicians, who I did, you know, want to engage with this paper, I hope this gives a way of conceptualising autistic development that makes sense of the current environment to some degree and has implications for the way services are organised.

I think if one – if there was a – one clinical message I’d want to get across is that we have to make our autistic services in CAMHs and in paediatrics more evidenced, because at the moment, they’re just a hodgepodge of largely unevidenced reactions of the system. Well meaning and often skilled, but really, they haven’t been tested and evidenced properly, and that’s really a serious problem for such an important condition.

So, a redesign of services to be pre-emptive and evidence-based would be my key method – message to help us development an evidence-based pathway. And the other big message for Clinicians is we need to co-produce our services and, you know, many Clinicians are totally onboard with this, but I think we need to be working with autistic community, with autistic people that we know and with parents of autistic children and all the stakeholders, to co-design our services well, but within an evidenced and I would say, pre-emptive pathway. Let’s start on the right foot from really early on, and then, I think a lot of things will become much easier, clearer, and you’ll have a lot of much happier families.

[00:41:23.060] Jo Carlowe: Wonderful. Jonathan, thank you so much. It’s been absolutely fascinating. For more details on Professor Jonathan Green, 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 friends and colleagues.