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Article
Publication date: 8 January 2019

Kenneth Andrew Searle, Liz Ellis, Marianthi Kourti, Andrea MacLeod, Caroline Lear, Callum Duckworth, Davide Irvine, Harry Jones, Michaela King, Jessica Ling and John Simpson

The purpose of this paper is to address the benefits of a participatory approach to autism research, demonstrating the positive effects of giving autistic project…

Abstract

Purpose

The purpose of this paper is to address the benefits of a participatory approach to autism research, demonstrating the positive effects of giving autistic project assistants (PAs) the opportunity to design and undertake a project researching the experiences of autistic university students.

Design/methodology/approach

A participatory approach was implemented, engaging autistic university students as research assistants. All the research team except project co-ordinators were autistic. Undergraduate autistic students developed and conducted a set of semi-structured interviews, with two autistic alumni responsible for data analysis and both scheduling and moderating focus groups. Participation in dissemination of the findings was open to all.

Findings

The results included in this paper reflect a portion of the overall findings, specifically regarding the participatory approach. The findings of the study indicate the perceptions of respondents being interviewed by autistic researchers in relation to their shared understanding, facilitating positive feelings and a sense of rapport in the interview process. The PAs were able to improve their research skills through the project, which contributed constructively to their CV and allowed them to feel more positive about being autistic, and specifically about being an autistic researcher.

Originality/value

This paper is one of the first to discuss the challenges and benefits of including autistic participant researchers at all stages of the research project, including research design, data collection, analysis and dissemination, being co-written by both project co-ordinators and autistic project researchers.

Details

Advances in Autism, vol. 5 no. 2
Type: Research Article
ISSN: 2056-3868

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Article
Publication date: 17 May 2019

Damian Elgin Maclean Milton, Susy Ridout, Marianthi Kourti, Gillian Loomes and Nicola Martin

The Participatory Autism Research Collective (PARC) was initially set up with the purpose of bringing autistic people, including scholars and activists (but not…

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.

Details

Tizard Learning Disability Review, vol. 24 no. 2
Type: Research Article
ISSN: 1359-5474

Keywords

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