‘If social research in the field of autism is to claim ethical and epistemological integrity’ says Damian Milton (2014: 796), then participatory methods need to be developed, and autistic scholars need to be further involved in research.
As a non-autistic but neurodivergent researcher (with a diagnosis of ADHD), I am obviously not able to view autistic experience from the inside. What I can do, however, is to listen: listen to autistic scholars who are theorising and writing about autistic experience; seek out and listen to the advice of members of the research advisory group (RAG) for this research and wider autistic communities; listen to autistic research participants as to the questions they would like to see explored, and the most user-friendly ways for them to participate.
To my mind, there are only winners in collaboration between non-autistic and autistic researchers and research participants: research will become more pertinent to autistic individuals and communities, and the knowledge produced will be broader, deeper, and less likely to perpetuate oppressive myths and narratives. My ambition is that this study will contribute, however modestly, to a growing movement in this direction.
Some participatory resources:
Arnold, L. (2012a). Autism, its relationship to science and to people with the condition. Autonomy, the Critical Journal of Interdisciplinary Autism Studies, 1(1).
Arnold, L. (2012b). Introduction. Autonomy, the Critical Journal of Interdisciplinary Autism Studies, 1(1).
Bertilsdotter Rosqvist, Hanna, Marianthi Kourti, Jackson-Perry, David, Brownlow, Charlotte, Allenby, Kirsty, Bendelman, Daniel, & O´Dell, Lindsay. (2019). Doing it differently: Emancipatory Autism Studies Within a Neurodiverse Academic Space. Disability & Society.
Greenstein, A. (2014). Theorising Autism Project – Engaging Autistic People in the Research Process Review of a seminar day at the Institute of Education. Autonomy, the Critical Journal of Interdisciplinary Autism Studies, 1(3).
Milton, D. (2014). Autistic expertise : A critical reflection on the production of knowledge in autism studies. http://doi.org/10.1177/1362361314525281
O’Dell, L., Bertilsdotter Rosqvist, H., Ortega, F., Brownlow, C., & Orsini, M. (2016). Critical autism studies: exploring epistemic dialogues and intersections, challenging dominant understandings of autism. Disability & Society, 31(2), 166–179.
Orsini, M., & Davidson, J. (2013). Critical Autism Studies: Notes on an Emerging Field. In M. Orsini & J. Davidson (Eds.), Worlds of Autism: Across the Spectrum of Neurological Diference (pp. 1–28). Minneapolis: University of Minnesota Press.
Pellicano, E., Crane, L., & Gaudion, K. (2017). Participatory autism research: A starter pack. London: UCL Institute of Education.
Pellicano, L., Dinsmore, A., & Charman, T. (2013). A Future Made Together: Shaping Autism Research in the UK. London.
Raymaker, D., & Nicolaidis, C. (2013). Participatory Research With Autistic Communities. In Worlds of Autism: Across the Spectrum of Neurological Difference (pp. 169–188). Minneapolis: University of Minnesota Press
Woods, R., Milton, D., Arnold, L., & Graby, S. (2018). Redefining Critical Autism Studies: A more inclusive interpretation. Disability & Society, 33(6), 974–979.
Some sexuality and gender resources:
Bertilsdotter Rosqvist, H., & Jackson-Perry, D. (2020). Not Doing it Properly? (Re)producing and Resisting Knowledge Through Narratives of Autistic Sexualities. Sexuality and Disability. https://doi.org/10.1007/s11195-020-09624-5
Bumiller, K. (2008). Quirky Citizens: Autism, Gender, and Reimagining Disability. Signs: Journal of Women in Culture and Society, 33(4), 967–991. https://doi.org/10.1086/528848
Davidson, J., & Tamas, S. (2016). Autism and the ghost of gender. Emotion, Space and Society, 19, 59–65.
Jack, J. (2012). Gender Copia: Feminist Rhetorical Perspectives on an Autistic Concept of Sex/Gender. Women’s Studies in Communication, 35(1), 1–17. https://doi.org/10.1080/07491409.2012.667519
Jackson-Perry, D. (2020). The Autistic Art of Failure? Unknowing Imperfect Systems of Sexuality and Gender. Scandinavian Journal of Disability Research, 22(1), 221–229. https://doi.org/10.16993/sjdr.634
Kourti, M., & MacLeod, A. (2018). “I Don’t Feel Like a Gender, I Feel Like Myself”: Autistic Individuals Raised as Girls Exploring Gender Identity. Autism in Adulthood: Knowledge, Practice, and Policy. https://doi.org/10.1089/aut.2018.0001
Sala, G., Pecora, L., Hooley, M., & Stokes, M. A. (2020). As Diverse as the Spectrum Itself: Trends in Sexuality, Gender and Autism. Current Developmental Disorders Reports, 1–10.
Walsh, R. J., Krabbendam, L., Dewinter, J., & Begeer, S. (2018). Brief Report: Gender Identity Differences in Autistic Adults: Associations with Perceptual and Socio-cognitive Profiles. Journal of Autism and Developmental Disorders, 48(12), 4070–4078. https://doi.org/10.1007/s10803-018-3702-y