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

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

Research output: Contribution to journalArticlepeer-review

2 Citations (Scopus)


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.
Original languageEnglish
Pages (from-to)84-93
Number of pages10
JournalAdvances in Autism
Issue number2
Publication statusPublished - 21 Mar 2019

Bibliographical note

Kenneth Andrew Searle, Liz Ellis, Marianthi Kourti, (2019) "Participatory autism research with students at a UK university: evidence from a small-scale empirical project", Advances in Autism,


  • autism
  • higher education
  • research design
  • inclusion
  • participatory research
  • Autism
  • Participatory research
  • Inclusion
  • Higher education
  • Research design

ASJC Scopus subject areas

  • Clinical Neurology
  • Neurology
  • Psychiatry and Mental health
  • Developmental and Educational Psychology
  • Cognitive Neuroscience


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