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

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Searle, K. A., Ellis, L., Kourti, M., MacLeod, A., Lear, C. H., Duckworth, C., Irvine, D., Jones, H., King, M., Ling, J., & Simpson, J. (2019). Participatory autism research with students at a UK university: evidence from a small-scale empirical project. Advances in Autism, 5(2), 84-93. https://doi.org/10.1108/aia-05-2018-0018

Publication date: 8 Jan 2019 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
11
Publication authors identified as autistic
1 / 11 (9.1%)
  1. Kenneth Andrew Searle
  2. Liz Ellis
  3. Marianthi Kourti *
  4. Andrea MacLeod
  1. Caroline H. Lear
  2. Callum Duckworth
  3. D. Irvine
  4. Harry Jones
  1. Michaela King
  2. Jessica Ling
  3. John Simpson

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.

Bibliography cited by this reference

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Bibliography inclusion overview

These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.

Cited references
23
Total cited references integrated for this publication.
Cited references with an identified autistic author
4 / 23 (17.4%)
Cited author occurrences identified as autistic
7 / 54 (13.0%)
Among occurrences linked to AutiHub author records: 7 / 24 (29.2%). Distinct cited authors identified as autistic: 5 / 48 (10.4%).
Cited author occurrences linked to AutiHub author records
24 / 54 (44.4%)
Distinct linked cited authors: 19 / 48 (39.6%)
Linked cited-author occurrences not identified as autistic
17 / 24 (70.8%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 17 / 54 (31.5%). Distinct linked cited authors not identified as autistic: 14 / 19 (73.7%).
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