Ashworth, M;
Crane, L;
Steward, R;
Bovis, M;
Pellicano, E;
(2021)
Toward Empathetic Autism Research: Developing an Autism-Specific Research Passport.
Autism in Adulthood
, 3
(3)
pp. 280-288.
10.1089/aut.2020.0026.
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Abstract
Autistic adults sometimes report negative experiences of research participation. People have developed passports or toolkits in other areas where community members report dissatisfaction (e.g., health care, criminal justice). We created a Research Passport that autism researchers and autistic adults could use to support the inclusion of autistic adults as research participants. We designed and developed the Research Passport via an iterative design process. First, we gathered ideas for a Research Passport via focus groups with autistic adults without an intellectual disability (ID) (n = 9) and autism researchers (n = 6; one of whom was autistic). We found that the Research Passport (1) was a useful idea, but not a panacea for all issues in autism research, (2) needed to be universal and flexible, and (3) could have a broad remit (e.g., to record scores on commonly used standardized tasks that could, with permission, be shared with different researchers). Next, we conducted a preliminary evaluation of a prototype Research Passport via usability testing in three ongoing research projects. Nine autistic participants without an ID provided feedback on the Research Passport (via a survey), as did three nonautistic researchers (via interviews). We found that the Research Passport (1) promoted positive participant–researcher relationships, (2) provided a structure and framework to support existing practices, and (3) needed to be adapted slightly to facilitate usability and manage expectations. Overall, the Research Passport was useful in promoting empathetic autism research. Further design and development of the Research Passport are warranted.
| Type: | Article |
|---|---|
| Title: | Toward Empathetic Autism Research: Developing an Autism-Specific Research Passport |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1089/aut.2020.0026 |
| Publisher version: | https://doi.org/10.1089/aut.2020.0026 |
| Language: | English |
| Additional information: | This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions. |
| Keywords: | Autism spectrum disorder; Biomedical science, research and development; Medicine, Surgery & Diagnosis; Mental disorders; Nervous system diseases; Neurodevelopmental disorders; Public health care; Public Health Research and Practice |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Education UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education > IOE - Psychology and Human Development |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10122204 |
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