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Market Research Group

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Henry Pestov
Henry Pestov


Description of System: The Autism and Developmental Disabilities Monitoring (ADDM) Network conducts active surveillance of ASD. This report focuses on the prevalence and characteristics of ASD among children aged 8 years in 2018 whose parents or guardians lived in 11 ADDM Network sites in 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. In 2018, children met the case definition if their records documented 1) an ASD diagnostic statement in an evaluation (diagnosis), 2) a special education classification of ASD (eligibility), or 3) an ASD International Classification of Diseases (ICD) code.


Results: For 2018, across all 11 ADDM sites, ASD prevalence per 1,000 children aged 8 years ranged from 16.5 in Missouri to 38.9 in California. The overall ASD prevalence was 23.0 per 1,000 (one in 44) children aged 8 years, and ASD was 4.2 times as prevalent among boys as among girls. Overall ASD prevalence was similar across racial and ethnic groups, except American Indian/Alaska Native children had higher ASD prevalence than non-Hispanic White (White) children (29.0 versus 21.2 per 1,000 children aged 8 years). At multiple sites, Hispanic children had lower ASD prevalence than White children (Arizona, Arkansas, Georgia, and Utah), and non-Hispanic Black (Black) children (Georgia and Minnesota). The associations between ASD prevalence and neighborhood-level median household income varied by site. Among the 5,058 children who met the ASD case definition, 75.8% had a diagnostic statement of ASD in an evaluation, 18.8% had an ASD special education classification or eligibility and no ASD diagnostic statement, and 5.4% had an ASD ICD code only. ASD prevalence per 1,000 children aged 8 years that was based exclusively on documented ASD diagnostic statements was 17.4 overall (range: 11.2 in Maryland to 29.9 in California). The median age of earliest known ASD diagnosis ranged from 36 months in California to 63 months in Minnesota.

Interpretation: In 2018, one in 44 children aged 8 years was estimated to have ASD, and prevalence and median age of identification varied widely across sites. Whereas overall ASD prevalence was similar by race and ethnicity, at certain sites Hispanic children were less likely to be identified as having ASD than White or Black children. The higher proportion of Black children compared with White and Hispanic children classified as having intellectual disability was consistent with previous findings.

This report provides updated data on ASD prevalence and characteristics among children aged 8 years from 11 ADDM Network sites in 2018, including prevalence by site, sex, race and ethnicity, and neighborhood socioeconomic status (SES). Children with ASD also are classified in terms of co-occurring intellectual disability (on the basis of cognitive test data), the number identified in medical and educational settings, median ages at first evaluation, and median ages at diagnosis. Health care and service providers, educators, researchers, and policymakers can use ADDM Network data to inform equitable allocation of services and support for children with ASD and their families.

For 2018, the ADDM Network consisted of 11 sites (Arizona, Arkansas, California, Georgia, Maryland, Minnesota, Missouri, New Jersey, Tennessee, Utah, and Wisconsin). Sites were competitively funded, and each selected a contiguous geographic area of its state to monitor ASD among children aged 8 years (Table 1). Children included in the 2018 ADDM Network data were born in 2010 and had a parent or guardian who lived in surveillance areas of the 11 sites during 2018. All sites 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 (11).

Children met the ASD case definition if they were aged 8 years in 2018 (born in 2010), lived in the surveillance area for at least one day during 2018, and had documentation in health, service, or education records that they had ever received any of the following: 1) a written statement from a qualified professional (Supplementary Box, ) diagnosing ASD, 2) a special education classification of autism (either primary exceptionality of ASD or an evaluation concluding criteria 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) obtained from administrative or billing information. Six children with an ICD code for F84.2 (Rett syndrome) had no other indicators of ASD and did not meet the ASD case definition. ASD-related diagnostic conclusions (including instances when ASD was suspected or ruled out) were recorded verbatim from evaluations and were reviewed and confirmed by ADDM Network staff with clinical expertise at each site.

Population denominators were obtained from the National Center for Health Statistics vintage 2019 bridged-race postcensal population estimates for 2018 (14). Surveillance areas at four sites (Arizona, California, Minnesota, and New Jersey) comprised subcounty school districts, and public school enrollment counts were used to adjust the county population estimates described previously (10). When possible, sites linked data from children identified with ASD to birth certificate information from their state to obtain additional demographic information. Information about race and ethnicity was abstracted primarily from the medical or education records and, when missing, was augmented by birth certificate, administrative, or billing information. Children with race coded as other or multiracial were excluded from race-specific prevalence estimates, and the denominator data do not include those categories. Estimates for non-Hispanic American Indian/Alaska Native (AI/AN) children were not reported in most results because of small numbers.

In 2018, ASD prevalence per 1,000 children aged 8 years varied across the 11 ADDM Network sites, ranging from 16.5 in Missouri to 38.9 in California. The overall ASD prevalence estimate was one in 44 children aged 8 years. These estimates are higher than ADDM Network ASD prevalence estimates from previous surveillance years. However, changing surveillance catchment areas over time can complicate analysis of trends. In 2018, the lowest ASD prevalence estimate was 16.5 per 1,000 children aged 8 years in Missouri, which was similar to the overall ASD prevalence estimate in 2014 (9). The ADDM Network is the only surveillance program in the United States that provides information about ASD in specific communities, including estimates for demographic subgroups. The variability across ADDM Network sites offers an opportunity to compare local policies and models for diagnostic and intervention service delivery that could enhance ASD identification and provide more comprehensive support to persons with ASD.

Most of the data collection and record reviews for the ADDM Network surveillance year 2018 were conducted during the COVID-19 pandemic. Record reviews were limited at three sites because of physical access restrictions and a lack of remote or electronic access (Table 1). These restrictions resulted in less complete data for items that required manual chart review (e.g., evaluations, documented ASD diagnoses, and cognitive and adaptive tests). Children could meet the ASD case definition without a full record review if ASD ICD codes or ASD special education exceptionalities were initially transmitted by the data sources to the ADDM Network site. However, any indications of ASD that would only be available through a manual record review, such as ASD diagnostic statements in evaluations, would not be captured if a manual record review could not be completed, resulting in likely underascertainment of ASD cases. Overall, approximately 6% of ASD cases among children aged 8 years were only ascertained through a manual record review, although this percentage varied by site (Supplementary Table 2, ).

For the 2020 surveillance year, the ADDM Network continued data collection to monitor ASD prevalence among children aged 4 and 8 years with the same 11 sites. Therefore, it might be possible to assess changes or disruptions in evaluations or services caused by the COVID-19 pandemic. For surveillance years 2018 and 2020, five of the 11 sites collected information on children aged 16 years whose ASD cases were initially ascertained by ADDM Network surveillance at age 8 years. Seven of the ADDM Network sites conducted a pilot program of a low-cost statewide surveillance approach intended to estimate ASD prevalence at the county level by linking electronically available data (i.e., no manual record review). Standard demographic categories were adopted for surveillance year 2020 that documented race and ethnicity separately and included a multiracial category in the population denominator. This change allowed the ADDM Network to distinguish AI/AN children who are also Hispanic (previously coded only as Hispanic). Future analyses (potentially through more extensive data linkages) might be able to portray disparities more directly related to the receipt of specific ASD-related interventions or support.

Findings from the ADDM Network 2018 surveillance year highlight the variability in ASD prevalence and identification practices across communities and report an overall higher ASD prevalence than previous estimates from the ADDM Network. Research into the factors associated with the variability in ASD prevalence across communities and the higher proportion of intellectual disability among Black children with ASD is warranted. Progress is still needed in certain important areas, including the lower identification of ASD among Hispanic children versus other demographic groups. Evidence exists of persistent disparities for various subgroups. These findings emphasize the need for sustained efforts to reduce geographic, racial, and ethnic disparities in identification of and support for persons with ASD. 041b061a72


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