A critical reflection on the development of the Participatory Autism Research Collective (PARC)

This publication is included in the Autistic Autism Scholarship Project. four authors of this publication are identified as autistic in the project.

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Milton, D., Ridout, S., Kourti, M., Loomes, G., & Martin, N. (2019). A critical reflection on the development of the Participatory Autism Research Collective (PARC). Tizard Learning Disability Review, 24(2), 82-89. https://doi.org/10.1108/tldr-09-2018-0029

Publication date: 1 Apr 2019 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

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Authors

Publication authors
5
Publication authors identified as autistic
4 / 5 (80.0%)
  1. Damian Milton *
  2. Susy Ridout *
  3. Marianthi Kourti *
  4. Gillian Loomes *
  5. Nicola Martin

Abstract

Purpose The Participatory Autism Research Collective (PARC) was initially set up with the purpose of bringing autistic people, including scholars and activists (but not exclusively), together with early career researchers and practitioners who work with autistic people, with the aim being to build a community where those who wished to see more significant involvement of autistic people in autism research could share knowledge and expertise. This paper aims to discuss this issue. Design/methodology/approach This paper explores the development of the PARC network, reflecting upon its activities and ethos within current higher education practices and structures. Findings In supporting autistic individuals in their attempts to establish themselves within academic systems that may not always be considerate or accommodating, the existence of PARC creates a structure with which autistic people can influence social change. PARC serves as a network of support, strengthening the presence of autistic scholars in academia. It also provides a structure through which autistic people are able to demonstrate helpful practices with which to engage more broadly. Originality/value The PARC network is the first autistic-led venture of its kind in the UK to have a sustained impact. PARC is growing to become an important element in the field of autism studies both by supporting emerging autistic academics and by promoting ethical and participatory research methods and practices.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 17:07.

Cited references
35
With a DOI
16
Without a DOI, from raw bibliography text
19
10 / 35 (28.6%) cited references include at least one author identified as autistic.
References with data to complete
12 / 35 (34.3%)
References with detected author names
23 / 35 (65.7%)
Without detected author names
12
Without a structured title
4
Without a stable identifier
12
References with raw author names still to review
4
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
59
From DOI or external metadata
59
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
8
40 / 59 (67.8%) names are linked to an author already present in AutiHub. 19 / 59 (32.2%) names are not yet linked.
Names linked to a person identified as autistic
23 / 59 (39.0%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 23 / 40 (57.5%). Distinct people identified as autistic: 18 / 54 (33.3%).
  1. Bronwyn Davies , Eva Bendix Petersen (2005). Intellectual workers (un)doing neoliberal discourse . Critical Psychology, 13(1), 32.
    Type: Article OpenAlex: https://openalex.org/W992712266
    Crossref OpenAlex
  2. Louise Archer (2008). Younger academics’ constructions of ‘authenticity’, ‘success’ and professional identity . Studies in Higher Education, 33(4), 385-403. Informa UK Limited.
    Type: Article DOI: 10.1080/03075070802211729 OpenAlex: https://openalex.org/W2140233819
    Crossref OpenAlex OpenCitations
  3. Nick Zepke (2017). Higher Education in Neoliberal Times . In Student Engagement in Neoliberal Times (pp. 57-75). Springer Singapore.
    Type: Book chapter DOI: 10.1007/978-981-10-3200-4_4 OpenAlex: https://openalex.org/W2562347309
    Crossref OpenAlex OpenCitations
  4. Robert Garvey , Paul Strokes , David Megginson (2010). Coaching and Mentoring: Theory and Practice . NHRD Network Journal, 3(2), 79-81. SAGE Publications.
    Type: Article DOI: 10.1177/0974173920100214 OpenAlex: https://openalex.org/W1559045152
    OpenAlex
  5. (1992). Process and Structure in Higher Education . Process and Structure in Higher Education.
    Type: Other
    Crossref
  7. Anat Greenstein (2014). Theorising Autism Project - Engaging Autistic People in the Research Process Review of a seminar day at the Institute of Education . Autonomy, the Critical Journal of Interdisciplinary Autism Studies, 1(3), 1.
    Type: Article OpenAlex: https://openalex.org/W1606156725
    Crossref OpenAlex
  8. (2001). Academic Tribes and Territories . Academic Tribes and Territories.
    Type: Other
    Crossref
  10. Damian Milton * , Lyte Moon (2012). The normalisation agenda and the psycho-emotional disablement of autistic people. Autonomy Crit. J. Interdiscip. Autism Stud., 1(1), 1.
    Type: Article OpenAlex: https://openalex.org/W1892279485
    Crossref OpenAlex
  11. Bhardwa, S. (2018), “What is the TEF? Results of the teaching excellence framework 2018. Times higher education”, available at: www.timeshighereducation.com/student/news/what-tef-results-teaching-excellence-framework (accessed 10 October 2018).
    Type: Other
    Crossref
  13. Bronwyn Davies , Eva Bendix Petersen (2005). Neo-liberal discourse in the Academy: The forestalling of (collective) resistance . LATISS: Learning and Teaching in the Social Sciences, 2(2), 77-98. Intellect.
    Type: Article DOI: 10.1386/ltss.2.2.77/1 OpenAlex: https://openalex.org/W1968201069
    Crossref OpenAlex OpenCitations
  15. Andrew Miller (2004). Mentoring Students and Young People . Routledge.
    Type: Book DOI: 10.4324/9780203417188 OpenAlex: https://openalex.org/W599530704
    OpenCitations
  18. Mary Henkel (1997). Academic Values and the University as Corporate Enterprise . Higher Education Quarterly, 51(2), 134-143. Wiley.
    Type: Article DOI: 10.1111/1468-2273.00031 OpenAlex: https://openalex.org/W2057027930
    Crossref OpenAlex OpenCitations
  19. Nicky James Abstract (1989). Emotional Labour: Skill and Work in the Social Regulation of Feelings . The Sociological Review, 37(1), 15-42. SAGE Publications.
    Type: Article DOI: 10.1111/j.1467-954x.1989.tb00019.x OpenAlex: https://openalex.org/W2081726498
    Crossref OpenAlex OpenCitations
  20. (2009). Coaching and Mentoring: Theory and Practice . Coaching and Mentoring: Theory and Practice.
    Type: Other
    Crossref
  21. Marek Korczynski (2003). Communities of Coping: Collective Emotional Labour in Service Work . Organization, 10(1), 55-79. SAGE Publications.
    Type: Article DOI: 10.1177/1350508403010001479 OpenAlex: https://openalex.org/W2113900621
    Crossref OpenAlex OpenCitations
  22. C. Wright Mills (1959). The Sociological Imagination . The Mississippi Valley Historical Review, 46(2), 355. Oxford University Press (OUP).
    Type: Article DOI: 10.2307/1891592 OpenAlex: https://openalex.org/W2135679398
    OpenAlex
  23. John E. Tropman , Arlie Russell Hochschild (1984). The Managed Heart: Commercialization of Human Feeling . Journal of Policy Analysis and Management, 3(3), 483. JSTOR.
    Type: Article DOI: 10.2307/3324333 OpenAlex: https://openalex.org/W2571172251
    Crossref OpenAlex
  24. Damian Milton * , Michael Bracher (2013). Autistics speak but are they heard? Med Sociol online, 7(2), 61.
    Type: Article OpenAlex: https://openalex.org/W2337764906
    Crossref OpenAlex
  25. Nicola Martin (2017). Encouraging disabled leaders in higher education: recognising hidden talents . Research Open (London South Bank University).
    Type: Article OpenAlex: https://openalex.org/W2613450480
    Crossref OpenAlex
  26. (2002). Mentoring Students and Young People: A Handbook of Effective Practice . Mentoring Students and Young People: A Handbook of Effective Practice.
    Type: Other
    Crossref
  27. (1959). The Sociological Imagination . The Sociological Imagination.
    Type: Other
    Crossref
  28. Susy Ridout * , Matthew J Edmondson (2017). Cygnet Mentoring Project: combined experiences from a mentor and a mentee . Autonomy: the Critical Journal of Interdisciplinary Autism Studies, 1(5).
    Type: Article OpenAlex: https://openalex.org/W2734556644
    Crossref OpenAlex
  29. Damian Milton * (2017). A Mismatch of Salience: Explorations of the Nature of Autism from Theory to Practice .
    Type: Book OpenAlex: https://openalex.org/W2762953930
    Crossref OpenAlex
  30. Milton, D. and Martin, N. (Eds) (2016), Autism and Intellectual Disability in Adults, Pavilion Press, Hove.
    Type: Other
    Crossref
  31. Milton, D. and Martin, N. (Eds) (2017), Autism and Intellectual Disability in Adults, Vol. 2, Pavilion Press, Hove.
    Type: Other
    Crossref
  32. (2016). 10 Rules for Ensuring People with Learning Disabilities and Those on the Autism Spectrum Develop “Challenging Behaviour” and Maybe What to do About it . 10 Rules for Ensuring People with Learning Disabilities and Those on the Autism Spectrum Develop “Challenging Behaviour” and Maybe What to do About it.
    Type: Other
    Crossref
  33. (2018). Autism and Mental Well-Being in Higher Education: A Practical Resource for Students, Mentors and Study Skills Support Workers . Autism and Mental Well-Being in Higher Education: A Practical Resource for Students, Mentors and Study Skills Support Workers.
    Type: Other
    Crossref
  34. (1983). Educational Ideologies . Educational Ideologies.
    Type: Other
    Crossref
  35. Walker, N. (2014), “Neurodiversity: some basic terms & definitions”, available at: http://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/ (accessed 11 January 2018).
    Type: Other
    Crossref