Use of proxies in designing for and with autistic children: supporting friendship as a case study

Abstract

Participatory Design (PD) is an approach for designing new technologies which involves end users in the design process. It is generally accepted that involving users in the design process gives them a sense of ownership over the final product which enhances its usability and acceptance by the target population. Employing a PD approach can introduce multiple challenges especially when working with autistic children. Many approaches for involving autistic children and children with special needs were developed to address these challenges. However, these frameworks introduce their own limitations as well. There is an ethical dilemma to consider in the involvement of autistic children in the design process. Although we established the ethical benefit of involving children, we did not address the ethical issues that will result from involving them in these research projects. Among other issues, the nature of design workshops we as a community currently run require working with unfamiliar researchers and communicating with them while social and communication differences are one of the main diagnostic criteria for autism. When designing for autistic children and other vulnerable populations an alternative (or most often an additional) approach is designing with proxies. Proxies for the child can be one of several groups of other stakeholders, such as: teachers, parents and siblings. Each of these groups may inform the design process, from their particular perspective, and as proxies for the target group of autistic children. Decisions need to be made about what stages in the design process are suited to their participation, and the role they play in each case. For this reason, we explore the role of teachers, parents, autistic adults and neurotypical children as proxies in the design process.

To explore the roles of proxies we chose friendship between autistic and neurotypical children as the context we are designing for. We are interested in understanding the nature of children's friendships and the potential for technology to support them. Although children themselves are the ones who experience friendship and challenges around its development and peer interaction, they might find it difficult to articulate the challenges they face. Furthermore, it is unrealistic to expect children to identify strategies to help them overcome the challenges with friendship development that they are facing as it assumes children have the social skills to come up with these strategies in the first place. Hence, it is necessary in this context to consider proxies who can identify challenges and suggest ways to overcome them.