Including autistic people inautism researchis crucial for several reasons. It ensures that research questions and methodologies are relevant to the lived experiences of autistic individuals, potentially leading to more meaningful outcomes.
Autistic involvement can enhance the quality and authenticity of data collected, as participants may feel more comfortable sharing with researchers who understand their experiences.
This approach also empowers the autistic community, giving them a voice in shaping the research that affects their lives.
Moreover, it can lead to new insights and perspectives that non-autistic researchers might overlook, ultimately contributing to a more comprehensive and nuancedunderstanding of autism.
Key Points
Rationale
While previous research has demonstrated the benefits of community involvement for researchers and community partners (Brett et al., 2014; Concannon et al., 2014), little is known about how participatory methods affect those being studied, particularly in autism research.
By focusing on late-diagnosed autistic adults, an underserved group in autism research (Lai & Baron-Cohen, 2015), this study aims to understand the value of coproduced research from the perspective of participants.
This approach aligns with calls for increased autistic involvement in research (den Houting, 2019; Milton et al., 2014) and addresses concerns about the disconnect between autism research and its real-world impact (Pellicano et al., 2014).
Method
The study employed aqualitative approachusing semi-structured interviews. Participants who had previously taken part in the Hidden Histories project, an oral history study of late-diagnosed autistic adults, were invited to reflect on their experiences.
Questions focused on participants’ motivations for sharing their life histories, their experiences of the interview process, and their overall impressions of the research project.
Interviews were recorded, transcribed, and analyzed using reflexive thematic analysis following Braun and Clarke’s (2006, 2019) method.
Sample
Twenty-five late-diagnosed autistic adults participated in the study. They ranged in age from 45 to 72 years (M = 52.2 years) and had received their autism or Asperger’s diagnosis, on average, at age 48.
The sample included 15 females, 8 males, 1 non-binary individual, and 1 person who preferred not to disclose their gender.
Participants were predominantly white, highly educated (84% had at least an undergraduate degree), and employed (76%).
They came from diverse parts of Australia, with 64% living in cities and the remainder in regional or remote areas.
Results
Four main themes emerged from the analysis:
The affordances of autistic space
Participants felt supported throughout the research process and appreciated the participatory nature of the study.
One participant stated, “It was always relaxed and very open and well communicated about what was going on and what the process was” [HH028].
Sharing life stories takes its toll
Despite feeling supported, participants found the process of sharing their life histories emotionally and physically draining.
One participant described it as “incredibly draining” [HH016] and “pretty intense” [HH011].
Being heard and acknowledged
Participants reported that sharing their stories fostered self-acceptance and helped them gain confidence.
One participant explained, “The more you can talk about it to people who understand, who aren’t almost questioning whether it’s valid, or aren’t we all a little bit autistic? The more I can talk about it to people who get it, the more my own acceptance is solidified” [HH005].
Research as advocacy
Many participants viewed their involvement as a form of advocacy for the autistic community.
One participant stated, “It was a key moment for me to stand up, actually, and be counted for a change” [HH033].
Insight and Depth
This study provides valuable insights into the benefits of participatory research approaches in autism studies.
By involving autistic researchers and prioritizing participants’ comfort and agency, the research created a safe space for authentic sharing.
The findings suggest that this approach not only enhances the quality of data collected but also has potential therapeutic benefits for participants.
The study highlights the importance of “insider researchers” in bridging the epistemological divide between researchers and the autistic community, challenging traditional power dynamics in research.
Strengths
This study had several strengths, including:
Limitations
This study also had several limitations, including:
Implications
The findings have significant implications for the conduct of autism research:
Conclusion
This study demonstrates the profound impact that participatory research approaches can have on autistic participants, researchers, and the quality of research itself.
By creating autistic-led spaces and valuing experiential expertise, researchers can enhance the relevance and authenticity of autism studies.
The findings highlight the need for continued efforts to bridge the epistemological divide between autism researchers and the autistic community.
Future research should explore the applicability of these approaches to more diverse autistic populations and research methodologies.
As the field of autism research evolves, it is crucial to recognize the complexity and sensitivity of autistic experiences and to prioritize meaningful involvement of autistic individuals in all aspects of research that affect their lives.
References
Primary reference
Pellicano, E., Lawson, W., Hall, G., Mahony, J., Lilley, R., Heyworth, M., Clapham, H., & Yudell, M. (2022). “I Knew She’d Get It, and Get Me”: Participants’ Perspectives of a Participatory Autism Research Project.Autism in Adulthood,4(2), 120-129.https://doi.org/10.1089/aut.2021.0039
Other references
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology.Qualitative Research in Psychology, 3(2), 77-101.
Braun, V., & Clarke, V. (2019). Reflecting on reflexive thematic analysis.Qualitative Research in Sport, Exercise and Health, 11(4), 589-597.
Brett, J. O., Staniszewska, S., Mockford, C., Herron‐Marx, S., Hughes, J., Tysall, C., & Suleman, R. (2014). Mapping the impact of patient and public involvement on health and social care research: a systematic review.Health expectations,17(5), 637-650.https://doi.org/10.1111/j.1369-7625.2012.00795.x
Concannon, T. W., Fuster, M., Saunders, T., Patel, K., Wong, J. B., Leslie, L. K., & Lau, J. (2014). A systematic review of stakeholder engagement in comparative effectiveness and patient-centered outcomes research.Journal of general internal medicine,29, 1692-1701.https://doi.org/10.1007/s11606-014-2878-x
den Houting, J. (2019). Neurodiversity: An insider’s perspective.Autism, 23(2), 271-273.
Lai, M. C., & Baron-Cohen, S. (2015). Identifying the lost generation of adults with autism spectrum conditions.The Lancet Psychiatry,2(11), 1013-1027.https://doi.org/10.1016/S2215-0366(15)00277-1
Milton, D., Mills, R., & Pellicano, E. (2014). Ethics and autism: Where is the autistic voice? Commentary on Post et al.Journal of autism and developmental disorders,44, 2650-2651.https://doi.org/10.1007/s10803-012-1739-x
Pellicano, E., Dinsmore, A., & Charman, T. (2014). What should autism research focus upon? Community views and priorities from the United Kingdom.Autism,18(7), 756-770.https://doi.org/10.1177/1362361314529627
Keep learning
Suggested Socratic questions for a college class discussion:
Saul McLeod, PhD
BSc (Hons) Psychology, MRes, PhD, University of Manchester
Saul McLeod, PhD., is a qualified psychology teacher with over 18 years of experience in further and higher education. He has been published in peer-reviewed journals, including the Journal of Clinical Psychology.
Olivia Guy-Evans, MSc
BSc (Hons) Psychology, MSc Psychology of Education
Olivia Guy-Evans is a writer and associate editor for Simply Psychology. She has previously worked in healthcare and educational sectors.
