Rebecca Poulsen and colleagues at Autism:
The last decade has witnessed the emergence of a powerful call from autistic people to have real input into the decisions that shape their lives. This participatory approach underpins discussions regarding autistic involvement with issues from social policy, human rights, justice and accessibility rights, through to meaningful and effective approaches to clinical, medical, therapeutic and educational practices. The heart of the message is, in part, about acceptance: embracing and valuing autism as part of the human spectrum. It is also about ensuring that meaningful change can be driven by those who have a true and deep understanding of the strengths and needs from their own experiential expertise.
The slogan that best captures this idea – ‘nothing about us without us’ – rings especially true within the world of research, with implications for both what research is done and how it is conducted. Autism researchers have responded across the world. There is a deepening recognition that having rigorous methodological design that is participatory in nature improves the outcomes of research (den Houting et al., 2021; Fletcher-Watson et al., 2019; Gillespie-Lynch et al., 2017; Nicolaidis et al., 2019; Pellicano, 2020; Pellicano et al., 2021). In addition, there is a growing appreciation that participation helps researchers to translate their ideas more effectively into recommendations for concrete change in clinical or educational practice or broader public policy (Adams et al., 2018; Benevides et al., 2020; Gillespie-Lynch et al., 2021; Leadbitter et al., 2021; Shattuck et al., 2018; Warner et al., 2019).
It is indisputable, therefore, that participatory research is gaining momentum among autism researchers. It remains, however, far from the dominant approach. In practice, much autism research continues to exclude autistic input except in the capacity of a research participant (Fletcher-Watson et al., 2019; Milton & Bracher, 2013; Milton et al., 2019) and those few studies that include autistic people in the decisions around research are all too often tokenistic in nature (den Houting et al., 2021). Indeed, as Milton (2019) argues, autistic people have traditionally been viewed as the subjects on which research is conducted rather than cast in the role of researcher.