New directions for UK autism research

Scientists believe they are making great strides towards understanding autism. This is partly because there has been a dramatic expansion of autism research in the past decade in the UK and abroad (Dawson, 2013). The most comprehensive review of UK autism research ever undertaken recently found that almost £21 million was invested in autism research between 2007 and 2011 by UK government and non-government organisations, spread across 106 different projects (Pellicano et al., 2013). The Economic and Social Research Council made more funding awards than any other organization, while the Medical Research Council awarded more money for autism research than any other funder.

These developments are to be hugely welcomed. With 1 in every 100 UK people on the autism spectrum, it is vital that we develop our understanding of autism. Greater knowledge of the nature of the condition and its potential impact is clearly of significant social import. The same comprehensive review has also shown, however, that autistics, parents, clinicians and service providers are concerned that the research profile in the UK has largely prioritised basic science, especially biological science, potentially at the expense of other fundamental, but more applied areas, of research, including public services for autistic people, evidence-based treatments for autism and its related symptoms and the social and ethical challenges posed by some of the more recent scientific advances.

This proposed seminar series will bring together some of the world's most celebrated autism scientists with leading experts and practitioners drawn from these other fields in an effort to develop a new research agenda in each area of concern. They will seek to build new networks of inter-disciplinary researchers capable of pursuing this new agenda in the decades to come.

The seminars will be participatory in nature and begin by posing key provocations or questions that should both stimulate immediate discussion and assist scholars in developing more detailed research questions for the future, in collaboration with community members.

The seminars on public services would begin with questions including: What are the socioeconomic, ethnic and gender disparities in access to services? How can we improve post-diagnostic support for parents of children with autism and autistic adults? What are the best ways to get autistic adults into work and keep them there?

The seminars on evidence-based treatments, interventions and educations would begin with: What do we mean by 'evidence' when referring to autism interventions? How do we measure the effectiveness of education programmes in schools who follow 'eclectic' programmes? What 'outcome measures' should we use in interventions and who gets to make these decisions?

The seminars on autism and society would begin with: Should we be aiming for "inclusion" of autistic people in society and, if so, how do we achieve it? What place should the autism community have in shaping the research agenda? How do we know if, when and how we should intervene with autistic children, young people and adults? How should we best promote awareness (and acceptance) of autism?

This seminar series originates from a sense that although UK autism research is world-leading, it has not as yet realised its "translational" potential. In other words, major scientific discoveries have not been translated into recommendations for new services or treatments nor have they been properly and fully examined for their social and ethical implications. Moreover, autistic people and their family members have rarely been actively engaged in the research process - in deciding what the priorities are, how an issue is researched, who undertakes the research and so on - and many people report feeling disenfranchised as a result. These seminars aim to help put all of this right. Enhancing the impact of British autism research, is thus, at the very heart of their purpose.

That effort to enhance impact will be shaped in two ways,

First, those representing the main advocacy organisations and funders (e.g., National Autistic Society, Ambitious about Autism, Research Autism, Autistica, Autism Education Trust, Scottish Autism, Autism Cymru), and members of the autism community, including autistic young people (where appropriate) and adults, family members, and individuals from the policy and practice sectors (those focused on children and adults) will be intimately involved in each stage of the proposed seminars. Representatives of many of these bodies have already been consulted on the proposal and have discussed the ideas directly with the applicants. Should the bid be successful, they will be invited to participate in the seminars and will bring their conclusions directly to their membership. We believe this will stimulate significant and long-lasting interest in the seminars and their subjects.

Second, we will also use the established and extensive networks and resources of the applicants, including the London Centre for Research in Autism and Education (CRAE), to disseminate the results of the seminar discussions and provoke wider discussion and further future research, both academic and non-academic. We will use social media (Twitter, Facebook) to publicise events and to promote a dialogue with those unable to attend (e.g., via 'live tweeting'). Parts of the seminars will be filmed and podcasts posted on the CRAE YouTube channel for wider dissemination.