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

目前迫切需要改进自闭症谱系障碍(ASD)的早期发现，以便家庭能够尽早获得密集的、适当的干预服务。然而，研究表明，在美国，在自闭症儿童的识别和诊断方面存在着重要的种族和民族差异，这影响了获得服务的机会。来自发展中国家的有关自闭症的研究非常少。这项研究是对来自两个不同国家的两个不同文化背景的儿童--美国东南部的拉丁裔移民和南非夸祖鲁-纳塔尔省(KZN)的儿童--ASD早期社会交往标记物的基础研究。选择这两个地区是为了向未来在美国和其他发展中国家的不同人群中开展ASD流行病学研究提供信息。这项研究的儿童年龄从18个月到36个月不等。这项研究将使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以拉丁裔移民为主的15名儿童(ASD-US1)、来自KZN的15名最终被临床诊断为ASD(ASD-非洲)的非洲幼儿和来自佛罗里达州里昂县(ASD-US2)的匹配对照组儿童(ASD-US2)的ASD早期行为标志物。这三组患有自闭症的儿童将与每个地点(TD-US1、TD-US2、TD-US2)的典型发育(TD)儿童组进行比较。儿童将被招募到针对自闭症的筛查工具，以适应这些资源不足的环境。我们将首先举办一系列焦点小组，使筛查和诊断工具适应文化，并了解文化对儿童的期望和对包括自闭症在内的残疾的理解的影响。ASD的社交标记将在两种不同的视频记录观察方法中进行比较-使用系统抽样程序的结构化观察和日常活动的自然观察。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培养与ASD之间关系的信息，以促进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。这项研究研究对于我们的长期目标至关重要，即调整流行病学研究的筛查和诊断工具，并加强国内和全球合作，以便在资源匮乏的情况下建设能力，以便进行适当的可获得的早期干预。 公共卫生相关性：这项研究的预期结果将通过识别行为标记物来区分美国东南部年幼的拉丁裔儿童和来自夸祖鲁-纳塔尔的患有自闭症谱系障碍(ASD)的非洲儿童，以及这些文化中具有典型发育的儿童。研究培养与ASD的关系，对于促进ASD异质性的科学研究具有重要意义。文化差异可能在ASD的行为表型、照顾者对症状的识别和解释、父母关于评估和治疗的决定以及家庭和医疗系统之间的互动方面存在明显的差异。这项研究的结果将导致文化敏感的筛查和评估方法，可能会降低所有ASD儿童被诊断的年龄。

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.