S1E7 The Great Listening Project: Autistic Voices Transform Research
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S1E7 The Great Listening Project: Autistic Voices Transform Research
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This podcast describes "The Great Listening Project," a groundbreaking research study that revolutionized autism research by prioritizing the voices of autistic adults. This project employed Patient Public Involvement (PPI) methodology, allowing fourteen autistic individuals to become collaborators in shaping research questions and language. By listening directly to their experiences regarding sensory sensitivities, attention challenges, and mental health, researchers developed a new, authentic vocabulary for discussing autism.
This collaborative approach led to insights into desired technological solutions, such as "alerts" and "guidance," demonstrating that meaningful progress comes from inclusion and understanding the lived realities of autistic people. The study ultimately advocates for a future where research is conducted "with" autistic adults, not just "for" them.