by Valentina Iemmi and Martin Knapp
More than 600,000 people in the United Kingdom have autism. While a multitude of interventions are available to support them, the value for money of those interventions is unknown. We are attempting to shed some light on this issue through the National Autism Project (NAP) funded by the Shirley Foundation.
What is autism?
The National Autistic Society describes autism as “a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them”.
What is the prevalence and cost?
In the United Kingdom, 1 in 100 people have been diagnosed with autism. Approximately half of them have an intellectual disability. The overall cost of autism to the country has been estimated to be at least £32 billion per year. This includes education, health and social care support, and productivity losses associated with disrupted employment for individuals with autism and also their parents or carers. The cost of supporting an individual with autism during his or her lifespan has been estimated at £1.5 million for someone with intellectual disability (and £0.92 million for someone without intellectual disability).
Which interventions are effective?
A great and growing number of interventions are available for people with autism spectrum disorders. NICE clinical guidelines provide recommendations on effective (and in some cases, also cost-effective) interventions for children and adults with autism spectrum disorders. These include psychological, pharmacological and biomedical interventions. However, the economic evidence is scanty.
The NAP project
The NAP project aims to examine the economic case for a range of interventions. In pursuit of this aim the NAP team within the Personal Social Services Research Unit (PSSRU) at LSE – which the two of us lead – is reviewing and summarising existing evidence on the effectiveness and cost-effectiveness of interventions. We will be carrying out new empirical economic analyses as the need and opportunity arise. We are also consulting with experts about research that is currently underway so that we can understand the relevance and significance of evidence, to explore the relevance of emerging interventions, and to identify some of the parameters needed for our new analyses.
When we use the term ‘interventions’ we mean any action with the potential to improve the lives of people with autism spectrum disorders and/or their families. This could be across any relevant dimension of life, at any stage in the life-course, in any ‘system’ (education, health, social care, housing, employment, community development, etc.) and delivered in any ‘sector’ (public, third sector, private for-profit, or ‘informal’).
By ‘economic case’ we mean one or more of a number of things: What is the impact on public or private expenditure? What is the impact on societal resources more generally (including ‘hidden’ costs such as unpaid support from family or friends)? Does spending on an intervention generate savings in the short- or long-term, and if so to whom and when? If the net impact of an effective intervention is to increase costs, is it still likely to be seen as cost-effective because the outcomes achieved are ‘worth it’?
The NAP project was launched at the House of Lords early this year in the presence of around 150 participants – practitioners, service providers, charities, policy makers, researchers, and individuals with autism spectrum disorders and family members.
The next few months…
Over the next few months the NAP team within PSSRU will be busy continuing their search for relevant evidence and meeting experts. If you would like to contribute economic evidence on promising interventions for people with autism spectrum disorders, this is the chance to have your say!
To contribute on the economic evidence, email Valentina Iemmi.
For more on the project, follow the progress reports on the NAP website.
About the authors
Valentina Iemmi is Research Fellow within the Personal Social Services Research Unit at the LSE.
Martin Knapp is Professor of Social Policy and Director of the Personal Social Services Research Unit at the LSE, and Director of the NIHR School for Social Care Research.