In the summer of 2010 as England was being knocked out of the World Cup in South Africa, something all together more hopeful was happening in London. A group of scientists, social researchers, parents and autistic people got together to join a discussion at the Institute of Education on research into autism.
The enthusiasm for the chance to debate and discuss complicated and emotionally charged issues like the “cure” and “prevention” of autism versus notions of autistic differences and what some call “neurodiversity” was astonishing – despite, and perhaps even because of, widely opposing views.
It led colleagues and me at the Centre for Research in Autism and Education to consider the need to find out what people with autism and their families thought about the current direction of research.
In a project called A Future Made Together, funded by the charity Research Autism, we conducted the most comprehensive review of UK research into autism ever undertaken.
We consulted with more than 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 leading work in the area of cognitive psychology, stretching from the work of Sir Michael Rutter to Uta Frith. But it also noted considerable challenges in the years to come. While parents of children with autism 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.
It turns out that 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 – or can’t – read about research in academic papers. They want to hear about research in accessible ways. And they want to see real changes for their child, or for the person they work with.
British academics haven’t been taking enough 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 research targeting the immediate circumstances in which autistic people find themselves, on services, treatments and interventions and education.
Families of people with autism valued the need for basic research to understand better its underlying causes – 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 than is presently the case.
My view is that we need to take research in radical new directions. We must continue to develop our world-leading skills in key areas of 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 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, as they attempt 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?”
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.
This article is co-published with the Institute of Education. A longer version of the piece appears on its blog