Dame Steve Shirley has recently created the National Autism Project, an ambitious effort to persuade government and other funders to increase their investment in ASD research and the provision of more effective services for those affected by ASD. The project’s director, Dr Ian Ragan, explains more.
How does anyone wishing to spend money on a good cause decide who is the most deserving and will bring most benefit to the cause? This is the question Dame Stephanie (Steve) Shirley had been asking herself for a long time. Through The Shirley Foundation, Steve has been one of autism's greatest benefactors, and trying to decide who and what to support is a problem not only for her, but for all funders.
Having asked the question, Steve answered it herself by creating a project that would provide strategic guidance to funders. From this, the National Autism Project came into being, growing broader in its scope and loftier in its ambitions as the months went by.
Asking the bigger questions
If the initial question was framed around what research should be undertaken, why not, we reasoned, ask the bigger question about interventions and practice, such as: how do we know whether these are effective? And, even if we did, how would we persuade funders to support the good ones more generously?
Of all major societal issues, surely autism spectrum disorders (ASD) have been blighted more than most by misinformation. So, the National Autism Project (NAP) also offers an opportunity to identify - often not for the first time - those practices which are at best useless and at worst damaging to the quality of life, health and well-being of those with ASD.
In doing this, we hope to add our voice to those other organisations, public and private, striving to bring common sense and compassion to bear in this context.
What can NAP do that others are not doing?
The unique aspect of NAP is our effort to analyse the economic benefits, actual and potential, of research and practice, from basic biomedical research to social issues like housing and employment, and well-being.
The direct and indirect costs of ASD to the UK economy have recently been estimated as £32 billion per annum. Most of this sum is in the adult sector, and arises from housing costs and reduced employment opportunities, not only for those with ASD, but for their families and carers. This sum greatly outstrips the equivalent estimates for cancer, dementia or cardiovascular disease.
However, while such conditions are clearly illnesses whose treatment is self-evidently beneficial, ASD is different. We are acutely aware that many people with ASD neither want nor need their condition ‘treated’, but ask instead that society adjust more to accommodate their needs and look after their, rather than society's, perception of their well-being.
The concept of cost is also a difficult one in ASD, and we will attempt to distinguish ‘good’ costs that enhance the well-being of those affected by ASD (including families and carers) from ‘bad’ costs that do not meet their needs satisfactorily. However, when governments are more likely to listen to economic arguments than those based on societal benefit, we must monetise ASD.
The economic cost-benefit analysis will be based on an evaluation by a team at the London School of Economics. Their work will be helped and guided by a large number of experts recruited to the project, including those with autism, whose opinions will be crucial in ensuring that our recommendations are as well-informed as possible.
In some cases, the evidence base will no doubt enable us to come to clear conclusions on the societal and economic benefits of current investment, and to make firm recommendations for the future. In other cases, the evidence base may be weak, but our experts’ considered opinion may be that further research is merited to determine the benefit to people with ASD and the economic case for so doing. In some cases, of course, the evidence may be entirely negative, in which case, we shall say so.
What are the goals of NAP?
We aim to complete the work in a report to be published in late summer next year, and whose recommendations we hope will be endorsed by all the major organisations involved in ASD. This report will become the basis of a campaign to bring our recommendations to the attention of funders. We aim to see increased funding of research and more effective service provision to improve the well-being of those affected by ASD. We may even have a UK National Strategy for Autism as the culmination of this effort.
We are at the beginning of a monumental journey, but work has started and support is strong, as we know from the launch meeting we held in the House of Lords on April 28th. For those wishing to follow the story, our website will be up and running soon.
Written by Dr Ian Ragan, Director, National Autism Project