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Short abstract:

This paper proposes that autistic-led autism research illuminates the norms of patient-centred medicine and the subsequent socio-cultural constraints on transformative autism research. I draw on the idea of disability as a rupture that summons new understandings of health for marginalised subjects.

Long abstract:

In the Transatlantic region, autistic self-advocacy and patient-centred medicine have catalysed autistic-led and participatory research on autistic health and illness. However, autistic-led research on autism can also be understood through Wolf-Meyer and Friedner’s conception of disability as rupture (2022), where autism ‘serves as a foil to rupture everyday expectations of bodies and their capacities’ and, provides a means to illuminate neglected pathways to health for marginalised groups. Autistic-led research has shown the relevance of societal stigma and identity management to autistic people’s mental health (e.g. Kapp et al 2019; Pearson and Rose 2023); it has shown how external barriers to accessing healthcare (Grant, A. et al. 2023); and identified health phenomena that are specific to autistic ways of being (Kapp 2019). Yet, the majority of funding continues to be directed at biological research on a cure for autism, which perpetuates stigma (Turnock et al 2022).

This paper examines whether the contexts of advocacy and patient-centred medicine have supported the aims of autistic autism researchers for transformative research on the causes of autistic illness and suffering. It will introduce two instances (ASPIRE; Crompton 2020) wherein autistic-led research deploys methods and frameworks that unravel the foundational assumptions of patient-centred medicine in the region, namely its implicit individualism, ableism and Eurocentrism. This paper concludes that, while the prevailing norms of patient-centred medicine constrain expressions of autistic knowledge about health beyond the subfield of autism research, the processes of ‘making and doing’ such research are transformative for those involved.