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

Added on 20/11/2024

Type de contenu

Book chapter of the type Theoretical development ( ; english)

Damian Milton *
From tokenism to full participation: autistic involvement in research and the delivery of services , published in: The routledge handbook of service user involvement in human services research and education 6 pages , doi: 10.4324/9780429433306-45

*The author has publicly identified as autistic. [Learn more about this mention]

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Summary/Presentation

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.

For your information:

(1) References in blue are resources listed on our site.

(2) Authors listed in this bibliography whose names are in color have published other resources referenced on the site. Clicking on the name allows you to see the list of resources they have published and shared on the site.

(3) Authors whose names are followed by an asterisk have publicly disclosed being autistic.

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  • D. Milton* (2014). "What is meant by participation and inclusion, and why it can be difficult to achieve". NAS Ask Autism Conference: Participation and Inclusion from the Inside-Out: Autism from an Autistic Perspective, London Jan 2014.

  • D. Milton* (2017). "A Mismatch of Salience: Explorations of the nature of autism from theory to practice" Pavilion Press.

  • D. Milton*, M. Bracher (2013). "Autistics speak but are they heard?" Medical Sociology Online, 7(2), 61-69.

  • National Autism Project (NAP) (2019). "National Autism Project" (Source)

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  • D. Milton* (2018). "Autistic Development, Trauma and Personhood: Beyond the Frame of the Neoliberal Individual" In The Palgrave Handbook of Disabled Children’s Childhood Studies (pp. 461-476). Macmillan, London.

  • The Participatory Autism Research Collective (PARC) (2019). "The Participatory Autism Research Collective" (Source)

  • D. Preece, R. Jordan (2009). "Obtaining the views of children and young people with autism spectrum disorders about their experience of daily life and social care support" British Journal of Learning Disabilities, 38. doi:10.1111/j.1468-3156.2009.00548.x

  • S. Ridout (2017). "The autistic voice and creative methodologies" Qualitative Research Journal, 17(1), 52-64. doi:10.1108/qrj-07-2016-0046

  • S. Ridout (2018). "Autism and Mental Well-being in Higher Education: a practical resource for students, mentors and study skills support workers". Pavilion.

  • Shaping Autism Research UK (2019). "Shaping Autism Research UK" (Source)

  • J. Singer (2017). "Neurodiversity: the birth of an idea". Judy Singer.

  • Scottish Women’s Autism Network (SWAN) (2019). "Scottish Women’s Autism Network" (Source)

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