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

美国不同文化中自闭症谱系障碍 (ASD) 的早期社会交往特征

• 批准号: 7844690
• 负责人: AMY M WETHERBY
• 金额: $ 23.82万
• 依托单位: FLORIDA STATE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-09-17 至 2011-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7844690
• 关键词: Africa; African; African American; Age; Age-Months; American; Analysis of Variance; Applications Grants; Autistic Disorder; Behavioral; Budgets; Caregivers; Characteristics; Child; Classification; Collaborations; Control Groups; Country; County; DSM-IV; Databases; Developed Countries; Developing Countries; Development; Diagnosis; Diagnostic; Early Diagnosis; Early treatment; Educational Background; Environment; Epidemiology; Europe; Evaluation; Expenditure; Family; Florida; Focus Groups; Future; Genetic; Genetic Risk; Health Services Accessibility; Healthcare Systems; Heterogeneity; Immigrant; Investigation; Latino; Lead; Light; Methods; Modeling; Outcome Study; Parents; Phenotype; Population; Population Heterogeneity; Prevention; Procedures; Process; Province; Public Health; Recovery; Recruitment Activity; Regression Analysis; Research; Research Design; Resources; Sampling; Schedule; Science; Screening procedure; Series; Services; Site; South Africa; Structure; Symptoms; Video Recording; autism spectrum disorder; base; case control; clinical Diagnosis; comparative; cost; design; disability; expectation; experience; improved; non-genetic; public health relevance; racial and ethnic disparities; research study; service intervention; social communication; socioeconomics; tool

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.

迫切需要改善自闭症谱系障碍（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，美国在自闭症谱系障碍儿童的识别和诊断方面存在重要的种族和民族差异，这影响了获得服务的机会。发展中国家对ASD的研究很少。这项研究调查是对来自两个不同国家的两种不同文化的儿童ASD早期社会沟通标志物的基础研究-美国东南部的拉丁裔移民和南非的夸祖鲁-纳塔尔省（KZN）。选择这两个地区是为了为美国和其他发展中国家不同人群中ASD的未来流行病学研究提供信息。本研究中的儿童年龄范围为18至36个月。本研究将采用观察性病例对照研究设计，比较15名来自美国东南部佛罗里达科利尔县以拉丁裔移民为主的ASD确诊儿童（ASD-US 1）、15名来自KZN的ASD临床诊断的非洲儿童（ASD-US 1）和15名来自KZN的ASD早期行为标志物。（ASD-Africa），以及来自佛罗里达莱昂县的匹配对照儿童，他们被FIRST WORDS（R）项目（ASD-US 2）诊断为ASD。将三组ASD儿童与每个研究中心的典型发育（TD）儿童组（TD-US 1、TD-非洲、TD-US 2）进行比较。儿童将被招募与自闭症特定的筛选工具，适合这些低资源的设置。我们将首先进行一系列的焦点小组，以适应筛查和诊断工具，以适应文化，并了解文化对儿童期望的影响和对残疾的理解，包括自闭症。ASD的社会沟通标记将在两种不同的视频记录的观察方法，结构化的意见，使用系统的抽样程序和日常活动的自然观察进行比较。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计划表进行确认或排除。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遗传和环境机制的研究具有重要意义。这项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，加强国内和全球合作，以建立在资源匮乏的环境中进行适当的早期干预的能力。 公共卫生关系：本研究的预期结果将具有重要意义的领域，通过确定行为标志物，区分年轻的拉丁裔儿童在美国东南部和非洲儿童从夸祖鲁-纳塔尔自闭症谱系障碍（ASD）的儿童从这些文化的典型发展。研究文化与ASD之间的关系对于促进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，父母对评估和治疗的决定以及家庭与医疗保健系统之间的相互作用方面很明显。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。