Toward Empathetic Autism Research: Developing an Autism-Specific Research Passport

Metadata sources used for this reference

OpenAlex Crossref OpenCitations
Learn more about the sources used

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), 280-288. https://doi.org/10.1089/aut.2020.0026

Publication date: 12 Jul 2021 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English
OpenAlex source Publisher source (DOI)

This publication is integrated into AutiHub through:

Authors

Publication authors
5
Publication authors identified as autistic
1 / 5 (20.0%)
  1. Maria Ashworth
  2. Laura Crane
  3. Robyn Steward *
  4. Melissa Bovis
  5. Elizabeth Pellicano

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. Autistic adults taking part in research do not always have good experiences. An autistic member on our team thought that a Research Passport could help improve people's experiences. This idea was inspired by “passports” or “toolkits” that autistic people can use when visiting professionals such as doctors (so the doctor knows about the person and how to support them). The Research Passport lets autistic people tell researchers about themselves before taking part in a research study. Autistic people can decide how much, or how little, they tell the researcher. Autistic and/or nonautistic researchers can use the Research Passport to try and make sure that their autistic participants have good experiences when taking part in research. First, nine autistic adults (who did not have an intellectual disability) and six autism researchers took part in group discussions. We asked what they thought about our Research Passport idea and what it should include. We made a Research Passport mock-up based on these discussions. Nine autistic participants who did not have an intellectual disability used the mock-up in one of three university research projects. Autistic participants completed a survey to tell us good and not-so-good things about the Research Passport. Also, we interviewed three researchers about using the Research Passport (asking what they liked and what could have been better). Autistic adults and researchers involved in designing the Research Passport thought the Research Passport (1) could be useful but could not solve all problems in autism research, (2) needed to be suitable for many different people, and (3) could have many different benefits (e.g., collecting participants' scores on tests that researchers use a lot, so participants do not have to keep doing the same tests each time they take part in a new research study). Autistic adults and researchers used the Research Passport in ongoing studies and told us that it (1) led to good relationships between participants and researchers, (2) helped researchers make sure that the way they did their research was acceptable, and (3) was useful. However, participants need to be told what the Research Passport can/cannot help them with. This study involved a small group of autistic adults and researchers, and the results may not be the same with autistic adults and researchers who have different needs. Also, participants said the Research Passport was not very easy to complete, and a bit long. We need to change the Research Passport so that a wider range of autistic people (like those with intellectual disability) can use it. The Research Passport needs to be professionally designed so it is easier to be used by a wider range of autistic people. A bigger evaluation of the Research Passport could allow us to test it with more participants and in more research studies. Using the Research Passport could, with some changes and alongside other supports, improve the experience of autistic adults taking part in research.

Bibliography cited by this reference

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

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 11:31.

Cited references
23
Total cited references integrated for this publication.
Cited references with an identified autistic author
8 / 23 (34.8%)
Cited author occurrences identified as autistic
21 / 103 (20.4%)
Among occurrences linked to AutiHub author records: 21 / 74 (28.4%). Distinct cited authors identified as autistic: 14 / 75 (18.7%).
Cited author occurrences linked to AutiHub author records
74 / 103 (71.8%)
Distinct linked cited authors: 46 / 75 (61.3%)
Linked cited-author occurrences not identified as autistic
53 / 74 (71.6%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 53 / 103 (51.5%). Distinct linked cited authors not identified as autistic: 32 / 46 (69.6%).
  1. Colleen A. Kidney , Katherine McDonald (2014). A toolkit for accessible and respectful engagement in research . Disability & Society, 29(7), 1013-1030. Informa UK Limited.
    Type: Article DOI: 10.1080/09687599.2014.902357 OpenAlex: https://openalex.org/W1972484219
    Crossref OpenAlex OpenCitations
  2. Jacquiline den Houting * , Elizabeth Pellicano (2019). A Portfolio Analysis of Autism Research Funding in Australia, 2008–2017 . Journal of Autism and Developmental Disorders, 49(11), 4400-4408. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-04155-1 OpenAlex: https://openalex.org/W2966196890
    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
  3. Mike Oliver (1986). Social Policy and Disability: Some Theoretical Issues . Disability, Handicap & Society, 1(1), 5-17. Informa UK Limited.
    Type: Article DOI: 10.1080/02674648666780021 OpenAlex: https://openalex.org/W2065412941
    Crossref OpenAlex OpenCitations
  4. Virginia Braun , Victoria Clarke (2006). Using thematic analysis in psychology . Qualitative Research in Psychology, 3(2), 77-101. Informa UK Limited.
    Type: Article DOI: 10.1191/1478088706qp063oa OpenAlex: https://openalex.org/W1979290264
    Crossref OpenAlex OpenCitations
  6. Katherine McDonald , Nicole M. Schwartz , Colleen M. Gibbons , Robert S. Olick (2015). “You Can’t be Cold and Scientific” . Journal of Empirical Research on Human Research Ethics, 10(2), 196-208. SAGE Publications.
    Type: Article DOI: 10.1177/1556264615575512 OpenAlex: https://openalex.org/W2101336837
    Crossref OpenAlex OpenCitations
  7. Catherine E. Burnette , Sara Sanders , Howard K. Butcher , Jacki T. Rand (2014). A Toolkit for Ethical and Culturally Sensitive Research: An Application with Indigenous Communities . Ethics and Social Welfare, 8(4), 364-382. Informa UK Limited.
    Type: Article DOI: 10.1080/17496535.2014.885987 OpenAlex: https://openalex.org/W2006031468
    Crossref OpenAlex OpenCitations
  14. M. Ariel Cascio , Jonathan A. Weiss , Éric Racine , and the Autism Research Ethics Task Force (2020). Person-oriented ethics for autism research: Creating best practices through engagement with autism and autistic communities . Autism, 24(7), 1676-1690. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320918763 OpenAlex: https://openalex.org/W3036990083
    Crossref OpenAlex OpenCitations
  15. Becca Lory (2019). For the Love of Science? Autism in Adulthood, 1(1), 12-14. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2018.0005 OpenAlex: https://openalex.org/W2801676297
    Crossref OpenAlex OpenCitations
  16. Virginia Braun , Victoria Clarke (2019). Reflecting on reflexive thematic analysis . Qualitative Research in Sport, Exercise and Health, 11(4), 589-597. Informa UK Limited.
    Type: Article DOI: 10.1080/2159676x.2019.1628806 OpenAlex: https://openalex.org/W2950504429
    Crossref OpenAlex OpenCitations
  17. Laura Crane , Katie L. Maras , Tamsyn Hawken , Sue Mulcahy , Amina Memon (2016). Experiences of Autism Spectrum Disorder and Policing in England and Wales: Surveying Police and the Autism Community . Journal of Autism and Developmental Disorders, 46(6), 2028-2041. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-016-2729-1 OpenAlex: https://openalex.org/W2272938176
    Crossref OpenAlex OpenCitations
  18. Ginny Russell , Will Mandy , Daisy Elliott , Rhianna White , Tom Pittwood , Tamsin Ford (2019). Selection bias on intellectual ability in autism research: a cross-sectional review and meta-analysis . Molecular Autism, 10(1), 9. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13229-019-0260-x OpenAlex: https://openalex.org/W2927010782
    Crossref OpenAlex OpenCitations
  20. Lorelli S. Nowell , Jill M. Norris , Deborah E. White , Nancy J. Moules (2017). Thematic Analysis . International Journal of Qualitative Methods, 16(1). SAGE Publications.
    Type: Article DOI: 10.1177/1609406917733847 OpenAlex: https://openalex.org/W2763766763
    Crossref OpenAlex OpenCitations
  21. Laura Crane , Fern Adams , Georgia Harper , Jack Welch , Elizabeth Pellicano (2019). ‘Something needs to change’: Mental health experiences of young autistic adults in England . Autism, 23(2), 477-493. SAGE Publications.
    Type: Article DOI: 10.1177/1362361318757048 OpenAlex: https://openalex.org/W2787370458
    Crossref OpenAlex OpenCitations
  23. MIKE OLIVER (2006). Social policy and disability: Some theoretical issues . In Overcoming Disabling Barriers (pp. 17-30). Routledge.
    Type: Book chapter DOI: 10.4324/9780203965030-9 OpenAlex: https://openalex.org/W4250115922
    OpenAlex