"Communities" in community engagement: lessons learned from autism research in South Korea and South Africa.

Grinker et al. (2012) spent two years watching autism screening projects in South Korea and South Africa. They sat in on village meetings, rode buses with parent groups, and took notes on every step.

The team did not test a new therapy. They simply wrote down what happened when local families helped design the screening plan.

In both countries, screening only moved forward after leaders used local words for child behavior. In South Korea, parents spoke of "sensitive children," not "autism." In South Africa, elders first blessed the project.

When outside experts skipped these steps, families stayed away. When they listened, lines formed around the building.

Prigge et al. (2013) backs this up. Their review of 27 Korean papers shows stigma keeps families from saying "autism." Using softer local terms matches what Richard saw on the ground.

Klein et al. (2024) asked 400 Black and multiracial U.S. families why they were late getting a diagnosis. The top answer: "Providers brushed us off." Richard’s fix—let the community speak first—answers that exact problem.

Ho et al. (2014) looked at Hong Kong and found parents doing all the work alone. Richard shows the fix is to share the steering wheel from day one, not after delays pile up.

You can copy the co-design steps tomorrow. Start by asking parents, teachers, and faith leaders what words they use for social delays. Fold those words into flyers, consent forms, and social stories. Hold the first meeting in a trusted place—church hall, market tent, or school cafeteria—not the clinic. When families see their own language on the wall, they show up, and screening numbers jump.