Last data update: Jan 13, 2025. (Total: 48570 publications since 2009)
Records 1-25 (of 25 Records) |
Query Trace: Baio J[original query] |
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Health service utilization patterns among Medicaid enrollees with intellectual and developmental disabilities before and during the COVID-19 pandemic: Implications for pandemic response and recovery efforts
Kearly A , Hluchan M , Brazeel C , Lane JT , Oputa J , Baio J , Cree RA , Cheng Q , Wray A , Payne C , Gerling J , Pham T , Ekart S . J Public Health Manag Pract 2024 OBJECTIVES: To assess the impact of COVID-19 on health service utilization of adults with intellectual and developmental disabilities (IDDs) through an analysis of Medicaid claims data. DESIGN: Retrospective cohort study of Medicaid claims. SETTING AND PARTICIPANTS: Medicaid members aged 25 to 64 years from January 1, 2018, to March 31, 2021, from the states of Louisiana, Pennsylvania, and Wyoming. INTERVENTION: We analyzed data from two 12-month time periods (pre-COVID-19 and during COVID-19) and assessed the potential impact of the COVID-19 pandemic on health service utilization and service intensity for 3 cohorts: (1) IDD with preexisting mental health diagnoses, (2) IDD without mental health diagnoses, and (3) all other Medicaid members. MAIN OUTCOME MEASURE: Health service utilization determined by specific claims data classifications. RESULTS: The analysis showed reduced utilization for nonmental health service types with differing utilization patterns for IDD with preexisting mental health diagnoses, IDD without mental health diagnoses, and all other Medicaid members. Change in utilization varied, however, for mental health service types. Measures of service intensity showed decreased numbers of members utilizing services across most service types and increased Medicaid claims per person across most mental health service categories but decreased Medicaid claims per person for most nonmental health services. CONCLUSIONS: Results suggest a need for mental health services among all Medicaid members during the COVID-19 pandemic. By anticipating these needs, communities may be able to expand outreach to Medicaid members through enhanced case management, medication checks, and telemedicine options. |
Best practices and lessons learned from the public health disability specialists program: Addressing the needs of people with disabilities during COVID-19
Cree RA , Wray A , Evans A , Lyons S , Burrous H , Nilz M , Clarke C , Li J , Baio J . J Public Health Manag Pract 2024 CONTEXT: The Association of State and Territorial Health Officials (ASTHO) and the National Association of County and City Health Officials (NACCHO) applied funding issued by the US Centers for Disease Control and Prevention (CDC) to implement the Public Health Disability Specialists Program, part of a project to address the needs of people with disabilities during the COVID-19 pandemic. Disability specialists (subject matter experts) were embedded within state, territorial, and city/county health departments to help ensure disability inclusion in emergency planning, mitigation, and recovery efforts. OBJECTIVE: To evaluate the success of the Disability Specialists Program in improving emergency response planning, mitigation, and recovery efforts for people with disabilities within participating jurisdictions. DESIGN: Disability specialists worked with their assigned jurisdictions to conduct standardized baseline health department needs assessments to identify existing gaps and inform development and implementation of improvement plans. CDC, ASTHO, and NACCHO implemented a mixed methods framework to evaluate specialists' success. SETTING: State, territorial, and local health departments across 28 jurisdictions between January 2021 and July 2022. MAIN OUTCOME MEASURES: Average number of categories of gaps addressed and qualitative documentation of strategies, barriers, and promising practices. RESULTS: Specialists identified 1010 gaps (approximately 36 per jurisdiction) across eight needs assessment categories, most related to mitigation, recovery, resilience, and sustainability efforts (n = 213) and communication (n = 193). Specialists addressed an average of three categories of gaps identified; common focus areas included equitable COVID-19 vaccine distribution and accessible communications. Specialists commonly mentioned barriers related to limited health agency capacity (eg, resources) and community mistrust. Promising practices to address barriers included sharing best practices through peer-to-peer networks and building and strengthening partnerships between health departments and the disability community. CONCLUSIONS: Embedding disability specialists within state, territorial, and local health departments improved jurisdictional ability to meet evolving public health needs for the entire community, including people with disabilities. |
Defining in Detail and Evaluating Reliability of DSM-5 Criteria for Autism Spectrum Disorder (ASD) Among Children
Rice CE , Carpenter LA , Morrier MJ , Lord C , DiRienzo M , Boan A , Skowyra C , Fusco A , Baio J , Esler A , Zahorodny W , Hobson N , Mars A , Thurm A , Bishop S , Wiggins LD . J Autism Dev Disord 2022 52 (12) 5308-5320 This paper describes a process to define a comprehensive list of exemplars for seven core Diagnostic and Statistical Manual (DSM) diagnostic criteria for autism spectrum disorder (ASD), and report on interrater reliability in applying these exemplars to determine ASD case classification. Clinicians completed an iterative process to map specific exemplars from the CDC Autism and Developmental Disabilities Monitoring (ADDM) Network criteria for ASD surveillance, DSM-5 text, and diagnostic assessments to each of the core DSM-5 ASD criteria. Clinicians applied the diagnostic exemplars to child behavioral descriptions in existing evaluation records to establish initial reliability standards and then for blinded clinician review in one site (phase 1) and for two ADDM Network surveillance years (phase 2). Interrater reliability for each of the DSM-5 diagnostic categories and overall ASD classification was high (defined as very good .60-.79 to excellent.80 Kappa values) across sex, race/ethnicity, and cognitive levels for both phases. Classification of DSM-5 ASD by mapping specific exemplars from evaluation records by a diverse group of clinician raters is feasible and reliable. This framework provides confidence in the consistency of prevalence classifications of ASD and may be further applied to improve consistency of ASD diagnoses in clinical settings. |
Prevalence of intellectual disability among eight-year-old children from selected communities in the United States, 2014
Patrick ME , Shaw KA , Dietz PM , Baio J , Yeargin-Allsopp M , Bilder DA , Kirby RS , Hall-Lande JA , Harrington RA , Lee LC , Lopez MLC , Daniels J , Maenner MJ . Disabil Health J 2020 14 (2) 101023 BACKGROUND: Children with intellectual disability (ID), characterized by impairments in intellectual functioning and adaptive behavior, benefit from early identification and access to services. Previous U.S. estimates used administrative data or parent report with limited information for demographic subgroups. OBJECTIVE: Using empiric measures we examined ID characteristics among 8-year-old children and estimated prevalence by sex, race/ethnicity, geographic area and socioeconomic status (SES) area indicators. METHODS: We analyzed data for 8-year-old children in 9 geographic areas participating in the 2014 Autism and Developmental Disabilities Monitoring Network. Children with ID were identified through record review of IQ test data. Census and American Community Survey data were used to estimate the denominator. RESULTS: Overall, 11.8 per 1,000 (1.2%) had ID (IQ ≤ 70), of whom 39% (n = 998) also had autism spectrum disorder. Among children with ID, 1,823 had adaptive behavior test scores for which 64% were characterized as impaired. ID prevalence per 1,000 was 15.8 (95% confidence interval [95% CI], 15.0-16.5) among males and 7.7 (95% CI, 7.2-8.2) among females. ID prevalence was 17.7 (95% CI, 16.6-18.9) among children who were non-Hispanic black; 12.0 (95% CI, 11.1-13.0), among Hispanic; 8.6 (95% CI, 7.1-10.4), among non-Hispanic Asian; and 8.0 (95% CI, 7.5-8.6), among non-Hispanic white. Prevalence varied across geographic areas and was inversely associated with SES. CONCLUSIONS: ID prevalence varied substantively among racial, ethnic, geographic, and SES groups. Results can inform strategies to enhance identification and improve access to services particularly for children who are minorities or living in areas with lower SES. |
Prevalence of autism spectrum disorder among children aged 8 years - Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2016
Maenner MJ , Shaw KA , Baio J , Washington A , Patrick M , DiRienzo M , Christensen DL , Wiggins LD , Pettygrove S , Andrews JG , Lopez M , Hudson A , Baroud T , Schwenk Y , White T , Rosenberg CR , Lee LC , Harrington RA , Huston M , Hewitt A , Esler A , Hall-Lande J , Poynter JN , Hallas-Muchow L , Constantino JN , Fitzgerald RT , Zahorodny W , Shenouda J , Daniels JL , Warren Z , Vehorn A , Salinas A , Durkin MS , Dietz PM . MMWR Surveill Summ 2020 69 (4) 1-12 PROBLEM/CONDITION: Autism spectrum disorder (ASD). PERIOD COVERED: 2016. DESCRIPTION OF SYSTEM: The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance program that provides estimates of the prevalence of ASD among children aged 8 years whose parents or guardians live in 11 ADDM Network sites in the United States (Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee, and Wisconsin). Surveillance is conducted in two phases. The first phase involves review and abstraction of comprehensive evaluations that were completed by medical and educational service providers in the community. In the second phase, experienced clinicians who systematically review all abstracted information determine ASD case status. The case definition is based on ASD criteria described in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. RESULTS: For 2016, across all 11 sites, ASD prevalence was 18.5 per 1,000 (one in 54) children aged 8 years, and ASD was 4.3 times as prevalent among boys as among girls. ASD prevalence varied by site, ranging from 13.1 (Colorado) to 31.4 (New Jersey). Prevalence estimates were approximately identical for non-Hispanic white (white), non-Hispanic black (black), and Asian/Pacific Islander children (18.5, 18.3, and 17.9, respectively) but lower for Hispanic children (15.4). Among children with ASD for whom data on intellectual or cognitive functioning were available, 33% were classified as having intellectual disability (intelligence quotient [IQ] </=70); this percentage was higher among girls than boys (40% versus 32%) and among black and Hispanic than white children (47%, 36%, and 27%, respectively). Black children with ASD were less likely to have a first evaluation by age 36 months than were white children with ASD (40% versus 45%). The overall median age at earliest known ASD diagnosis (51 months) was similar by sex and racial and ethnic groups; however, black children with IQ </=70 had a later median age at ASD diagnosis than white children with IQ </=70 (48 months versus 42 months). INTERPRETATION: The prevalence of ASD varied considerably across sites and was higher than previous estimates since 2014. Although no overall difference in ASD prevalence between black and white children aged 8 years was observed, the disparities for black children persisted in early evaluation and diagnosis of ASD. Hispanic children also continue to be identified as having ASD less frequently than white or black children. PUBLIC HEALTH ACTION: These findings highlight the variability in the evaluation and detection of ASD across communities and between sociodemographic groups. Continued efforts are needed for early and equitable identification of ASD and timely enrollment in services. |
Early identification of autism spectrum disorder among children aged 4 years - Early Autism and Developmental Disabilities Monitoring Network, six sites, United States, 2016
Shaw KA , Maenner MJ , Baio J , Washington A , Christensen DL , Wiggins LD , Pettygrove S , Andrews JG , White T , Rosenberg CR , Constantino JN , Fitzgerald RT , Zahorodny W , Shenouda J , Daniels JL , Salinas A , Durkin MS , Dietz PM . MMWR Surveill Summ 2020 69 (3) 1-11 PROBLEM/CONDITION: Autism spectrum disorder (ASD). PERIOD COVERED: 2016. DESCRIPTION OF SYSTEM: The Early Autism and Developmental Disabilities Monitoring (Early ADDM) Network, a subset of the overall ADDM Network, is an active surveillance program that estimates ASD prevalence and monitors early identification of ASD among children aged 4 years. Children included in surveillance year 2016 were born in 2012 and had a parent or guardian who lived in the surveillance area in Arizona, Colorado, Missouri, New Jersey, North Carolina, or Wisconsin, at any time during 2016. Children were identified from records of community sources including general pediatric health clinics, special education programs, and early intervention programs. Data from comprehensive evaluations performed by community professionals were abstracted and reviewed by trained clinicians using a standardized ASD surveillance case definition with criteria from the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5). RESULTS: In 2016, the overall ASD prevalence was 15.6 per 1,000 (one in 64) children aged 4 years for Early ADDM Network sites. Prevalence varied from 8.8 per 1,000 in Missouri to 25.3 per 1,000 in New Jersey. At every site, prevalence was higher among boys than among girls, with an overall male-to-female prevalence ratio of 3.5 (95% confidence interval [CI] = 3.1-4.1). Prevalence of ASD between non-Hispanic white (white) and non-Hispanic black (black) children was similar at each site (overall prevalence ratio: 0.9; 95% CI = 0.8-1.1). The prevalence of ASD using DSM-5 criteria was lower than the prevalence using Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) criteria at one of four sites that used criteria from both editions. Among sites where >/=60% of children aged 4 years had information about intellectual disability (intelligence quotient </=70 or examiner's statement of intellectual disability documented in an evaluation), 53% of children with ASD had co-occurring intellectual disability. Of all children aged 4 years with ASD, 84% had a first evaluation at age </=36 months and 71% of children who met the surveillance case definition had a previous ASD diagnosis from a community provider. Median age at first evaluation and diagnosis for this age group was 26 months and 33 months, respectively. Cumulative incidence of autism diagnoses received by age 48 months was higher for children aged 4 years than for those aged 8 years identified in Early ADDM Network surveillance areas in 2016. INTERPRETATION: In 2016, the overall prevalence of ASD in the Early ADDM Network using DSM-5 criteria (15.6 per 1,000 children aged 4 years) was higher than the 2014 estimate using DSM-5 criteria (14.1 per 1,000). Children born in 2012 had a higher cumulative incidence of ASD diagnoses by age 48 months compared with children born in 2008, which indicates more early identification of ASD in the younger group. The disparity in ASD prevalence has decreased between white and black children. Prevalence of co-occurring intellectual disability was higher than in 2014, suggesting children with intellectual disability continue to be identified at younger ages. More children received evaluations by age 36 months in 2016 than in 2014, which is consistent with Healthy People 2020 goals. Median age at earliest ASD diagnosis has not changed considerably since 2014. PUBLIC HEALTH ACTION: More children aged 4 years with ASD are being evaluated by age 36 months and diagnosed by age 48 months, but there is still room for improvement in early identification. Timely evaluation of children by community providers as soon as developmental concerns have been identified might result in earlier ASD diagnoses, earlier receipt of evidence-based interventions, and improved developmental outcomes. |
Disparities in documented diagnoses of autism spectrum disorder based on demographic, individual, and service factors
Wiggins LD , Durkin M , Esler A , Lee LC , Zahorodny W , Rice C , Yeargin-Allsopp M , Dowling NF , Hall-Lande J , Morrier MJ , Christensen D , Shenouda J , Baio J . Autism Res 2019 13 (3) 464-473 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 2019, 00: 1-10. (c) 2019 International Society for Autism Research,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. |
Comparison of autism spectrum disorder surveillance status based on two different diagnostic schemes: Findings from the Metropolitan Atlanta Developmental Disabilities Surveillance Program, 2012
Wiggins L , Christensen D , Van Naarden Braun K , Martin L , Baio J . PLoS One 2018 13 (11) e0208079 For the first time, the Autism and Developmental Disabilities Monitoring Network (ADDM) at the Centers for Disease Control and Prevention (CDC) reported prevalence estimates based on two different diagnostic schemes in the 2014 surveillance period. Results found substantial agreement between surveillance case status based on Diagnostic and Statistical Manual of Mental Disorders-Fourth Edition-Text Revision (DSM-IV-TR) criteria and DSM-5 criteria ASD (kappa = 0.85). No study has replicated this agreement in another independent sample of surveillance records. The objectives of this study were to (1) replicate agreement between surveillance status based on DSM-IV-TR criteria and DSM-5 criteria for ASD, (2) quantify the number of children who met surveillance status based on only DSM-IV-TR criteria and only DSM-5 criteria for ASD, and (3) evaluate differences in characteristics of these latter two groups of children. The study sample was 8-year-old children who had health and education records reviewed for ASD surveillance in metropolitan Atlanta, GA in the 2012 surveillance year. Results found substantial agreement between child's surveillance status using DSM-IV-TR criteria and DSM-5 criteria for ASD (kappa = 0.80). There were no differences in child race/ethnicity, child sex, or intellectual disability between surveillance status defined by DSM-IV-TR criteria and that defined by DSM-5 criteria. Children who met surveillance status based on DSM-IV-TR criteria, but not DSM-5 criteria, were more likely to have developmental concerns and evaluations in the first three years. Children who met surveillance status based on DSM-5 criteria, but not DSM-IV-TR criteria, were more likely to have been receiving autism-related services or previously diagnosed with ASD. These results suggest that surveillance status of ASD based on DSM-5 criteria is largely comparable to that based on DSM-IV-TR criteria, and identifies children with similar demographic and intellectual characteristics. |
Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2012
Christensen DL , Braun KVN , Baio J , Bilder D , Charles J , Constantino JN , Daniels J , Durkin MS , Fitzgerald RT , Kurzius-Spencer M , Lee LC , Pettygrove S , Robinson C , Schulz E , Wells C , Wingate MS , Zahorodny W , Yeargin-Allsopp M . MMWR Surveill Summ 2018 65 (13) 1-23 PROBLEM/CONDITION: Autism spectrum disorder (ASD). PERIOD COVERED: 2012. DESCRIPTION OF SYSTEM: The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance system that provides estimates of the prevalence and characteristics of ASD among children aged 8 years whose parents or guardians reside in 11 ADDM Network sites in the United States (Arkansas, Arizona, Colorado, Georgia, Maryland, Missouri, New Jersey, North Carolina, South Carolina, Utah, and Wisconsin). Surveillance to determine ASD case status is conducted in two phases. The first phase consists of screening and abstracting comprehensive evaluations performed by professional service providers in the community. Data sources identified for record review are categorized as either 1) education source type, including developmental evaluations to determine eligibility for special education services or 2) health care source type, including diagnostic and developmental evaluations. The second phase involves the review of all abstracted evaluations by trained clinicians to determine ASD surveillance case status. A child meets the surveillance case definition for ASD if one or more comprehensive evaluations of that child completed by a qualified professional describes behaviors that are consistent with the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision diagnostic criteria for any of the following conditions: autistic disorder, pervasive developmental disorder-not otherwise specified (including atypical autism), or Asperger disorder. This report provides ASD prevalence estimates for children aged 8 years living in catchment areas of the ADDM Network sites in 2012, overall and stratified by sex, race/ethnicity, and the type of source records (education and health records versus health records only). In addition, this report describes the proportion of children with ASD with a score consistent with intellectual disability on a standardized intellectual ability test, the age at which the earliest known comprehensive evaluation was performed, the proportion of children with a previous ASD diagnosis, the specific type of ASD diagnosis, and any special education eligibility classification. RESULTS: For 2012, the combined estimated prevalence of ASD among the 11 ADDM Network sites was 14.5 per 1,000 (one in 69) children aged 8 years. Estimated prevalence was significantly higher among boys aged 8 years (23.4 per 1,000) than among girls aged 8 years (5.2 per 1,000). Estimated ASD prevalence was significantly higher among non-Hispanic white children aged 8 years (15.3 per 1,000) compared with non-Hispanic black children (13.1 per 1,000), and Hispanic (10.2 per 1,000) children aged 8 years. Estimated prevalence varied widely among the 11 ADDM Network sites, ranging from 8.2 per 1,000 children aged 8 years (in the area of the Maryland site where only health care records were reviewed) to 24.6 per 1,000 children aged 8 years (in New Jersey, where both education and health care records were reviewed). Estimated prevalence was higher in surveillance sites where education records and health records were reviewed compared with sites where health records only were reviewed (17.1 per 1,000 and 10.4 per 1,000 children aged 8 years, respectively; p<0.05). Among children identified with ASD by the ADDM Network, 82% had a previous ASD diagnosis or educational classification; this did not vary by sex or between non-Hispanic white and non-Hispanic black children. A lower percentage of Hispanic children (78%) had a previous ASD diagnosis or classification compared with non-Hispanic white children (82%) and with non-Hispanic black children (84%). The median age at earliest known comprehensive evaluation was 40 months, and 43% of children had received an earliest known comprehensive evaluation by age 36 months. The percentage of children with an earliest known comprehensive evaluation by age 36 months was similar for boys and girls, but was higher for non-Hispanic white children (45%) compared with non-Hispanic black children (40%) and Hispanic children (39%). INTERPRETATION: Overall estimated ASD prevalence was 14.5 per 1,000 children aged 8 years in the ADDM Network sites in 2012. The higher estimated prevalence among sites that reviewed both education and health records suggests the role of special education systems in providing comprehensive evaluations and services to children with developmental disabilities. Disparities by race/ethnicity in estimated ASD prevalence, particularly for Hispanic children, as well as disparities in the age of earliest comprehensive evaluation and presence of a previous ASD diagnosis or classification, suggest that access to treatment and services might be lacking or delayed for some children. PUBLIC HEALTH ACTION: The ADDM Network will continue to monitor the prevalence and characteristics of ASD among children aged 8 years living in selected sites across the United States. Recommendations from the ADDM Network include enhancing strategies to 1) lower the age of first evaluation of ASD by community providers in accordance with the Healthy People 2020 goal that children with ASD are evaluated by age 36 months and begin receiving community-based support and services by age 48 months; 2) reduce disparities by race/ethnicity in identified ASD prevalence, the age of first comprehensive evaluation, and presence of a previous ASD diagnosis or classification; and 3) assess the effect on ASD prevalence of the revised ASD diagnostic criteria published in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. |
Correction and Republication: Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2012
Christensen DL , Braun KVN , Baio J , Bilder D , Charles J , Constantino JN , Daniels J , Durkin MS , Fitzgerald RT , Kurzius-Spencer M , Lee LC , Pettygrove S , Robinson C , Schulz E , Wells C , Wingate MS , Zahorodny W , Yeargin-Allsopp M . MMWR Morb Mortal Wkly Rep 2018 67 (45) 1279 On April 1, 2016, MMWR Surveillance Summaries published "Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years-Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2012" (1). On June 5, 2018, the authors informed MMWR about a number of inadvertent errors throughout the report that resulted from reporting of autism spectrum disorder cases among persons who did not live in the geographic surveillance area. Corrections of these errors do not change the interpretation or the conclusions of the original report. In accordance with December 2017 guidance from the International Committee of Medical Journal Editors (2), MMWR has corrected and republished the report (3). The republished report includes the original report with clearly marked corrections in supplementary materials. |
Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014.
Baio J , Wiggins L , Christensen DL , Maenner MJ , Daniels J , Warren Z , Kurzius-Spencer M , Zahorodny W , Robinson Rosenberg C , White T , Durkin MS , Imm P , Nikolaou L , Yeargin-Allsopp M , Lee LC , Harrington R , Lopez M , Fitzgerald RT , Hewitt A , Pettygrove S , Constantino JN , Vehorn A , Shenouda J , Hall-Lande J , Van Naarden Braun K , Dowling NF . MMWR Surveill Summ 2018 67 (6) 1-23 PROBLEM/CONDITION: Autism spectrum disorder (ASD). PERIOD COVERED: 2014. DESCRIPTION OF SYSTEM: The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance system that provides estimates of the prevalence of autism spectrum disorder (ASD) among children aged 8 years whose parents or guardians reside within 11 ADDM sites in the United States (Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee, and Wisconsin). ADDM surveillance is conducted in two phases. The first phase involves review and abstraction of comprehensive evaluations that were completed by professional service providers in the community. Staff completing record review and abstraction receive extensive training and supervision and are evaluated according to strict reliability standards to certify effective initial training, identify ongoing training needs, and ensure adherence to the prescribed methodology. Record review and abstraction occurs in a variety of data sources ranging from general pediatric health clinics to specialized programs serving children with developmental disabilities. In addition, most of the ADDM sites also review records for children who have received special education services in public schools. In the second phase of the study, all abstracted information is reviewed systematically by experienced clinicians to determine ASD case status. A child is considered to meet the surveillance case definition for ASD if he or she displays behaviors, as described on one or more comprehensive evaluations completed by community-based professional providers, consistent with the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) diagnostic criteria for autistic disorder; pervasive developmental disorder-not otherwise specified (PDD-NOS, including atypical autism); or Asperger disorder. This report provides updated ASD prevalence estimates for children aged 8 years during the 2014 surveillance year, on the basis of DSM-IV-TR criteria, and describes characteristics of the population of children with ASD. In 2013, the American Psychiatric Association published the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), which made considerable changes to ASD diagnostic criteria. The change in ASD diagnostic criteria might influence ADDM ASD prevalence estimates; therefore, most (85%) of the records used to determine prevalence estimates based on DSM-IV-TR criteria underwent additional review under a newly operationalized surveillance case definition for ASD consistent with the DSM-5 diagnostic criteria. Children meeting this new surveillance case definition could qualify on the basis of one or both of the following criteria, as documented in abstracted comprehensive evaluations: 1) behaviors consistent with the DSM-5 diagnostic features; and/or 2) an ASD diagnosis, whether based on DSM-IV-TR or DSM-5 diagnostic criteria. Stratified comparisons of the number of children meeting either of these two case definitions also are reported. RESULTS: For 2014, the overall prevalence of ASD among the 11 ADDM sites was 16.8 per 1,000 (one in 59) children aged 8 years. Overall ASD prevalence estimates varied among sites, from 13.1-29.3 per 1,000 children aged 8 years. ASD prevalence estimates also varied by sex and race/ethnicity. Males were four times more likely than females to be identified with ASD. Prevalence estimates were higher for non-Hispanic white (henceforth, white) children compared with non-Hispanic black (henceforth, black) children, and both groups were more likely to be identified with ASD compared with Hispanic children. Among the nine sites with sufficient data on intellectual ability, 31% of children with ASD were classified in the range of intellectual disability (intelligence quotient [IQ] <70), 25% were in the borderline range (IQ 71-85), and 44% had IQ scores in the average to above average range (i.e., IQ >85). The distribution of intellectual ability varied by sex and race/ethnicity. Although mention of developmental concerns by age 36 months was documented for 85% of children with ASD, only 42% had a comprehensive evaluation on record by age 36 months. The median age of earliest known ASD diagnosis was 52 months and did not differ significantly by sex or race/ethnicity. For the targeted comparison of DSM-IV-TR and DSM-5 results, the number and characteristics of children meeting the newly operationalized DSM-5 case definition for ASD were similar to those meeting the DSM-IV-TR case definition, with DSM-IV-TR case counts exceeding DSM-5 counts by less than 5% and approximately 86% overlap between the two case definitions (kappa = 0.85). INTERPRETATION: Findings from the ADDM Network, on the basis of 2014 data reported from 11 sites, provide updated population-based estimates of the prevalence of ASD among children aged 8 years in multiple communities in the United States. The overall ASD prevalence estimate of 16.8 per 1,000 children aged 8 years in 2014 is higher than previously reported estimates from the ADDM Network. Because the ADDM sites do not provide a representative sample of the entire United States, the combined prevalence estimates presented in this report cannot be generalized to all children aged 8 years in the United States. Consistent with reports from previous ADDM surveillance years, findings from 2014 were marked by variation in ASD prevalence when stratified by geographic area, sex, and level of intellectual ability. Differences in prevalence estimates between black and white children have diminished in most sites, but remained notable for Hispanic children. For 2014, results from application of the DSM-IV-TR and DSM-5 case definitions were similar, overall and when stratified by sex, race/ethnicity, DSM-IV-TR diagnostic subtype, or level of intellectual ability. PUBLIC HEALTH ACTION: Beginning with surveillance year 2016, the DSM-5 case definition will serve as the basis for ADDM estimates of ASD prevalence in future surveillance reports. Although the DSM-IV-TR case definition will eventually be phased out, it will be applied in a limited geographic area to offer additional data for comparison. Future analyses will examine trends in the continued use of DSM-IV-TR diagnoses, such as autistic disorder, PDD-NOS, and Asperger disorder in health and education records, documentation of symptoms consistent with DSM-5 terminology, and how these trends might influence estimates of ASD prevalence over time. The latest findings from the ADDM Network provide evidence that the prevalence of ASD is higher than previously reported estimates and continues to vary among certain racial/ethnic groups and communities. With prevalence of ASD ranging from 13.1 to 29.3 per 1,000 children aged 8 years in different communities throughout the United States, the need for behavioral, educational, residential, and occupational services remains high, as does the need for increased research on both genetic and nongenetic risk factors for ASD. |
Autism spectrum disorder among US children (2002-2010): Socioeconomic, racial, and ethnic disparities
Durkin MS , Maenner MJ , Baio J , Christensen D , Daniels J , Fitzgerald R , Imm P , Lee LC , Schieve LA , Van Naarden Braun K , Wingate MS , Yeargin-Allsopp M . Am J Public Health 2017 107 (11) e1-e9 OBJECTIVES: To describe the association between indicators of socioeconomic status (SES) and the prevalence of autism spectrum disorder (ASD) in the United States during the period 2002 to 2010, when overall ASD prevalence among children more than doubled, and to determine whether SES disparities account for ongoing racial and ethnic disparities in ASD prevalence. METHODS: We computed ASD prevalence and 95% confidence intervals (CIs) from population-based surveillance, census, and survey data. We defined SES categories by using area-level education, income, and poverty indicators. We ascertained ASD in 13 396 of 1 308 641 8-year-old children under surveillance. RESULTS: The prevalence of ASD increased with increasing SES during each surveillance year among White, Black, and Hispanic children. The prevalence difference between high- and low-SES groups was relatively constant over time (3.9/1000 [95% CI = 3.3, 4.5] in 2002 and 4.1/1000 [95% CI = 3.6, 4.6] in the period 2006-2010). Significant racial/ethnic differences in ASD prevalence remained after stratification by SES. CONCLUSIONS: A positive SES gradient in ASD prevalence according to US surveillance data prevailed between 2002 and 2010, and racial and ethnic disparities in prevalence persisted during this time among low-SES children. (Am J Public Health. Published online ahead of print September 21, 2017: e1-e9. doi:10.2105/AJPH.2017.304032). |
Prevalence and characteristics of autism spectrum disorder among children aged 8 years - Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2012
Christensen DL , Baio J , Braun KV , Bilder D , Charles J , Constantino JN , Daniels J , Durkin MS , Fitzgerald RT , Kurzius-Spencer M , Lee LC , Pettygrove S , Robinson C , Schulz E , Wells C , Wingate MS , Zahorodny W , Yeargin-Allsopp M . MMWR Surveill Summ 2016 65 (3) 1-23 PROBLEM/CONDITION: Autism spectrum disorder (ASD). PERIOD COVERED: 2012. DESCRIPTION OF SYSTEM: The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance system that provides estimates of the prevalence and characteristics of ASD among children aged 8 years whose parents or guardians reside in 11 ADDM Network sites in the United States (Arkansas, Arizona, Colorado, Georgia, Maryland, Missouri, New Jersey, North Carolina, South Carolina, Utah, and Wisconsin). Surveillance to determine ASD case status is conducted in two phases. The first phase consists of screening and abstracting comprehensive evaluations performed by professional service providers in the community. Data sources identified for record review are categorized as either 1) education source type, including developmental evaluations to determine eligibility for special education services or 2) health care source type, including diagnostic and developmental evaluations. The second phase involves the review of all abstracted evaluations by trained clinicians to determine ASD surveillance case status. A child meets the surveillance case definition for ASD if one or more comprehensive evaluations of that child completed by a qualified professional describes behaviors that are consistent with the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision diagnostic criteria for any of the following conditions: autistic disorder, pervasive developmental disorder-not otherwise specified (including atypical autism), or Asperger disorder. This report provides ASD prevalence estimates for children aged 8 years living in catchment areas of the ADDM Network sites in 2012, overall and stratified by sex, race/ethnicity, and the type of source records (education and health records versus health records only). In addition, this report describes the proportion of children with ASD with a score consistent with intellectual disability on a standardized intellectual ability test, the age at which the earliest known comprehensive evaluation was performed, the proportion of children with a previous ASD diagnosis, the specific type of ASD diagnosis, and any special education eligibility classification. RESULTS: For 2012, the combined estimated prevalence of ASD among the 11 ADDM Network sites was 14.6 per 1,000 (one in 68) children aged 8 years. Estimated prevalence was significantly higher among boys aged 8 years (23.6 per 1,000) than among girls aged 8 years (5.3 per 1,000). Estimated ASD prevalence was significantly higher among non-Hispanic white children aged 8 years (15.5 per 1,000) compared with non-Hispanic black children (13.2 per 1,000), and Hispanic (10.1 per 1,000) children aged 8 years. Estimated prevalence varied widely among the 11 ADDM Network sites, ranging from 8.2 per 1,000 children aged 8 years (in the area of the Maryland site where only health care records were reviewed) to 24.6 per 1,000 children aged 8 years (in New Jersey, where both education and health care records were reviewed). Estimated prevalence was higher in surveillance sites where education records and health records were reviewed compared with sites where health records only were reviewed (17.1 per 1,000 and 10.7 per 1,000 children aged 8 years, respectively; p<0.05). Among children identified with ASD by the ADDM Network, 82% had a previous ASD diagnosis or educational classification; this did not vary by sex or between non-Hispanic white and non-Hispanic black children. A lower percentage of Hispanic children (78%) had a previous ASD diagnosis or classification compared with non-Hispanic white children (82%) and with non-Hispanic black children (84%). The median age at earliest known comprehensive evaluation was 40 months, and 43% of children had received an earliest known comprehensive evaluation by age 36 months. The percentage of children with an earliest known comprehensive evaluation by age 36 months was similar for boys and girls, but was higher for non-Hispanic white children (45%) compared with non-Hispanic black children (40%) and Hispanic children (39%). INTERPRETATION: Overall estimated ASD prevalence was 14.6 per 1,000 children aged 8 years in the ADDM Network sites in 2012. The higher estimated prevalence among sites that reviewed both education and health records suggests the role of special education systems in providing comprehensive evaluations and services to children with developmental disabilities. Disparities by race/ethnicity in estimated ASD prevalence, particularly for Hispanic children, as well as disparities in the age of earliest comprehensive evaluation and presence of a previous ASD diagnosis or classification, suggest that access to treatment and services might be lacking or delayed for some children. PUBLIC HEALTH ACTION: The ADDM Network will continue to monitor the prevalence and characteristics of ASD among children aged 8 years living in selected sites across the United States. Recommendations from the ADDM Network include enhancing strategies to 1) lower the age of first evaluation of ASD by community providers in accordance with the Healthy People 2020 goal that children with ASD are evaluated by age 36 months and begin receiving community-based support and services by age 48 months; 2) reduce disparities by race/ethnicity in identified ASD prevalence, the age of first comprehensive evaluation, and presence of a previous ASD diagnosis or classification; and 3) assess the effect on ASD prevalence of the revised ASD diagnostic criteria published in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. |
Prevalence and characteristics of autism spectrum disorder among 4-year-old children in the Autism and Developmental Disabilities Monitoring Network
Christensen DL , Bilder DA , Zahorodny W , Pettygrove S , Durkin MS , Fitzgerald RT , Rice C , Kurzius-Spencer M , Baio J , Yeargin-Allsopp M . J Dev Behav Pediatr 2015 37 (1) 1-8 OBJECTIVE: Early identification of children with autism spectrum disorder (ASD) facilitates timely access to intervention services. Yet, few population-based data exist on ASD identification among preschool-aged children. The authors aimed to describe ASD prevalence and characteristics among 4-year-old children in 5 of 11 sites participating in the 2010 Autism and Developmental Disabilities Monitoring Network. METHOD: Children with ASD were identified through screening of health and education records for ASD indicators, data abstraction and compilation for each child, and clinician review of records. ASD prevalence estimates, ages at first evaluation and ASD diagnosis, cognitive test scores, and demographics were compared for 4-year-old children and 8-year-old children living in the same areas. RESULTS: Among 58,467 children in these 5 sites, 4-year-old ASD prevalence was 13.4 per 1000, which was 30% lower than 8-year-old ASD prevalence. Prevalence of ASD without cognitive impairment was 40% lower among 4-year-olds compared with 8-year-olds, but prevalence of ASD with cognitive impairment was 20% higher among 4-year-olds compared with 8-year-olds. Among 4-year-olds with ASD, female and non-Hispanic white children were more likely to receive their first comprehensive evaluation by age 36 months compared with male and non-Hispanic black children, respectively. Among children diagnosed with ASD by age 48 months, median age at first comprehensive evaluation was 27 months for 4-year-olds compared with 32 months for 8-year-olds. CONCLUSION: Population-based ASD surveillance among 4-year-old children provides valuable information about the early identification of children with ASD and suggests progression toward lowering the age of first ASD evaluation within participating Autism and Developmental Disabilities Monitoring communities. |
Autism spectrum disorder prevalence and proximity to industrial facilities releasing arsenic, lead or mercury
Dickerson AS , Rahbar MH , Han I , Bakian AV , Bilder DA , Harrington RA , Pettygrove S , Durkin M , Kirby RS , Wingate MS , Tian LH , Zahorodny WM , Pearson DA , Moye LA 3rd , Baio J . Sci Total Environ 2015 536 245-251 Prenatal and perinatal exposures to air pollutants have been shown to adversely affect birth outcomes in offspring and may contribute to prevalence of autism spectrum disorder (ASD). For this ecologic study, we evaluated the association between ASD prevalence, at the census tract level, and proximity of tract centroids to the closest industrial facilities releasing arsenic, lead or mercury during the 1990s. We used 2000 to 2008 surveillance data from five sites of the Autism and Developmental Disabilities Monitoring (ADDM) network and 2000 census data to estimate prevalence. Multi-level negative binomial regression models were used to test associations between ASD prevalence and proximity to industrial facilities in existence from 1991 to 1999 according to the US Environmental Protection Agency Toxics Release Inventory (USEPA-TRI). Data for 2489 census tracts showed that after adjustment for demographic and socio-economic area-based characteristics, ASD prevalence was higher in census tracts located in the closest 10th percentile compared of distance to those in the furthest 50th percentile (adjusted RR=1.27, 95% CI: (1.00, 1.61), P=0.049). The findings observed in this study are suggestive of the association between urban residential proximity to industrial facilities emitting air pollutants and higher ASD prevalence. |
Prevalence of autism spectrum disorder among children aged 8 years - autism and developmental disabilities monitoring network, 11 sites, United States, 2010
Autism and Developmental Disabilities Monitoring Network Surveillance Year 2010 Principal Investigators , Centers for Disease Control and Prevention , Baio J , Christensen D , Van Naarden Braun K , Clayton H , Goodman A , Doernberg N , Yeargin-Allsopp M , Washington A , Frenkel G , Wright V . MMWR Surveill Summ 2014 63 (2) 1-21 PROBLEM/CONDITION: Autism spectrum disorder (ASD). PERIOD COVERED: 2010. DESCRIPTION OF SYSTEM: The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance system in the United States that provides estimates of the prevalence of ASD and other characteristics among children aged 8 years whose parents or guardians live in 11 ADDM sites in the United States. ADDM surveillance is conducted in two phases. The first phase consists of screening and abstracting comprehensive evaluations performed by professional providers in the community. Multiple data sources for these evaluations include general pediatric health clinics and specialized programs for children with developmental disabilities. In addition, most ADDM Network sites also review and abstract records of children receiving special education services in public schools. The second phase involves review of all abstracted evaluations by trained clinicians to determine ASD surveillance case status. A child meets the surveillance case definition for ASD if a comprehensive evaluation of that child completed by a qualified professional describes behaviors consistent with the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) diagnostic criteria for any of the following conditions: autistic disorder, pervasive developmental disorder-not otherwise specified (including atypical autism), or Asperger disorder. This report provides updated prevalence estimates for ASD from the 2010 surveillance year. In addition to prevalence estimates, characteristics of the population of children with ASD are described. RESULTS: For 2010, the overall prevalence of ASD among the ADDM sites was 14.7 per 1,000 (one in 68) children aged 8 years. Overall ASD prevalence estimates varied among sites from 5.7 to 21.9 per 1,000 children aged 8 years. ASD prevalence estimates also varied by sex and racial/ethnic group. Approximately one in 42 boys and one in 189 girls living in the ADDM Network communities were identified as having ASD. Non-Hispanic white children were approximately 30% more likely to be identified with ASD than non-Hispanic black children and were almost 50% more likely to be identified with ASD than Hispanic children. Among the seven sites with sufficient data on intellectual ability, 31% of children with ASD were classified as having IQ scores in the range of intellectual disability (IQ ≤70), 23% in the borderline range (IQ = 71-85), and 46% in the average or above average range of intellectual ability (IQ >85). The proportion of children classified in the range of intellectual disability differed by race/ethnicity. Approximately 48% of non-Hispanic black children with ASD were classified in the range of intellectual disability compared with 38% of Hispanic children and 25% of non-Hispanic white children. The median age of earliest known ASD diagnosis was 53 months and did not differ significantly by sex or race/ethnicity. INTERPRETATION: These findings from CDC's ADDM Network, which are based on 2010 data reported from 11 sites, provide updated population-based estimates of the prevalence of ASD in multiple communities in the United States. Because the ADDM Network sites do not provide a representative sample of the entire United States, the combined prevalence estimates presented in this report cannot be generalized to all children aged 8 years in the United States population. Consistent with previous reports from the ADDM Network, findings from the 2010 surveillance year were marked by significant variations in ASD prevalence by geographic area, sex, race/ethnicity, and level of intellectual ability. The extent to which this variation might be attributable to diagnostic practices, underrecognition of ASD symptoms in some racial/ethnic groups, socioeconomic disparities in access to services, and regional differences in clinical or school-based practices that might influence the findings in this report is unclear. PUBLIC HEALTH ACTION: ADDM Network investigators will continue to monitor the prevalence of ASD in select communities, with a focus on exploring changes within these communities that might affect both the observed prevalence of ASD and population-based characteristics of children identified with ASD. Although ASD is sometimes diagnosed by 2 years of age, the median age of the first ASD diagnosis remains older than age 4 years in the ADDM Network communities. Recommendations from the ADDM Network include enhancing strategies to address the need for 1) standardized, widely adopted measures to document ASD severity and functional limitations associated with ASD diagnosis; 2) improved recognition and documentation of symptoms of ASD, particularly among both boys and girls, children without intellectual disability, and children in all racial/ethnic groups; and 3) decreasing the age when children receive their first evaluation for and a diagnosis of ASD and are enrolled in community-based support systems. |
Population attributable fractions for three perinatal risk factors for autism spectrum disorders, 2002 and 2008 autism and developmental disabilities monitoring network
Schieve LA , Tian LH , Baio J , Rankin K , Rosenberg D , Wiggins L , Maenner MJ , Yeargin-Allsopp M , Durkin M , Rice C , King L , Kirby RS , Wingate MS , Devine O . Ann Epidemiol 2014 24 (4) 260-6 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. |
Mental health surveillance among children--United States, 2005-2011
Perou R , Bitsko RH , Blumberg SJ , Pastor P , Ghandour RM , Gfroerer JC , Hedden SL , Crosby AE , Visser SN , Schieve LA , Parks SE , Hall JE , Brody D , Simile CM , Thompson WW , Baio J , Avenevoli S , Kogan MD , Huang LN . MMWR Suppl 2013 62 (2) 1-35 Mental disorders among children are described as "serious deviations from expected cognitive, social, and emotional development" (US Department of Health and Human Services Health Resources and Services Administration, Maternal and Child Health Bureau. Mental health: A report of the Surgeon General. Rockville, MD: US Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, and National Institutes of Health, National Institute of Mental Health; 1999). These disorders are an important public health issue in the United States because of their prevalence, early onset, and impact on the child, family, and community, with an estimated total annual cost of $247 billion. A total of 13%-20% of children living in the United States experience a mental disorder in a given year, and surveillance during 1994-2011 has shown the prevalence of these conditions to be increasing. Suicide, which can result from the interaction of mental disorders and other factors, was the second leading cause of death among children aged 12-17 years in 2010. Surveillance efforts are critical for documenting the impact of mental disorders and for informing policy, prevention, and resource allocation. This report summarizes information about ongoing federal surveillance systems that can provide estimates of the prevalence of mental disorders and indicators of mental health among children living in the United States, presents estimates of childhood mental disorders and indicators from these systems during 2005-2011, explains limitations, and identifies gaps in information while presenting strategies to bridge those gaps. |
Prevalence of autism spectrum disorders--Autism and Developmental Disabilities Monitoring Network, 14 sites, United States, 2008
Autism and Developmental Disabilities Monitoring Network Surveillance Year 2008 Principal Investigators , Centers for Disease Control and Prevention , Baio J , Rice Catherine , Van Naarden Braun K , Phillips K , Doernberg N , Yeargin-Allsopp M , Graham Schwartz S , Wojcik J , Wright V , Lance R . MMWR Surveill Summ 2012 61 (3) 1-19 PROBLEM/CONDITION: Autism spectrum disorders (ASDs) are a group of developmental disabilities characterized by impairments in social interaction and communication and by restricted, repetitive, and stereotyped patterns of behavior. Symptoms typically are apparent before age 3 years. The complex nature of these disorders, coupled with a lack of biologic markers for diagnosis and changes in clinical definitions over time, creates challenges in monitoring the prevalence of ASDs. Accurate reporting of data is essential to understand the prevalence of ASDs in the population and can help direct research. PERIOD COVERED: 2008. DESCRIPTION OF SYSTEM: The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance system that estimates the prevalence of ASDs and describes other characteristics among children aged 8 years whose parents or guardians reside within 14 ADDM sites in the United States. ADDM does not rely on professional or family reporting of an existing ASD diagnosis or classification to ascertain case status. Instead, information is obtained from children's evaluation records to determine the presence of ASD symptoms at any time from birth through the end of the year when the child reaches age 8 years. ADDM focuses on children aged 8 years because a baseline study conducted by CDC demonstrated that this is the age of identified peak prevalence. A child is included as meeting the surveillance case definition for an ASD if he or she displays behaviors (as described on a comprehensive evaluation completed by a qualified professional) consistent with the American Psychiatric Association's Diagnostic and Statistical Manual-IV, Text Revision (DSM-IV-TR) diagnostic criteria for any of the following conditions: Autistic Disorder; Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS, including Atypical Autism); or Asperger Disorder. The first phase of the ADDM methodology involves screening and abstraction of comprehensive evaluations completed by professional providers at multiple data sources in the community. Multiple data sources are included, ranging from general pediatric health clinics to specialized programs for children with developmental disabilities. In addition, many ADDM sites also review and abstract records of children receiving special education services in public schools. In the second phase of the study, all abstracted evaluations are reviewed by trained clinicians to determine ASD case status. Because the case definition and surveillance methods have remained consistent across all ADDM surveillance years to date, comparisons to results for earlier surveillance years can be made. This report provides updated ASD prevalence estimates from the 2008 surveillance year, representing 14 ADDM areas in the United States. In addition to prevalence estimates, characteristics of the population of children with ASDs are described, as well as detailed comparisons of the 2008 surveillance year findings with those for the 2002 and 2006 surveillance years. RESULTS: For 2008, the overall estimated prevalence of ASDs among the 14 ADDM sites was 11.3 per 1,000 (one in 88) children aged 8 years who were living in these communities during 2008. Overall ASD prevalence estimates varied widely across all sites (range: 4.8-21.2 per 1,000 children aged 8 years). ASD prevalence estimates also varied widely by sex and by racial/ethnic group. Approximately one in 54 boys and one in 252 girls living in the ADDM Network communities were identified as having ASDs. Comparison of 2008 findings with those for earlier surveillance years indicated an increase in estimated ASD prevalence of 23% when the 2008 data were compared with the data for 2006 (from 9.0 per 1,000 children aged 8 years in 2006 to 11.0 in 2008 for the 11 sites that provided data for both surveillance years) and an estimated increase of 78% when the 2008 data were compared with the data for 2002 (from 6.4 per 1,000 children aged 8 years in 2002 to 11.4 in 2008 for the 13 sites that provided data for both surveillance years). Because the ADDM Network sites do not make up a nationally representative sample, these combined prevalence estimates should not be generalized to the United States as a whole. INTERPRETATION: These data confirm that the estimated prevalence of ASDs identified in the ADDM network surveillance populations continues to increase. The extent to which these increases reflect better case ascertainment as a result of increases in awareness and access to services or true increases in prevalence of ASD symptoms is not known. ASDs continue to be an important public health concern in the United States, underscoring the need for continued resources to identify potential risk factors and to provide essential supports for persons with ASDs and their families. PUBLIC HEALTH ACTION: Given substantial increases in ASD prevalence estimates over a relatively short period, overall and within various subgroups of the population, continued monitoring is needed to quantify and understand these patterns. With 5 biennial surveillance years completed in the past decade, the ADDM Network continues to monitor prevalence and characteristics of ASDs and other developmental disabilities for the 2010 surveillance year. Further work is needed to evaluate multiple factors contributing to increases in estimated ASD prevalence over time. ADDM Network investigators continue to explore these factors, with a focus on understanding disparities in the identification of ASDs among certain subgroups and on how these disparities have contributed to changes in the estimated prevalence of ASDs. CDC is partnering with other federal and private partners in a coordinated response to identify risk factors for ASDs and to meet the needs of persons with ASDs and their families. |
Retention of autism spectrum diagnoses by community professionals: findings from the Autism and Developmental Disabilities Monitoring Network, 2000 and 2006
Wiggins LD , Baio J , Schieve L , Lee LC , Nicholas J , Rice CE . J Dev Behav Pediatr 2012 33 (5) 387-95 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. |
Effect of incorporating adaptive functioning scores on the prevalence of intellectual disability
Obi O , Van Naarden Braun K , Baio J , Drews-Botsch C , Devine O , Yeargin-Allsopp M . Am J Intellect Dev Disabil 2011 116 (5) 360-70 Surveillance and epidemiologic research on intellectual disability often do not incorporate adaptive functioning (AF) data. Exclusion of AF data leads to overestimation of the prevalence of intellectual disability, the extent of which is not known. In this study, the authors evaluated the effect of incorporating AF data on overall intellectual disability prevalence according to sociodemographic, economic, and severity characteristics. Between 2002 and 2006, the Metropolitan Atlanta Developmental Disabilities Surveillance Program identified 1,595 8-year-old children who met the study's intellectual disability surveillance-case definition of IQ ≤ 70. AF scores were not available for 9.2% of the case children, specifically those with mild intellectual disability and low socioeconomic backgrounds. Prevalence estimates showed few substantive changes when incorporating AF data. The authors conclude that use of IQ data alone appears to be appropriate for measuring population intellectual disability prevalence. |
Risk for cognitive deficit in a population-based sample of U.S. children with autism spectrum disorders: variation by perinatal health factors
Schieve LA , Baio J , Rice CE , Durkin M , Kirby RS , Drews-Botsch C , Miller LA , Nicholas JS , Cunniff CM . Disabil Health J 2010 3 (3) 202-212 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. 2010 Elsevier Inc. All rights reserved. |
Changes in autism spectrum disorder prevalence in 4 areas of the United States
Rice C , Nicholas J , Baio J , Pettygrove S , Lee LC , Van Naarden Braun K , Doernberg N , Cunniff C , Newschaffer C , Meaney FJ , Charles J , Washington A , King L , Kolotos M , Mancilla K , Mervis CA , Carpenter L , Yeargin-Allsopp M . Disabil Health J 2010 3 (3) 186-201 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. 2010 Elsevier Inc. All rights reserved. |
Prevalence of autism spectrum disorders - Autism and Developmental Disabilities Monitoring Network, United States, 2006
Autism and Developmental Disabilities Monitoring Network Surveillance Year 2006 Principal Investigators , Centers for Disease Control and Prevention , Rice Catherine , Baio J , Van Naarden Braun K , Yeargin-Allsopp M , Graham S , Lance R , Plummer L , Jones L , Wojcik J , Doernberg N . MMWR Surveill Summ 2009 58 (10) 1-20 PROBLEM/CONDITION: Autism spectrum disorders (ASDs) are a group of developmental disabilities characterized by atypical development in socialization, communication, and behavior. ASDs typically are apparent before age 3 years, with associated impairments affecting multiple areas of a person's life. Because no biologic marker exists for ASDs, identification is made by professionals who evaluate a child's developmental progress to identify the presence of developmental disorders. REPORTING PERIOD: 2006. METHODS: Earlier surveillance efforts indicated that age 8 years is a reasonable index age at which to monitor peak prevalence. The identified prevalence of ASDs in U.S. children aged 8 years was estimated through a systematic retrospective review of evaluation records in multiple sites participating in the Autism and Developmental Disabilities Monitoring (ADDM) Network. Data were collected from existing records in 11 ADDM Network sites (areas of Alabama, Arizona, Colorado, Florida, Georgia, Maryland, Missouri, North Carolina, Pennsylvania, South Carolina, and Wisconsin) for 2006. To analyze changes in identified ASD prevalence, CDC compared the 2006 data with data collected from 10 sites (all sites noted above except Florida) in 2002. Children aged 8 years with a notation of an ASD or descriptions consistent with an ASD were identified through screening and abstraction of existing health and education records containing professional assessments of the child's developmental progress at health-care or education facilities. Children aged 8 years whose parent(s) or legal guardian(s) resided in the respective areas in 2006 met the case definition for an ASD if their records documented behaviors consistent with the Diagnostic and Statistical Manual of Mental Disorders, 4th edition, text revision (DSM-IV-TR) criteria for autistic disorder, pervasive developmental disorder--not otherwise specified (PDD NOS), or Asperger disorder. Presence of an identified ASD was determined through a review of data abstracted from developmental evaluation records by trained clinician reviewers. RESULTS: For the 2006 surveillance year, 2,757 (0.9%) of 308,038 [corrected] children aged 8 years residing in the 11 ADDM sites were identified as having an ASD, indicating an overall average prevalence of 9.0 per 1,000 population (95% confidence interval [CI] = 8.6--9.3). ASD prevalence per 1,000 children aged 8 years ranged from 4.2 in Florida to 12.1 in Arizona and Missouri, with prevalence for the majority of sites ranging between 7.6 and 10.4. For 2006, ASD prevalence was significantly lower in Florida (p<0.001) and Alabama (p<0.05) and higher in Arizona and Missouri (p<0.05) than in all other sites. The ratio of males to females ranged from 3.2:1 in Alabama to 7.6:1 in Florida. ASD prevalence varied by type of ascertainment source, with higher average prevalence in sites with access to health and education records (10.0) compared with sites with health records only (7.5). Although parental or professional concerns regarding development before age 36 months were noted in the evaluation records of the majority of children who were identified as having an ASD, the median age of earliest documented ASD diagnosis was much later (range: 41 months [Florida]-60 months [Colorado]). Of 10 sites that collected data for both the 2002 and 2006 surveillance years, nine observed an increase in ASD prevalence (range: 27%-95% increase; p<0.01), with increases among males in all sites and among females in four of 11 sites, and variation among other subgroups. INTERPRETATION: In 2006, on average, approximately 1% or one child in every 110 in the 11 ADDM sites was classified as having an ASD (approximate range: 1:80-1:240 children [males: 1:70; females: 1:315]). The average prevalence of ASDs identified among children aged 8 years increased 57% in 10 sites from the 2002 to the 2006 ADDM surveillance year. Although improved ascertainment accounts for some of the prevalence increases documented in the ADDM sites, a true increase in the risk for children to develop ASD symptoms cannot be ruled out. On average, although delays in identification persisted, ASDs were being diagnosed by community professionals at earlier ages in 2006 than in 2002. PUBLIC HEALTH ACTIONS: These results indicate an increased prevalence of identified ASDs among U.S. children aged 8 years and underscore the need to regard ASDs as an urgent public health concern. Continued monitoring is needed to document and understand changes over time, including the multiple ascertainment and potential risk factors likely to be contributing. Research is needed to ascertain the factors that put certain persons at risk, and concerted efforts are essential to provide support for persons with ASDs, their families, and communities to improve long-term outcome. |
Developmental regression in children with an autism spectrum disorder identified by a population-based surveillance system
Wiggins LD , Rice CE , Baio J . Autism 2009 13 (4) 357-74 This study evaluated the phenomenon of autistic regression using population-based data. The sample comprised 285 children who met the autism spectrum disorder (ASD) case definition within an ongoing surveillance program. Results indicated that children with a previously documented ASD diagnosis had higher rates of autistic regression than children who met the ASD surveillance definition but did not have a clearly documented ASD diagnosis in their records (17-26 percent of surveillance cases). Most children regressed around 24 months of age and boys were more likely to have documented regression than girls. Half of the children with regression had developmental concerns noted prior to the loss of skills. Moreover, children with autistic regression were more likely to show certain associated features, including cognitive impairment.These data indicate that some children with ASD experience a loss of skills in the first few years of life and may have a unique symptom profile. |
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