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Participatory autism research with students at a UK university: evidence from a small-scale empirical project

Kenneth Andrew Searle (POLSIS, University of Birmingham, Birmingham, UK)
Liz Ellis (School of Education, University of Birmingham, Birmingham, UK)
Marianthi Kourti (School of Education, University of Birmingham, Birmingham, UK)
Andrea MacLeod (University of Birmingham, Birmingham, UK)
Caroline Lear (University of Birmingham, Birmingham, UK)
Callum Duckworth (University of Birmingham, Birmingham, UK)
Davide Irvine (University of Birmingham, Birmingham, UK)
Harry Jones (University of Birmingham, Birmingham, UK)
Michaela King (University of Birmingham, Birmingham, UK)
Jessica Ling (University of Birmingham, Birmingham, UK)
John Simpson (University of Birmingham, Birmingham, UK)

Advances in Autism

ISSN: 2056-3868

Article publication date: 8 January 2019

Issue publication date: 16 April 2019

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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.

Keywords

Citation

Searle, K.A., Ellis, L., Kourti, M., MacLeod, A., Lear, C., Duckworth, C., Irvine, D., Jones, H., King, M., Ling, J. and Simpson, J. (2019), "Participatory autism research with students at a UK university: evidence from a small-scale empirical project", Advances in Autism, Vol. 5 No. 2, pp. 84-93. https://doi.org/10.1108/AIA-05-2018-0018

Publisher

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Emerald Publishing Limited

Copyright © 2019, Emerald Publishing Limited

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