Developing a Research-Policy-Practice Hub for Autism Spectrum Disorder

As many as 1 in 100 children have an Autism Spectrum Disorder. Beyond the suffering for the individual and family, the lifetime economic cost of this condition is estimated to be £3-4 million per individual. Although research has advanced our knowledge on evidence based practice in areas of early identification, diagnosis and intervention, much of this knowledge is not reaching policy and practice. Likewise some key issues affecting individuals with autism that are being articulated by third-sector organisations and government agencies are not impacting on research. The aim of this knowledge exchange project is to create a unique Autism Research-Policy-Practice Hub that will reach across research, policy and practice communities to enable the co-production of knowledge of autism. The goal of this initiative is to facilitate advances in health and wellbeing by providing insight into public policy and practice agendas and increasing access to knowledge on evidence-based approaches to autism. This Research-Policy-Practice initiative builds on a unique foundation of policy and research partnership made possible by the first government strategy for autism in the world. It will provide the first national research-policy-practice model of its kind, and a model for the UK and internationally, both within the field of autism and beyond.

The research will have potential social and economic impact on policy and practice. These potential impacts will be short, medium and long range as detailed in "Pathways to impact" section. The pathway for realising these impacts will be monitored through an impact-performance plan. A Steering group chaired by Professor Leekam, will be formed to track potential impact. This will consist of representative stakeholders including charities, Welsh Assembly Government and health and education professional groups, parents and an evaluation expert. The initial meeting at the beginning of the project will agree actions to ensure engagement of potential beneficiaries and will set objectives for monitoring and report at the end of the project.

The beneficiaries who will gain from the project immediately will be
(a) professionals working in decision making roles in government who work in policy fields of health, education and social care in relation to ASD
(b) practitioners and researchers in the areas of health, education and social care who work directly with individuals with ASD
(c) researchers working in ASD.

As a result of the benefits above, families affected by ASD and the public generally will also benefit from the project.

Benefits will be gained through increased understanding within each professional group about the issues guiding each other's agendas, priorities and constraints. Improved working relations and decision making should be gained as a result of these insights. The activities involving clinical consultants are expected to impact on the skill and confidence of clinicians and researchers and lead ultimately to improved quality of diagnostic data. These improvements in competence in turn will improve the quality and focus of research. In sum, we envisage that through these activities there will be a direct enhancement of professional expertise and enhancement of skills that will have implications for families affected by autism