Involvement of Autistic Adults in the Participatory Design of Technology: A Scoping Review

Research Background and Issues

• Issues or Challenges: The authors highlight that autistic adults are often excluded from research when designing technologies that impact their lives. They emphasize the importance of involving autistic adults in technology design, yet many studies fail to adequately reflect their voices or needs. Additionally, most existing research focuses more on autistic children, neglecting the unique needs of adults.
• Significance of the Problem: The voices of the autism community are an indispensable part of the technology design field. Through participatory design processes, scientific research can avoid a single perspective, promote more balanced academic outcomes, and drive a shift in perception from "deficit" to "difference."
• Research Motivation and Related Work: Over the past decade, the HCI field has extensively studied the involvement of autistic children in technology design (e.g., tools for emotional expression, educational tools). However, research on technology design for autistic adults is scarce and often lacks depth of engagement. The authors propose that analyzing the overall structure of participatory design processes (rather than isolated activities) can help understand how technology can better serve autistic adults.

Solution

• Methods or Solutions: The authors adopt a comprehensive framework—Program Theory—to analyze research projects involving autistic adults in technology design. This approach systematically organizes research structures through "inputs" (resources), "processes" (activities and principles), and "outcomes" (short-term and long-term benefits).
• Innovations:
  • Introducing Program Theory into the analysis of participatory design processes to better understand how projects unfold, how design principles are implemented, and the long-term effects of the projects.
  • Re-examining the pathways of autistic adult participation, including how to effectively leverage their experiences and expertise.
• Implementation Steps and Techniques:
  1. Conduct a literature review of relevant studies from 2010 to 2023, selecting projects focused on the participation of autistic adults in technology design.
  2. Perform an in-depth analysis of 11 selected projects, using Program Theory to evaluate the roles of autistic adults, the design of activities, and underlying mechanisms in the participatory design process.
  3. Extract key themes and technologies in the field (e.g., VR, assistive diagnostics) through keyword analysis and explore areas that remain underrepresented.

Research Findings

• Specific Findings:

  • Identified 11 research projects covering themes such as emotional management, social interaction, educational transitions, and healthcare.
  • Proposed an analytical framework from participation methods to long-term impacts, revealing diverse pathways and mechanisms for autistic adults as participants in technology design.
  • Identified underexplored areas (e.g., applications of machine learning in autism diagnosis and brain imaging) and suggested directions for future research.

• Advantages:

  • This study uses Program Theory to organize participatory design processes, emphasizing the critical role of autistic adults in defining technology needs and design principles.
  • Compared to traditional design evaluation studies, this approach better identifies the connections between short-term outcomes and long-term impacts.
  • Supports designing technology from a neurodiversity perspective, ensuring designs are more aligned with the daily needs of autistic adults.

• Experimental or Evaluation Results:

  • Different projects demonstrated diverse participation strategies, with some offering customized activities (e.g., sensory co-adaptation in the PIUMA project) and others promoting participation through flexible options (e.g., the ASCmeI.T project).
  • Long-term effects included: enhancing autistic adults' confidence, self-expression, and social interaction skills; and creating infrastructures to support the autism community (e.g., open toolkits).

• Limitations and Future Directions:

  • Limitations include the short duration and limited resources of most participatory design projects, making it difficult to achieve long-term impacts.
  • Certain key technologies and topics (e.g., applications of artificial intelligence in autism diagnosis) remain unexplored, and future research should address these gaps.
  • The authors propose including more self-identified autistic individuals who are not formally diagnosed in the participatory process, while also exploring deeper and more sustained community relationship building.

In summary, the authors provide a detailed analysis revealing how participatory design can shape more inclusive technology development methods and offer clear directions for future research.