In alliance with my Irish bestie Laura Maye, I finally managed to put out our fantastic review on how autistic adults are involved in the participatory design of technology. At the fucking CHI conference too WOOOOO.
Paper Summary
We scoped roughly six thousand papers and then got mad as hell that nobody was doing much WITH autistic folks (mostly FOR or ON spits) but still ended up with 11 great projects across 18 papers that actually did some great work. So we analysed those to understand current practices and identify opportunities for more meaningful participation of autistic adults in designing technologies that impact their lives.
The research reveals important insights about how the lived autistic perspective is harnessed in design processes, the infrastructures needed to enhance participation, and the various ways autistic adults contribute their expertise to technological development.
Key Findings
Our scoping review analysis reveals several critical insights:
- Mixed approaches to incorporating autistic perspectives: Projects varied significantly in how they positioned and utilized the lived experiences of autistic adults to guide technology choices and design directions
- Infrastructure matters for meaningful participation: Most successful projects employed specific accommodations such as multiple participation modes, tailored methodologies, and flexible communication approaches
- Multiple forms of expertise: Autistic adults contribute diverse types of knowledge beyond just their lived experience, including technical skills, research capabilities, and domain expertise
Abstract
Research in HCI and autism has become more focused on involving autistic adults in technological design. In this paper, we present the results of a scoping review analysis of 11 projects across 18 papers that focused on including autistic adults in the design of technology that impacts their lives. This paper contributes a deeper understanding of how autistic adults were involved in participatory design processes.
Our findings reveal mixed positions on how the lived autistic perspective was harnessed to direct the application of topics and technologies chosen. Most projects employed infrastructures to enhance participation (e.g., providing multiple modes to participate or employing a tailored methodology). We pose future opportunities for autistic involvement, for example, in topics and technologies where autistic research is employed (e.g., autism diagnosis and machine learning), reviewing the importance of formal diagnosis for inclusion, and harnessing the multiple expertise of autistic adults.
Future Opportunities
The review identifies several important directions for future work:
- Expanding involvement in autism-related technologies: Greater participation needed in areas like autism diagnosis tools and machine learning applications
- Reconsidering diagnostic requirements: Questioning whether formal autism diagnosis should be a prerequisite for participation in design processes
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Recognizing diverse expertise: Better acknowledgment and utilization of the multiple forms of expertise that autistic adults bring to design projects
- Paper: CHI 2025 Digital Library
- Conference: CHI 2025 Conference on Human Factors in Computing Systems
Citation
Laura Maye and Nicolai Brodersen Hansen. 2025. Involvement of Autistic Adults in the Participatory Design of Technology: A Scoping Review. In Proceedings of the 2025 CHI Conference on Human Factors in Computing Systems (CHI ‘25). Association for Computing Machinery, New York, NY, USA, Article 776, 17 pages. DOI: https://doi.org/10.1145/3706598.3713961
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