“The Future I’d like to see” – Dame Stephanie Shirley

Since 2007 we have had the National Audit Office’s report, the Autism Acts in England and Northern Ireland, the Scottish Strategy for Autism and the Welsh Autism Strategic Action Plan.

Why should the Shirley Foundation invest over £½m in the National Autism Project, otherwise known as NAP? What was my intention? What is the result? Where might it lead?

Over the previous 20 years, my charitable foundation had initiated a number of projects addressing the costs of autism – to the family; and to the nation. Later work focused on the avoidable costs. So why not tackle the desirable costs – those which pay a dividend?

NAP is a three-year Shirley Foundation initiative – the latest and most strategic of the Foundation’s 70 autism projects totalling over £50m.

It started by my wanting to improve our impact on the autism sector and, following discussions with people such as autism guru Professor Sir Michael Rutter and Oxford’s Regius Professor of Medicine Sir John Bell, it morphed into an autism think tank.

This was so as to move from “I think this” and “you believe that” to authoritative recommendations on autism research and practice, based on demonstrable effectiveness.

I wanted to answer the misleadingly simple question as to how money for autism research should best be invested. That meant we needed to understand the autism practices and which are effective; who decides what effective is; the quality of evidence and which practices make economic sense.

So NAP was to identify the gaps and how they could be addressed, how they could be prioritised and by whom and who is responsible for implementation.

It is based on the advice of 24 experts, academics and practitioners led by a nine-strong Strategy Board chaired by Lady Elizabeth Vallance – pretty well all doctors and professors apart from me and, uniquely, with an Autistic Advisory Panel of people diagnosed as autistic.

This panel helped NAP’s non-autistic members to understand what is really needed. Its general principles were simple: to recognise people’s individuality, different needs and preferences; and for many autistic people’s wish for greater autonomy to be balanced by effective support structures. So NAP directly addresses the inequalities in access to healthcare, education and employment and is focused on early intervention and evidence-based interventions both in childhood and throughout life.

Professor Knapp and his team from the London School of Economics were guided to examine the evidence base for interventions, pick out neglected but important topics, interpret the evidence and develop the conclusions and recommendations. These were endorsed by 24 organisations from Ambitious about Autism to the Westminster Commission on Autism (on which I also serve) – and there would have been more, except that we were going into print.

The economic impact of autism on the nation is a staggering £32bn a year – compared with £13bn for cancer. Yet the money spent on cancer research is £220 per cancer patient and that on autism research is just £6 per autistic person. Where is the fairness in that?

NAP intends to increase, and increase substantially, both the public and private spends on autism research.

How much more? NAP’s Director, Dr Ian Ragan, supposes a ten-fold increase is achievable – which would still be less than other leading autism research countries such as the US and Australia.

It is a simple concept really to plan a step function in quality research. The printed report: The Autism Dividend – Reaping the rewards of better investment was published in January 2017 and incorporated inputs from the three devolved nations. None of its recommendations are particularly new. What is different is that they are evidence-based and demonstrably supported by over 400 references.

Throughout 2017, NAP is concentrating on leveraging the report to Westminster and Whitehall. It is probably the most important work any of us have ever done.

I’d like to see at least the beginnings of a national strategy for autism by the end of the year.

Dame Stephanie Shirley

April 2017

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.