Development of Autism-Inclusive Approaches for Everyday Life in a Participatory Process: From Challenges to Resolutions

PURPOSE: People on the autism spectrum encounter significant challenges in different activities of daily living. This paper presents the findings of a participatory research study that explores the potential of this approach to address the needs of individuals on the autism spectrum and outlines the outcomes emerging from the participatory process. METHODS: This participatory research project was grounded in the Open Innovation in Science framework. In different phases of the project, various participatory research methods were employed: advisor consultations, group discussions, questionnaires, and participatory working groups. As the core part of the participatory process, six working groups were formed, comprising people on the autism spectrum and other experts. These citizen scientists led all decision-making and implementation. RESULTS: A survey on challenges in the daily lives of people on the autism spectrum identified difficulties in social interaction, public transport, education, contact with public authorities, and the healthcare system. Based on these results, six working groups comprising 28 citizen scientists worked over a ten-month period to enhance the daily lives of individuals with autism by fostering greater inclusivity. The groups worked on the domains "Working Life", "Education", "Public Authority Contacts", "Shopping", "Healthcare System", and "Information, Networking, and Exchange". Among other outcomes, the working groups developed a toolbox of educational materials for schools and a map of autism-inclusive healthcare providers. CONCLUSION: The results of this project demonstrate the potential of community-driven initiatives in addressing the multifaceted needs of individuals on the autism spectrum and contribute to developing autism-inclusive environments across various domains of daily life.