“A way to be me”: Autobiographical reflections of late-diagnosed autistic adults

  • Rozanna Lilley (Speaker)

Activity: Talk or presentationPresentation


“A way to be me”: autobiographical reflections of late-diagnosed autistic adultsRozanna Lilley1, Wenn Lawson1,2, Gabriell Hall1,2, Joanne Mahony1,2, Samuel Arnold2,3, Julian Trollor2,3, Michael Yudell4, & Elizabeth Pellicano1,2 Affiliations 1. Macquarie School of Education, Macquarie University, Sydney, Australia2. Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane,  Queensland, Australia  3. Department of Developmental Disability Neuropsychiatry (3DN), UNSW Sydney,  NSW, Australia  4. Dornsife School of Public Health, Drexel University, Philadelphia, Pennsylvania, USAThis paper reports on an oral history study documenting the lives of late-diagnosed autistic adults in Australia. This qualitative study, co-produced with autistic researchers, offers insight into the lived experiences of autistic adults. Oral history methodology was utilized to understand the experiences of autistic adults who grew up in an era before autism was as well-known as it is now. Twenty-eight participants were recruited. All were born before 1975 and received a clinical autism diagnosis after the age of 35. All interviews (M length = 129 minutes) were conducted by autistic researchers, transcribed and then thematically analysed by a team of autistic and non-autistic researchers using the six-step process outlined by Braun and Clarke. The team met weekly to discuss coding, themes and subthemes to co-produce an iterative and reflexive analysis of the data. In the process, a rich thematic strand of self-reflections on processes of identity formation was identified across a range of contexts, including school, university and workplace settings, and personal experiences, including friendships and intimate relationships. For some, the sense of being “a square peg in a round hole” was related to not conforming to conventional gendered expectations. Masking and the reinvention of self at different biographical junctures was also thematically salient. These autobiographical accounts demonstrated a deep capacity for self-reflection, providing a valuable resource for exploring the variability of autistic experiences and the socio-historical contexts that shape individual biographies, including experiences of exclusion and valued opportunities lost due to a lack of support and understanding.
Period10 Dec 2020
Event titleAustralasian Society for Autism Research 2020 Conference
Event typeConference
LocationWellington, New ZealandShow on map
Degree of RecognitionInternational