It is important to engage young people with autism in research interviews

By Caitlin Harrington
School of Social Work and Human Services, The University of Queensland, Australia

Often young people with Autism Spectrum Disorders (ASD) are not included in research. Of studies that have included the views of young people with ASD, the focus is generally on reporting research results rather than sharing the strategies used to support young people to participate. There is a need for more researchers to report on the process used to develop their methods and the successful strategies used during their research.

What did you do in your research?
Eight young people with ASD were interviewed about their experiences of mainstream school. A number of strategies, including visual supports and a social story, were used to support their participation in the interviews. For example, the interviewer spent time with each of the participants, in their own home, prior to the interview, getting to know them. The social story adapted for this study included information about the upcoming interview, with the goal of familiarizing the young people with the upcoming process. In addition, the interviewer also adjusted her communication style based on the needs and abilities of the young person being interviewed for example by using simple language, avoiding figures of speech, giving concrete examples, rephrasing questions, and asking clarifying questions to ensure information was appropriately interpreted.

What did you find out?
If given the opportunity to participate, young people with ASD can provide rich and valuable insights into their own experiences. In this study, each interview lasted between 30-70 minutes. During these individual interviews, each young person with ASD discussed what they liked/disliked about school, what they did/did not get to do at school, and whether they felt like they fit in at their respective schools and why. In conclusion, researchers seeking to interview young people need an understanding of the potential impact of autism-related impairments and must be able to respond appropriately to these challenges. However, they also need to take the time to get to know each young person as an individual so that the approach used matches their unique needs and capabilities.

What are the take-home messages?
Listening to young people with ASD is important. Researchers can help support young people to have their say. Each young person is different. The supports used need to match their needs.

To learn more about these findings contact
Caitlin Harrington.

Full Journal Article
Harrington, C., Foster, M., Rodger, S., & Ashburner, J. (2014). Engaging young people with Autism Spectrum Disorder in research interviews. British Journal of Learning Disabilities, 42, 153–161.