Damian works part-time for the National Autistic Society (NAS) as Head of Autism Knowledge and Expertise (Adults and Community) and sits on the scientific and advisory committee for Research Autism. In the summer of 2017 Damian will be joining the Tizard Centre, University of Kent as a part-time Lecturer to coincide with his work for the NAS. Damian’s interest in autism began when his son was diagnosed in 2005 as autistic at the age of two. Damian was also diagnosed with Asperger’s in 2009 at the age of thirty-six.
Participatory autism research: from ideological tensions to practical opportunities
This presentation reflects upon the involvement of autistic people in research and what autistic people have to say when able to raise their voices in regard to autism research, theory and practice. I will also reflect upon the various barriers and difficulties involved in participatory research. In the field of autism studies, a mass of competing and contradictory accounts can be found. By reflecting on a number of studies, this presentation will seek to address the ideological tensions that have formed within and between various ‘stakeholder’ groups and delve into some of the deeper reasons as to why such tensions exist. In conclusion, I suggest that the exclusion of autistic people from meaningful involvement in research is both ethically and epistemologically problematic and constitutes a significant barrier to research impact, yet also review some contemporary projects which serve as exemplars of increasing participation and the potential opportunities for building a more inclusive future.