Autism community priorities in diverse low-resource settings: A country-wide scoping exercise in India

It is vital to directly engage with the autism community in order to develop better services and drive the research agenda. While some studies in high-income countries have mapped the priorities of the autism community, there is a severe dearth of such efforts in the global south. Five million autistic individuals are estimated to live in India alone, and there has been little effort to map their priorities. Moreover, studies in high-income countries focused largely on research priorities, and not so much on skills training and interventions. Keeping these needs in mind, we conducted an online survey followed by an in-depth conversation with parents of autistic children and autistic adults drawn from across India. We found that the respondents reported self-help skills to be the most important for training, as they considered it fundamental for every other aspect of life. Speech and language therapy was considered to be the highest intervention priority for this group, highlighting the importance of social communication. Mental health counselling was also considered to be a high priority, but several parents identified it as being more relevant for themselves rather than for their children. Within research, the topmost priority was to understand ways in which the community can better support autistic people. We hope that these findings will help researchers, policymakers and service providers to be able to make well-informed decisions, develop relevant services and shape future research.