Autism research, autistic co-researchers, and PhD projects: a collaborative autoethnography

Abstract While participatory autism research is a priority in supporting the evolution of research in the field of autism, there has been limited consideration of community involvement in higher degree by research (HDR) projects such as PhD study. This is an important issue in higher education that requires focus, as HDR projects should represent significant contributions at the forefront of relevant disciplines. Detailed in this paper is a collaborative autoethnographic approach used to highlight the experiences of a PhD project team that sought to overcome challenges inherent to HDR study to include an autistic adult in a co-researcher role throughout a PhD project. The team (a PhD candidate and two research supervisors who identify as neurotypical, and an autistic research partner) used recommended guidelines for including autistic adults in co-researcher roles as a framework for their reflections. Key findings informed by the reflections include: (a) the importance of prioritising participatory research elements early; (b) building trust through relationship building; (c) using organised communication methods; (d) navigating a balance between authentic participation and PhD project completion; and (e) advocating for flexibility in funding sources. Recommendations are provided for others intending to incorporate elements of participatory research in HDR projects and are relevant beyond the field of autism to other disciplines of HDR research with marginalised people.

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Publication Details

Journal
The Australian Educational Researcher
Published
2025-08-15
DOI
https://doi.org/10.1007/s13384-025-00887-5
Primary Topic
Autism Spectrum Disorder Research
Type
article
Field-Weighted Citation Impact
0.00

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article

Autism research, autistic co-researchers, and PhD projects: a collaborative autoethnography

Jenna Gillett‐Swan, Rachel Aberdein, Helen McLennan, Beth Saggers
The Australian Educational Researcher
Autism Spectrum Disorder Research
article

Autism research, autistic co-researchers, and PhD projects: a collaborative autoethnography

Jenna Gillett‐Swan, Rachel Aberdein, Helen McLennan, Beth Saggers
article en

Abstract

Abstract While participatory autism research is a priority in supporting the evolution of research in the field of autism, there has been limited consideration of community involvement in higher degree by research (HDR) projects such as PhD study. This is an important issue in higher education that requires focus, as HDR projects should represent significant contributions at the forefront of relevant disciplines. Detailed in this paper is a collaborative autoethnographic approach used to highlight the experiences of a PhD project team that sought to overcome challenges inherent to HDR study to include an autistic adult in a co-researcher role throughout a PhD project. The team (a PhD candidate and two research supervisors who identify as neurotypical, and an autistic research partner) used recommended guidelines for including autistic adults in co-researcher roles as a framework for their reflections. Key findings informed by the reflections include: (a) the importance of prioritising participatory research elements early; (b) building trust through relationship building; (c) using organised communication methods; (d) navigating a balance between authentic participation and PhD project completion; and (e) advocating for flexibility in funding sources. Recommendations are provided for others intending to incorporate elements of participatory research in HDR projects and are relevant beyond the field of autism to other disciplines of HDR research with marginalised people.

The Australian Educational ResearcherVol. 52(6)
Queensland University of Technology (AU)
Australian Government, Queensland University of Technology
Openalex Percentile: Top 79%
Autism Spectrum Disorder Research
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