From tokenism to full participation

Autistic involvement in research and the delivery of services

Authored by: Damian Milton

The Routledge Handbook of Service User Involvement in Human Services Research and Education

Print publication date:  August  2020
Online publication date:  August  2020

Print ISBN: 9781138360143
eBook ISBN: 9780429433306
Adobe ISBN:


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As autistic self-advocacy and rights groups have grown over recent 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 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, including the Participatory Autism Research Collective (PARC) and the National Autistic Taskforce (NAT). While such efforts are to be applauded, they remain somewhat on the periphery of autism discourse and practice. Further work is also needed on the inclusion of autistic people with significant learning/intellectual disability and with regard to the intersection between autism and gender.

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