Roman-Urrestarazu Andres, Tyson Adele, Gatica-Bahamonde Gabriel, van Kessel Robin, Yang Justin, Mansilla Carola, Zuniga Isabel, Méndez-Fadol Alejandra, Larrain Blanca, Garcia Ricardo, Koch Damaris, Ford Tamsin, Groot Wim, Pavlova Milena, Czabanowska Katarzyna
Department of Psychiatry, University of Cambridge, UK.
Department of International Health, Faculty of Health, Medicine and Life Sciences, Maastricht University, The Netherlands.
Autism. 2025 Oct;29(10):2501-2512. doi: 10.1177/13623613251342310. Epub 2025 Aug 4.
Autism spectrum disorder prevalence estimates in Latin America have been limited by a lack of reliable data. This cohort study aimed to estimate autism spectrum disorder prevalence in Chile by linking school registries with electronic health records. Probabilistic data linking was conducted between the 2021 Chilean school registry and 2003-2015 health records from the Araucania Sur Health Service. Bayesian prevalence estimation was used, considering variables such as age, sex, immigration status, ethnicity and rurality. Autism spectrum disorder prevalence across 29 health services was analysed for students aged 6 to 18 years. Regression models assessed unmet needs for special education services, validated using Araucania Sur Health Service health records. The study included 3,056,306 pupils (51.34% boys; mean age 11.6 years), with 14,549 having autism spectrum disorder. The national standardized school prevalence was 0.46%. Boys had 6 times higher odds of receiving special education services support than girls. In Araucania Sur Health Service, the adjusted clinical prevalence from health records was 1.22%. The Bayesian projected national autism spectrum disorder prevalence was 1.31%. This study, the largest of its kind in Latin America, revealed a higher autism spectrum disorder prevalence than previously reported, with one in 76 children affected. Disparities were observed across sex, ethnicity and health services.Lay abstractThis project tried to understand how many children in Chile are affected by autism, as reliable data have been lacking not only in Chile but across much of Latin America. To do this, we carried out the largest autism prevalence study ever conducted in the region. We linked national school records from 2021 with over a decade of health records (2003-2015) from the Araucanía Sur Health Service in southern Chile. This allowed us to examine data from more than three million students aged 6 to 18 years across 29 health services. Our results revealed that around one in every 76 children may have autism - almost 3 times higher than what was reported in schools alone. We also found that boys were 6 times more likely than girls to receive special education support. Using advanced statistical modelling, we estimated a national autism prevalence rate of 1.31%. Importantly, we discovered disparities in diagnosis and access to support based on sex, ethnicity, immigration status and whether a child lived in a rural or urban area. These findings highlight the need for more inclusive and equitable approaches to autism identification and care across Chile. This research not only helps to fill a major data gap but also offers a model for how countries with limited resources can use existing administrative data to improve public health planning and educational support for children with autism.
拉丁美洲自闭症谱系障碍患病率的估计因缺乏可靠数据而受到限制。这项队列研究旨在通过将学校登记信息与电子健康记录相链接,来估计智利自闭症谱系障碍的患病率。在2021年智利学校登记信息与阿劳卡尼亚南部卫生服务局2003 - 2015年的健康记录之间进行了概率性数据链接。采用贝叶斯患病率估计方法,考虑了年龄、性别、移民身份、种族和农村地区等变量。对29个卫生服务机构中6至18岁学生的自闭症谱系障碍患病率进行了分析。回归模型评估了特殊教育服务未满足的需求,并通过阿劳卡尼亚南部卫生服务局的健康记录进行了验证。该研究纳入了3056306名学生(51.34%为男孩;平均年龄11.6岁),其中14549名患有自闭症谱系障碍。全国标准化学校患病率为0.46%。男孩获得特殊教育服务支持的几率是女孩的6倍。在阿劳卡尼亚南部卫生服务局,健康记录调整后的临床患病率为1.22%。贝叶斯预测的全国自闭症谱系障碍患病率为1.31%。这项拉丁美洲同类研究中规模最大的研究表明,自闭症谱系障碍患病率高于此前报告,每76名儿童中就有1人受影响。在性别、种族和卫生服务机构之间存在差异。
由于智利乃至拉丁美洲大部分地区都缺乏可靠数据,本项目试图了解智利有多少儿童受自闭症影响。为此,我们开展了该地区有史以来规模最大的自闭症患病率研究。我们将2021年的全国学校记录与智利南部阿劳卡尼亚南部卫生服务局十多年的健康记录(2003 - 2015年)相链接。这使我们能够检查来自29个卫生服务机构的300多万名6至18岁学生的数据。我们的结果显示,每76名儿童中约有1人可能患有自闭症——几乎是仅根据学校报告数字的3倍。我们还发现,男孩获得特殊教育支持的可能性是女孩的6倍。通过先进的统计建模,我们估计全国自闭症患病率为1.31%。重要的是,我们发现基于性别、种族、移民身份以及儿童居住在农村还是城市地区,在诊断和获得支持方面存在差异。这些发现凸显了智利在自闭症识别和护理方面需要更具包容性和公平性的方法。这项研究不仅有助于填补一个重大数据空白,还为资源有限的国家如何利用现有行政数据改善自闭症儿童的公共卫生规划和教育支持提供了一个范例。