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

Rozanna Lilley, Wenn Lawson, Gabrielle Hall, Joanne Mahony, Hayley Clapham, Melanie Heyworth, Samuel R.C. Arnold, Julian N. Trollor, Michael Yudell, Elizabeth Pellicano

Research output: Contribution to journalArticlepeer-review

Abstract

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.

Original languageEnglish (US)
JournalAutism
DOIs
StateAccepted/In press - 2021

Keywords

  • adults
  • autism
  • autistic identity
  • late diagnosis
  • masking
  • oral history
  • participatory research
  • self-identity
  • stigma
  • trauma

ASJC Scopus subject areas

  • Developmental and Educational Psychology

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