“I Knew She'd Get It, and Get Me”: Participants' Perspectives of a Participatory Autism Research Project

Pellicano, Elizabeth; Lawson, Wenn; Hall, Gabrielle; Mahony, Joanne; Lilley, Rozanna; Heyworth, Melanie; Clapham, Hayley; Yudell, Michael

doi:10.1089/aut.2021.0039

Cited by 37 publications

(28 citation statements)

References 58 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…In stark contrast to these views, however, the narratives analysed here are remarkable for their nuanced reflections on internal states and temporally extended selves providing a rich resource for understanding more about the lives of autistic adults diagnosed in mid-to-late adulthood and the contexts prompting a changing sense of self across the lifespan. The specific use of oral history methods, which give voice and interpretive authority (see Hirsch, 1988) to autistic adults, coupled with our personcentred and participatory research processes (see Pellicano et al, 2021), may well have helped to reveal aspects of our interviewees' self-awareness and self-knowledge. Indeed, as Fasulo (2019) argues, it may be more productive for 'autistic research to dislodge itself from its normative standpoint and go meet autism on its own ground' (p. 624).…”

Section: Discussionmentioning

confidence: 99%

‘A way to be me’: Autobiographical reflections of autistic adults diagnosed in mid-to-late adulthood

Lilley

Lawson

Hall

et al. 2021

Autism

Self Cite

View full text Add to dashboard Cite

In this article, we report on an oral history study documenting the lives of autistic adults in Australia. This qualitative study, co-produced with autistic researchers, offers insight into the lived experiences of autistic adults diagnosed in mid-to-late adulthood. Oral history methodology was utilised to understand the experiences of autistic adults who grew up in an era before autism was well-known. The 26 interviewees were born before 1975, receiving a clinical autism diagnosis after age 35 years. All interviews were conducted by autistic researchers, transcribed and thematically analysed by a team of autistic and non-autistic researchers using the six-step process outlined by Braun and Clarke. We identified four themes relating to perceptions of the self: being different, exploring identity, the suffering self and being Autistic. Some interviewees reported a direct relationship between trauma, negative self-conceptions and suffering. For most, formal diagnosis had positive impacts on sense of self, contributing to a greater focus on strengths. Contra research suggesting autistic impairments in self-awareness, these interviewees demonstrated a deep capacity for self-reflection, highlighting the variability of autistic lives and the socio-historical contexts that shape individual biographies, including experiences of stigma and discrimination as well as the empowering potential of identifying as autistic. Lay abstract Using oral history methods, we interviewed and recorded 26 autistic adults in Australia about their life history. We wanted to better understand interviewees’ self-reflections about their lives. The interviewers were autistic researchers and the interviews were analysed by autistic and non-autistic researchers. All of the adults we interviewed were born before 1975 and formally identified as autistic after age 35 years. This group of people is sometimes referred to as ‘late-diagnosed autistic adults’. In general, there is not much research done about autistic adults and even less is known about those diagnosed late in life. In this article, we explore what these adults said about their sense of self and how that changed over time. These autistic adults told us about many negative experiences, including trauma, which had shaped how they think about themselves. For most, autism diagnosis had a very positive impact on their sense of self, allowing them to understand more about their own past and to feel good about their autistic identity. Previously some researchers have said that autistic people have a limited or impaired sense of self. Instead, our results show some autistic people can actually reflect deeply on their lives and their changing sense of self-identity over time.

show abstract

Section: Discussionmentioning

confidence: 99%

‘A way to be me’: Autobiographical reflections of autistic adults diagnosed in mid-to-late adulthood

Lilley

Lawson

Hall

et al. 2021

Autism

Self Cite

View full text Add to dashboard Cite

show abstract

“…To examine experiences of participatory research from the perspective of research participants, Pellicano et al (2022) interviewed autistic adults who had taken part in the Hidden Histories project, an oral history research project co-produced by a team of autistic and non-autistic researchers. Almost universally, participants in the Hidden Histories project felt that the involvement of autistic researchers had improved their experience as participants.…”

Section: Introductionmentioning

confidence: 99%

From ivory tower to inclusion: Stakeholders’ experiences of community engagement in Australian autism research

et al. 2022

Self Cite

View full text Add to dashboard Cite

Autistic people, and other community stakeholders, are gaining increasing recognition as valuable contributors to autism research, resulting in a growing corpus of participatory autism research. Yet, we know little about the ways in which stakeholders practice and experience community engagement in autism research. In this study, we interviewed 20 stakeholders (academics, autistic people, family members/careers, research students, and service providers) regarding their experiences of community engagement in Australian autism research. Through reflexive thematic analysis of interview data, we generated four themes. First, our participants perceived academia as an “ivory tower,” disconnected from community members’ lives and priorities. Second, our participants identified that different stakeholders tended to hold different roles within their research projects: academics typically retained power and control, while community members’ roles tended toward tokenism. Third, our participants spoke of the need to “bridge the gap” between academia and the community, highlighting communication, accessibility, and planning as key to conducting effective participatory research. Lastly, participants emphasized the changing nature of autism research, describing participatory research as “the way of the future.” Our findings reflect both the progress achieved to date, and the challenges that lie ahead, as the field advances toward genuine co-production of autism research.

show abstract

“…These concerns could lead to tokenism when community involvement is attempted 312 . Instead, researchers and community members need to appreciate that they each have different ‘experiential expertise’ 316 ; they must take that expertise seriously to enable valuable insights for those involved in the research and for the research itself 317 .…”

Section: Summary and Future Directionsmentioning

confidence: 99%

A capabilities approach to understanding and supporting autistic adulthood

et al. 2022

Self Cite

View full text Add to dashboard Cite

There is little comprehensive research into autistic adulthood, and even less into the services and supports that are most likely to foster flourishing adult autistic lives. This limited research is partly because autism is largely conceived as a condition of childhood, but this focus of research has also resulted from the orthodox scientific approach to autism, which conceptualizes autistic experience almost entirely as a series of biologically derived functional deficits. Approaching autism in this way severely limits what is known about this neurodevelopmental difference, how research is conducted and the services and supports available. In this Review, we adopt an alternative research strategy: we apply Martha Nussbaum’s capabilities approach, which focuses on ten core elements of a thriving human life, to research on autistic adulthood. In doing so, we identify areas where autistic adults thrive and where they often struggle, and highlight issues to which researchers, clinicians and policymakers should respond. The resulting picture is far more complex than conventional accounts of autism imply. It also reveals the importance of engaging autistic adults directly in the research process to make progress towards genuinely knowing autism and supporting flourishing autistic lives.

show abstract

“I Knew She'd Get It, and Get Me”: Participants' Perspectives of a Participatory Autism Research Project

Cited by 37 publications

References 58 publications

‘A way to be me’: Autobiographical reflections of autistic adults diagnosed in mid-to-late adulthood

‘A way to be me’: Autobiographical reflections of autistic adults diagnosed in mid-to-late adulthood

From ivory tower to inclusion: Stakeholders’ experiences of community engagement in Australian autism research

A capabilities approach to understanding and supporting autistic adulthood

Contact Info

Product

Resources

About