Professor Sue Fletcher-Watson ‘How early life experiences of autistic children shape them as autistic adults’ – In Conversation

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Professor Sue Fletcher-Watson discusses developmental disabilities, in particular in autism, how children develop and learn, and in particular in cases where this follows an unusual trajectory. Sue talks about research on communication and interaction styles, using a fascinating example of ‘diffused chains’.

She also talks about using technology for learning with augmentative and alternative communication systems, and her work at the Salveson Mindroom Research Centre, and Development Autism Research Technology.

You can listen to this podcast directly on our website or on the following platforms; SoundCloudiTunesSpotifyCastBox, DeezerGoogle Podcasts and Radio.com (not available in the EU).

Prof. Sue Fletcher-Watson
Prof. Sue Fletcher-Watson

Transcript

Interviewer: Hello, welcome to the ‘In Conversation’ 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. Today I’m interviewing Developmental Psychologist Doctor Sue Fletcher Watson, a Senior Research Fellow with a particular focus on autism and Director of the Salveson Mindroom Research Centre at the University of Edinburgh.

If you’re a fan of our in conversation series please subscribe on iTunes or your preferred streaming platform.

Let us know how we did with a rating or review and share with friends and colleagues. Sue, welcome. Thanks for joining me. Can you introduce yourself?

Professor Sue Fletcher-Watson: Hi Jo. Thank you very much for having me. I’m a Developmental Psychologist. I’ve actually just been made a Professor of Developmental Psychology starting on the first of August. So that’s exciting. I’m interested in child development and especially the kind of range of different pathways that different children follow and how that sort of shapes them as adults as they grow up.

So in particular I’ve focused on autism. Understanding how early life experiences of autistic children shape them as autistic adults and increasingly in that work I’m sort of adopting a neurodiversity framework as a way of talking about development, thinking about development and outcomes.

Interviewer: How did you come to be interested in developmental disabilities and in particular in autism?

Professor Sue Fletcher-Watson: I think it started out actually when I was still at school and I did some volunteering first of all in a special school which had very small classes of mostly autistic kids and then on a holiday scheme for children with learning disabilities. So it was sort of grown out of that kind of really hands-on experience and then I suppose I felt that my skill-set suited me more to a research environment than a practice environment. So I thought, you know, that’s how I would try and make a difference would be through research rather than directly in practice.

Interviewer: As I mentioned in the intro you are Director of the Salveson and Mindroom Research Centre. Can you tell us a bit about the centre and its aims?

Professor Sue Fletcher-Watson: The Centre was founded about five years ago and I became Director in early 2019. It’s a partnership with a charity, the Salveson Mindroom Centre. They provide support to families and young people who have what in Scotland are called additional support needs. Elsewhere might be referred to as special educational needs and increasingly as I mentioned at the beginning we’re talking about these young people in terms of neurodiversity. So I might refer to them as neurodivergent young people. Examples would be young people with a diagnosis of autism or ADHD, dyslexia, dyspraxia, and I think what we’re trying to do with this research practice partnership is address the educational inequalities that are experienced by these neurodivergent young people which extend far beyond kind of straightforward classroom attainment and into things like higher risk of being bullied or victimised at school.

Higher risk of school exclusion. Less participation in the classroom and so on. So we really want to think about how we can make an educational environment including kind of preschool right up to moving into employment that enables all learners and all young people to flourish on their own terms.

Interviewer: So I want to turn to some of your research. Your research interest in how children develop and learn and in particular in cases where this follows an unusual trajectory, I believe. Can you describe some of your work and your research?

Professor Sue Fletcher-Watson: I thought I’d highlight a couple of longitudinal studies here because that’s really if you’re interested in development then longitudinal data is absolutely the way to go. One study that I’m really excited to be part of is called Their World Edinburgh Birth Cohort and that’s a birth cohort study with 400 infants being enrolled at birth and 300 of those babies are born preterm. For the purposes of our study that means before 32 weeks. So that’s about two months before their due date. With that cohort study we’re following babies and their families over the years. We hope to follow them right into adulthood if we can and we’re looking really at working out who are the babies that go on to thrive because many babies despite having that really difficult early start in life do go on to absolutely thrive and who are the babies who are maybe going to have a few more challenges to overcome and if we can detect that a bit earlier in life can we start to do something useful in that early developmental period, maybe in the first two or three years of life when we know that babies are so receptive and responsive.

Another one I just thought I’d briefly mention is looking longitudinally at bilingualism in autistic children. So this one is again looking at how an early life experience shapes a child’s development and specifically how their language environment shapes how they grow up both in terms of how learning or hearing multiple languages might shape cognitive processes, but also the more kind of socio emotional aspects of that because of course bilingualism is often about cultural heritage, family. It goes way beyond cognitive domains. So we wanted to capture that full rich experience in our longitudinal sample.

Interviewer: I’m noticing that a lot of your study is focused on very early life, but what methods do you use for measuring cognitive and social ability in infants or pre-verbal children?

Professor Sue Fletcher-Watson: I mean, this is one of the big challenges. It is pretty tricky. We use quite a lot of eye tracking in both of those studies I’ve mentioned. Eye tracking is a big part of our assessments. So with the very youngest babies, for example at nine months it’s really just as simple as which parts of an image do those babies spend most of their time looking at? The interpretation of that is that the things you look at the most are the things you’re most interested in. The things you’re devoted most of your resources to understanding and we see that infants on the whole will prioritise social information.

So faces and people within images and they’ll spend most of their time looking at the people, but in our preterm babies we have found that strength of preference for social information may be a little bit weaker. They still might be looking at people particularly, but just not to quite the same degree as infants who were born at term. One possible reason for that might be if pre-term babies have a slightly what we’d call a hyper-vigilant attention profile perhaps as a result of early life stress.

They might feel the need to scan more of the image in this case or more of the environment in order to stay alert to possible threats and that’s something that could occur as a result of early life disruption to their stress response system. We do try and go beyond that because obviously eye tracking is right great. It’s very informative and you don’t need to be able to read or follow instructions. So that’s great for work with babies, but it’s also it’s quite a kind of rarefied assessment process. It doesn’t necessarily bear a lot of close relationship to what happens in everyday lives. So where you’re interacting with the world in much more than just what you look at.

So we also do a lot of video coding methods. So we will do parent-child play assessments, for example, where parents come in with their children and they might play for ten minutes with a kind of set of toys that we’ve given them and we video that and then we apply objective or as objective as we can coding processes to that. So that’s a nice way I think of capturing something a little bit more interactive and they look a bit richer because of course social interactions happen between people.

It’s not just about looking at pictures or even looking at videos and we wanted to make sure that that’s part of how we chart social development in our studies.

Interviewer: Your research also looks at technology for learning, such as therapeutic and educational iPad app development, use of augmentative and alternative communication systems. What findings can you share with us?

Professor Sue Fletcher-Watson: I’m really interested in technology as a way of delivering support and equality of opportunity or for kind of neurodivergent young people for all sorts of reasons. I think it’s an environment that we tailor in a way that we have a little bit more control than we do over some other learning methods. We can include images or audio prompts. You’re less reliant on written text than you might be with other sorts of materials. You can make something very motivating by making it more game like and of course it’s something that’s, you know, increasingly just embedded in our everyday lives.

There’s real opportunity there as well. In a very particular piece of recent research by a recent graduate from my group, Doctor Margaret Lori we looked at how technology influences play specifically. So there’s a lot of concern when we’re thinking about children with autism in particular that technology might be sort of isolating. It might shut autistic children off some interactions with other people.

That’s a sort of common feature of a lot of the screen time debates in the media and so on. So I wanted to look at this directly. So Maggie looks at groups of autistic kids playing together with or without digital toys. There was a robot caterpillar. I mean, the best part of this project was using the toys. It was so much fun. We picked a robot caterpillar as you do, some iPad based games as well, and what Maggie found was that technology certainly doesn’t cause social isolation and actually there’s a really rich and nuanced relationship between different kinds of technologies and how they influence how children play with each other and it also has to do with how many of each technology you have.

Obviously if everyone has an iPad each you have a very different dynamic than if people are sharing technologies, but also what the technology does. So the robot caterpillar moved around the room that influenced where the children were physically in the space and therefore how they were interacting with each other in a very different way to how the iPad operated.

You also get a lot of turn-taking with technologies. You get quite a lot of copying even when everyone has their own technology because there’s a sort of sense of oh, what’s he doing over there? I wonder if I could copy that and do that with my iPad too. There’s a really complex relationship between the technology, the numbers of technologies that there are that children, their competence with the technology whether they need to ask for help. The lesson from this is really to not view technology as a sort of single entity which we often do.

Especially when we talk about things like screen-time and instead to recognise that different technologies have different purposes and present different opportunities for young people.

Interviewer: Sue, another component of your research focuses on communication and interaction styles. Again it would be great to hear about some of this work.

Professor Sue Fletcher-Watson: Yeah. We’ve been doing some work on communication and interaction with autistic adults in particular and this has been led by my colleague Doctor Catherine Crompton. She used this really fascinating methodology called diffusion chains and it’s really about how people pass information down through a chain of people but in pairs. So it’s a bit like the game Telephone. In one of the versions of this method we would tell a story to the first person in the chain. So it was a story that we had made up. We knew they’d never heard it before and then they would have to tell that same story to the next person in the chain and so on and so forth down this chain of eight people.

So obviously the story degrades as it goes down the chain. People forget details or they get muddled and so on. So we scored how many details from the original story they managed to remember, but the important variation was who was in the chain. So we had chains where everyone was autistic. Chains where everyone in the chain was neuro-typical and then we had chains where there were alternating autistic and non-autistic people and what we were really interested in is information transfer in that kind of environment dictated by whether someone is autistic or not or whether the interaction they’re having is matched or not.

What we found was that information degraded much more rapidly in the mixed chain where information had to be passed from a non-autistic person to an autistic person to a non-autistic person to an autistic person and so on. So at each point of transfer the two people who were sharing the information have perhaps different expectations, different life experiences based on their diagnostic status in relation to autism.

So the information degrades very fast, and we also found in those chains that people reported less rapport. So they were enjoying those interactions a bit less and felt them to be less easy and comfortable and a bit more awkward. Whereas in the chain of people where everyone is autistic the information stays pretty good through the whole chain. It always degrades but not especially fast and the rapport was really high and that was almost exactly the same as the neuro-typical chain. Thinking about this in terms of how we define autism clinically, we define autism in terms of things like social impairment, communication impairment and that should suggest that if you have multiple autistic people interacting and communicating those interactions and that communication should be doubly impaired and instead what we find is that because both people we assume are approaching that on the same, with the same sort of norms and expectations and background experiences actually that communication if great.

So it’s really exciting work and quite radical I think and something that we’re now trying to build on in a sort of what are the implications of that for clinical practice and for educational practice as well.

Interviewer: I wanted to ask you, I mean, how do you go about translating research of this kind into outputs that are accessible and useful for practitioners and service users.

Professor Sue Fletcher-Watson: It’s hard to do. There’s a couple of ways I think that we try and do this. So one is that the way that our Research Centre is funded and resourced means that we have some dedicated expertise in the form of our Communications Manager, Ali Irving and our Centre Administrator, Sue Davidson. We have sort of dedicated capacity for translation, implementation, putting things out into the world, digitally hosting events. We host a public lecture every year. For example, the Salveson Lecture.

I think that’s a big thing because a lot of the time researchers are trying to do this sort of translational work essentially right at the end of the project when the funding has run out. They are desperately applying for the next grant or the next job or the next fellowship. So it’s really easy for this to slip through the cracks. It also takes a particular skill-set that not every researcher has or has been trained to develop. I think the other factor is about working in partnership with practitioners and with the broader community from the start and our Research Centre was founded as a partnership with a charity that provides direct help and support to families and to practitioners.

So that allows us to embed our research questions in the context that matters to practitioners and to the broader community. So if you’re asking the right question in the first place and you’re setting your methods into a setting it’s so much easier to implement and translate at the end because it was set up with that in mind from the very earliest principles.

Interviewer: Has research from Salveson helped develop or influence national or local Child and Adolescent Mental Health policy.

Professor Sue Fletcher-Watson: It’s so hard to do, but I think we have got a couple of examples that are starting to sort of shape how things are done. So one is the helping hand app that we created and launched earlier this year. That was led by my colleague Doctor Louise Marryat.

That was a co-created app that was built with parents of autistic children, including autistic parents and practitioners and also a commercial partner who helped us with developing the app itself. So the purpose of that app is to support families through their experience of the autism diagnostic pathway because we know that it’s a pretty long journey. It takes more than a year for most families in Scotland and sometimes a very long time to go from, sort of, first concerns being raised or first observation of differences up to the point of having a clinical diagnosis and it’s quite mysterious as well, you know, for families.

I think it’s easy to feel that they’re being sort of sent from pillar to post. We created this app to try and make that a bit more transparent to help families understand who are the different types of practitioners they would be meeting. Speech and language therapists, psychiatry or psychology colleagues, paediatricians perhaps.

What were the different types of questions they might be asked at different stages? Why it might take a long time and what they could expect as an end result and it’s also an opportunity to signpost support that families can access right away, even while they don’t yet have a diagnosis. That’s been really great and that’s now relatively well integrated into NHS Lothian, which is the National Health Service Board around Edinburgh where we are based.

In order to expand it to be nationally available we’d have to think about integration with the clinical pathways in other health regions which are a little bit variable. That’s one of the things that makes it sort of difficult to have that impact, but we’re really proud of the app and we really think as well it could be a useful model for other diagnostic pathways as well. Another one we’ve been working on, so built on the communication and interaction work that I mentioned earlier that was using a diffusion chain method, you know, the storytelling class one of the things that we’ve extrapolated from that is that peer support could be a more important part of service provision than we perhaps previously appreciated for autistic people.

So we’ve been working on developing what post diagnostic peer support model would look like for adults diagnosed with autism. We know already there are increased rates of diagnosis for autistic adults, but people who receive a diagnosis in adulthood just tend to have very little post diagnostic support. There just isn’t really a concrete pathway in most areas.

So we want to look at whether we could create peer support models that would be integrated into Clinical Services. Perhaps adopting a model similar to what’s already used in Addiction Services where people might be paired with someone who’s been managing their addiction for a long time and can provide that sort of personal guidance and just really that kind of emotional connection based on a shared experience. We have an indication of what good peer support practice would look like and then the next step is to implement that and evaluate its efficacy.

Interviewer: Sue you founded the DART Group. What is DART?

Professor Sue Fletcher-Watson: So DART stands for Development Autism Research Technology. The name of it just came from me and my husband making a list of all the keywords that we thought described the work that I was doing and then seeing which of them made a nice acronym. I think the motivation behind it though was wanting to have some sort of public facing place to collect together the work that I was doing with various different collaborators, PhD students, postdocs who’d come to work with me and so on, because as probably been obvious throughout this conversation making a difference and making an impact on the world is a really important part of the work that I do.

So we wanted a sort of public-facing place to share all that information. The DART website dart.ed.ac.uk has a library of resources that we’ve created from our work. We post recordings of talks on there. We try and produce accessible summaries of our work often as infographics. So quite a lot of nice images to represent what we found trying to avoid a long reams of text in PDS. You know, trying to bring out the key take-home messages for people in a way that’s very accessible.

We’re also trying to make the research process a bit more transparent to people so that they can understand how this question was identified in the first place. How the study was designed and delivered. What was the involvement of, for example, autistic people in the study and they can use that to interpret how relevant they feel the research is for them and their degree of trust in what we’re doing I suppose.

Interviewer: You write the DART blog for the website which provides insights into research and helps expose the truth behind the headlines. Why is this so critical?

Professor Sue Fletcher-Watson: It’s all about science communication isn’t it? The current covid-19 pandemic has really highlighted how important it is for people to have trust in our scientific establishment. To feel that they understand the language of risk, for example. That they can tell the difference between a high quality and a poor quality piece of evidence.

So that’s been starkly revealed in the sort of extreme situation that we’re in right now, but I think it’s the case all the time, you know, that we really need to have a general population who feel confident with some of the language of science and research and can make good decisions when they’re called upon to do so. So I just think the more we can talk, not just about what we discover in our research, but how we do it. What it means and the more people can read about that the more they can become really informed consumers of research and feel that they are allowed to challenge researchers but also that they can feel that they can trust scientific research and they can, you know, make decisions based on that information confidently.

Interviewer: As we mentioned we’re talking during the covid-19 pandemic. What impact do you feel the pandemic has had and will have on vulnerable children and their families?

Professor Sue Fletcher-Watson: It’s hard to say I think because it would be quite tempting to suggest that the pandemic is just going to have negative impact on people and of course there’s concern around young people’s mental health, anxiety and depression and so on. There’s been a little bit of a sort of scrabble to produce new research in response to the pandemic and I completely understand and respect that because I think it’s really important that we have information to make evidence-based decisions, but certainly in this case we really need to work with data where we have baseline data from pre-pandemic as a reference point in order to understand what’s happening.

As an example if you take, you know, a whole schools’ worth of children and you look at their anxiety levels right now during lockdown you might see those anxiety levels look a bit high. The really important question for me is has everyone got a little bit more anxious during lockdown in which case sure that seems like quite a reasonable response to a stressful situation and I don’t want to minimise it.

That’s sort of okay as far as it goes. The more concerning thing would be if those children who were anxious before are getting disproportionately more anxious while other kids are feeling kind of fine, you know. So if you’re widening the gap between the young people who are doing okay and the young people who are facing some challenges that’s much more of a concern I think, and we can really only know that if we have data from the world pre-pandemic.

I think the other factor is to remember that for lots of people the main source of difficulty and stress in their lives comes in school. It’s about peer relations, the classroom environment, exam stress and anxiety and so on. I think there are some people who felt that ironically the freedoms of the pandemic response have been quite liberating. That’s more optimistic but then makes one worry about the transition back to school. So our charity partners.

So our Charity Partners really at the Salveson Mindroom Centre have created this amazing back to school toolkit with resources for teachers and parents and young people both for primary and secondary school and we had, you know, some involvement in the kind of research input into that, and I think that’s sort of resource is really important because the transition out of school in into lockdown was very abrupt and stressful, but the transition back into school is also going to be tough for lots of people. So the back to school toolkit is available at mindroom.org.

Interviewer: Sue do you plan to build any research around the impact of Covid yourself?

Professor Sue Fletcher-Watson: No. So I’m not doing any direct research mostly because I don’t have studies underway that I think would give me the appropriate kind of baseline information and contextual information. What we are doing is we’ve made a podcast called Psychological mostly because we record it over the phone. So it’s really a phone call between me and another psychologist.

The motivation behind that I think was to think about two things really. One is that during the pandemic there’s obviously been a real interest and focus on infant and child and adolescent development and well-being and learning. You know, lots of parents are having to struggle with home learning which has given them a really radically different experience of their children’s education. Teachers have had to adapt to digital delivery.

People are concerned about mental health and well-being and so on. So it’s a really big part of the current debate and we wanted to make sure that there was information that was accessible to people. So the other group we’re trying to reach is practitioners who have been furloughed who are perhaps cut off from their usual professional networks and sort of development opportunities. So we’re releasing these bite-sized episodes that are developmental psychologist talking about specific pieces of research that they’ve done.

Not necessarily Covid related but just trying to share up-to-date information in an accessible way that people can engage with, you know, wherever they happen to be and whatever context they’re in.

Interviewer: And for people to access that.

Professor Sue Fletcher-Watson: So that’s on our website which is at ed.ac.uk/salveson-research.

Interviewer: Sue what else is in the pipeline for you that you would like to mention?

Professor Sue Fletcher-Watson: There’s one project that’s underway that I’m glad you asked me that question because I was thinking it would be sad to not mention it. So this is a project called learning about neuro-diversity in schools. So I said right at the beginning that we’re starting to use more of a kind of neuro-diversity based framework for thinking about child development and outcomes.

Neuro-diversity really emphasises the idea that differences between people are inevitable, natural and therefore something that we should be embracing and accepting and perhaps focusing a bit less on changing or ameliorating and that doesn’t mean that we don’t recognise that lots of people need some extra help or a bit more patience or some kind of adaptations to enable them to thrive, but I think it means that getting hold of those supports should perhaps be a bit less gaited by specific diagnostic categories, for example, and a bit more based on individuals sort of advocating for themselves and their needs confidently and saying this is what I need to be able to get the most from my learning or to get the most from my employment.

You know to be the best employee I can. The way we’re approaching kind of neuro-diversity in this particular project is thinking about how we can convey just the basic principles and ideas of neuro-diversity to children in primary schools. We are co-designing a resource pack with neuro-divergent education practitioners.

We’ve got this fantastic diverse team who are helping us design the resource which will then, kind of, check with a slightly broader group and then evaluate in schools. You know, we really want to base it on other fantastic resource packs that are already available to teachers for talking about big issues. So, you know resources for talking about climate change or for talking about the importance of recycling and we want neuro-diversity to be part of the classroom conversation really for all classes and for all children and not to be something that you only talk about in relation to one child or one specific situation, because neuro-diversity is in all of humanity and in all settings and we think everyone needs to be confident understanding what we mean by neuro-diversity and then can use that information to help them understand what might be the most useful ways that they can respond if someone says I could do with a little bit of help with this thing or that thing.

We hope the resource will be available about 12 to 18 months from now and it’s all going to be free to download.

Interviewer: Finally what is your takeaway message for those listening to our conversation?

Professor Sue Fletcher-Watson: To think about participatory working and co-production. To think about building partnerships with organisations. If you’re in a research group working with the third sector or working with professional bodies like, you know, General Teaching Council for example or in Scotland with Education Scotland who are fantastic partners, but also working with individuals who have personal lived experience of the things that you’re interested in researching.

So making sure that those viewpoints are integrated into the work that you do from the very beginning and at every stage so that your research can be more easily implemented and understood by people. So you can be completely confident that the work you’re doing really matters. That it’s really going to make a difference in the world. Don’t be afraid of reaching out to people and also I suppose it’s okay to start small. You know, those relationships take a while to build up. We’re all learning and developing our practice all the time. So start somewhere, Make a commitment to grow that practice and I think you’ll reap some really amazing rewards in due course.

Interviewer: Sue, thank you so much. For more details on Sue Fletcher Watson please visit the ACAMH website at www.acamh.org and Twitter at ACAMH. ACAMH is spelt ACAMH and don’t forget to follow us on iTunes or your preferred streaming platform and let us know if you enjoyed the podcast with a rating or review and do please share with friends and colleagues.

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