Trying to solve the ‘worst situation’ together: participatory autism research

This publication is included in the Autistic Autism Scholarship Project. two authors of this publication are identified as autistic in the project.

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Costley, D., Emerson, A., Ropar, D., Sheppard, E., McCubbing, A., Bass, S., Dent, S., Ellis, R., Limer, S., Phillips, S., & Penny, J. W. (2022). Trying to solve the ‘worst situation’ together: participatory autism research. Educational Action Research, 31(4), 691-708. https://doi.org/10.1080/09650792.2021.2019075

Publication date: 17 Mar 2022 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

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Authors

Publication authors
11
Publication authors identified as autistic
2 / 11 (18.2%)
  1. Debra Costley
  2. Anne Emerson
  3. Danielle Ropar
  4. Elizabeth Sheppard
  1. A. McCubbing
  2. Simon Bass
  3. Samuel Dent
  4. Rebecca Ellis *
  1. S. Limer
  2. Sophie Phillips *
  3. J. Ward Penny

Abstract

The importance of participatory autism research is discussed in relation to a project involving six autistic researchers and five non-autistic university researchers collaborating to investigate anxiety in autistic adolescents. The paper describes the process of establishing a research partnership and the values and philosophy behind this inclusive method of research. Lessons were learnt about neurodivergent thinking and the benefits it brings to the development of research questions and analysis of data.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 14:00.

Cited references
40
With a DOI
34
Without a DOI, from raw bibliography text
6
10 / 40 (25.0%) cited references include at least one author identified as autistic.
References with data to complete
3 / 40 (7.5%)
References with detected author names
38 / 40 (95.0%)
Without detected author names
2
Without a structured title
2
Without a stable identifier
6
References with raw author names still to review
1
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
120
From DOI or external metadata
120
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
1
81 / 120 (67.5%) names are linked to an author already present in AutiHub. 39 / 120 (32.5%) names are not yet linked.
Names linked to a person identified as autistic
28 / 120 (23.3%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 28 / 81 (34.6%). Distinct people identified as autistic: 24 / 110 (21.8%).
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