Re-Mapping Autism Research in the UK: Identifying Priorities for the Decade Ahead

Background:

The recognition that autism is more prevalent than was previously realised has been accompanied by an increase in research interest. An accurate summary of the autism research landscape is required to ensure that decisions made about future priorities are appropriate and well informed, particularly given the fierce competition for research funds in the current economic climate.

Objectives:

The aims of this study are (1) to provide a comprehensive summary of the current state of autism research (in terms of both grants awarded and published articles) in the UK and internationally; and (2)to seek the views of a wide range of individuals from the autism community regarding their priorities for future research.

Methods:

We used two streams of inquiry to address objective 1. First, 12 online journal databases were searched for articles containing any of a selection of autism-related search terms in their title, abstract or key words published in 2001 and 2011 to compare changes over the past decade. Second, a similar search was conducted on online research funding databases for funding awards made between 2007 and 2011 in the UK, Ireland, USA, Canada, Australia and New Zealand. The primary topic of all articles and funding awards identified were systematically categorised with a protocol adapted from previous work.

To address objective 2, interviews and focus groups were conducted with a broad range of stakeholders including autistic people, parents of autistic children, autism researchers and autism practitioners to identify participants’ priorities for future research. The views and perspectives of a large number of stakeholders were also captured via an online survey.

Results:

Data collection in each of the four data streams is ongoing. Provisional findings include:

1. 1,463 and 4,727 academic articles on autism were published in 2001 and 2011 respectively.
2. 115 funding awards were made in support of autism research in the UK between 2007 and 2011 comprising a total spend of £21.2m and an average annual spend of £4.2m – relative to the $408.6m (£251.8m) spent in the USA in 2010 alone.
3. Early-career researchers and parents of autistic children agreed that current knowledge about autism in adulthood in particular is insufficient and that research into this area should be prioritised in future.

Conclusions:

These preliminary results indicate that peer-reviewed autism publications tripled in number between 2001 and 2011 and that both real and per capita spending on autism research in the USA far exceeded that in the UK between 2007 and 2011. Themes generated from the focus groups conducted so far provide intriguing insights into how the priorities of researchers and non-academics overlap and diverge, which will be augmented by the findings of the online survey launched in November 2012.