Cited by 223Autism Spectrum Disorder ResearchChild Nutrition and Feeding IssuesFamily and Disability Support Research

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Early Identification of Autism Spectrum Disorder Among Children Aged 4 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020

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Abstract

Problem/Condition: Autism spectrum disorder (ASD). Period Covered: 2020. Description of System: The Autism and Developmental Disabilities Monitoring Network is an active surveillance program that estimates prevalence and characteristics of ASD and monitors timing of ASD identification among children aged 4 and 8 years. In 2020, a total of 11 sites (located in Arizona, Arkansas, California, Georgia, Maryland, Minnesota, Missouri, New Jersey, Tennessee, Utah, and Wisconsin) conducted surveillance of ASD among children aged 4 and 8 years and suspected ASD among children aged 4 years. Surveillance included children who lived in the surveillance area at any time during 2020. Children were classified as having ASD if they ever received 1) an ASD diagnostic statement in an evaluation, 2) a special education classification of autism (eligibility), or 3) an ASD International Classification of Diseases (ICD) code (revisions 9 or 10). Children aged 4 years were classified as having suspected ASD if they did not meet the case definition for ASD but had a documented qualified professional's statement indicating a suspicion of ASD. This report focuses on children aged 4 years in 2020 compared with children aged 8 years in 2020. Results: For 2020, ASD prevalence among children aged 4 years varied across sites, from 12.7 per 1,000 children in Utah to 46.4 in California. The overall prevalence was 21.5 and was higher among boys than girls at every site. Compared with non-Hispanic White children, ASD prevalence was 1.8 times as high among Hispanic, 1.6 times as high among non-Hispanic Black, 1.4 times as high among Asian or Pacific Islander, and 1.2 times as high among multiracial children. Among the 58.3% of children aged 4 years with ASD and information on intellectual ability, 48.5% had an IQ score of ≤70 on their most recent IQ test or an examiner's statement of intellectual disability. Among children with a documented developmental evaluation, 78.0% were evaluated by age 36 months. Children aged 4 years had a higher cumulative incidence of ASD diagnosis or eligibility by age 48 months compared with children aged 8 years at all sites; risk ratios ranged from 1.3 in New Jersey and Utah to 2.0 in Tennessee. In the 6 months before the March 2020 COVID-19 pandemic declaration by the World Health Organization, there were 1,593 more evaluations and 1.89 more ASD identifications per 1,000 children aged 4 years than children aged 8 years received 4 years earlier. After the COVID-19 pandemic declaration, this pattern reversed: in the 6 months after pandemic onset, there were 217 fewer evaluations and 0.26 fewer identifications per 1,000 children aged 4 years than children aged 8 years received 4 years earlier. Patterns of evaluation and identification varied among sites, but there was not recovery to pre-COVID-19 pandemic levels by the end of 2020 at most sites or overall. For 2020, prevalence of suspected ASD ranged from 0.5 (California) to 10.4 (Arkansas) per 1,000 children aged 4 years, with an increase from 2018 at five sites (Arizona, Arkansas, Maryland, New Jersey, and Utah). Demographic and cognitive characteristics of children aged 4 years with suspected ASD were similar to children aged 4 years with ASD. Interpretation: A wide range of prevalence of ASD by age 4 years was observed, suggesting differences in early ASD identification practices among communities. At all sites, cumulative incidence of ASD by age 48 months among children aged 4 years was higher compared with children aged 8 years in 2020, indicating improvements in early identification of ASD. Higher numbers of evaluations and rates of identification were evident among children aged 4 years until the COVID-19 pandemic onset in 2020. Sustained lower levels of ASD evaluations and identification seen at a majority of sites after the pandemic onset could indicate disruptions in typical practices in evaluations and identification for health service providers and schools through the end of 2020. Sites with more recovery could indicate successful strategies to mitigate service interruption, such as pivoting to telehealth approaches for evaluation. Public Health Action: From 2016 through February of 2020, ASD evaluation and identification among the cohort of children aged 4 years was outpacing ASD evaluation and identification 4 years earlier (from 2012 until March 2016) among the cohort of children aged 8 years in 2020 . From 2016 to March 2020, ASD evaluation and identification among the cohort of children aged 4 years was outpacing that among children aged 8 years in 2020 from 2012 until March 2016. The disruptions in evaluation that coincided with the start of the COVID-19 pandemic and the increase in prevalence of suspected ASD in 2020 could have led to delays in ASD identification and interventions. Communities could evaluate the impact of these disruptions as children in affected cohorts age and consider strategies to mitigate service disruptions caused by fut

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TL;DR

In 2020, Autism and Developmental Disabilities Monitoring Network surveillance across 11 U.S. sites estimated ASD prevalence among children aged 4 years at 21.5 per 1,000, with wide site variation and higher prevalence among boys and several racial/ethnic minority groups. Early identification by age 48 months was higher among children aged 4 years than among children aged 8 years, but evaluations and identifications fell after the March 2020 COVID-19 pandemic declaration and had not fully recovered by the end of 2020 at most sites.

Key findings

  • Overall ASD prevalence among children aged 4 years was 21.5 per 1,000 (1 in 46), ranging from 12.7 per 1,000 in Utah to 46.4 in California. Prevalence was 32.3 per 1,000 among boys versus 10.4 among girls (male-to-female ratio 3.1).
  • By race and ethnicity, prevalence was highest among Hispanic children (28.7 per 1,000), followed by Black (25.3), Asian/Pacific Islander (23.5), multiracial (19.3), White (16.3), and American Indian/Alaska Native children (11.1). Compared with White children, prevalence was 1.8 times as high among Hispanic, 1.6 times as high among Black, 1.4 times as high among Asian/Pacific Islander, and 1.2 times as high among multiracial children.
  • Among the 58.3% of children aged 4 years with ASD who had intellectual ability information, 48.5% had an IQ score ≤70 or an examiner’s statement of intellectual disability. Among children with a documented developmental evaluation, 78.0% were evaluated by age 36 months.
  • Cumulative incidence of ASD diagnosis or eligibility by age 48 months was 17.5 per 1,000 among children aged 4 years versus 11.2 among children aged 8 years (1.6 times higher), with site risk ratios from 1.3 in New Jersey and Utah to 2.0 in Tennessee. In the 6 months before the March 2020 pandemic declaration, there were 1,593 more evaluations and 1.89 more ASD identifications per 1,000 children aged 4 years than children aged 8 years had 4 years earlier; in the 6 months after, there were 217 fewer evaluations and 0.26 fewer identifications per 1,000. Suspected ASD prevalence ranged from 0.5 per 1,000 in California to 10.4 in Arkansas and increased from 2018 at five sites.

Methods

  • Active surveillance was conducted in 11 sites in Arizona, Arkansas, California, Georgia, Maryland, Minnesota, Missouri, New Jersey, Tennessee, Utah, and Wisconsin among children aged 4 and 8 years in 2020. Children met the ASD case definition if records documented an ASD diagnostic statement, ASD special education eligibility, or an ASD ICD-9/ICD-10 code; suspected ASD was defined as a qualified professional’s statement of suspicion without meeting the ASD case definition.
  • Data came from health and education records, with denominators from U.S. Census 2021 county-level postcensal population estimates for 2020, adjusted for subcounty school districts at three sites using public school enrollment counts. Analyses calculated prevalence, prevalence ratios, cumulative incidence, and risk ratios using the Wilson score method for 95% CIs, with Mantel-Haenszel, chi-square, or Fisher tests for selected comparisons; R version 4.2.0 was used.
  • To assess COVID-19 impact, monthly counts of evaluations and earliest identification for children aged 4 years in 2016–2020 were compared with the same age windows for children aged 8 years in 2012–2016.

Limitations

  • The paper states four limitations: surveillance area populations are not necessarily generalizable to entire states or the United States; data quality depends on availability and completeness of records; sites or study areas could change between study years, complicating comparisons over time; and the surveillance case definition of intellectual disability is not the same as a clinical diagnosis, with IQ measurements in young children potentially unstable.
  • Evident from the text: intellectual ability information was available for only 58.3% of children aged 4 years with ASD, so co-occurring intellectual disability estimates are based on a subset. Also, comparisons between children with ASD and suspected ASD were among children seen for a developmental evaluation, so disparities in receiving evaluations could still exist.

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Integrity signals

Registry

Crossref · 10.15585/mmwr.ss7201a1

Cites

23 of 23 references verified0 citation errors · 0 not checkable

Statistics

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Figures

FIGURE 1 Euler diagram showing presence and overlap of case definition components among children aged 4 years with autism spectrum disorder (N = 4,896) — Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2020 Abbreviations: ASD = autism spectrum disorder; ICD = International Classification of Diseases.
FIGURE 1 Euler diagram showing presence and overlap of case definition components among children aged 4 years with autism spectrum disorder (N = 4,896) — Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2020 Abbreviations: ASD = autism spectrum disorder; ICD = International Classification of Diseases.CC0 · PubMed Central
FIGURE 2 Cumulative incidence* of autism spectrum disorder diagnosis or autism special education classification (eligibility) among children aged 4 or 8 years, by month of age at identification — Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2020 *Per 1,000 children aged 4 or 8 years.
FIGURE 2 Cumulative incidence* of autism spectrum disorder diagnosis or autism special education classification (eligibility) among children aged 4 or 8 years, by month of age at identification — Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2020 *Per 1,000 children aged 4 or 8 years.CC0 · PubMed Central
FIGURE 3 Difference in number of developmental evaluations and incidence* of autism spectrum disorder identification among children aged 4 years in 2020 during calendar years 2016–2020 and children aged 8 years in 2020 during calendar years 2012–2016, by month†— Autism and Developmental Disabilities Monitoring Network, 11 sites, United States *Per 1,000 children aged 4 years. † For children aged 4 years, year 0 to year 4 represents 2016–2020; for children aged 8 years, year 0 to year 4 represents 2012–2016. The dashed line shows the comparison at pandemic onset for children aged 4 years.
FIGURE 3 Difference in number of developmental evaluations and incidence* of autism spectrum disorder identification among children aged 4 years in 2020 during calendar years 2016–2020 and children aged 8 years in 2020 during calendar years 2012–2016, by month†— Autism and Developmental Disabilities Monitoring Network, 11 sites, United States *Per 1,000 children aged 4 years. † For children aged 4 years, year 0 to year 4 represents 2016–2020; for children aged 8 years, year 0 to year 4 represents 2012–2016. The dashed line shows the comparison at pandemic onset for children aged 4 years.CC0 · PubMed Central
FIGURE 4 Prevalence* of autism spectrum disorder and suspected autism spectrum disorder among children aged 4 years — Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2020 Abbreviation: Autism spectrum disorder. *Per 1,000 children aged 4 years.
FIGURE 4 Prevalence* of autism spectrum disorder and suspected autism spectrum disorder among children aged 4 years — Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2020 Abbreviation: Autism spectrum disorder. *Per 1,000 children aged 4 years.CC0 · PubMed Central
FIGURE 5 Prevalence* of suspected autism spectrum disorder among children aged 4 years — Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2018 and 2020† *Per 1,000 children aged 4 years. † Higher if 2020 to 2018 prevalence ratio 95% CI excludes 1.0.
FIGURE 5 Prevalence* of suspected autism spectrum disorder among children aged 4 years — Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2018 and 2020† *Per 1,000 children aged 4 years. † Higher if 2020 to 2018 prevalence ratio 95% CI excludes 1.0.CC0 · PubMed Central

Verification

Claims the paper makes

53 Own result · 16 Own interpretation · 14 Not checked yet · 9 Own method · 6 No basis given

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  • It may state two separate claims as one. 34
  • Probably not a substantial claim. 17
45 of 45
  • The paper relies on this without support.

    The 8-year-old cohort's evaluation and identification patterns 4 years earlier provide a valid counterfactual for what the 4-year-old cohort would have experienced absent the COVID-19 pandemic.

    “To compare the same age windows by calendar month, the numbers of evaluations and incidence of identification from 2012 (year 0) through 2016 (year 4) for children aged 8 years was subtracted from the same months during 2016 (year 0) through 2020 (year 4) for children aged 4 years.”
  • The paper relies on this without support.

    Differences in ASD prevalence by age 4 years across communities reflect differences in early ASD identification practices rather than differences in the true occurrence of ASD.

    “A wide range of prevalence of ASD by age 4 years was observed, suggesting differences in early ASD identification practices among communities.”
  • The paper relies on this without support.

    Higher cumulative incidence of ASD by age 48 months among children aged 4 years compared with children aged 8 years in 2020 reflects improvements in early identification rather than other cohort differences.

    “At all sites, cumulative incidence of ASD by age 48 months among children aged 4 years was higher compared with children aged 8 years in 2020, indicating improvements in early identification of ASD.”
  • The paper relies on this without support.

    Earlier identification of ASD leads to better outcomes.

    “Because earlier identification could lead to better outcomes, follow-up of children suspected but not confirmed of having ASD could help minimize delays in identification and intervention.”
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Metadata

Authors
Shaw, K. A., Bilder, D. A., McArthur, D., Williams, A. R., Amoakohene, E., Bakian, A. V., Durkin, M. S., Fitzgerald, R. T., Furnier, S. M., Hughes, M. M., Pas, E. T., Salinas, A., Warren, Z., Williams, S., Esler, A., Grzybowski, A., Ladd-Acosta, C. M., Patrick, M., Zahorodny, W., Green, K. K., Hall-Lande, J., Lopez, M., Mancilla, K. C., Nguyen, R. H. N., Pierce, K., Schwenk, Y. D., Shenouda, J., Sidwell, K., Vehorn, A., DiRienzo, M., Gutierrez, J., Hallas, L., Hudson, A., Spivey, M. H., Pettygrove, S., Washington, A., & Maenner, M. J.
Affiliations
  • Centers for Disease Control and Prevention (US)
  • University of Utah (US)
  • University of Wisconsin–Madison (US)
  • Washington University in St. Louis (US)
  • Johns Hopkins University (US)
  • Vanderbilt University Medical Center (US)
  • University of Minnesota (US)
  • University of California San Diego (US)
  • Rutgers New Jersey Medical School (US)
  • University of Arkansas for Medical Sciences (US)
  • University of Arizona (US)
Corresponding author
Shaw, Kelly A.
Venue
MMWR. Surveillance Summaries
Published
2023-03-24
Volume
72
Issue
1
Pages
1-15
ISSN
  • 1545-8636 (ISSN-L)
  • 1546-0738
OpenAlex
W4360599455
Cited by
223
References
23
Citations by year
2026: 17 · 2025: 107 · 2024: 81 · 2023: 18
FWCI
33.32
Type
journal article
Language
en
Open access
Licence
public-domain
Locations
  • MMWR Surveillance Summaries (publishedVersion, public-domain)
  • PubMed Central (publishedVersion, public-domain)
  • PubMed (publishedVersion)
  • UA Campus Repository (The University of Arizona) (submittedVersion, public-domain)
Funders
Eunice Kennedy Shriver National Institute of Child Health and Human Development (P50HD103537)
Topics
  • Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
  • Health Sciences › Medicine › Psychiatry and Mental health › Child Nutrition and Feeding Issues
  • Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
Keywords
autism spectrum disorder, autism prevalence, early detection, special education eligibility, intellectual disability, sex differences, racial and ethnic disparities, developmental evaluation, cumulative incidence
MeSH terms
Autism Spectrum Disorder, COVID-19, Autistic Disorder, Child, Developmental Disabilities, Female, Humans, Male, Population Surveillance, United States, Utah, Prevalence, Pandemics

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