Department of Psychiatry, School of Medicine, Washington University, St Louis, Missouri;
Contributed equally as co-first authors.
Pediatrics. 2020 Sep;146(3). doi: 10.1542/peds.2019-3629.
African American (AA) children affected by autism spectrum disorder (ASD) experience delays in diagnosis and obstacles to service access, as well as a disproportionate burden of intellectual disability (ID) as documented in surveillance data recently published by the US Centers for Disease Control and Prevention. Our objective in this study was to analyze data from the largest-available repository of diagnostic and phenotypic information on AA children with ASD, and to explore the wide variation in outcome within the cohort as a function of sociodemographic risk and specific obstacles to service access for the purpose of informing a national approach to resolution of these disparities.
Parents of 584 AA children with autism consecutively enrolled in the Autism Genetic Resource Exchange across 4 US data collection sites completed event history calendar interviews of the diagnostic odysseys for their children with ASD. These data were examined in relation to developmental outcomes of the children with autism and their unaffected siblings.
The average age of ASD diagnosis was 64.9 months (±49.6), on average 42.3 months (±45.1) after parents' first concerns about their children's development. The relationship between timing of diagnosis and ASD severity was complex, and ID comorbidity was not predicted in a straightforward manner by familial factors associated with cognitive variation in the general population.
These findings document significant opportunity to expedite diagnosis, the need to further understand causes of ID comorbidity, and the necessity to identify effective approaches to the resolution of disparities in severity-of-outcome for AA children with autism.
非裔美国（AA）儿童受自闭症谱系障碍（ASD）影响，在诊断和服务获取方面存在延迟，以及智力障碍（ID）的负担不成比例，这在最近由美国疾病控制与预防中心发布的监测数据中有所记录。我们在这项研究中的目的是分析来自最大的 AA 自闭症儿童诊断和表型信息存储库的数据，并探讨队列中由于社会人口风险和服务获取的具体障碍而导致的结果的广泛差异，旨在为解决这些差异提供全国性的方法。
在 4 个美国数据收集点的自闭症基因资源交换中，连续招募了 584 名 AA 自闭症儿童的父母，他们完成了对其 ASD 儿童诊断历程的事件历史日历访谈。这些数据与自闭症儿童及其未受影响的兄弟姐妹的发育结果进行了检查。
ASD 的平均诊断年龄为 64.9 个月（±49.6），平均在父母首次关注孩子发育问题后的 42.3 个月（±45.1）后进行诊断。诊断时间与 ASD 严重程度之间的关系很复杂，并且 ID 共病不能通过与一般人群认知变化相关的家族因素以直接的方式预测。
这些发现记录了显著的加快诊断的机会，需要进一步了解 ID 共病的原因，以及识别解决 AA 自闭症儿童严重程度结果差异的有效方法的必要性。
