Research priorities of the autism community: A systematic review of key stakeholder perspectives

Abstract

In recent years, a shift in focus has seen researchers seek to identify the priorities and preferences of key stakeholders to shape the direction of future research for those on the autism spectrum. The process of synthesising the views, knowledge and expertise of key stakeholders with either a lived or shared experience of autism is invaluable and can inform future research to ensure that it is meaningful and has the greatest impact. A number of studies have reported on the research priorities of groups within the autism community, but to date, these studies stand alone and priorities have not been considered collectively. This systematic review identified seven studies that reported on key stakeholders’ priorities for autism research. Studies were synthesised according to (a) the target participant group and method of recruitment, (b) the methodology used to elucidate the viewpoint of stakeholders, (c) the country of stakeholders and (d) commonly identified priorities. Common features across studies note the importance of prioritising initiatives that will result in real-world changes in the lives of the autism community and more research across the lifespan. There is an identified need for more diverse stakeholder voices to influence the identification of priorities for future research foci. Continued inclusion of the autistic and autism communities in priority-setting research is imperative for achieving significant outcomes in autism research and to progress the field in an effective and socio-ethical way.