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The study examined timing of autism spectrum disorder (ASD) identification in education versus health settings for 8-year-old children with ASD identified through records-based surveillance. The study also examined type of ASD symptoms noted within special education evaluations. Results indicated that children with records from only education sources had a median time to identification of ASD over a year later than children with records from health sources. Black children were more likely than White children to have records from only education sources. Restricted and repetitive behaviors were less frequently documented in educational evaluations resulting in developmental delay eligibility compared to specific ASD eligibility among children with ASD. Future research could explore strategies reduce age of identification in educational settings and increase equitable access to health evaluations. [ABSTRACT FROM AUTHOR]

National Surveys of Children's Health (NSCH, 2016–2018) data were analyzed to determine if conjoint monitoring and screening showed stronger associations with children under 5 identified with ASD compared to monitoring alone, screening alone or no monitoring or screening; and investigate relationships between monitoring and screening across racial/ethnic subgroups. 86 of 332 children with ASD received their diagnosis in a timeframe suggesting potential monitoring and screening for identification purposes. Analyses showed that conjoint monitoring and screening and monitoring alone, but not screening alone, was associated with early identified ASD cases across race groups. Caution is warranted as interpreting NSCH monitoring and screening items solely for identification purposes is inaccurate in many cases. More research on monitoring with screening is needed. [ABSTRACT FROM AUTHOR]

This study examined the phenotypic profiles of children aged 30-68 months in the Study to Explore Early Development (SEED). Children classified as autism spectrum disorder (ASD), developmental delay (DD) with ASD symptoms, DD without ASD symptoms, and population comparison (POP) differed significantly from each other on cognitive, adaptive, behavioral, and social functioning and the presence of parent-reported conditions. Children with ASD and DD with ASD symptoms had mild to severe ASD risk on several measures compared to children with other DD and POP who had little ASD risk across measures. We conclude that children in SEED have varying degrees of ASD impairment and associated deficits. SEED thus provides a valuable sample to explore ASD phenotypes and inform risk factor analyses. [ABSTRACT FROM AUTHOR]

We examined prevalence of diagnosed autism spectrum disorder (ASD) and age at diagnosis according to child's race/ethnicity and primary household language. From the 2009-2010 National Survey of Children with Special Health Care Needs, we identified 2729 3-17-year-old US children whose parent reported a current ASD diagnosis. We compared ASD prevalence, mean diagnosis age, and percentage with later diagnoses (≥5 years) across racial/ethnic/primary household language groups: non-Hispanic-white, any language (NHW); non-Hispanic-black, any language (NHB); Hispanic-any-race, English (Hispanic-English); and Hispanic-any-race, other language (Hispanic-Other). We assessed findings by parent-reported ASD severity level and adjusted for family sociodemographics. ASD prevalence estimates were 15.3 (NHW), 10.4 (NHB), 14.1 (Hispanic-English), and 5.2 (Hispanic-Other) per 1000 children. Mean diagnosis age was comparable across racial/ethnic/language groups for 3-4-year-olds. For 5-17-year-olds, diagnosis age varied by race/ethnicity/language and also by ASD severity. In this group, NHW children with mild/moderate ASD had a significantly higher proportion (50.8 %) of later diagnoses than NHB (33.5 %) or Hispanic-Other children (18.0 %). However, NHW children with severe ASD had a comparable or lower (albeit non-significant) proportion (16.4 %) of later diagnoses than NHB (37.8 %), Hispanic-English (30.8 %), and Hispanic-Other children (12.0 %). While NHW children have comparable ASD prevalence and diagnosis age distributions as Hispanic-English children, they have both higher prevalence and proportion of later diagnoses than NHB and Hispanic-Other children. The diagnosis age findings were limited to mild/moderate cases only. Thus, the prevalence disparity might be primarily driven by under-representation (potentially under-identification) of older children with mild/moderate ASD in the two minority groups. [ABSTRACT FROM AUTHOR]

The article presents a study which investigates the screening for developmental disabilities in young children based on the National Survey of Children's Health as of 2007 in U.S. Topics discussed include early childhood development, several developmental disabilities, which include language or learning disorders, blindness, and autism spectrum disorder (ASD), and role of public health in developmental screening.

Autism spectrum disorders (ASD) prevalence estimates derived from a single data source under-identify children and provide a biased profile of case characteristics. We analyzed characteristics of 1,919 children with ASD identified by the Autism and Developmental Disabilities Monitoring Network. Cases ascertained only at education sources were compared to those identified at health sources. 38 % were education-only. These were older at their earliest evaluation (54.5 vs. 42.0 months, p < 0.001) and earliest ASD diagnosis (62 vs. 53 months, p < 0.001). More lived in census blocks with lower adult education ( p < 0.001). Lower educational attainment of adults in census blocks of residence of education-only cases suggests disparities in access to clinical services with the schools providing crucial services to many families. [ABSTRACT FROM AUTHOR]

The purpose of the present study was to re-examine diagnostic data from a state-wide autism prevalence study (n = 489) conducted in the 1980s to investigate the impact of broader diagnostic criteria on autism spectrum disorder (ASD) case status. Sixty-four (59 %) of the 108 originally 'Diagnosed Not Autistic' met the current ASD case definition. The average IQ estimate in the newly identified group (IQ = 35.58; SD = 23.01) was significantly lower than in the original group (IQ = 56.19 SD = 21.21; t = 5.75; p < .0001). Today's diagnostic criteria applied to participants ascertained in the 1980s identified more cases of autism with intellectual disability. The current analysis puts this historic work into context and highlights differences in ascertainment between epidemiological studies performed decades ago and those of today. [ABSTRACT FROM AUTHOR]

Autism spectrum disorders (ASDs) are estimated to occur among about one percent of children in the United States. This estimate is in line with estimates from other industrialized countries. However, the identified prevalence of ASDs has increased significantly in a short time period based on data from multiple studies including the U.S. Centers for Disease Control and Prevention's (CDC) Autism and Develop-mental Disabilities Monitoring (ADDM) Network. Whether increases in ASD prevalence are partly attributable to a true increase in the risk of developing ASD or solely to changes in community awareness and identification patterns is not known. It is clear that more children are identified with an ASD now than in the past and the impact on individuals, families, and communities is significant. However, dis-entangling the many potential reasons for ASD prevalence increases has been challenging. Understanding the relative contribution of multiple factors such as variation in study methods, changes in diagnostic and community identification, and potential changes in risk factors is an important priority for the ADDM Network and for CDC. This article summarizes the discussion from a workshop that was co-sponsored by CDC and Autism Speaks as a forum for sharing knowledge and opinions of a diverse range of stakeholders about changes in ASD prevalence. Panelists discussed recommendations for building on existing infrastructure and developing new initiatives to better understand ASD trends. The information, research, and opinions shared during this workshop add to the knowledge base about ASD prevalence in an effort to stimulate further work to understand the multiple reasons behind increasing ASD prevalence. [ABSTRACT FROM AUTHOR]

The prevalence of autism spectrum disorders (ASD) from the 2007 National Survey of Children's Health (NSCH) was twice the 2003 NSCH estimate for autism. From each NSCH, we selected children born in the US from 1990 to 2000. We estimated autism prevalence within each 1-year birth cohort to hold genetic and non-genetic prenatal factors constant. Prevalence differences across surveys thus reflect survey measurement changes and/or external identification effects. In 2003, parents were asked whether their child was ever diagnosed with autism. In 2007, parents were asked whether their child was ever diagnosed with an ASD and whether s/he currently had an ASD. For the 1997-2000 birth cohorts (children aged 3-6 years in 2003 and 7-10 years in 2007), relative increases between 2003 autism estimates and 2007 ASD estimates were 200-600 %. For the 1990-1996 birth cohorts (children aged 7-13 years in 2003) increases were lower; nonetheless, differences between 2003 estimates and 2007 'ever ASD' estimates were >100 % for 6 cohorts and differences between 2003 estimates and 2007 'current ASD' estimates were >80 % for 3 cohorts. The magnitude of most birth cohort-specific differences suggests continuing diagnosis of children in the community played a sizable role in the 2003-2007 ASD prevalence increase. While some increase was expected for 1997-2000 cohorts, because some children have later diagnoses coinciding with school entry, increases were also observed for children ages ≥7 years in 2003. Given past ASD subtype studies, the 2003 'autism' question might have missed a modest amount (≤33 %) of ASDs other than autistic disorder. [ABSTRACT FROM AUTHOR]

Abstract: Background: We sought to describe autism spectrum disorder (ASD) population characteristics and changes in identified prevalence across 3 time periods. Methods: Children with a potential ASD were identified through records abstraction at multiple sources with clinician review based on Diagnostic and Statistical Manual (DSM-IV-TR) criteria. Multisite, population-based data from the Autism and Developmental Disabilities Monitoring (ADDM) Network were analyzed from areas of Arizona (AZ), Georgia (GA), Maryland (MD), and South Carolina (SC). Participants were 8-year-old children (born in 1992, 1994, or 1996) in 2000, 2002, or 2004 (and children born in 1988 residing in metropolitan Atlanta in 1996) who had been evaluated for a variety of developmental concerns at education and/or health sources. Results: From 2000 to 2004, the identified prevalence of the ASDs per 1,000 8-year-old children showed significant increases of 38% in GA and 72% in MD and a nonsignificant increase of 26% in AZ. ASD prevalence was relatively stable in SC with a nonsignificant decrease of 17%. Males had a higher identified prevalence of ASD in all years. Increases among racial, ethnic, and cognitive functioning subgroups varied by site and surveillance year. More children were classified with an ASD by community professionals over time, except in AZ. Conclusions: There was a trend toward increase in identified ASD prevalence among 8-year-old children who met the surveillance case definition in 3 of the 4 study sites from 2000 to 2004. Some of the observed increases are due to improved ascertainment; however, a true increase in ASD symptoms cannot be ruled out. These data confirm that the prevalence of ASDs is undergoing significant change in some areas of the United States and that ASDs continue to be of urgent public health concern. [Copyright &y& Elsevier]

Abstract: Background: From 30% to 60% of children with an autism spectrum disorder (ASD) have an IQ measure that falls in the intellectual disability (ID) range. It is not well studied whether, for children within this ASD subgroup, there is variation in the risk for low IQ based on a child''s perinatal risk factors. Objective/Hypotheses: We assessed whether preterm delivery and term small-for-gestational-age (tSGA) were associated with various measures of cognitive deficit among children with ASDs. Methods: A sample of 1129 singleton children born in 1994 and identified through school and health record review as having an ASD by age 8 years were selected from a U.S. population-based surveillance network. Mean IQ and dichotomous IQ outcomes indicating various levels of ID were examined according to whether a child was preterm (<37 weeks'' gestation) or tSGA (term delivery and birth weight <10th percentile for gestational age of a U.S. referent). Results for the total sample and within race-ethnicity/maternal education strata were adjusted for child sex and ASD subtype classification. Results: Mean IQ was significantly (p < .05) lower in children delivered preterm (69.5) than term (74.5) and tSGA (69.3) than term appropriate-for gestational age (75.3). In stratified analyses, the preterm-IQ association was significant only among non-Hispanic white (NHW) children with maternal education at birth of high school or less; adjusted mean IQ was 8 points lower among those delivered preterm (65.4) than term (73.8). Term-SGA was associated with a significant 8-point deficit in adjusted mean IQ (75.5 vs. 83.8) in NHW children with maternal education greater than high school and a 6-point deficit that approached significance (68.4 vs. 74.5, p =0.10) in NHW children with maternal education of high school or less. Non-Hispanic black children in both maternal education groups had significantly lower mean IQs than NHW children with little variation by preterm or tSGA. Conclusions: In children with ASDs, the risk for concurrent ID or IQ deficit is associated with both preterm delivery and tSGA; these associations may vary by race-ethnicity and SES. Further studies of ASD-ID co-occurrence and the effectiveness of intervention strategies should consider both perinatal and sociodemographic factors. [Copyright &y& Elsevier]

Problem/Condition: Data from a population-based, multisite surveillance network were used to determine the prevalence of autism spectrum disorders (ASDs) among children aged 8 years in 14 areas of the United States and to describe the characteristics of these children. Reporting Period: 2002. Methods: Children aged 8 years were identified as having an ASD through screening and abstraction of evaluation records at health facilities for all 14 sites and through information from psychoeducational evaluations for special education services for 10 of the 14 sites. Case status was determined through clinician review of data abstracted from the records. Children whose parent(s) or legal guardian(s) resided in the respective areas in 2002 and whose records documented behaviors consistent with the Diagnostic and Statistical Manual, Fourth Edition, Text Revision (DSM-IVTR) criteria for autistic disorder; pervasive developmental disorder, not otherwise specified; or Asperger disorder were classified as having ASDs. Results: For 2002, of 407,578 children aged 8 years in the 14 surveillance areas, 2,685 (0.66%) were identified as having an ASD. ASD prevalence per 1,000 children aged 8 years ranged from 3.3 (Alabama) to 10.6 (New Jersey), with the majority of sites ranging from 5.2 to 7.6 (overall mean: 6.6 [i.e., one of every 152 children across all sites). ASD prevalence was significantly lower than all other sites in Alabama (p<0.001) and higher in New Jersey (p<0.0001). ASD prevalence varied by identification source, with higher average prevalence for ASDs in sites with access to health and education records (mean: 7.2) compared with sites with health records only (mean: 5.1). Five sites identified a higher prevalence of ASDs for non-Hispanic white children than for non-Hispanic black children. The ratio of males to females ranged from 3.4:1.0 in Maryland, South Carolina, and Wisconsin to 6.5:1.0 in Utah. The majority of children were receiving special education services at age 8 years and had a documented history of concerns regarding their development before age 3 years. However, the median age of earliest documented ASD diagnosis was much later (range: 49 months [Utah]--66 months [Alabama]). The proportion of children with characteristics consistent with the criteria for an ASD classification who had a previously documented ASD classification varied across sites. In the majority of sites, females with an ASD were more likely than males to have cognitive impairment. For the six sites for which prevalence data were available from both 2000 and 2002, ASD prevalence was stable in four sites and increased in two sites (17% in Georgia and 39% in West Virginia). Interpretation: Results from the second report of a U.S. multisite collaboration to monitor ASD prevalence demonstrated consistency of prevalence in the majority of sites, with variation in two sites. Prevalence was stable in the majority of sites for which 2 years of data were available, but an increase in West Virginia and a trend toward an increase in Georgia indicate the need for ongoing monitoring of ASD prevalence. Public Health Actions: These ASD prevalence data provide the most complete information on the prevalence of the ASDs in the United States to date. The data confirm that ASD prevalence is a continuing urgent public health concern affecting an approximate average of one child in every 150 and that efforts are needed to improve early identification of ASDs. [ABSTRACT FROM AUTHOR]

Problem/Condition: Data from a population-based, multisite surveillance network were used to determine the prevalence of children aged 8 years with autism spectrum disorder (ASD) in six areas of the United States and to describe the characteristics of these children. Reporting Period: 2000. Methods: Children aged 8 years were identified as having an ASD through screening and abstraction of evaluation records at multiple sources, with clinician review of abstracted records to determine case status. Children whose parent(s) or legal guardian(s) resided in one of the six surveillance areas during 2000 and whose records documented behaviors consistent with the American Psychiatric Association's criteria for diagnosing 1) autistic disorder, 2) pervasive developmental disorder-not otherwise specified, or 3) Asperger disorder were classified as having an ASD. Results: For 2000, across six sites, a total of 1,252 children aged 8 years were identified as having an ASD. The overall prevalence of ASDs per 1,000 children aged 8 years ranged from 4.5 in West Virginia to 9.9 in New Jersey. With the exception of one surveillance site (Georgia), no statistically significant (p<0.05) differences were identified in the rate of ASDs between non-Hispanic black and non-Hispanic white children. The ratio of male-to-female prevalence varied (range: 2.8:1.0-5.5:1.0). The majority of children with ASDs received special education services and had a documented history of concerns regarding their development before age 3 years. The prevalence of children with a previously documented ASD classification varied across sites, but the median age of earliest documented ASD diagnosis was similar across sites (age 52-56 months). For three sites with sufficient data on intelligence quotient (IQ), cognitive impairment (i.e., IQ of ≤70) was reported for 40%-62% of children whose conditions were consistent with the case definition for ASD. Interpretation: Findings from this first U.S. multisite collaborative study to monitor ASD prevalence demonstrated consistency across the majority of sites, with prevalence statistically significantly (p<0.001) higher in New Jersey. Average ASD prevalence across all six sites was 6.7 per 1,000 children aged 8 years. These results indicate that ASDs are more common than was believed previously. Public Health Actions: Collecting data regarding prevalence of ASDs by associated characteristics (e.g., cognitive impairment, age of first documented concerns, and history of ASD diagnosis), race/ethnicity, and sex will provide important baseline standards that can be compared with follow-up surveillance data to track changes in ASD prevalence. Knowledge of these characteristics has implications for identification and intervention strategies and for medical and educational service planning for children with ASDs. [ABSTRACT FROM AUTHOR]

Problem: Autism spectrum disorders (ASDs) encompass a spectrum of conditions, including autistic disorder; pervasive developmental disorders, not otherwise specified (PDD-NOS); and Asperger disorder. Impairments associated with ASDs can range from mild to severe. In 2000, in response to increasing public heath concern regarding ASDs, CDC established the Autism and Developmental Disabilities Monitoring (ADDM) Network. The primary objective of this ongoing surveillance system is to track the prevalence and characteristics of ASDs in the United States. ADDM data are useful to understand the prevalence of ASDs and have implications for improved identification, health and education service planning, and intervention for children with ASDs. Because complete, valid, timely, and representative prevalence estimates are essential to inform public health responses to ASDs, evaluating the effectiveness and efficiency of the ADDM methodology is needed to determine how well these methods meet the network's objective. Reporting Period: 2002. Description of System: The ADDM Network is a multiple-source, population-based, active system for monitoring ASDs and other developmental disabilities. In 2002, data were collected from 14 collaborative sites. This report describes an evaluation conducted using guidelines established by CDC for evaluating public health surveillance systems and is based on examination of the following characteristics of the ADDM Network surveillance system: simplicity, flexibility, data quality, acceptability, representativeness, sensitivity, predictive value positive (PVP), timeliness, stability, data confidentiality and security, and sources of variability. Results and Interpretation: Using multiple sources for case ascertainment strengthens the system's representativeness, sensitivity, and flexibility, and the clinician review process aims to bolster PVP. Sensitivity and PVP are difficult to measure, but the ADDM methodology provides the best possible estimate currently available of prevalence of ASDs without conducting complete population screening and diagnostic clinical case confirmation. Although the system is dependent on the quality and availability of information in evaluation records, extensive quality control and data cleaning protocols and missing records assessments ensure the most accurate reflection of the records reviewed. Maintaining timeliness remains a challenge with this complex methodology, and continuous effort is needed to improve timeliness and simplicity without sacrificing data quality. The most difficult influences to assess are the effects of changes in diagnostic and treatment practices, service provision, and community awareness. Information sharing through education and outreach with site-specific stakeholders is the best mechanism for understanding the current climate in the community with respect to changes in service provision and public policy related to ASDs, which can affect prevalence estimates. Public Health Actions: These evaluation results and descriptions can be used to help interpret the ADDM Network 2002 surveillance year data and can serve as a model for other public health surveillance systems, especially those designed to monitor the prevalence of complex disorders. [ABSTRACT FROM AUTHOR]

Context: Concern has been raised about possible increases in the prevalence of autism. However, few population-based studies have been conducted in the United States. Objectives: To determine the prevalence of autism among children in a major US metropolitan area and to describe characteristics of the study population. Design, Setting, and Population: Study of the prevalence of autism among children aged 3 to 10 years in the 5 counties of metropolitan Atlanta, Ga, in 1996. Cases were identified through screening and abstracting records at multiple medical and educational sources, with case status determined by expert review. Main Outcome Measures: Autism prevalence by demographic factors, levels of cognitive functioning, previous autism diagnoses, special education eligibility categories, and sources of identification. Results: A total of 987 children displayed behaviors consistent with Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition criteria for autistic disorder, pervasive developmental disorder–not otherwise specified, or Asperger disorder. The prevalence for autism was 3.4 per 1000 (95% confidence interval [CI], 3.2-3.6) (male-female ratio, 4:1). Overall, the prevalence was comparable for black and white children (black, 3.4 per 1000 [95% CI, 3.0-3.7] and white, 3.4 per 1000 [95% CI, 3.2-3.7]). Sixty-eight percent of children with IQ or developmental test results (N = 880) had cognitive impairment. As severity of cognitive impairment increased from mild to profound, the male-female ratio decreased from 4.4 to 1.3. Forty percent of children with autism were identified only at educational sources. Schools were the most important source for information on black children, children of younger mothers, and children of mothers with less than 12 years of education. Conclusion: The rate of autism found in this study was higher than the rates from studies conducted in the United States during the 1980s and early 1990s, but it was... [ABSTRACT FROM AUTHOR]

The author reflects on the change in prevalence of autism spectrum disorders in the U.S. According to a study, older research underestimated prevalence due to strict approach to interpretation of autism and related disorders. She stresses the need to improve understanding of the risk factors and causes of the condition. She notes the importance of concerted efforts to explore and respond to the needs of persons affected by autism.

Background: Autism spectrumdisorder (ASD) commonly presents with co-occurring medical conditions (CoCs). Little is known about patterns in CoCs in a time of rising ASD prevalence.Aims: To describe trends in number and type of documented CoCs in 8-year-old children with ASD.Methods: We used Autism and Developmental Disabilities Monitoring Network (ADDM) data, a multi-source active surveillance system monitoring ASD prevalence among 8-year-old children across the US. Data from surveillance years 2002, 2006, 2008, and 2010 were used to describe trends in count, categories, and individual CoCs.Results: Mean number of CoCs increased from 0.94 CoCs in 2002 to 1.06 CoCs in 2010 (p < 0.001). The percentage of children with ASD with any CoC increased from 44.5% to 56.4% (p < 0.001). CoCs with the greatest increases were in general developmental disability (10.4% to 14.5%), language disorder (18.9% to 23.6%), and motor developmental disability (10.5% to 15.6%). Sex modified the relationship between developmental (P = 0.02) and psychiatric (P < 0.001) CoCs and surveillance year. Race/ethnicity modified the relationship between neurological conditions (P = 0.04) and surveillance year.Conclusions: The increase in the percentage of children with ASD and CoCs may suggest the ASD phenotype has changed over time or clinicians are more likely to diagnose CoCs. [ABSTRACT FROM AUTHOR]

Background: The term "developmental disability" (DD) is inconsistently defined and applied depending on purpose and across sources, including in legislation., Objective: This project aimed to identify existing definitions of disability and DD and to determine the extent to which each definition could be operationalized to produce prevalence estimates using data from U.S. national surveys., Methods: Using data among children <18 years from the 2016-2018 National Health Interview Survey (NHIS) and National Survey of Children's Health (NSCH), we estimated the prevalence of two definitions of disability (Washington Group Short Set on Functioning, American Community Survey) and seven definitions of DD [Health and Human Services (ever/current), Developmental Disabilities Assistance and Bill of Rights Act of 2000 (1+, 2+, or 3+ components), and Diagnostic and Statistical Manual of Mental Disorders, 5th ed (ever/current)]. Complex sample design variables and weights were used to calculate nationally representative prevalence., Results: Disability (NHIS: 5.2-6.3%; NSCH: 9.2-11.9%) and DD prevalence (NHIS: 0.6-18.0% and NSCH: 0.2-22.2%) varied depending on the definition and data source. For the same definition, NSCH prevalence estimates tended to be higher than NHIS estimates., Conclusions: The substantial variability in estimated prevalence of disability and DD among children in the United States may be in part due to the surveys not representing all components of each definition. Different or additional questions in national surveys may better capture existing definitions of disability and DD. Considering the data collection goals may help determine the optimal definition to provide useful information for public health action., (Published by Elsevier Inc.)

Approximately 27% of adults in the United States live with a disability,* some of whom qualify for Medicare benefits. Persons with disabilities are at increased risk for severe COVID-19-associated outcomes compared with the general population (1); however, existing studies have limited generalizability † or only pertain to a specific disability (e.g., intellectual) (2). Older age is also associated with COVID-19-associated hospitalization and death, but the extent to which age might contribute to increased risk for severe COVID-19-associated outcomes among persons with disabilities is unknown (3). To describe the impact of COVID-19 on persons with disabilities and whether and how age contributes to disease rates, CDC assessed COVID-19 cases and hospitalizations during January 2020-November 2021, among Centers for Medicare & Medicaid Services (CMS) Medicare beneficiaries aged ≥18 years who were either eligible because of a disability (disability-eligible § ) or only eligible because of age ≥65 years (age-eligible). COVID-19 incidence and hospitalization rates were higher in the disability-eligible group (10,978 and 3,148 per 100,000 population, respectively) throughout the study period compared with the age-eligible group (8,102 and 2,129 per 100,000 population, respectively). Both COVID-19 incidence and hospitalization rates increased with age in both disability- and age-eligible beneficiaries. American Indian or Alaska Native (AI/AN) persons had the highest disability-eligible (4,962 per 100,000) and age-eligible (5,024 per 100,000) hospitalization rates. Among all other racial and ethnic groups, hospitalization rates were higher among disability-eligible than among age-eligible patients. COVID-19 incidence and hospitalization rates among disability-eligible Medicare beneficiaries were disproportionally higher than rates among age-eligible beneficiaries. Collection of disability status as a core demographic variable in public health surveillance data and identification, as well as the addition of disability questions in other existing data sources can guide research and development of interventions for persons with disabilities. Efforts to increase access to and use of COVID-19 prevention and treatment strategies, including activities that support equitable vaccine access regardless of the substantial challenges that older adults and persons with disability face, are critical to reducing severe COVID-19-associated outcomes among these groups., Competing Interests: All authors have completed and submitted the International Committee of Medical Journal Editors form for disclosure of potential conflicts of interest. No potential conflicts of interest were disclosed.

Developmental delays, disorders, or disabilities (DDs) manifest in infancy and childhood and can limit a person's function throughout life* (1-3). To guide strategies to optimize health for U.S. children with DDs, CDC analyzed data from 44,299 participants in the 2014-2018 National Health Interview Survey (NHIS). Parents reported on 10 DDs, † functional abilities, health needs, and use of services. Among the approximately one in six (17.3%) U.S. children and adolescents aged 3-17 years (hereafter children) with one or more DDs, 5.7% had limited ability to move or play, 4.7% needed help with personal care, 4.6% needed special equipment, and 2.4% received home health care, compared with ≤1% for each of these measures among children without DDs. Children with DDs were two to seven times as likely as those without DDs to have taken prescription medication for ≥3 months (41.6% versus 8.4%), seen a mental health professional (30.6% versus 4.5%), a medical specialist (26.0% versus 12.4%), or a special therapist, such as a physical, occupational, or speech therapist, (25.0% versus 4.5%) during the past year, and 18 times as likely to have received special education or early intervention services (EIS) (41.9% versus 2.4%). These percentages varied by type of disability and by sociodemographic subgroup. DDs are common, and children with DDs often need substantial health care and services. Policies and programs that promote early identification of children with developmental delays and facilitate increased access to intervention services can improve health and reduce the need for services later in life. § Sociodemographic inequities merit further investigation to guide public health action and ensure early and equitable access to needed care and services., Competing Interests: Catherine E. Rice reports compensation for professional training workshops on the diagnostic assessment of autism; uncompensated educational and clinical work related to licensure as a psychologist in Georgia; and uncompensated service on advisory boards for the Atlanta Autism Consortium, New Jersey State Scientific Advisory Panel for Autism, and HANDS in Autism Program during the last 36 months. No other potential conflicts of interest were disclosed.

Background: Non-White children with developmental disabilities are frequently identified later than White children and therefore miss out on opportunities for early intervention (EI). Recent research indicates that conjoint monitoring and screening is more strongly associated with EI receipt than monitoring or screening alone., Objective: To determine if there are racial/ethnic inequities in the conjoint receipt of monitoring and screening., Method: A series of survey weighted and stratified logistic regression analyses were conducted on National Surveys of Children's Health (2016-2018) data with conjoint monitoring and screening, screening alone, monitoring alone, and non-receipt as outcomes for children aged 9-23 months of age. The primary predictor was child race/ethnicity (Black, Hispanic, Other, and White). Additional co-variates included child (e.g., Age), caretaker/family (e.g., poverty level), healthcare (e.g., usual source of healthcare), state EI policies, and city metropolitan status., Results: Bivariate analyses indicated significant variation in conjoint monitoring and screening across racial/ethnic groups and covariates. Bivariate analyses showed that Black and Hispanic children had significantly lower odds of conjoint monitoring and screening receipt than White children. Multivariate analyses showed that this relationship was better accounted by co-variates. The health service variable, usual source of healthcare, had the strongest relationship with receipt of conjoint monitoring and screening., Conclusions: Black and Hispanic children are less likely to receive conjoint monitoring and screening than White children. Analyses investigating the role of usual source of healthcare seem particularly promising for understanding the sources of inequities in monitoring and screening receipt., (Copyright © 2021 Elsevier Inc. All rights reserved.)

Estimates from the 2019 American Community Survey (ACS) indicated that 15.2% of adults aged ≥18 years had at least one reported functional disability (1). Persons with disabilities are more likely than are those without disabilities to have chronic health conditions (2) and also face barriers to accessing health care (3). These and other health and social inequities have placed persons with disabilities at increased risk for COVID-19-related illness and death, yet they face unique barriers to receipt of vaccination (4,5). Although CDC encourages that considerations be made when expanding vaccine access to persons with disabilities,* few public health surveillance systems measure disability status. To describe COVID-19 vaccination status and intent, as well as perceived vaccine access among adults by disability status, data from the National Immunization Survey Adult COVID Module (NIS-ACM) were analyzed. Adults with a disability were less likely than were those without a disability to report having received ≥1 dose of COVID-19 vaccine (age-adjusted prevalence ratio [aPR] = 0.88; 95% confidence interval [CI] = 0.84-0.93) but more likely to report they would definitely get vaccinated (aPR = 1.86; 95% CI = 1.43-2.42). Among unvaccinated adults, those with a disability were more likely to report higher endorsement of vaccine as protection (aPR = 1.29; 95% CI = 1.16-1.44), yet more likely to report it would be or was difficult to get vaccinated than did adults without a disability (aPR = 2.69; 95% CI = 2.16-3.34). Reducing barriers to vaccine scheduling and making vaccination sites more accessible might improve vaccination rates among persons with disabilities., Competing Interests: All authors have completed and submitted the International Committee of Medical Journal Editors form for disclosure of potential conflicts of interest. Catherine E. Rice reports institutional support to Emory University from the Georgia Department of Public Health, the Georgia Department of Behavioral Health and Developmental Disabilities, NEXT for Autism, National Institute of Mental Health, National Institutes of Health (NIH), and National Institute of Environmental Health Sciences, NIH, outside the submitted work; personal fees for professional training workshops on the diagnostic assessment of autism, outside the submitted work; and participation on advisory boards for the Atlanta Autism Consortium, New Jersey State Scientific Advisory Panel for Autism, HANDS in Autism program. No other potential conflicts of interest were disclosed.

Objective: Rapid increases in the prevalence of autism spectrum disorder (ASD) and increased access to intensive behavioral interventions have likely increased health care spending. This study estimated recent changes in spending among privately insured children with and without current ASD., Methods: A repeated cross-sections analysis of 2011-2017 claims data from large-employer-sponsored health plans assessed changes in annual expenditures by service type for children ages 3-7 enrolled for ≥1 year and with two or more claims with ASD billing codes within a calendar year and for all other children., Results: Mean spending per child with a current-year ASD diagnosis increased by 51% in 2017 U.S. dollars, from roughly $13,000 in 2011 to $20,000 in 2017. Among children who did not meet the current-year ASD case definition, per-child spending increased by 8%. Spending on children with ASD accounted for 41% of spending growth for children ages 3-7 during 2011-2017. Outpatient behavioral intervention-related spending per child with ASD increased by 376%, from $1,746 in 2011 to $8,317 in 2017; spending on all other services increased by 2%. Their share of behavioral intervention-related spending increased from 13.2% in 2011 to 41.7% in 2017. In 2011, 2.5% of children with current-year ASD diagnoses incurred ≥$20,000 in outpatient behavioral intervention-related spending, which increased to 14.4% in 2017., Conclusions: During 2011-2017, spending increased six times as much for privately insured children ages 3-7 with current-year ASD as for children without ASD, largely from increased behavioral intervention-related spending. One in seven children received at least $20,000 in services in 2017.

The objectives of our study were to (a) report how many children met an autism spectrum disorder (ASD) surveillance definition but had no clinical diagnosis of ASD in health or education records and (b) evaluate differences in demographic, individual, and service factors between children with and without a documented ASD diagnosis. ASD surveillance was conducted in selected areas of Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee, and Wisconsin. Children were defined as having ASD if sufficient social and behavioral deficits and/or an ASD diagnosis were noted in health and/or education records. Among 4,498 children, 1,135 (25%) had ASD indicators without having an ASD diagnosis. Of those 1,135 children without a documented ASD diagnosis, 628 (55%) were not known to receive ASD services in public school. Factors associated with not having a clinical diagnosis of ASD were non-White race, no intellectual disability, older age at first developmental concern, older age at first developmental evaluation, special education eligibility other than ASD, and need for fewer supports. These results highlight the importance of reducing disparities in the diagnosis of children with ASD characteristics so that appropriate interventions can be promoted across communities. Autism Res 2020, 13: 464-473. © 2019 International Society for AutismResearch,Wiley Periodicals, Inc. LAY SUMMARY: Children who did not have a clinical diagnosis of autism spectrum disorder (ASD) documented in health or education records were more likely to be non-White and have fewer developmental problems than children with a clinical diagnosis of ASD. They were brought to the attention of healthcare providers at older ages and needed fewer supports than children with a clinical diagnosis of ASD. All children with ASD symptoms who meet diagnostic criteria should be given a clinical diagnosis so they can receive treatment specific to their needs., (© 2019 International Society for Autism Research, Wiley Periodicals, Inc.)

Objective: Although data on publicly available special education are informative and offer a glimpse of trends in autism spectrum disorder (ASD) and use of educational services, using these data for population-based public health monitoring has drawbacks. Our objective was to evaluate trends in special education eligibility among 8-year-old children with ASD identified in the Autism and Developmental Disabilities Monitoring Network., Methods: We used data from 5 Autism and Developmental Disabilities Monitoring Network sites (Arizona, Colorado, Georgia, Maryland, and North Carolina) during 4 surveillance years (2002, 2006, 2008, and 2010) and compared trends in 12 categories of special education eligibility by sex and race/ethnicity. We used multivariable linear risk regressions to evaluate how the proportion of children with a given eligibility changed over time., Results: Of 6010 children with ASD, more than 36% did not receive an autism eligibility in special education in each surveillance year. From surveillance year 2002 to surveillance year 2010, autism eligibility increased by 3.6 percentage points ( P = .09), and intellectual disability eligibility decreased by 4.6 percentage points ( P < .001). A greater proportion of boys than girls had an autism eligibility in 2002 (56.3% vs 48.8%). Compared with other racial/ethnic groups, Hispanic children had the largest increase in proportion with autism eligibility from 2002 to 2010 (15.4%, P = .005) and the largest decrease in proportion with intellectual disability (-14.3%, P = .004)., Conclusion: Although most children with ASD had autism eligibility, many received special education services under other categories, and racial/ethnic disparities persisted. To monitor trends in ASD prevalence, public health officials need access to comprehensive data collected systematically, not just special education eligibility.

Objective: The purpose of this study was to assess the approach and materials of Centers for Disease Control and Prevention's "Learn the Signs. Act Early." (LTSAE) health education campaign, which aims to improve awareness of developmental milestones and early warning signs of developmental delay among parents of young children., Methods: We conducted 2 phases of qualitative research. Focus groups assessed the campaign's objectives by exploring the experiences of parents with children who have developmental delays or disabilities to determine facilitators of and barriers to identification. In-depth interviews were conducted with parents of typically developing children, who reviewed campaign materials and provided feedback on appropriateness, appeal, and clarity with regard to the campaign's objectives., Results: Phase 1: Parents were typically the first to express concern about their child's development, and most talked with their child's health care provider. Two categories of health care providers emerged: those who proactively asked about a child's development, used tools to facilitate conversations, and made referrals, and those who did not ask about development, told parents to "wait and see," and did not provide information about services and supports. Few parents knew about special education services before identification. Phase 2: Participants found the campaign materials appealing, but were unclear about how to act early and why acting early was important., Conclusions: Results affirmed LTSAE's evidence-based approach to educating parents about child development. Additional campaign considerations include providing more information about how to act early and why acting early is important and enhancing outreach to providers to help them communicate with concerned parents.

Objectives: We assessed the association between assisted reproductive technology (ART) and diagnosed autistic disorder in a population-based sample of California births., Methods: We performed an observational cohort study using linked records from the California Birth Master Files for 1997 through 2007, the California Department of Developmental Services autism caseload for 1997 through 2011, and the Centers for Disease Control and Prevention's National ART Surveillance System for live births in 1997 through 2007. Participants were all 5 926 251 live births, including 48 865 ART-originated infants and 32 922 cases of autism diagnosed by the Department of Developmental Services. We compared births originated using ART with births originated without ART for incidence of autism., Results: In the full population, the incidence of diagnosed autism was twice as high for ART as non-ART births. The association was diminished by excluding mothers unlikely to use ART; adjustment for demographic and adverse prenatal and perinatal outcomes reduced the association substantially, although statistical significance persisted for mothers aged 20 to 34 years., Conclusions: The association between ART and autism is primarily explained by adverse prenatal and perinatal outcomes and multiple births.

Purpose: Numerous studies establish associations between adverse perinatal outcomes/complications and autism spectrum disorder (ASD). There has been little assessment of population attributable fractions (PAFs)., Methods: We estimated average ASD PAFs for preterm birth (PTB), small for gestational age (SGA), and Cesarean delivery (CD) in a U.S. population. Average PAF methodology accounts for risk factor co-occurrence. ASD cases were singleton non-Hispanic white, non-Hispanic black, and Hispanic children born in 1994 (n = 703) or 2000 (n = 1339) who resided in 48 U.S. counties included within eight Autism and Developmental Disabilities Monitoring Network sites. Cases were matched on birth year, sex, and maternal county of residence, race-ethnicity, age, and education to 20 controls from U.S. natality files., Results: For the 1994 cohort, average PAFs were 4.2%, 0.9%, and 7.9% for PTB, SGA, and CD, respectively. The summary PAF was 13.0% (1.7%-19.5%). For the 2000 cohort, average PAFs were 2.0%, 3.1%, and 6.7% for PTB, SGA, and CD, respectively, with a summary PAF of 11.8% (7.5%-15.9%)., Conclusions: Three perinatal risk factors notably contribute to ASD risk in a U.S. population. Because each factor represents multiple etiologic pathways, PAF estimates are best interpreted as the proportion of ASD attributable to having a suboptimal perinatal environment resulting in PTB, SGA, and/or CD., (Published by Elsevier Inc.)

Importance: The DSM-5 contains revised diagnostic criteria for autism spectrum disorder (ASD) from the DSM-IV-TR. Potential impacts of the new criteria on ASD prevalence are unclear., Objective: To assess potential effects of the DSM-5 ASD criteria on ASD prevalence estimation by retrospectively applying the new criteria to population-based surveillance data collected for previous ASD prevalence estimation., Design, Setting, and Participants: Cross-sectional, population-based ASD surveillance based on clinician review of coded behaviors documented in children's medical and educational evaluations from 14 geographically defined areas in the United States participating in the Autism and Developmental Disabilities Monitoring (ADDM) Network in 2006 and 2008. This study included 8-year-old children living in ADDM Network study areas in 2006 or 2008, including 644 883 children under surveillance, of whom 6577 met surveillance ASD case status based on the DSM-IV-TR., Main Outcomes and Measures: Proportion of children meeting ADDM Network ASD criteria based on the DSM-IV-TR who also met DSM-5 criteria; overall prevalence of ASD using DSM-5 criteria., Results: Among the 6577 children classified by the ADDM Network as having ASD based on the DSM-IV-TR, 5339 (81.2%) met DSM-5 ASD criteria. This percentage was similar for boys and girls but higher for those with than without intellectual disability (86.6% and 72.5%, respectively; P < .001). A total of 304 children met DSM-5 ASD criteria but not current ADDM Network ASD case status. Based on these findings, ASD prevalence per 1000 for 2008 would have been 10.0 (95% CI, 9.6-10.3) using DSM-5 criteria compared with the reported prevalence based on DSM-IV-TR criteria of 11.3 (95% CI, 11.0-11.7)., Conclusions and Relevance: Autism spectrum disorder prevalence estimates will likely be lower under DSM-5 than under DSM-IV-TR diagnostic criteria, although this effect could be tempered by future adaptation of diagnostic practices and documentation of behaviors to fit the new criteria.

Objective: The DSM-IV-TR specifies 12 behavioral features that can occur in hundreds of possible combinations to meet diagnostic criteria for autism spectrum disorder (ASD). This paper describes the frequency and variability with which the 12 behavioral features are documented in a population-based cohort of 8-year-old children under surveillance for ASD, and examines whether documentation of certain features, alone or in combination with other features, is associated with earlier age of community identification of ASD., Method: Statistical analysis of behavioral features documented for a population-based sample of 2,757 children, 8 years old, with ASD in 11 geographically-defined areas in the US participating in the Autism and Developmental Disabilities Monitoring Network in 2006., Results: The median age at ASD identification was inversely associated with the number of documented behavioral features, decreasing from 8.2 years for children with only seven behavioral features to 3.8 years for children with all 12. Documented impairments in nonverbal communication, pretend play, inflexible routines, and repetitive motor behaviors were associated with earlier identification, whereas impairments in peer relations, conversational ability, and idiosyncratic speech were associated with later identification., Conclusions: The age dependence of some of the behavioral features leading to an autism diagnosis, as well as the inverse association between age at identification and number of behavioral features documented, have implications for efforts to improve early identification. Progress in achieving early identification and provision of services for children with autism may be limited for those with fewer ASD behavioral features, as well as features likely to be detected at later ages., (Copyright © 2013 American Academy of Child and Adolescent Psychiatry. All rights reserved.)

Objective: Past research is inconsistent in the stability of autism spectrum disorder (ASD) diagnoses. The authors therefore sought to examine the proportion of children identified from a population-based surveillance system that had a change in classification from ASD to non-ASD and factors associated with such changes., Methods: Children with a documented age of first ASD diagnosis noted in surveillance records by a community professional (n = 1392) were identified from the Autism and Developmental Disabilities Monitoring Network. Children were considered to have a change in classification if an ASD was excluded after the age of first recorded ASD diagnosis. Child and surveillance factors were entered into a multivariable regression model to determine factors associated with diagnostic change., Results: Only 4% of our sample had a change in classification from ASD to non-ASD noted in evaluation records. Factors associated with change in classification from ASD to non-ASD were timing of first ASD diagnosis at 30 months or younger, onset other than developmental regression, presence of specific developmental delays, and participation in a special needs classroom other than autism at 8 years of age., Conclusions: Our results found that children with ASDs are likely to retain an ASD diagnosis, which underscores the need for continued services. Children diagnosed at 30 months or younger are more likely to experience a change in classification from ASD to non-ASD than children diagnosed at 31 months or older, suggesting earlier identification of ASD symptoms may be associated with response to intervention efforts or increased likelihood for overdiagnosis.

Studies document various associated health risks for children with developmental disabilities (DDs). Further study is needed by disability type. Using the 2006-2010 National Health Interview Surveys, we assessed the prevalence of numerous medical conditions (e.g. asthma, frequent diarrhea/colitis, seizures), health care use measures (e.g. seeing a medical specialist and >9 office visits in past year), health impact measures (e.g. needing help with personal care), and selected indicators of unmet health needs (e.g. unable to afford needed prescription medications) among a nationally representative sample of children ages 3-17 years, with and without DDs. Children in four mutually exclusive developmental disability groups: autism (N = 375), intellectual disability (ID) without autism (N = 238); attention-deficit/hyperactivity disorder (ADHD) without autism or ID (N = 2901); and learning disability (LD) or other developmental delay without ADHD, autism, or ID (N = 1955); were compared to children without DDs (N = 35,775) on each condition or health care measure of interest. Adjusted odds ratios (aORs) were calculated from weighted logistic regression models that accounted for the complex sample design. Prevalence estimates for most medical conditions examined were moderately to markedly higher for children in all four DD groups than children without DDs. Most differences were statistically significant after adjustment for child sex, age, race/ethnicity, and maternal education. Children in all DD groups also had significantly higher estimates for health care use, impact, and unmet needs measures than children without DDs. This study provides empirical evidence that children with DDs require increased pediatric and specialist services, both for their core functional deficits and concurrent medical conditions., (Published by Elsevier Ltd.)

Background: Limited studies suggest the prevalence of autism spectrum disorders (ASD) varies by whether maternal and child birth country are discordant., Objective/hypothesis: We explored associations between ASD and maternal and paternal nativity in a sample of US-born non-Hispanic white (NHW, n = 37,265) and US-born Hispanic (n = 4,690) children in the 2007 National Survey of Children's Health (NSCH)., Methods: We assessed ASD prevalence within race-ethnicity and parental nativity subgroups. Prevalence ratios (aPR), comparing each group to NHW children with 2 US-born parents, were adjusted for child age, sex, and receipt of care in a medical home. Estimates were weighted to reflect US noninstitutionalized children. Standard errors were adjusted to account for the complex sample design., Results: In NHW children with 2 US-born parents, ASD prevalence was 1.19%; estimates were similar for NHW children with a foreign-born mother or father. There was a striking heterogeneity between Hispanic children with 2 US-born versus 2 foreign-born parents (ASD prevalence 2.39% versus 0.31%, p = .05). Even after adjustment, PRs comparing ASD prevalence in Hispanic versus NHW children were vastly different for Hispanic subgroups, suggesting a substantially lower prevalence for Hispanic children with both parents foreign-born (aPR 0.2, 95% confidence interval 0.1-0.5) and a higher prevalence for Hispanic children with both parents US-born (aPR 2.0 [0.8-4.6])., Conclusions: Previous studies comparing ASD prevalence between NHW and Hispanic children based on a composite Hispanic grouping without consideration of parental nativity likely missed important differences between these racial-ethnic groups. Continuing efforts toward improving early identification in Hispanic children are needed., (Published by Elsevier Inc.)

Background: A 57% increase in the U.S. prevalence of autism spectrum disorders (ASD) for 8-year-old children born in 1994 versus 1998 was recently reported., Methods: To quantify the possible contributions of given risk/predictive factors on the recent ASD prevalence increase, we formulated a mathematical model based on the baseline risk factor prevalence (RFP), the proportionate change in RFP (cRFP), and the magnitude of the association between the risk factor and ASD [estimated relative risk (RR)]. We applied this model to several pregnancy-related factors (preterm, very preterm, low and very low birth weight, multiple birth, cesarean delivery, breech presentation, and assisted reproductive technology use). RFP and cRFP estimates for each factor were obtained from U.S. population-based surveillance datasets. Estimated RRs were obtained from a series of systematic literature reviews., Results: We estimate that each risk factor examined, alone or in various combinations, accounted for a very small proportion (<1%) of the ASD increase. Additionally, hypothetical scenarios indicate RFP, cRFP, and RR all need to be sizable for a risk factor to appreciably influence ASD prevalence., Conclusions: Thus, although various pregnancy factors have been found to be associated with ASDs, the contribution of many of these factors to the recently observed ASD increase is likely minimal., (Published by Elsevier Inc.)

We conducted the first study that estimates the sensitivity, specificity, positive predictive value (PPV), and negative predictive value (NPV) of a population-based autism spectrum disorders (ASD) surveillance system developed at the Centers for Disease Control and Prevention. The system employs a records-review methodology that yields ASD classification (case versus non-ASD case) and was compared with classification based on clinical examination. The study enrolled 177 children. Estimated specificity (0.96, [CI(.95) = 0.94, 0.99]), PPV (0.79 [CI(.95) = 0.66, 0.93]), and NPV (0.91 [CI(.95) = 0.87, 0.96]) were high. Sensitivity was lower (0.60 [CI(.95) = 0.45, 0.75]). Given diagnostic heterogeneity, and the broad array of ASD in the population, identifying children with ASD is challenging. Records-based surveillance yields a population-based estimate of ASD that is likely conservative.

Background: Autism spectrum disorders (ASDs) often co-occur with other developmental, psychiatric, neurologic, or medical diagnoses., Objective: This study examined co-occurring non-ASD diagnoses and symptoms in a population-based cohort of 8 year olds identified with ASD., Method: Data on 2,568 children meeting surveillance case definition for ASD were collected by a multi-site surveillance program. Information was systematically abstracted and reviewed from existing health and education source records and systematically entered into a summary record in a secure database., Results: Eighty-one percent of study children were male; 63% white, 23% black, 14% Hispanic, Asian, or not stated. When age of ASD classification was available, 20% were classified before age 3 years, 36% between ages 3 and 5 years, and 44% after age 5 years. The co-occurrence of > or = 1 non-ASD developmental diagnoses was 83%, > or = 1 psychiatric diagnoses was 10%, > or = 1 neurologic diagnoses was 16%, and at least one possibly causative genetic or neurologic diagnosis was 4%. Children with a previous ASD classification and co-occurring psychiatric or neurologic conditions were more likely to be diagnosed or classified at a later age. Each category of co-occurring non-ASD diagnosis was significantly increased in children whose records did not include an ASD diagnosis or educational classification but who met surveillance criteria for ASD., Conclusions: These data highlight the need for clinicians to keep in mind the high prevalence of associated diagnoses with an ASD diagnosis, and the possibility that in younger children other symptoms or disorders may be masking or obscuring core symptoms of ASD, which would lead to a diagnosis.

Background: One of the most consistent features of the autism spectrum disorders (ASDs) is the predominance among males, with approximately four males to every female. We sought to examine sex differences among children who met case definition for ASD in a large, population-based cohort with respect to age at first developmental evaluation, age of diagnosis, influence of cognitive impairment on these outcomes, and sex-specific behavioral characteristics., Methods: We conducted a secondary analysis of data collected for a population-based study of the prevalence of ASD. The sample comprised 2,568 children born in 1994 who met the case definition of ASD as established by the Autism and Developmental Disabilities Monitoring (ADDM) Network for ASD surveillance. Children who had a history of developmental disability and behavioral features consistent with the DSM-IV-TR criteria for autistic disorder, Asperger's disorder, and Pervasive Developmental Disorder-Not Otherwise Specified in existing evaluation records were classified as ASD cases via two paths: streamlined and nonstreamlined. Streamlined reviews were conducted if there was an ASD diagnosis documented in the records. Data were collected in 13 sites across the United States through the ADDM Network, funded by the Centers for Disease Control and Prevention., Results: Males constituted 81% of the sample. There were no differences by sex in average age at first evaluation or average age of diagnosis among those with an existing documented chart diagnosis of an ASD. Girls were less likely than boys to have a documented diagnosis (odds ratio [OR] = 0.76, p = .004). This analysis was adjusted for cognitive impairment status. In the logistic model, with the interaction term for sex and cognitive impairment, girls with IQ of 70 or less were less likely than boys with IQ of 70 or less to have a documented diagnosis (OR = 0.70, 95% confidence interval [CI] = 0.50-0.97, p = .035). Boys with IQ greater than 70 were less likely than boys with IQ of 70 or less to have a documented diagnosis (OR = 0.60, 95% CI = 0.49-0.74, p < .001). This finding (less likely to have a documented diagnosis) was also true for girls with IQ greater than 70 (OR = 0.45, 95% CI = 0.32-0.66, p < .001). Girls were more likely to have notations of seizure-like behavior (p < .001). Boys were more likely to have notations of hyperactivity or a short attention span and aggressive behavior (p < .01)., Conclusions: Girls, especially those without cognitive impairment, may be formally identified at a later age than boys. This may delay referral for early intervention. Community education efforts should alert clinicians and parents to the potential of ASDs in boys and girls., (Copyright © 2010 Elsevier Inc. All rights reserved.)

Autism spectrum disorders (ASDs) represent a range of behavioural phenotypes defined by impaired development in social interaction, communication, imagination, and range of interests or behaviours. The aetiology and epidemiology of these serious developmental disabilities (DDs) are poorly understood. Estimates of the population prevalence of ASDs have varied widely within the US and abroad, with increasing estimates in most of the recent studies. In an effort to improve our understanding of the prevalence, population characteristics and public health impact of these conditions, the Centers for Disease Control and Prevention has funded a multi-site surveillance network for ASDs and other DDs that consists of programmes known as the Autism and Developmental Disabilities Monitoring (ADDM) network which conducts surveillance activities and the Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) which also conducts surveillance in addition to special research studies related to the ASDs. This collaboration will be referred to hereafter as the ADDM Network. The ADDM Network is implementing a multiple-source surveillance programme to determine population prevalence and characteristics of ASDs and other DDs. This paper describes the collaborative efforts and explains the methods in developing this coordinated public health surveillance network to provide an ongoing source of high-quality data on ASDs.

Problem: Autism spectrum disorders (ASDs) encompass a spectrum of conditions, including autistic disorder; pervasive developmental disorders, not otherwise specified (PDD-NOS); and Asperger disorder. Impairments associated with ASDs can range from mild to severe. In 2000, in response to increasing public heath concern regarding ASDs, CDC established the Autism and Developmental Disabilities Monitoring (ADDM) Network. The primary objective of this ongoing surveillance system is to track the prevalence and characteristics of ASDs in the United States. ADDM data are useful to understand the prevalence of ASDs and have implications for improved identification, health and education service planning, and intervention for children with ASDs. Because complete, valid, timely, and representative prevalence estimates are essential to inform public health responses to ASDs, evaluating the effectiveness and efficiency of the ADDM methodology is needed to determine how well these methods meet the network's objective., Reporting Period: 2002., Description of System: The ADDM Network is a multiple-source, population-based, active system for monitoring ASDs and other developmental disabilities. In 2002, data were collected from 14 collaborative sites. This report describes an evaluation conducted using guidelines established by CDC for evaluating public health surveillance systems and is based on examination of the following characteristics of the ADDM Network surveillance system: simplicity, flexibility, data quality, acceptability, representativeness, sensitivity, predictive value positive (PVP), timeliness, stability, data confidentiality and security, and sources of variability., Results and Interpretation: Using multiple sources for case ascertainment strengthens the system's representativeness, sensitivity, and flexibility, and the clinician review process aims to bolster PVP. Sensitivity and PVP are difficult to measure, but the ADDM methodology provides the best possible estimate currently available of prevalence of ASDs without conducting complete population screening and diagnostic clinical case confirmation. Although the system is dependent on the quality and availability of information in evaluation records, extensive quality control and data cleaning protocols and missing records assessments ensure the most accurate reflection of the records reviewed. Maintaining timeliness remains a challenge with this complex methodology, and continuous effort is needed to improve timeliness and simplicity without sacrificing data quality. The most difficult influences to assess are the effects of changes in diagnostic and treatment practices, service provision, and community awareness. Information sharing through education and outreach with site-specific stakeholders is the best mechanism for understanding the current climate in the community with respect to changes in service provision and public policy related to ASDs, which can affect prevalence estimates., Public Health Actions: These evaluation results and descriptions can be used to help interpret the ADDM Network 2002 surveillance year data and can serve as a model for other public health surveillance systems, especially those designed to monitor the prevalence of complex disorders.

Objective: We assessed associations between parenting a child with autism and stress indicators., Methods: In the 2003 National Survey of Children's Health, parents or other knowledgeable adult respondents for children aged 4 to 17 years reported their recent feelings about their life sacrifices to care for their child, difficulty caring for their child, frustration with their child's actions, and anger toward their child. Responses were compiled in the Aggravation in Parenting Scale. Parents of children reported to have autism (N = 459) were compared with parents of: (1) children with special health care needs including emotional, developmental, or behavioral problems other than autism that necessitated treatment (children with other developmental problems [N = 4545]); (2) children with special health care needs without developmental problems (N = 11475); and (3) children without special health care needs (N = 61826). Weighted estimates are presented., Results: Parents of children with autism were more likely to score in the high aggravation range (55%) than parents of children with developmental problems other than autism (44%), parents of children with special health care needs without developmental problems (12%), and parents of children without special health care needs (11%). However, within the autism group, the proportion of parents with high aggravation was 66% for those whose child recently needed special services and 28% for those whose child did not. The parents of children with autism and recent special service needs were substantially more likely to have high aggravation than parents of children with recent special service needs in each of the 3 comparison groups. Conversely, parents of children with autism but without recent special service needs were not more likely to have high aggravation than parents of children with other developmental problems., Conclusions: Parenting a child with autism with recent special service needs seems to be associated with unique stresses.

Early identification of young children with an autism spectrum disorder (ASD) can lead to earlier entry into intervention programs that support improved developmental outcomes. The purpose of the present study was to examine identification and diagnostic patterns of children with ASD who live in a large metropolitan area. One hundred fifteen 8-year-old children diagnosed with ASD were identified from a population-based surveillance system at the Centers for Disease Control and Prevention. Primary variables of interest included earliest age of evaluation and earliest age of diagnosis identified from surveillance records, type of initial ASD diagnosis, evaluation sources that documented first ASD diagnosis, characteristics of professionals assigning first ASD diagnosis, and diagnostic tools used to aid the diagnostic process. We found that children with ASD identified by the surveillance system were initially evaluated at a mean of 48 months but were not diagnosed with ASD until a mean age of 61 months. There were no differences in timing of diagnosis based on sex or racial/ethnic classification, although degree of impairment associated with ASD predicted mean age at first evaluation and mean age at first ASD diagnosis. Most children were identified at non-school sources, such as hospitals and clinics; 24% of the sample did not receive a documented ASD diagnosis until entering school. Most practitioners (70%) did not use a diagnostic instrument when assigning the first ASD diagnosis. Implications for early identification of ASD are discussed.