In The Politics of Autism, I discuss the incentive structure facing academic researchers:
This diversity of research agendas is partially a result of uncertainty. Amid the darkness, it might make sense to shine searchlights in all directions. Some of it may also stem from the availability of autism research money at a time of tight science budgets. To put it bluntly, publication-hungry scientists may have an incentive to rebrand marginally-relevant work as autism-related. Describing her study of how experts on sex differences have landed on the “biomedical platform” of autism, science historian Sarah Richardson says they “have begun to link their very basic research -- even if it’s on nematodes [roundworms] -- to frame it as a contribution to autism.”
Autism research is changing. There is more of it than ever before. In August 2017, the Interagency Autism Coordinating Committee (IACC), the advisory committee that coordinates federal efforts and provides advice to the US government on issues related to autism, recommended that autism-related research funding in the United States should increase further still, doubling by 2020. If this recommendation were successful, US lawmakers would commit an unprecedented amount of funding to autism research. But it is not just the amount of research being commissioned that is being transformed, it is also the kind of research. The IACC now calls for research to address the diagnosis, biology and causes of autism and, critically, efforts to improve services across the lifespan. This latter focus is especially notable. While most current autism research addresses the underlying biology and causes of autism (Pellicano et al.,2013, 2014), which arguably ‘leads to significant future advances and opportunities’, the IACC (2017)has called for a ‘paradigm shift in how we approach autism’ (p. vi), to include research that will have a more immediate and direct impact on the daily lives of autistic people and their families, especially related to services and supports, and with underserved populations.
This revised approach to autism – to acknowledge the need to address the everyday realities of autism – is very much welcomed. It is the result, in part, of increased engagement with autistic people and their allies, who have repeatedly called for research that recognises the needs of autistic people1 living in the here-and-now (Pellicano et al., 2013, 2014). Indeed, it is increasingly acknowledged that for autism research to adequately address the issues facing autistic people and their allies, the nature of research agendas must be shaped together by researchers and community members (e.g. Bölte, 2017; Cusack, 2017; Krahn and Fenton, 2012; Pellicano et al., 2014).
