National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA, USA.
Commissioned Corps, US Public Health Service, Rockville, MD, USA.
Public Health Rep. 2023 Nov-Dec;138(6):971-980. doi: 10.1177/00333549231163551. Epub 2023 Apr 19.
Autism spectrum disorder (autism) is a heterogeneous condition that poses challenges in describing the needs of individuals with autism and making prognoses about future outcomes. We applied a newly proposed definition of profound autism to surveillance data to estimate the percentage of children with autism who have profound autism and describe their sociodemographic and clinical characteristics.
We analyzed population-based surveillance data from the Autism and Developmental Disabilities Monitoring Network for 20 135 children aged 8 years with autism during 2000-2016. Children were classified as having profound autism if they were nonverbal, were minimally verbal, or had an intelligence quotient <50.
The percentage of 8-year-old children with profound autism among those with autism was 26.7%. Compared with children with non-profound autism, children with profound autism were more likely to be female, from racial and ethnic minority groups, of low socioeconomic status, born preterm or with low birth weight; have self-injurious behaviors; have seizure disorders; and have lower adaptive scores. In 2016, the prevalence of profound autism was 4.6 per 1000 8-year-olds. The prevalence ratio (PR) of profound autism was higher among non-Hispanic Asian/Native Hawaiian/Other Pacific Islander (PR = 1.55; 95 CI, 1.38-1.73), non-Hispanic Black (PR = 1.76; 95% CI, 1.67-1.86), and Hispanic (PR = 1.50; 95% CI, 0.88-1.26) children than among non-Hispanic White children.
As the population of children with autism continues to change, describing and quantifying the population with profound autism is important for planning. Policies and programs could consider the needs of people with profound autism across the life span to ensure their needs are met.
自闭症谱系障碍（自闭症）是一种异质性疾病，在描述自闭症患者的需求和预测未来结果方面存在挑战。我们应用新提出的重度自闭症定义对监测数据进行分析，以估计自闭症儿童中患有重度自闭症的比例，并描述其社会人口学和临床特征。
我们分析了 2000 年至 2016 年期间在自闭症和发育障碍监测网络中年龄为 8 岁且患有自闭症的 20135 名儿童的基于人群的监测数据。如果儿童为非言语、极轻度言语或智商<50，则将其归类为患有重度自闭症。
自闭症儿童中患有重度自闭症的比例为 26.7%。与非重度自闭症儿童相比，患有重度自闭症的儿童更可能为女性、来自种族和少数民族群体、社会经济地位较低、早产或出生体重较低；具有自伤行为；患有癫痫发作障碍；以及适应性评分较低。2016 年，重度自闭症的患病率为每 1000 名 8 岁儿童中有 4.6 例。非西班牙裔亚裔/夏威夷原住民/其他太平洋岛民（PR=1.55；95%CI，1.38-1.73）、非西班牙裔黑人（PR=1.76；95%CI，1.67-1.86）和西班牙裔（PR=1.50；95%CI，0.88-1.26）儿童中重度自闭症的患病率比值（PR）均高于非西班牙裔白人儿童。
随着自闭症儿童人口的持续变化，描述和量化患有重度自闭症的人群对于规划非常重要。政策和计划可以考虑到终身患有重度自闭症人群的需求，以确保满足他们的需求。
