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

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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
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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

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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
40
Total cited references integrated for this publication.
Cited references with an identified autistic author
9 / 40 (22.5%)
Cited author occurrences identified as autistic
17 / 120 (14.2%)
Among occurrences linked to AutiHub author records: 17 / 75 (22.7%). Distinct cited authors identified as autistic: 13 / 110 (11.8%).
Cited author occurrences linked to AutiHub author records
75 / 120 (62.5%)
Distinct linked cited authors: 65 / 110 (59.1%)
Linked cited-author occurrences not identified as autistic
58 / 75 (77.3%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 58 / 120 (48.3%). Distinct linked cited authors not identified as autistic: 52 / 65 (80.0%).
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