Community engagement with individuals with lived experience of autism and intellectual disability to promote awareness and service utilisation for early identification and intervention: A scoping review

Community-based early detection and intervention for NDDs has increasingly received prominence in public health research. Despite diagnostic opportunities, limited awareness of child development, social support and standardised care pathways delays diagnoses and access to services. Engaging lived experiences builds trust, improves quality and access to care. However, there is limited synthesised knowledge on involving lived experiences, especially those of autistic individuals and their caregivers, in conceptualising community awareness to promote service utilisation. This scoping review reports on community-engaged research methodologies employed within community-based programs to build awareness to promote early identification and intervention . Studies after 1980 were included to follow the advocacy movement following deinstitutionalisation. Fifteen thousand and six hundred and seventy-three abstracts were screened, of which 66 were selected for full-text review and 16 met eligibility criteria. Studies were from the United States of America, the United Kingdom, Canada, Australia and Bangladesh. Caregivers supported identifying knowledge gaps and information preferences, while autistic voices amplified authentic experiences. Most studies used community-based participatory research and half utilised collaborative partnerships. Interviewing was used in six studies. Cultural adaptation for marginalised or underrepresented communities.was a key focus. With engagement occurring across disciplines, the nomenclature varies. Standardising community-engaged practices across community-based programmes may ensure appropriate representation across a range of cultural contexts.