From tokenism to full participation: autistic involvement in research and the delivery of services

Historically, autistic people have often been framed out of contributing towards the decisions that directly affect their own lives. This is despite a background of changing national and international policy and legislation regarding obtaining the views of disabled people in the delivery of services and within research practices (Pellicano et al. 2013). This is possibly most highlighted by the lack of autistic involvement and representation in many of the organisations that have been set up to advocate for the needs of autistic people. As this chapter indicates however, this is perhaps slowly beginning to change in some contexts, although many barriers still exist in regard to participation in wider social life, with many autistic-led advocacy groups rallying behind the call for ‘nothing about us, without us’ (e.g. ASAN, 2011; Autistic-UK, 2019). As autistic self-advocacy and rights groups have grown over the last two or three decades, there has also been a growing conflict between the autistic community ‘voice’ often championing the concept of neurodiversity and a social model of disability (or some variant thereof) and a discourse based in an individualised medical model of dysfunction, deficiency and dependency. In this chapter, an overview will be given to numerous participatory projects based primarily in the context of work happening in the United Kingdom will be given. This is due to how the UK could be said to be further along this path than most. Reference will also be made to efforts outside the UK.