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.