Conducting Interviews with Autistic Older Adults; Methodological Reflections from a participant led interview research study

Title

Conducting Interviews with Autistic Older Adults; Methodological Reflections from a participant led interview research study.


Abstract
Background
In recent years there has been growing emphasis on the importance of qualitative research involving autistic ‘participants’. It is felt that high quality qualitative research involving autistic people themselves as opposed to proxy accounts which tends to be more common, is more appropriate and applicable. Autistic people can be viewed as the true experts in autism and as such evidently it is important that their experiences and insight should be explored and shared.
Currently there is a lack of qualitative research involving autistic people and an inadequate amount of published guidance available on how to ensure that the research process is accessible and equitable for autistic co-researchers.

Rationale

Presented are reflections from an in-depth interview study of methodological experiences and insights into conducting qualitative interviews WITH autistic people. Data were gathered from 20 separate in-depth interviews (where each of 10 autistic people were interviewed on two separate occasions). Interviews were conducted as part of a qualitative interview research project exploring the experiences of autistic older adults.
Drawing on the experience of both the autistic person being interviewed and the academic researcher, suggestions are made on adaptations/considerations that can be made to the research process to assist with accessibility.

Main points

Recommendations are made on how the process can be adapted in the following areas:
Documentation, managing expectations, location of interviews, ethical considerations, person-centred approach, power balance/imbalance, agreeing terminology/language, individual ways of working, reflective working, creating a structure, the researcher relationship, adaptation of environment, appropriate communication styles and strategies to minimise the impact of neurotypical analysis on autistic voices.

Conclusion:
Presented are the subtle differences in ways in which the research process can be managed and designed to make it accessible for autistic ‘participants’. Consideration and information gathering regarding specific individual’s needs can help to enable both researcher and autistic ‘participant’ to engage fully with the research and to aid effective and equitable communication. A secondary meeting to discuss analysis can help minimise the impact of neurotypical misinterpretation of autistic opinion and open and honest and direct communication can help to ensure better accessibility for the autistic ‘participant’.