Successful entrepreneur turned ardent philanthropist Dame Stephanie Shirley will today launch the ambitious National Autism Project at the House of Lords. The Shirley Foundation, which has already donated over £65m to autism projects, is the principal sponsor of this important new initiative which is being set up to provide authoritative recommendations on autism research and practice in the UK. It will also raise awareness at government level of how well directed investment can both benefit those with autism and reduce the demand on UK national resources from autism spectrum disorders (ASD).
Autism affects around 1% of the UK population or some 650,000 people and has an economic impact similar to that of dementia. Dame Stephanie, whose late son Giles was autistic, believes that a much more strategic approach to addressing the challenges and releasing the potential of those with autism is needed. To this end the National Autism Project, led by a Strategy Board chaired by Dr Elizabeth Vallance and made up of key figures from the worlds of research and policy, will address the current paucity of national resource devoted to research and intervention in ASD by providing data-based evidence for increasing funding and assisting research-funding bodies to prioritise their efforts.
Dame Stephanie says: In the last ten years research has started to unlock the secrets of autism but we are a long way from seeing that turned into better life chances for those with the condition. The purpose of the National Autism Project is to show how better investment will lead to better research, better practice and better lives. It is 20 years since I founded my first autism charity and I am so impatient to see real change in my lifetime that I can wait no longer.
Dr Vallance says: Society’s interest in autism has increased rapidly in recent years and we saw the Autism Act in 2009 as the first step on the path to a better future. But the policy picture is still very fragmented and poorly informed, so the National Autism Project has a vital role to play in ensuring that all forms of public policy and investment are well informed and, therefore, well directed. We are delighted that so many expert and passionate people and organisations have already pledged their support.
Notes for Editors:
The remit of the National Autism Project, based at Balliol College, Oxford, is very broad and will encompass biological and medical research, healthcare, education, social care and societal perception and understanding. To support its formal work which is being led by well-known health economist Prof Martin Knapp of the London School of Economics, the National Autism Project has secured the participation of a wide range of experts and advisors, and formed partnerships with UK organisations already established in the field of ASD who will join in today’s launch hosted by Baroness Neuberger.
The first phase of work will be the modelling of the economic impacts and societal benefits of current and potential research and interventions and will result in an expert report with a target date for publication no later than September 2016. In the second phase, currently envisaged as lasting a further 18 months, the National Autism Project will use the report’s findings to raise awareness of the importance of further investment, and conduct a campaign to ensure that the report’s recommendations are taken up by policy makers and funders.
For further information, please contact Dr Ian Ragan.