Uncovering the hidden histories of late-diagnosed autistic adults

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.

Aims:

1. To conduct oral history interviews with late-diagnosed autistic adults to document their lives lived before and after their diagnosis.
2. To understand how these individuals survived, thrived and potentially suffered without the support and community that often comes with an autism diagnosis.
3. To use this information to inform contemporary policies and practices to support the lives currently lived by autistic people.
4. To prepare these interviews to allow for future digital archiving, and therefore permanent access for future generations and communities.
5. To produce an oral history protocol to enable future contributions from within Australia and internationally.

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. 

This project was awarded the 2020 Autism CRC Awards for Achievement in Autism Spectrum Research for outstanding commitment to inclusive research practices.