Developing an Evaluation Framework to Promote Meaningful Participation of Autistic People in Research: The Evaluating Levels of Participation in Autism Research Tool and Participatory Action Research Group Checklist

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Horton, E. D., Brownhill, L. A., Tones, D., Goldschmied, A. Z., Knops, M. J. J., Gürbüz, E., Dommett, E. J., Wilkinson, L., Taylor, J., Toro, C., & Jutley-Neilson, J. (2026). Developing an Evaluation Framework to Promote Meaningful Participation of Autistic People in Research: The Evaluating Levels of Participation in Autism Research Tool and Participatory Action Research Group Checklist. Autism in Adulthood. https://doi.org/10.1177/25739581261428642

Publication date: 30 Mar 2026 Added to AutiHub: 17 Jul 2026 Type: Article Article language: English
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Authors

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11
Publication authors identified as autistic
0 / 11 (0.0%)
  1. E. Delbert Horton
  2. Laura A. Brownhill
  3. Daniel Tones
  4. Anita Z Goldschmied
  1. Max J J Knops
  2. Emine Gürbüz
  3. Eleanor J. Dommett
  4. Lauren Wilkinson
  1. Jackie Taylor
  2. Carla Toro
  3. Jagjeet Jutley-Neilson

Abstract

Despite growing recognition of the participation of autistic people as collaborators in research, this field continues to face several significant challenges. Key issues include a lack of guidance for researchers on how to implement participatory methods effectively and a shortage of evaluation tools to support best practice. Meaningful participation has the potential to redress power imbalances, reduce stigma, and ensure that research accurately reflects the lived experiences of autistic individuals, leading to more relevant and effective services and support. To address these challenges, researchers codeveloped and refined a standardized evaluative framework to promote meaningful autistic participation across all research stages and evaluate good practice in establishing a Participatory Action Research (PAR) Group while enhancing transparency regarding the extent of involvement. Draft tools were developed by a neurodivergent lead researcher, with the development and refinement process led by autistic researchers who facilitated consultation with participatory researchers, ensuring that the tools reflected diverse perspectives and lived experiences. The refined evaluation framework consists of the Evaluating Levels of Participation in Autism Research Tool which promotes participation of autistic people as collaborators across the stages of research and PAR group checklist which evaluates inclusive and accessible interactions with autistic collaborators. Both tools support researchers in addressing power dynamics, provide specific guidance on how to operationalize participatory approaches, and serve as frameworks for evaluating and enhancing the meaningful participation of autistic individuals in research. These tools can support equitable and impactful collaborations between researchers and the autistic community.

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