Moving beyond a medical approach: what interdisciplinary perspectives on autism can teach us about the unacknowledged biases in medical research and funding structures
Dr Anna Stenning, Dr Amy Pearson, Sarinah O’Donoghue, Professor Kristien Hens chaired by Dr Greg Hollin & Professor Hanna Bertilsdotter-RosqvistZoom
The self-advocacy movement has drawn on personal narratives to reframe medical writings on autism. Yet these accounts are seldom taken into consideration in data-driven studies, even as they aim to address problems identified by the advocacy community itself.
Autism narratives offer an experiential perspective that offers an alternative conception of what ‘health’ may mean to autistic people themselves. We will address the ethical and practical need for new research methods and interventions that are based on critical collaborations between disciplines to explore unacknowledged biases in autism research.
We will consider the need for a shift away from a framework that considers social and communication differences as inherently pathological. As part of this, we will explore the funding and institutional frameworks that value traditional ways of producing and disseminating research. At another level, we will consider the reviewing processes that make it difficult to conduct truly innovative research that breaks with convention.
Finally, we will address practical and theoretical challenges of this kind of work, with attention to the need to move beyond considering narratives as pathography or a direct transcription of experiences, and the implications for the kind of ‘data’ that is analysed.
This is a panel discussion between Dr Anna Stenning (convener, University of Leeds) and Dr Amy Pearson (University of Sunderland), Sarinah O’Donoghue (University of Aberdeen) and Professor Kristien Hens (University of Antwerp), chaired by Dr Greg Hollin (University of Leeds) and Professor Hanna Bertilsdotter-Rosqvist (University of Sodertörn, Stockholm). Following short presentations by the three speakers, the chairs will respond with observations and questions based on their own research and observations, thoughts on broader connections to the medical humanities, and then there will be a chance for the audience to ask questions in a live Q&A.