"There is nothing"-Exploring diagnostic and service access for autistic individuals in Uruguay: A qualitative study.

Abstract

Due to the higher autism research presence of higher-income countries, the known social and cultural experiences of families raising a child with autism are centered on their realities. This narrative overlooks the experiences of many families who do not fit this archetype, such as those residing in low- and middle-income countries, who are particularly challenged by the limited availability of trained professionals and barriers to accessing diagnosis and evidence-based treatments. That is the case in Latin American countries, such as Uruguay, where the present project transpires. By utilizing a Theory of Change framework, specifically developed to be used in low- and middle-income countries, the present study explores diagnostic and service barriers in Uruguay. The study included semi-structured interviews with caregivers of autistic individuals and key informants residing in Uruguay. Participants were selected using a purposive sample technique. Data analysis consisted of reflexive thematic analysis. Salient themes consisted of multiple barriers to diagnostic and service access due to a multistep process, limited awareness of autism characteristics, a hesitancy to provide a diagnosis, and few professionals who specialize in autism. For those residing outside the capital, additional difficulties were experienced.Lay AbstractCountries with higher monetary means to conduct research are able to have not only better knowledge of the realities of autistic individuals and their families but also better access to diagnostic and intervention services. In countries with lower income, there is limited understanding of autistic experiences and also issues with access to services due to multiple reasons, like services only being accessible in certain regions, few trained professionals, and long waitlists. This study seeks to understand possible diagnostic and service barriers experienced by autistic individuals residing in Uruguay. To understand the local realities, parents and specialists working with autistic individuals were interviewed, and the information gathered was analyzed by finding patterns that were used to form themes that included the shared experiences among participants. Some of the themes that were identified included reports of difficulties in accessing diagnosis and interventions, either because there were many steps needed to guarantee these services or because there was a limited awareness of autism spectrum disorder and its characteristics by providers, which resulted in a hesitation to diagnose. Also, participants described very few professionals who specialize in autism spectrum disorder. For those residing outside the capital, additional difficulties were experienced.