Early Social Communication Characteristics of ASD in Diverse Cultures in the US a

迫切需要改善对自闭症谱系障碍（ASD）的早期发现，以便家庭能够尽早获得密集、适当的干预服务。然而，研究表明，在美国自闭症儿童的识别和诊断中存在重要的种族和民族差异，这影响了服务的可及性。发展中国家对自闭症谱系障碍的研究很少。本研究是对来自美国东南部拉丁裔移民和南非夸祖鲁-纳塔尔省（KwaZulu-Natal， KZN）两个不同国家的两种不同文化的儿童ASD早期社会交际标志的基础研究。选择这两个地区是为了为未来美国和其他发展中国家不同人群的ASD流行病学研究提供信息。参与这项研究的儿童年龄在18到36个月之间。本研究将采用观察性病例对照研究设计，比较美国东南部佛罗里达州科利尔县（Collier County）主要拉丁裔移民人群中15名最终确诊为ASD的儿童（ASD- us1）、KZN地区15名最终临床诊断为ASD的非洲儿童（ASD- africa）以及来自佛罗里达州莱昂县（Leon County）的匹配对照儿童的ASD早期行为标记。被FIRST WORDS(R) Project （ASD- us2）诊断为ASD的患者。这三组自闭症儿童将与来自每个地区（TD- us1， TD-非洲，TD- US2）的正常发育（TD）儿童进行比较。招募的儿童将使用针对这些资源匮乏环境的自闭症特异性筛查工具。我们将首先进行一系列焦点小组讨论，以调整筛查和诊断工具，使其与文化相适应，并了解文化对儿童期望的影响，以及对包括ASD在内的残疾的理解。通过两种不同的视频记录观察方法，即采用系统抽样程序的结构化观察和日常活动的自然观察，对自闭症谱系障碍的社会交际标志进行比较。基于DSM-IV诊断标准的ASD临床诊断将由经验丰富的临床医生使用自闭症诊断观察表进行确认或排除。这些发现将提供有关文化与ASD之间关系的信息，以推进ASD异质性的科学研究，并对ASD的遗传和环境机制的研究具有重要意义。这项研究对于我们调整筛查和诊断工具用于流行病学研究以及加强国内和全球合作的长期目标至关重要，以便在资源匮乏的环境中建立可获得的适当早期干预的能力。

There is a pressing need to improve early detection of Autism Spectrum Disorders (ASD) so that families can access intensive, appropriate intervention services as early as possible. However, studies indicate that important racial and ethnic disparities exist in the identification and diagnosis of children with ASD in the US, which impact access to services. Very little research is available on ASD from developing countries. This research investigation is a foundational study of early social communication markers of ASD in children from two diverse cultures from two different countries- Latino immigrants in Southeastern US and the KwaZulu-Natal (KZN) province of South Africa. These two regions were selected to inform future epidemiological research on ASD in diverse populations both in the US and other developing countries. Children in this study will range from 18 to 36 months of age. This study will use an observational case-control research design to compare early behavioral markers of ASD in 15 children who end up with a confirmed diagnosis of ASD from a predominantly Latino immigrant population in Collier County, Florida in the southeastern US (ASD-US1), 15 young African children from KZN who end up with a clinical diagnosis of ASD (ASD-Africa), and matched control children from Leon County, Florida, who have been diagnosed with ASD by the FIRST WORDS(R) Project (ASD-US2). The three groups of children with ASD will be compared to groups of typically developing (TD) children from each site (TD-US1, TD-Africa, TD- US2). Children will be recruited with autism-specific screening tools adapted for these low-resource settings. We will first conduct a series of focus groups to adapt the screening and diagnostic tools to be culturally appropriate and to understand the influence of culture on expectations of children and understanding of disabilities including ASD. Social communication markers of ASD will be compared during two different video recorded observation methods-structured observations using systematic sampling procedures and naturalistic observations of everyday activities. A clinical diagnosis of ASD based on the DSM-IV diagnostic criteria will be confirmed or ruled out by experienced clinicians using the Autism Diagnostic Observation Schedule. These findings will provide information about the relationship between culture and ASD in order to advance science on the heterogeneity of ASD and have important implications for informing research on genetic and environmental mechanisms of ASD. This research study is pivotal to our long term aims of adapting screening and diagnostic tools for epidemiological research and strengthening in-country and global collaboration to build the capacity in low-resource settings for appropriate accessible early intervention. PUBLIC HEALTH RELEVANCE: The expected outcomes of this study will have significance for the field by identifying behavioral markers that distinguish young Latino children in the Southeastern US and African children from KwaZulu-Natal with Autism Spectrum Disorders (ASD) from children with typical development from those cultures. It is important to investigate the relationship between culture and ASD in order to advance science on the heterogeneity of ASD. Cultural differences may be evident in the behavioral phenotype of ASD, recognition and interpretation of symptoms by caregivers, the decisions parents make regarding evaluation and treatment, and interactions between families and the healthcare system. The results of this research will lead to culturally sensitive screening and evaluation methods that may decrease the age at which all children with ASD are diagnosed.