Transcript: Collaboration and co-production in psychological research

00:00:02 Female voiceover 

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00:00:11 Dr Laura Crane 

Hi everyone and welcome to the podcast Psyched about Education. This series celebrates the academic excellence of the work carried out in the Department of Psychology and Human Development and the impact that this work has on policy and practice. In other words, how can psychology make a difference? 

I'm Laura Crane and I work at UCL’s Centre for Research in Autism and Education, or CRAE. And with me I have my wonderful colleague Georgia Pavlopoulou, who runs UCL’s Group for Research in Relationships and NeuroDiversity, or GRRAND. In this podcast, we're going to be chatting about some of the work of our respective groups in relation to autism research, and we'll be reflecting on how the work can hopefully make a really meaningful difference to autistic people here in the UK, but also beyond. 

So, Georgia, if we start today by introducing our respective research groups and the kind of work we do; I'll start with CRAE. As you know, we're an autism research center that comprises both autistic and non-autistic staff and students. Our research is very wide ranging, but always aims to align with the priorities of autistic people and aims to have a really positive impact on their lives. We think that the best way to achieve these aims is to work in partnership with the autistic community, but also the broader autism community – family members of autistic people and professionals who work with autistic people – to involve these groups in all of the different stages of the research process. So, participation and inclusion and involvement are all really important values across our centre. Then we also aim to do lots of events and other outreach work to make sure that the work we do, and the work that other people do, really reaches those outside of academia. We also, for example, run a postgraduate course in special and inclusive education that focuses on autism, making sure that our work reaches practitioners in the field as well. 

So, that's a bit about CRAE and what we do. But Georgia, I know your work goes a bit beyond autism and focuses on neurodiversity, so maybe you can start by saying a bit about what neurodiversity is and telling us a bit about the work of GRRAND. 

00:02:42 Dr Georgia Pavlopoulou 

Thank you so much, Laura, always exciting to hear about CRAE colleagues. 

The Group for Research in Relationships and NeuroDiversity, GRRAND, is a diverse bunch of researchers, scholars and art activists, advocates, service users, as well as health and educational consultants, all interested in human development and neurodiversity. By the term neurodiversity we mean people with a diagnosis of autism, ADHD, dyspraxia, and so on. The term neurodiversity refers to the variation in the human brain regarding social ability, learning, attention, mood and other functions. Traditionally, research and projects are made about neurodivergent people, not with them, and we would like to change that. 

The other aspect that we pay attention to at GRRAND is relationships. Relationships are one of the most important aspects of our lives. Yet we can often forget just how crucial our connections with other people are for our physical and mental health and wellbeing. Neurodivergent people face unique challenges and opportunities to connect socially to family, friends or their community and form relationships. We know that those who enjoy these connections are happier, physically healthier and live longer, with fewer mental health problems, than the people who are less connected, whose ability to feel they belong is compromised. 

So, we aim to deliver co-produced research and knowledge exchange with neurodivergent people in their preferred methodologies on their preferred priorities. And we also organize train and engage days as well as bespoke autism mental health short courses to improve the access and involvement of autistic people and their families and other neurodivergent people in mental health services, by erasing hopefully the damaging stereotypes that exist about disabled neurodivergent people and celebrating their diverse strengths and unique perspectives. 

00:04:40 Dr Laura Crane 

Thanks for that, Georgia. I think that one of the really nice things about both of us being here today is that there is so much that connects our research groups – say, things like having a big focus on making sure that the work we do really matters to the autistic community and creating research partnerships, and also a kind of really strong commitment to engagement more broadly. Actually, one of my favorite examples of this is your impact work about promoting ideas about a good night's sleep. And I know that this came directly from autistic adolescents. I wonder, can you give us a little overview of that? 

00:05:17 Dr Georgia Pavlopoulou 

This collaborative work was supported by the John and Lorna Wing Foundation and UCL Institute of Education Impact Fellowship Scheme, and it shares interesting ideas for improving sleep routines that come directly from autistic teenagers, employing an experience-sensitive framework. This study employed a personalized approach to collecting, categorizing, coding and analyzing qualitative data, which allowed me to work closely with autistic adolescents together across different stages of data collection, data analysis, and dissemination of the data. The momentum that was created at the individual level during each interview with each teenager continued at a community level and involved researchers, local community professionals, health workers, educational mental health workers at schools, people from the NHS and the third sector who were interested in the sleep problems of the autistic population. 

The community events were co-designed and co-organized with the autistic adolescents I worked with. The delegates were invited to develop together action items based on the results of the study and conversations that took place on that day. Once the project was finished, the autistic teenagers in Kent, along with emotional well-being practitioners at NHS in Kent, established the special interest sleep group in order to respond to action items and to spread the message that it is important to work out what works for each autistic young person, even if that is different from the generalized sleep rules. We had a number of launch events and train and engage activities that promote autistic-led animated films that we co-created with autistic teenagers, along with other digital material. We are hoping that this is going to be useful for school mental health leads, for educational mental health practitioners, for clinical mental health NHS staff and parents. Hopefully they will benefit from that co-produced digital material.

One of my favorite examples of CRAE’s work is the Pan-London Autism School Network, Laura, which I know that you are leading. One of the key aims, to my understanding, is that it's bridging research and practice. Can you please give us an overview of this group? 

00:07:38 Dr Laura Crane 

The Pan-London Autism Schools Network is a group of autism special schools whose pupils often get excluded from autism research, and that's because their needs are considered to be a bit too complex for traditional research studies. I think that's particularly the case for psychological research studies that often use standardized assessments that rely very heavily on verbal language, for example. I think this is a really massive issue, because the schools really need really good quality evidence to underpin their practice, but not many people want to do research with their pupils to develop that. So, in keeping with our ethos of inclusion and participation and co-production, we bring together a group of autism researchers with staff from each of the schools. And a bit like your work, we jointly set priorities for research, and, as you said, we try to facilitate more research so that it really makes a difference to educational practice. 

Just one example of a project on this is one that I did with Prior’s Court school, who are a residential special school and they wanted to do some work around eliciting the voices of their pupils. We worked together to review existing literature on the topic and think about the kinds of approaches that might be suitable for their particular demographic of pupils. Then we co-developed a method which we call ‘talking walls’ and we trialled and implemented it in school and we evaluated how well it worked. That was through some interviews with staff and also some observation work with the young people at the school, too. 

What was really nice about this project – firstly, the talking walls did seem to be a success. There were some areas that we could develop further, but they did seem to be a really promising tool for use with this group. But we also made sure that all of our resources from the project, things like the social stories for the young people to help them learn more about how the talking was used and all of the training materials for the staff at the school, they were made freely available to everyone after the project, so other schools who were keen on this approach could implement it if they wanted to. 

So, it's really about engaging more people in research than you would do from just traditional outputs like just writing an academic journal article. This actually is something that I know you do really, really well, Georgia, and, in fact, one of the things that I really love about your work is the range of creative methods that you use to involve and engage people in research, so do you want to give us an example of one of those projects?

00:10:31 Dr Georgia Pavlopoulou 

Thank you, how fascinating to hear about the work you do with the schools. I'm very, very interested in creative methods and with our team we do use lots of visual methodologies, audio-visual methodologies. Because, as we say, there is something about it making the familiar, what we think we know, unfamiliar, and making us more curious to find out more about neurodivergent people and how we can emancipate them. I co-established, a few months ago with the members of GRRAND and the wider is London community, a UCL public art project which explored the relationships and well-being of autistic East Londoners during and before the pandemic. Flow Unlocked, as we call the project, is a creative autistic-led collaborative project which highlights the importance of relationships to autistic people. 

These reflections were revealed to us, to the researchers, through poetry, photography, drawing, and films. Our participants became co-creators, became consultants, and they decided the rules of participation in that project as well as the objectives. Our objectives were also co-established with our Autistic Consultants Group and included supporting autistic East Londoners to co-create artistic reflections of their relationships during the lockdown. Autistic relationships, as we found out through this project, are rich, nuanced and creative and have proved to be a wonderful thing for dynamic creative collaboration aiming to raise awareness of the social determinants of autistic mental health. There was so much that came out from the creative data around the intense sensitivity with which autistic people relate to the world, and that is something that is rarely recognized, let alone celebrated.

This is why our Flow Unlocked group has been reflecting on the breadth of personal and sensory relationships that have sustained autistic people before and during the pandemic as well as those that have been made during this project. GRRAND was also interested in capturing and recording the many benefits of co-creation, of co-creating creative knowledge exchanges between autistic and non-autistic researchers and artists. Through our work in their community, we often address the questions of authenticity and representation, which are pertinent to co-created creative research and public engagement. The co-produced artwork highlights the importance of an experience-sensitive approach honouring the ways that autistic people are affected by the sense of empathy for others and for the world – a world that we know sometimes does not feel safe or just for autistic people.

Laura, coming back to you, you also have a community based participatory research approach and you have completed a project with academic researchers and young autistic adults; you all collaborated to examine mental health problems and support sought by autistic young people. Could you please tell us a bit more about this project? 

00:13:46 Dr Laura Crane 

Thanks Georgia, it's one of my favorite projects, too, so thank you for the opportunity to discuss it. 

So, yes, this project was a collaboration with autistic young people from a charity that we often work with at CRAE. And essentially, the young people approached us because they wanted to do a big project around supporting autistic young people’s mental health, and they wanted that project to be underpinned by research. The problem was that none of them had ever done any research before. So they came to us at CRAE and asked if we could support them. 

There was myself and my colleague, Liz Pelicano, and we worked with three autistic collaborators and Fern Adams, Jack Welch, and Georgia Harper. What we aimed to do was to develop some answerable research questions around autistic young people’s mental health and to co-design and co-conduct the research. We worked together to analyze the data we collected and make sense of it. What was nice about this project is that, again, it's not just a paper reported in academic journal about what we did and what we found. We did do that, but we also had things like an accessible report, we had an animation, we hosted an event, we had a blog, we had an interview – so just lots of different ways to get the message out into the community. 

So, like your really brilliant interdisciplinary work, I think the core thing underpinning it is just about really meaningfully including people and making sure that the messages from the research are shared in lots of different ways to make sure it really reaches those who stand to benefit from it.

We're coming to the end of our discussion now. But one thing that connects all the podcasts in this series is that we're focusing on how the work we do in psychology makes a contribution to policy or practice. And I think this is a really interesting question, because in many ways I think autistic people have been quite disenfranchised by traditional psychological research. So, this is research that might frame autistic people as being deficient or impaired in some ways, which I think has led to a real pathologization of autism and an associated stigmatization of autistic people. But I guess what our work shows is that perhaps this isn't the only way. What do you think about that? 

00:16:13 Dr Georgia Pavlopoulou 

Absolutely, redefining the autistic narrative from the perspective of the lived experience of autistic people is vital if we aim to build an inclusive community. So when projects like the ones we have described involve autistic people and genuine participation, then we can create safe spaces where creativity, friendship, authenticity can flow. Autistic co-led training and research in mental health is one of the best ways to reduce negative stereotypes held by professionals, by policymakers, about autistic people and neurodivergent people more broadly, and improve trust, smoothing the way for practice to be more sensitive to the experiences of neurodivergent people – and in that sense, hopefully more impactful, improving their lives, helping them to live healthier and happier lives. This way, we can move from fixing autistic people or other neurodivergent people, towards mutuality, towards sharing power and decision making in clinical and educational practice. 

00:17:15 Dr Laura Crane 

Thank you, Georgia. I think that's a really important and powerful message, and the perfect way to end our podcast today. 

00:17:24 Dr Georgia Pavlopoulou 

You've been listening to Psyched about Education. For further details or other podcasts from the Department of Psychology and Human Development, please see the links at the end of this podcast. 

00:17:44 Female voiceover 

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