Montenegro Maria Cecilia, Garrido Gabriela, Feize Leyla, Talavera-Garza Liza, Villalobos Bianca T, Montiel-Nava Cecilia
The University of Texas Rio Grande Valley, USA.
Universidad de la República Uruguay, Uruguay.
Autism. 2025 Jun 17;29(10):13623613251345334. doi: 10.1177/13623613251345334.
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.
由于高收入国家在自闭症研究方面投入更多，目前已知的自闭症患儿家庭的社会和文化经历都以这些国家的实际情况为中心。这种叙述忽略了许多不符合这种模式的家庭的经历，比如那些生活在低收入和中等收入国家的家庭，他们面临着训练有素的专业人员数量有限以及诊断和循证治疗获取障碍等特殊挑战。乌拉圭等拉丁美洲国家就是这种情况，本项目正是在该国开展。通过运用专门为低收入和中等收入国家开发的变革理论框架，本研究探讨了乌拉圭的诊断和服务障碍。该研究包括对乌拉圭自闭症患者的照料者和关键信息提供者进行半结构化访谈。参与者采用立意抽样技术选取。数据分析采用反思性主题分析。突出的主题包括由于多步骤流程、对自闭症特征认识有限、诊断犹豫以及自闭症专科专业人员稀缺等导致的诊断和服务获取的多重障碍。对于居住在首都以外地区的人来说，还会遇到更多困难。
有更多资金进行研究的国家不仅能够更深入了解自闭症患者及其家庭的实际情况，还能更好地获得诊断和干预服务。在低收入国家，由于多种原因，如服务仅在某些地区可及、训练有素的专业人员稀缺以及等候名单过长等，对自闭症经历的了解有限，获取服务也存在问题。本研究旨在了解居住在乌拉圭的自闭症患者可能面临的诊断和服务障碍。为了解当地实际情况，对自闭症患者的家长和专业人员进行了访谈，并通过寻找模式来分析收集到的信息，这些模式用于形成主题，包括参与者之间的共同经历。确定的一些主题包括：诊断和干预获取困难的报告，原因要么是保证这些服务需要多个步骤，要么是提供者对自闭症谱系障碍及其特征认识有限，导致诊断犹豫。此外，参与者表示专门从事自闭症谱系障碍的专业人员非常少。对于居住在首都以外地区的人来说，还会遇到更多困难。
