Making the future together: Shaping autism research through meaningful participation

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Fletcher‐Watson, S., Adams, J., Brook, K., Charman, T., Crane, L., Cusack, J., Leekam, S., Milton, D., Parr, J. R., & Pellicano, E. (2018). Making the future together: Shaping autism research through meaningful participation. Autism, 23(4), 943-953. https://doi.org/10.1177/1362361318786721

Publication date: 10 Aug 2018 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
10
Publication authors identified as autistic
4 / 10 (40.0%)
  1. Sue Fletcher‐Watson
  2. Jonathan Adams *
  3. Kabie Brook *
  4. Tony Charman
  5. Laura Crane
  1. James Cusack *
  2. Susan Leekam
  3. Damian Milton *
  4. Jeremy R. Parr
  5. Elizabeth Pellicano

Abstract

Participatory research methods connect researchers with relevant communities to achieve shared goals. These methods can deliver results that are relevant to people's lives and thus likely to have a positive impact. In the context of a large and growing body of autism research, with continued poor implementation, and some evidence of community dissatisfaction, there is a powerful case for participatory autism research. In order to develop a framework for such collaborative working, a UK seminar series was organised and co-produced by autistic and non-autistic people with academic, practitioner and lived expertise. This article reports on the outcomes from the series, identifying five topics relevant to building a community of practice in participatory research: Respect, Authenticity, Assumptions, Infrastructure and Empathy. Each topic is connected to a specific example from within and beyond research, to inspire new practices in the field. We call for the development of participatory research skills among the autism research community and the facilitation of greater autistic leadership of, and partnership in, research. Such work, if delivered to a high standard, is likely to lead to better translation into practice and improved outcomes for autistic people and those who support them.

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Cited references
72
Total cited references integrated for this publication.
Cited references with an identified autistic author
13 / 72 (18.1%)
Cited author occurrences identified as autistic
18 / 243 (7.4%)
Among occurrences linked to AutiHub author records: 18 / 105 (17.1%). Distinct cited authors identified as autistic: 10 / 202 (5.0%).
Cited author occurrences linked to AutiHub author records
105 / 243 (43.2%)
Distinct linked cited authors: 68 / 202 (33.7%)
Linked cited-author occurrences not identified as autistic
87 / 105 (82.9%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 87 / 243 (35.8%). Distinct linked cited authors not identified as autistic: 58 / 68 (85.3%).
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