‘Transforming the lives of young people with autism with inclusive research’ In Conversation Professor Liz Pellicano

In this podcast we talk to Developmental Cognitive Scientist Professor Liz Pellicano, Professor in the Macquarie School of Education at Macquarie University, Sydney, Australia.

Liz raises concerns that too much research done in the name of society fails to be of direct use to society. She talks about her commitment to transforming autism science to more accurately reflect autistic people’s day to day lives, and how this in turn might transform the lives of young people with autism. Liz looks at the opportunities is there are for autistic people to play an active role in research, and why this is it so important that autistic people are partners are involved in the research process.

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I trained as a developmental and educational psychologist in Perth, Australia, where I also completed my PhD on the cognitive profile of autistic children, before becoming a Junior Research Fellow in Psychiatry at the University of Oxford, UK, and Lecturer in Experimental Psychology at the University of Bristol, UK. In 2009, I was appointed Senior Lecturer at the Centre for Research in Autism and Education (CRAE) at UCL Institute of Education, University College London, UK. I became Director of CRAE in 2013 and Professor of Autism Education in 2015. In 2017, I returned to Australia to take up the appointment of Professor in the Department of Educational Studies at Macquarie University.

Much of my research is focused on understanding the distinctive opportunities and challenges faced by autistic children, young people and adults, and tracing their impact on everyday life – at home, at school and out-and-about in the community. I have also been consistently dedicated both to ensuring that the outcomes of my research are as influential as possible in education policy-making and to enhancing public understanding of autism, its challenges and opportunities.
Biog via Macquarie University

Transcript

Interviewer: Hello, and welcome to the In-Conversation Podcast Series for the Association for Child and Adolescent Mental Health, or ACAMH for sort. I’m Jo Carlowe, a freelance journalist with a specialism in psychology. Today, I’m interviewing Developmental Cognitive Scientist Professor Liz Pellicano, Professor in the Macquarie School of Education at Macquarie University, Sydney, Australia. This is a developmental and educational psychologist whose primary research focuses on autism. 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 do share with friends and colleagues. Liz, thank you for joining me. Can you start by introducing yourself?

Professor Liz Pellicano: Yeah, thanks so much, Jo. As you mentioned, I’m a Developmental and Educational Psychologist and Professor at Macquarie University in Sydney. I work with autistic children, young people and adults and their families. I grew up in Perth, Western Australia, on a dairy farm and then moved to the UK just after my PhD to Oxford in psychiatry and was there in the UK, at least, for around 14 years in various places in Bristol and then in London before moving back to Australia. This time to Sydney a few years ago.

Interviewer: And how did you come to be interested in cognitive science and autism?

Professor Liz Pellicano: Like many people, my first experience of autism began in textbooks and journals, reading about the work of researchers and clinicians like Sir Michael Rutter, Francesca Happe Uta Frith, describing the puzzle or enigma of autism. As a young researcher, I was absolutely mesmerised by research attempts to try and understand autism. I also knew, though, that, you know, autism was much more than just a textbook. So before I started my PhD, I also began working with a little boy who had a diagnosis of autism and his family, and at that time the boy had very little language.

So he could say one or two words, but he didn’t really put those words together to make phrases. So my job was to work with him one afternoon a week on some language activity to try and improve his speech and communication. We also did some full activities to try and improve his motor skills, and I was just totally inspired by him and his family. They taught me a lot about, you know, support, about resilience, about empathy and about the reality of autism.

Interviewer: And in a commentary published in the Journal of Child Psychology and Psychiatry, the JCPP, you quote the phenomenon whereby too much research done in the name of society fails to be of direct use to society. Can you explain how that statement applies to autism science?

Professor Liz Pellicano: So the quote I mentioned comes from an editorial from the journal Nature, which highlighted the importance of co-production in research. So where researchers work together with community members to ensure that the research that gets done is relevant to people’s lives, is tailored to their needs, and is consistent with their values. Unfortunately, most of the research that gets done, as the Nature editorial described, doesn’t meet these goals, and that’s including in the field of autism science, and this came to light really on a project back in 2011, 2012, when I had the privilege of working with Professor Tony Charman at University College London, which set out to really look at this very issue.

So we looked at how much had been spent on autism research, in terms of how much had been funded in the UK in a five year period. So between 2007 and 2011 and importantly what it had been spent on and we consulted with more than 1,700 autistic people, their families, professionals and researchers to understand what they thought of current autism research in the UK and whether they thought the funds towards autism research should be prioritised in the future.

And while they were autistic people and their families were really impressed by the quality of British autism research. They weren’t really convinced that research had made a real difference to their lives and one key reason for this, as they described, was because it wasn’t really focusing on real life issues, and when we done the analysis around what had actually been funded during that five year period it showed that the majority of UK research focused very heavily on what we call basic science.

So neurocognitive systems, genetics, other risk factors related to autism, rather than on research targeting the more immediate circumstances in which autistic people find themselves. So on supports, on services, interventions and education. In fact, our report at that time showed that only 5%of research funding between 2007 and 2011 went towards identifying effective services for autistic people and their families. So the research that was being done in the name of autistic people and families, in the name of society wasn’t making a difference to the people who it was supposed to serve.

Interviewer: My understanding is that is still the case. Most autism research still focuses on the underlying genetic causes and biology of autism. So where, in your view, should it be focused?

Professor Liz Pellicano: In our study autistic people and parents of autistic children valued the need for basic science to understand better the underlying causes of autism, and that’s because we simply don’t know enough about autism. So it’s not that they wanted to stop research on basic science, genetics, biology, all those kind of things, but they wanted a more balanced profile. So valuing research with a direct impact on the daily lives of autistic people, as well as research in core areas of basic science.

More recently, my postdoctoral fellow Jacton Houghting and I have done some work looking at the amount of money spent on autism research in Australia over a ten year period, and as you suggested there are still a large bias for basic autism science, but the research profile has actually become more balanced over that ten year period in the way that community members prioritise, and that’s because predominantly due to a large co-operative research centre called the Autism CLC, which was established by the Australian government I think in 2013, and whose stated mission was to support collaborations between industry, between researchers and the autistic and autism communities.

So in doing so in the past five years in particular, we’ve seen a shift towards a pattern of funding that is more balanced between basic science and more applied research and is therefore more in line with community priorities, research on services and supports in education across the lifespan.

Interviewer: Do you think that’s likely to be the case in the UK too?

Professor Liz Pellicano: So recently we also worked with James Cusack from the UK charity Autistica and also colleagues from the National Institutes of Health in the US to look at the patterns of funding across various countries in 2016 alone. So just one year and as we had found, particularly for the UK back in 2007 to 2011, basically the patterns hadn’t changed at all. So there was a huge bias towards underlying biology and causes of autism.

I think over, if I remember rightly, over 70% of what was funded for that particular year went towards basic science, and the same patterns were found in the US and also in Canada. Australia seemed to do a little bit better, I think, because there was this top down initiative to try and boost research in kind of more applied areas.

Interviewer: Liz, you’re committed to transforming autism science to more accurately reflect autistic people’s day to day lives. Can you tell me a bit more about how you’re going about this?

Professor Liz Pellicano: So basic autism science, particularly in the fields of psychology or cognitive science, cognitive neuroscience has focused predominantly on studying autism within the lab. So in carefully controlled, really simplified settings where you can manipulate variables and you discover causeal relationships between one factor and another, and this established experimental method is, you know, our bread and butter. Science is bread and butter, but it’s also autism scientists’ bread and butter, and I think there are very good reasons for this approach.

It’s been enormously fruitful to the study of human cognition, but I think there are obvious problems, too. So the almost exclusive reliance on lab based work has resulted in paradigms that are often simple and artificial and therefore limit the applicability of findings to the more complex situations that people experience in everyday life. That is, there’s been a failure of lab based work to map on to real life settings.

So the findings lack what we might call external validity. They lack or they fail a test of generalisability. I’ll give you an example from my work. So lab based work is often argued that autistic people show a strong propensity to being better able to find objects than non-autistic people. So they have enhanced visual search abilities, and this skill has been used to support a major theoretical account of autism, Simon Baron Cohen’s Systemising Theory, and quite a few years ago now, when I was working at the University of Bristol, some colleagues and I tested autistic children’s ability to search in a physical, large scale space and we called this a foraging task.

So where children literally had to search, to get on the floor, there were lights embedded into the floor. There were green lights, and they had to go around pressing the green lights until one of them turned red. So that was the target light. So it’s still a search task, but it was in a large scale space. So it was not a computer or a desk, and we tried to essentially make it as close to the computer based visual search task as we could so that we still had that experimental control while being closer to more true to life contexts.

What was really striking from our findings was that well-established reports of superior visual search in lab based settings did not translate to autistic children search in a more real life setting. So autistic children’s ability to search in that large scale space was significantly worse than that of typical children and exactly the opposite of what the conventional lab based work had shown. So in some way, the old kind of lab based work can have almost misrepresented what was actually going on in children’s and people’s everyday lives.

And I’m currently funded by an Australian Research Council future fellowship to develop a programme of research to see how we might be able to turn this around. To see how we might be able to get more scientific research that maps onto the realities of people’s everyday lives.

Interviewer: How much opportunity is there for autistic people to play active roles in research, and why is it so important that autistic people are partners in the research process?

Professor Liz Pellicano: If you’d asked me this question even five years ago, I think I would have said that such opportunities were really rare. In fact, autistic advocates and their allies have really long argued that conventional research practices provide too few opportunities for a really genuine engagement by autistic people, and that lack of engagement has contributed to an ongoing sense of disenfranchisement among the autistic community.

So in a focus group I ran for a London based study a while ago and we were talking about these issues, and one of the autistic adults said to me, whatever I say, is it really going to influence anyone? So feeling very disempowered and left out of the kind of decisions that get made about research. Thankfully, though, I think that’s changing. I think we’re gradually, very gradually seeing more and more autistic people involved in autism science, as autistic researchers themselves and also as autistic community members who are partners in the research process.

And it’s important because autistic people and their allies have actually told us that they want to be involved in autism research. So they want to have a say about the kind of autism science that gets done and importantly, how it gets done, and this community involvement is not unique to autism science. So participatory research or co-production kind of stems back to the 1950s and as an approach adopted in a huge number of fields. I can give you an example from some of our recent research.

We’ve done a study looking at the untold histories of late diagnosed autistic people. So these are adults who are older than 45 and who were diagnosed after the age of 35, which means basically that they grew up at a time when autism was virtually unknown to people, wasn’t in the DSM. Very few people knew about it, and we wanted to know what their lives were like as they were growing up, but also in adulthood before they came to know when they were autistic and also when they finally got that diagnosis, what that diagnosis meant to them.

And to do this, we took an oral history approach, basically getting people to tell their stories, their life histories, and also to situate them within a particular time and place in history, but critically we’ve also taken a participatory approach. So the team of researchers was made up of autistic and non-autistic researchers and we also had an advisory, autistic advisory group. They were all there from the outset of the project. So making decisions about the methods, the implementation and the analysis and the dissemination, everything and it’s been, I can’t tell you how amazing it’s been. It’s been phenomenal.

We had two autistic researchers who were later diagnosed themselves but were reasonably new to autism research. So they actually conducted all of the oral history interviews with our participants, just amazing. So Gabrielle and Joanne, our autistic researchers, had a lot of contact and engagement with participants, really guiding them through the process. Trying to accommodate any needs and preferences where possible. We also had an autistic senior researcher Win Lawson and together they made sure that our research process is really thorough.

Were really respectful and supportive of our participants, and in this way, I think we got, we really got better research. After people had done their oral history interview with Gabby and Joanne, Win Lawson and I did a follow up interview with the participants themselves, which asked them to reflect on the experiences of telling their life histories and on the research process. These people had really often very hard lives. So growing up knowing that they were different, feeling bad about that, feeling that there was something wrong with them.

And they repeatedly told us that their stories were made easier because they’d had an autistic researcher interviewing them. So they felt respected, they felt included. They talked about how there was no judgments. That they were talking to someone who just got them. Who just understood them, and one participant actually went so far as to say that they probably would have dropped out if it wasn’t run by people who weren’t autistic, but I think we wouldn’t have gotten such raw and really rich data without the involvement of our autistic partners.

So I think the impact of autistic involvement in research can be huge on the participants, on all of the research team, but also on the research itself.

Interviewer: It’s really interesting. It sounds like it ties in with what you described in the JCPP commentary as the double empathy problem, which refers to a lack of alignment between autistic and non-autistic people, and this perhaps explains some of the importance of having that partnership. I’m just wondering what the implications are for this, for research.

Professor Liz Pellicano: Yes. So the double empathy problem was first described by a wonderful autistic scholar. This is Damien Milton, and at its essence this problem highlights that empathy is essentially a two way street. Milton talks about on the one hand, we have autistic people who, according to the theories, have little or no theory of mind or empathy or social understanding or whatever we want to call it, and on the other hand we have neuro-typical people who have, again, purportedly kind of fully functioning theory of mind, empathy, social understanding.

What Milton describes is problematic is that the apparently instinctive empathy of neuro-typical people isn’t applied when it comes to autistic people. So in the end autistic and non-autistic people may have difficulty understanding and feeling for one another because of their really different outlooks and experiences with the world, and really interesting Milton has suggested that autistic people might even be more adept than neuro-typical people in reading the minds of those who are autistic because they’re better able to understand the different feelings, thoughts and assumptions of those with the condition.

So essentially they get it, which is kind of what our participants in our oral history study were suggesting. They talked about having someone that essentially understood them. That gave them a really safe space to be able to tell us about their experiences, and I think this has huge implications for research because it suggests that a fundamental problem in non-autistic researcher’s quest to really understand or get to grips with autism and stress is really the need for autistic involvement in that research.

Interviewer: When it comes to opportunities for autistic people to play an active role in research do those partnerships include young people or is it only applicable to adults?

Professor Liz Pellicano: Absolutely can include young people, although young people are only included very rarely. So we did a study a while back when I was in London looking at the views and experiences of children and young people with special educational needs, many of whom were autistic, who were living in residential special schools in England. So often very vulnerable children for a whole host of reasons, not least that they were living some for 52 weeks a year away from their parents and families, but many of these children and young people had additional intellectual disabilities as well as difficulties with spoken language, but our team set up a young researchers group which was comprised of young autistic people with moderate intellectual disabilities and deaf young people who advised us during the research process.

So we met a few times at the start of the project and then towards the end of the project, and we tried to elicit their views on the kinds of materials we were going to use with children and young people in a whole host of schools, and then we also gained their views on what they thought about the findings themselves, and to elicit their views we used a whole host of activities like Graffiti Wall, where children could write their thoughts down on a wall. Drawings. We did a Post-it note activity. All of this was supported by interpreters and learning support assistants. I don’t think we can quite say that any of the young people were fully involved in the research process, like our oral history study, but our activities meant that they had a say and importantly that we act on what they said and how they interacted with the materials and how they felt about how we interpret the findings.

So I think there are ways to ensure that young people are more fully involved than they are typically, which isn’t difficult because they’re so rarely involved in the first place, but I think it does take effort in the sense of time and trying to come up with activities that really does elicit their views and also makes them feel involved and lots of care and support. There was a lot of support around them to try to ensure that they could view their experiences in their own way.

Interviewer: What about parents and carers of autistic children and young people? Should they also play an active role in research?

Professor Liz Pellicano: Of course, in the past, parents and other carers have probably had too much say in comparison to autistic people themselves, and still there’s a tendency, I think, of researchers to ask parents their views instead of asking autistic people or even autistic young people themselves, but parents and carers obviously have a vital interest in our research, and it would be hugely self-defeating to prevent them from engaging.

Interviewer: Just one of the innovative ways of being developed to bridge that sharp divide that you’ve described between autism science and its relevance to people’s lives.

Professor Liz Pellicano: I think there’s so much inspiring work going on right now all over the world, despite Covid. I guess, exciting to me is the huge strides that are being made to support the careers of autistic scientists, researchers and advocates.

I think the more that the voice of autistic people is heard directly in the scientific process, the more likely that science is to reflect the reality of autistic people’s lives. Essentially, it’s about listening to and learning from autistic people and incorporating that in the scientific process.

Interviewer: If the barriers that you’ve talked about are overcome, how might autism science be transformed and how might this in turn transform the lives of young people with autism?

Professor Liz Pellicano: I think there are so many examples, but I think the key is this. If we have autism science that properly reflects autistic experience, then I think we’ll come to understand aspects of autism that have always escaped us before, and that will enable us to make huge strides in education, health care, employment support and a whole bunch of other services.

Interviewer: How do you ensure the outcomes of your research influence education, policy-making and also enhance public understanding of autism?

Professor Liz Pellicano: So when I was in London I spent a long time working with journalists and others who were extraordinarily helpful in explaining to the broader public just what autism is and why it’s so important to approach it in a new way. We met a wonderful documentary film with some autistic colleagues with Channel four television, which also showed here in Australia on our ABC and during Covid I’ve been continuously inspired by the ability of journalists, for example, like John Harris of The Guardian in the UK, to explain to people just what it’s been like for many autistic people during the lockdown’s.

So essentially, kind of, the reality of autism and I think we need more journalism like that here in Australia, and I’m really keen to help develop that.

Interviewer: Liz, what are you working on currently? Are there any particular research projects or recent findings that you can share with us?

Professor Liz Pellicano: Well, this year has been a rather challenging for obvious reasons, but we did manage to do a large scale qualitative study on autistic people and families experiences of life during Covid-19. So at the beginning of the first lock-down period, which was back in March this year, we were hearing on social media a range of experiences from autistic people and parents of autistic children, and essentially we wanted to do a study that really captured the diversity of those experiences. We wanted to know essentially what this moment was really like for autistic people and families. With a wonderful team of autistic and non-autistic researchers we interviewed 144 people, which included autistic adults, parents of autistic children, including autistic parents.

So there were autistic parents of autistic children and also young autistic people themselves, aged between 12 and 18 years. Essentially, we interviewed them about their everyday experiences of life during the pandemic. So within a six week period we’d done all those interviews. So we have more than 7000 minutes of interview recordings. It’s huge and the results are really revealing.

So on the positive side, many people reported being glad that the relentless pressures of ordinary life had been lifted during the early months of Covid-19, including young people. Many people described how the lock-down period really freed them from the often overwhelming demands and expectations of living in a neuro-typical world. Essentially a world that isn’t typically set up for them at all. So those are the kind of positive things, but on the negative side, many reported a decline in their and or their children’s overall sense of well-being or mental health.

I think perhaps what was most striking was that participants most missed those aspects of social life that the pandemic lock-down measures took away, and this was for our team was the most striking set of findings because I think it really flies in the face of many common stereotypes about autism. Yeah, they don’t want friends. They prefer a life of self-isolation. In the words of, I think one of our participants said something like, autistic people are ready for lock-down.

She said that sarcastically, and our study really showed that that is not the case. Our participants mentioned again and again just how much that they were missing their friends during lock-down and that they were also missing their neighbours, their local shopkeepers and the general community. Often, they also talked about feeling surprised about how much they missed their friends. So it was a revelation to them as well, and they also described missing the human contact that typically comes with much service provision.

So interactions with their support workers or their therapists or their psychologists, and they really felt that technological innovations like tele-health or telemedicine, which was really widespread in Australia since March, were really an inadequate substitute for face-to-face therapy and support, with so many quotes from people basically saying, I can’t do Zoom. I can’t do a kind of therapy session on Zoom. I want to see my therapist face-to-face. I want to see my psychiatrist face-to-face.

Interviewer: This flies in the face of those sort of stereotypes.

Professor Liz Pellicano: Yeah, absolutely. I mean, exactly. I mean, we also know from lots of work that autistic people often prefer kind of computer mediated interaction. So I think for us it was surprising in that regard as well. I think we would have expected them to be more adept at tele-health, essentially, and I think these findings have massive implications for how we think about autism. You know, our theories.

Lots of theories talk about how autistic people have no social motivation. They have diminished social motivation and, you know, our study shows that that’s just not the case. I think it also has implications for how we work with autistic people in practice. If we’ve got these stereotypes about the people with whom we work that they don’t want to see friends, I think that’s hugely problematic within a pandemic where they’re self-isolating and need that social contact just like non-autistic people do.

Interviewer: What do you think those results mean for practitioners then, given that some of it was surprising in some respects?

Professor Liz Pellicano: Yeah, I think we need to be much more attentive to the social needs of autistic children, young people and adults and autistic parents, but I think that we know that social isolation has a huge cost in terms of our mental health and our study showed that this was also the case for our autistic participants. So I think we need to be really attentive to their social needs so that we can ensure that they foster a positive well-being and mental health, particularly in these circumstances, but in more normal times, if we actually ever get back to them.

Interviewer: Liz, what else is in the pipeline that you’d like to mention?

Professor Liz Pellicano: I think there’s so much, but I think I’d just like to ask people to maybe follow us on Facebook. We have a Facebook group called Autism MQ and perhaps they could see the work unfold that we do.

Interviewer: And finally, Liz, what is your takeaway message for those listening to our conversation?

Professor Liz Pellicano: That we can and that we should do autism science in a different kind of way. So attentive to real life and open to the perspectives and experiences of autistic people themselves.

Interviewer: Liz, thank you so much. For more details on Professor Liz Pellicano, please visit the ACAMH website 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. Let us know if you enjoyed the podcast with a rating or review and do share with friends and colleagues.