’Nothing about us, without us’: the autism research agenda

This talk will reflect upon how within the field of autism studies, autism has generally been framed in negative terms as a pathologised abnormality, with efforts to remediate and modify the behaviour of autistic people to an idealised normative standard. This is despite many years of protestation from the autistic community about the damage that such an ideology can cause to autistic self-identities (Dawson, 2004, Milton and Lyte, 2012). Although many within the autistic community have adopted the political slogan of: ‘Nothing about us, without us’, research into autism continues to largely sideline potential valuable insights from research of a qualitative and/or participatory nature. The lack of critical social theory being utilised within studies concerning autism means that there is a continued unchallenged affirmation of existing stereotypes and assumptions. This talk concludes by stating a hope that researchers will not continue to practice as if autistic people are incapable of participating in debates regarding research priorities and ethics. This means moving beyond an ideology of seeing autistic people as mere passive subjects in the research process, to accommodating autistic people as collaborators, consenting participants, and colleagues. Included in this presentation will be quotations from other autistic researchers and a statement from Autistic-UK (formally the Autistic Rights Movement UK). With autism being more commonly recognised in large numbers of people, it is necessary that the voices of such people be given greater prominence within the research agenda, from initial design through to dissemination.