Do young people with neurodevelopmental conditions participate in co-design workshops?

Co-design workshops bring together researchers and end-users—including young people with neurodevelopmental conditions—to shape study tools, methods, and materials. Recent research demonstrates that these workshops are not only feasible but also valuable for creating more inclusive and acceptable research protocols. Young participants with conditions such as autism, ADHD, and genetic neurodevelopmental disorders have contributed directly to designing sleep monitoring devices, cognitive tasks, and interview schedules.

What the research says

A 2024 study from the Sleep Detectives project established a Lived Experience Advisory Group (LEAP) with nine parents and 13 children and young people with neurodevelopmental copy number variants (ND-CNVs). Together, they co-designed two in-person family workshops to gather feedback on sleep monitoring devices, cognitive tasks, and the overall study protocol ⁴. This shows that young people with neurodevelopmental conditions can actively participate in co-design, not just as passive subjects but as collaborators.

Another 2024 paper describes the Framework for Remotely Enabled Co-Design with Young people (FREDY), which was applied with neurodiverse children in healthcare settings. The framework uses creative design methods to enable co-creation across diverse geographies and abilities, and it strengthened co-designer approval of both the process and the resulting product ⁸. This demonstrates that remote co-design can also be effective for neurodiverse youth.

Additionally, the RE-STAR programme co-developed a participatory approach with a Youth Researcher Panel (Y-RP) that included neurodivergent young people (those with ADHD and/or autism). They co-designed and co-delivered an interview schedule to study emotional experiences of adolescents with these diagnoses, and then co-analyzed the interviews. The evaluation involved reflections from all participants, showing deep involvement beyond mere consultation ⁹.

These examples illustrate that young people with neurodevelopmental conditions can meaningfully contribute to co-design workshops, leading to more relevant and acceptable research tools.

What to ask your doctor

• Are there any local research programs that involve young people with neurodevelopmental conditions in co-design workshops?
• How can my child or family participate in patient and public involvement activities for neurodevelopmental research?
• What types of support are typically provided to help young people with neurodevelopmental conditions engage in co-design?
• Are there remote options for co-design participation if in-person attendance is difficult?
• Can you recommend any resources or organizations that facilitate co-design with neurodiverse youth?