Listening to children on the spectrum: exploring opportunities for meaningful interactions during research

Abstract

Children on the autism spectrum face significant barriers to having their views listened to in research. They sometimes have diverse and idiosyncratic ways of expressing themselves, and may find the demands of face-to-face research encounters overwhelming. Researchers must strive to offer opportunities for meaningful self-expression, and to improve the way they seek, and engage with, these children’s points of view. The ideas and expressions of children with autism are important and merit recognition and consideration. This thesis explores meaningful ways to engage with, and listen to, the views of children and young people on the spectrum in research contexts. Two interlinked qualitative studies were conducted to integrate expertise and experiences from researchers and children, and to explore better ways of conceptualising both sides of a research interaction. In the first study, twelve leading researchers in this field were interviewed about their experiences of engaging children on the spectrum in view-seeking research. The findings from this study highlight issues relating to: building rapport with the children; power dynamics between researcher and participant; communication and empathy; and meaningful research processes and outputs. In the second study, twelve children on the spectrum took part in view-seeking research about their school and playground environment, and reflected on their experience of taking part in the research. The children contributed their ideas through walking tours, photography, Lego models, and guided discussions with the researcher. The data from this study were then used to explore issues of self-expression and engagement with research. The findings illustrate how the different research activities and materials stimulated diverse modes of self-expression, and generated different kinds of insights into what the children wanted to share with the researcher, and what they liked and disliked about the research process. The findings also contribute to our understanding of how children may interact with their peers and surroundings during research encounters, and how this may affect their engagement with research. This research offers a unique contribution as it not only explores the dilemmas that have arisen in this field, but it also looks for opportunities to help researchers creatively and thoughtfully respond to any challenges they may face, in order to develop engagement with children who take part in research, and facilitate creative self-expression