Experiences and needs of Chilean autistic communities for inclusion and well-being: a phenomenological study
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Department of Epidemiology and Health Studies, School of Speech and Language Pathology, Universidad de los Andes, Chile
School of Occupational Therapy, Universidad de los Andes, Chile
Universidad Catòlica de Temuco, Chile
Commautis, Chile
Publication date: 2023-04-27
Popul. Med. 2023;5(Supplement):A1344
Background and Objective: The inclusion of the first-person perspective in the reflection of well-being issues that people on the autism spectrum (AS) faces is an essential aspect of the development of compelling, culturally relevant, and timely responses. However, most of these processes are carried out by neurotypical scholars. Few experiences exist worldwide that incorporate the vision of experts by experience in the research and decision-making processes in autism. Fewer experiences have been documented in Latin America. Due to the cultural and socio-economic differences that the region has concerning the Northern developed countries, revealing the perceptions of local autistic communities is essential. Accordingly, this study aimed to describe the experiences and needs of Chilean communities of people within the autism spectrum around three themes: social inclusion, supports, and accessibility. Methods: A phenomenological design was employed. Participants were selected according to four statuses: 1) caregivers of children on the AS, 2) adults on the AS, 3) directors of advocacy organizations, and 4) teachers of students on the AS. The participants were grouped by each status in each zone of the country (i.e., north, center, south, and southern) to participate in focus groups. The focus group information was transcribed for further thematic analysis. Results: Convergent data across participants revealed a great need for awareness, literacy, and education on autism issues for the general population in the communities. Also, more training of professionals and economic resources were stated as a need. Participants described all these elements as barriers that hinder autistic communities’ well-being and as priorities that need to be taken by the stakeholders. Conclusions: First-person perspectives provide relevant insights into the needs of communities. Further actions include strategies to address these needs through alliances with communities and the government.