New hub connecting autism research, practice and policy
19 June 2013
Autism affects one in a hundred people in Britain today. There is, as yet, no cure for this lifelong condition, which makes social communication a struggle for thousands of people.
Scientists have been working on the early detection and diagnosis of autism, and on finding ways to help those diagnosed to develop skills. However, much of this research never reaches the people who need it - practitioners such as doctors, teachers, care workers, and also the policymakers who make decisions about autism services.
A new online Autism-Research-Policy-Practice Hub is aiming to bridge this gap. The hub, funded by the ESRC and the Welsh Government, is being developed by Professor Sue Leekam and colleagues at the Wales Autism Research Centre, Cardiff University.
"The hub will enable us to work hand-in-hand with practitioners as well as policymakers," says Professor Leekam. "In this way, such professionals will gain an understanding of the importance of research and we will be better able to target the real concerns of people with autism."
The Autism-Research-Policy-Practice Hub will draw on knowledge from research, policy and practice communities, relating to a range of issues including autism identification, diagnosis, intervention and education.
Making it easier to access reliable information about autism and treatment is vital. In the absence of access to evidence-based research, people with autism can be offered treatments that are based on no more than a hunch.
"A therapist might say 'I know what works. I've seen a change in this person with my own eyes'. A parent might be influenced by a treatment that helped someone else's child," Professor Leekam explains. "But such anecdotal evidence is not enough to prove that a treatment is effective."
In the last few years, the team has produced several booklets for practitioners and for parents of children with autism to help them decide whether a particular treatment might work, highlighting key issues to consider when choosing a therapy – such as the aims and methods of the treatment, the research evidence, and the skills and qualifications of the practitioner.
The new hub will have significance in several ways, adds Professor Leekam. Not only will it give people access to a wealth of information about autism that is supported by evidence-based research - it will also connect the professionals, enabling them to pool their knowledge and work more effectively together. The project will have a global reach through the internet, allowing UK professionals to draw on the experience of autism in other parts of the world.
The first hub activities will include creating a network of expertise, an online infrastructure and a set of communication packages.
With the new hub, we can now have a truly two-way knowledge exchange about autism, concludes Professor Sue Leekam.