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Vanesa Domagala
Description of System: The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance program that provides estimates of the prevalence of ASD among children aged 8 years. In 2020, there were 11 ADDM Network sites across the United States (Arizona, Arkansas, California, Georgia, Maryland, Minnesota, Missouri, New Jersey, Tennessee, Utah, and Wisconsin). To ascertain ASD among children aged 8 years, ADDM Network staff review and abstract developmental evaluations and records from community medical and educational service providers. A child met the case definition if their record documented 1) an ASD diagnostic statement in an evaluation, 2) a classification of ASD in special education, or 3) an ASD International Classification of Diseases (ICD) code.
Results: For 2020, across all 11 ADDM sites, ASD prevalence per 1,000 children aged 8 years ranged from 23.1 in Maryland to 44.9 in California. The overall ASD prevalence was 27.6 per 1,000 (one in 36) children aged 8 years and was 3.8 times as prevalent among boys as among girls (43.0 versus 11.4). Overall, ASD prevalence was lower among non-Hispanic White children (24.3) and children of two or more races (22.9) than among non-Hispanic Black or African American (Black), Hispanic, and non-Hispanic Asian or Pacific Islander (A/PI) children (29.3, 31.6, and 33.4 respectively). ASD prevalence among non-Hispanic American Indian or Alaska Native (AI/AN) children (26.5) was similar to that of other racial and ethnic groups. ASD prevalence was associated with lower household income at three sites, with no association at the other sites.
Across sites, the ASD prevalence per 1,000 children aged 8 years based exclusively on documented ASD diagnostic statements was 20.6 (range = 17.1 in Wisconsin to 35.4 in California). Of the 6,245 children who met the ASD case definition, 74.7% had a documented diagnostic statement of ASD, 65.2% had a documented ASD special education classification, 71.6% had a documented ASD ICD code, and 37.4% had all three types of ASD indicators. The median age of earliest known ASD diagnosis was 49 months and ranged from 36 months in California to 59 months in Minnesota.
This report describes ASD prevalence and characteristics among children aged 8 years from 11 ADDM Network sites in 2020, including prevalence by site and demographic characteristics, median ages when children with ASD were first evaluated or identified, and the co-occurrence of intellectual disability. These data can be used by service providers, educators, communities, researchers, and policymakers to track trends and support efforts to ensure the equitable allocation of needed services and support for all children with ASD.
For 2020, the ADDM Network included 11 sites (Arizona, Arkansas, California, Georgia, Maryland, Minnesota, Missouri, New Jersey, Tennessee, Utah, and Wisconsin) that monitored ASD prevalence. Each site selected a geographic area of its state to monitor ASD among children aged 8 years (Table 1). Children included in this report were born in 2012 and lived in surveillance areas of the 11 sites during 2020. Sites were competitively funded and functioned as public health authorities under the Health Insurance Portability and Accountability Act of 1996 Privacy Rule and met applicable local institutional review board, privacy, and confidentiality requirements under 45 CFR 46 (14).
Children met the ASD case definition if they were aged 8 years in 2020 (born in 2012), lived in the surveillance area for at least 1 day during 2020, and had documentation in their records that they ever received 1) a written ASD diagnostic statement from a qualified professional, 2) a special education classification of autism (either primary exceptionality of ASD or an evaluation reporting criterion for autism eligibility was met) in public school, or 3) an ASD ICD code (ICD-9 codes between 299.00 and 299.99 or ICD-10 codes in the F84 range except for F84.2, Rett syndrome) obtained from administrative or billing information. Five children had an ICD code for Rett syndrome (F84.2) and no other indicators of ASD and did not meet the ASD case definition. ASD-related diagnostic conclusions (including suspected ASD or ruled out ASD) were collected verbatim from evaluations and were reviewed and classified by ADDM Network staff with clinical expertise at each site.
The overall ASD prevalence per 1,000 children aged 8 years was 27.6 (one in 36) and ranged from 23.1 in Maryland to 44.9 in California (Table 2). The overall male-to-female prevalence ratio was 3.8, with overall ASD prevalence of 43.0 among boys and 11.4 among girls. The same sites conducted ASD surveillance in 2018 and reported a combined prevalence of 23.0; however, certain sites changed their geographic areas or access to data sources for the current reporting period (Supplementary Table 1, ). The two sites with the largest relative changes (Missouri [48.5%] and Wisconsin [49.5%]) from 2018 to 2020 had increased access to education records in 2020 but no change in the geographic areas.
Overall, ASD prevalence per 1,000 children aged 8 years differed by racial and ethnic groups (Table 3); prevalence among White children (24.3) was lower than prevalence among Black, Hispanic, or A/PI children (29.3, 31.6, and 33.4, respectively). Among AI/AN children, ASD prevalence was 26.5 overall and was similar to other groups, but estimates met the 30% relative SE threshold for statistical precision in just one site (Arizona). ASD prevalence among children of two or more races was 22.9, which was not different than among White children but was lower than prevalence among AP/I, Black, and Hispanic children. Missouri was the only site in which White children had higher ASD prevalence than another racial or ethnic group (White compared with two or more races). Additional prevalence ratios comparing racial and ethnic groups are available (Supplementary Table 2, ). Prevalence calculations using the bridged-race denominator racial and ethnic categories used in previous reports (Supplementary Table 3, ) yielded similar findings of lower ASD prevalence among White children compared with that among Asian, Black, and Hispanic children.
The percentage of children with diagnostic statements, special education classifications, and ICD codes varied by site (Table 4). Across sites, the percentage of children with ASD who had a documented ASD diagnostic statement was 74.7% overall (range = 60.9% in Wisconsin to 94.7% in New Jersey). ASD prevalence per 1,000 children aged 8 years based exclusively on documented ASD diagnostic statements was 20.6 overall (range = 17.1 in Wisconsin to 35.4 in California) (Figure 2). The overall percentage of children with ASD who had a documented ASD special education classification was 65.2% (range = 44.9% in Utah to 84.9% in Minnesota) (Table 4). The percentage of children with ASD who had a documented ICD code was 71.6% (range = 51.9% in Minnesota to 82.7% in California). A majority of (74.2%) children with ASD had at least two of the three types of ASD identification documented in their records (i.e., ASD diagnostic statement, special education classification, and ASD ICD code) and 37.4% had all three (Figure 3). A majority of children with an ICD code (89.5% of 4,472 children) also had a documented ASD diagnostic statement or ASD special education classification; among all children with ASD, few (7.5% of 6,245 children) met the case definition through having an ICD code only. A majority of children with documents indicating an ASD diagnosis or ASD special education classification had these mentioned multiple times in their records (overall median number of diagnoses documented: two; range: one in Tennessee to six in New Jersey; overall median special education classifications documented: four, site-specific medians ranging from two in Wisconsin and Tennessee to six in California) (Supplementary Table 4, ).
Among 5,744 children aged 8 years with ASD and recorded evaluations, 49% were evaluated by age 36 months (range = 38.5% in Utah to 59.5% in Maryland) (Table 6). The median age at first recorded evaluation ranged from 32 months in California to 44 months in Utah. Children with ASD with an intellectual disability were more likely to be evaluated by age 36 months compared with children with ASD without an intellectual disability (61.8% versus 46.0%).
Among the 4,663 children aged 8 years with ASD who had an evaluation containing an ASD diagnostic statement, the median age at earliest known diagnosis was 49 months (range = 36 months in California to 59 months in Minnesota) (Table 7). Children with ASD and intellectual disability had a lower median age at diagnosis (43 months) than children without an intellectual disability (53 months). When special education classifications of autism were considered with ASD diagnoses for earliest identification, 5,579 children with ASD were identified with a median age of 52 months (range = 39 months in California and New Jersey to 60 months in Arizona).
For 2020, the prevalence estimate of ASD per 1,000 children aged 8 years was 27.6 (range: 23.1 in Maryland to 44.9 in California), which is higher than previous estimates from the ADDM Network. For the first time, the overall ASD prevalence for girls was >1% (11.4); in contrast, the prevalence among boys had already been noted to be higher (11.5) in the first ADDM Network report in 2002 (4). The continued variability in prevalence across ADDM sites, as well as the shifting in differences between demographic groups, highlight an ongoing need to better understand the systems and practices that contribute to this variability.
In its earliest years, the ADDM Network consistently reported lower overall ASD prevalence among Black and Hispanic versus White children aged 8 years. The White-Black gap in ASD prevalence narrowed in 2014, and there was no overall difference in ASD prevalence in 2016 or 2018 (Supplementary Figure 1, ). ASD prevalence among Asian, Black, and Hispanic children was at least 30% higher in 2020 than 2018, and ASD prevalence among White children was 14.6% higher than in 2018. Although this was the first time the ADDM Network reported lower ASD prevalence among White children than among other groups for children aged 8 years, a similar pattern was observed among children aged 4 years in 2018 (18). In addition, similar patterns were reported in analyses of national special education data and of California Developmental Services data, illustrating the prevalence of ASD classifications among Black and Hispanic children catching up and eclipsing that of White children over time (19,20). These patterns might reflect improved screening, awareness, and access to services among historically underserved groups. ASD prevalence in 2020 also was associated with lower SES, the opposite of what was observed previously (13), further supporting progress in identifying children regardless of race and ethnic group. As evidence grows of increased access to identification, attention might shift to what factors, such as social determinants of health, could lead to higher rates of disability among certain populations.
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