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

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.