The 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.