Uncovering the hidden histories of late-diagnosed autistic adults

Published February 2021

This co-produced project sought to preserve the stories of late-diagnosed adults and the lives they led before and after their diagnosis. The project team of autistic and non-autistic researchers co-designed and co-produced a study using oral history methods to investigate the life stories of 28 autistic people, aged between 45 and 72 years from diverse parts of Australia. It serves to preserve their stories of the lives they led before and after their diagnosis and to inform ways to support autistic people.

This study aimed to understand:

  • the consequences of living without an autism diagnosis
  • what instigates an autism diagnosis in mid-to-late adulthood
  • the perceived impact of receiving that diagnosis.

The main interviews produced an enormously rich set of life histories. Participants shared detailed stories of their lives, highlighting a number of overlapping interests. Working with the Autism CRC, these oral histories will be made available through a digital platform at a major university library. The transcripts and analysis will also be written-up in academic form jointly with a historian of public health, who has extensive experience with oral histories.