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How researchers and the autism community together can bring about real change

Blog Editor, IOE Digital23 April 2014

Liz Pellicano
In the summer of 2010, as England were being knocked out of the World Cup, something all together more hopeful was happening at Institute of Education. Jonathan Wolff (UCL) and I had invited a collection of scientists, social researchers, parents and autistic people to join a discussion on the way in which autism is understood and investigated in academia today.
Neither of us could have anticipated the response we received. The enthusiasm for the chance to debate and discuss complicated and emotionally charged issues like the ‘cure’ and ‘prevention’ of autism vs. notions of autistic differences and what some call ‘neurodiversity’ was astonishing – despite, and perhaps even because of, widely opposing views.
This event led colleagues and me at the Centre for Research in Autism and Education to consider more fully the need to engage the autism community – autistic people, their family members, those who support them and researchers – in research and its many implications. Over the past few years, we have made efforts to improve awareness of autism research, through our newsletters and social media networks (Twitter, Facebook), and to get people involved in discussions about controversial and complex issues about autism, through our free and public events at the IOE.
The high point of this work so far has been a project, A Future Made Together, funded by Research Autism, which conducted the most comprehensive review of autism research in the UK ever undertaken. Tony Charman, Adam Dinsmore and I set out to discover how much was spent on UK autism research and which areas were being addressed. We consulted with over 1,700 autistic people, their families, practitioners and researchers to understand what they thought of current autism research in the UK and where the funds towards autism research should be prioritised.
Our Report acknowledged the many great strengths of autism research in the UK such as our leading work in the area of cognitive psychology. But it also saw considerable challenges in the years to come. One of these was highlighted in a discussion with parents of children with autism. While they were impressed by the amount of work that goes into autism research, they were not convinced that research had made a real difference to their lives.
One woman said:
“I fill in all these questionnaires and do everything I can to help … but when it comes down to it, it’s not real life. It’s always missing the next step. It’s great you’ve done this research, you’ve listened to my views … but now do something with it.”
Too many people feel that there is a huge gap between knowledge and practice. Research doesn’t seem to help their child catch the train by themselves or keep themselves safe. And it doesn’t say how to get autistic adults into jobs and keep them there.
The people we spoke to said that they don’t want to read about research in academic papers. They want to hear about research in accessible ways. And they want to see real changes and real things happening on the ground for them, for their child, or for the person they work with.
It turns out that there is a good deal of truth in the criticisms. British academics simply haven’t been taking much notice of real-life issues. Our analysis showed that the majority of UK research focuses heavily on ‘basic science’ – neural and cognitive systems, genetics and other risk factors – rather than on targeting the immediate circumstances in which autistic people find themselves, on services, treatments and interventions and education.
The autism community valued the need for basic research to understand better the underlying causes of autism – but they wanted a more balanced profile, weighting research with a direct impact on the daily lives of autistic people more equally with core areas of basic science.
Almost all the researchers I know want to make a difference to people’s lives. But how do we do that?
My view is that we need to take research in radical new directions. Without doubt, we need to continue to develop our world-leading skills in autism science. But significant investment is also needed in areas of autism research currently under-resourced in the UK. And in order to work out which areas need the greatest investment, we ought to be listening to people about what they want from research.
Autism researchers do not do this enough. According to our findings, autistic people, their family members, and even practitioners are rarely involved in the decision-making processes that shape research and its application. Research priorities are thus ordinarily set almost exclusively by funders and academics in specialist fields. This pattern generates concrete problems for those responsible for commissioning local autism services, people working in such services, and for autistic individuals and their families, when attempting to make evidence-based decisions on education, health and social care.
But this is also problematic because of the feeling of exclusion that it engenders. The people that we spoke to often felt disappointed and frustrated at being ‘mined’ for information and having little or no opportunity to learn about the resulting discoveries and what they might mean for them. They also felt as if their expertise and knowledge – what it is like to be autistic, to care for someone who is autistic, or to work with someone who is autistic – was disregarded by researchers. This lack of reciprocity resulted in feelings of distrust and disempowerment. One autistic adult said, “Whatever we say, is that really going to influence anyone?”
We need to turn this around. As researchers, we need to connect more with the people we ‘study’. We need to value and respect the expertise of the autism community and, at the same time, work with them to increase their ‘research literacy’.
At CRAE, we aim to develop innovative approaches to ensure that autistic people, family members and practitioners are able to participate more fully in the decisions that affect their lives, in the research lab, in schools, at work and in local communities. But developing these research-community partnerships is not easy. It takes time, effort and often funding. Institutions, grant-giving bodies and government agencies are promoting public engagement in research but much more needs to be done to develop supportive infrastructure, including providing the necessary training in participatory methods.
The rewards of working together are manifold. In fact, it may be the only way to ensure that the research that we do really counts.
 
CRAE is the winner of this year’s IOE Director’s Prize for public engagement.
 
 

Research for all: a journal for all

Blog Editor, IOE Digital5 April 2014

Sandy Oliver

There is nothing unusual about academics and amateurs sharing and discussing their interests in learning. Professional and amateur stargazers debate the night sky, volunteers dig alongside archaeologists, biographers need readers and museums thrive with interactive exhibits.
Applied research such as medicine, communications or agriculture, elicits opinions about the focus, ethics and governance of research from people interested in the potential benefits and harms of new technologies or ways of working. All this is public engagement with research – where non-researchers are either contributing to the research, or debating or making use of the findings. Citizen science, engaged scholarship, patient involvement, public participation, practitioner research and many other terms describe activities which have overlapping principles and methods.
Sharing lessons between the disciplines and across policy sectors is difficult because we do not have a common language or shared understanding of what public engagement comprises and how it operates.
In the UK universities are supported by Research Councils UK and the National Coordinating Centre for Public Engagement  to encourage a growing culture of public engagement with research – by developing the “the myriad of ways in which the activity and benefits of higher education and research can be shared with the public”. This engagement is taken to be “a two-way process, involving interaction and listening, with the goal of generating mutual benefit”.
Staff at the Institute of Education have been part of this social movement. Universities across the UK and internationally have been opening up their ‘ivory towers’ and finding new ways to work with other people in organisations and networks where knowledge is valued for culture and for policy decisions.
For instance, university students who grew up in local authority care played a prominent role as workshop leaders and spoke movingly about their own challenging experiences at a conference reporting a study of them and 150 of their peers. Ultimately, the By Degrees study (pdf) led to the introduction of a bursary for care leavers who go on to higher education and encouraged many UK universities and local authorities to improve the support they offer care leavers.
On a lighter note, pupils and teachers were involved in pilot testing software (pdf) that would allow young people to make 3D adventure and puzzle games that are as satisfying to play as the ones they buy. Developing a common language was important for cross-disciplinary and cross-generational understanding of game design, and a new quality, commercial product.
Elsewhere, public debate about nanotechnologies (engineering on a molecular scale) illustrated how public engagement can: reveal public concerns and wishes; suggest new lines of enquiry; open science to public scrutiny; provoke reflection on the wider, social implications of scientific developments; and help scientists and the public develop new skills and mutual appreciation.
Ironically, despite holding similar principles, academics who are applying them in various areas for different purposes are often working in isolation, unaware that other enthusiasts are down the corridor or in neighbouring universities. Now, discussions between the eight universities with RCUK public engagement ‘catalyst’ funding, and the NCCPE, have inspired plans for an international journal for academics and others interested in research.
This journal, to be launched by IOE Press, will focus on the role of academic research in society at large, and the role of society at large in academic research. It will publish empirical research and critical analyses of public engagement with research across all academic disciplines; opinion pieces from public perspectives and engagement intermediaries; and reviews of books and events. It is a forum for sharing the learning from research and practice that crosses boundaries between research and the wider world, across academic disciplines and policy sectors.
The journal will consider the questions academics ask about how to choose between different publics and different methods depending on the context of their research projects, and the consequent impact on the research and those involved. It will consider the questions asked by outsiders wishing to engage academics in research – how to read research, news or commentaries with a critical eye, navigate university structures, and inspire academics with new agendas. Lastly, it will consider the systems and cultures that support or block academics and the public learning from each other.
Typical of this area – where choice of language reveals assumptions, cliques and fashions – an appropriate name for such a journal remains elusive. The vision is to bring together the wisdom of academics, practitioners, Science Technology Engineering and Maths (STEM) Ambassadors and all manner of engaged publics. Their task will be to shape a ground-breaking journal – and find a name.