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BACKGROUND: No data exist at the population level on what tests are used to aid in the diagnosis of autism spectrum disorder in community practice. OBJECTIVES: To describe autism spectrum disorder testing practices to inform autism spectrum disorder identification efforts. METHODS: Data are from the Autism and Developmental Disabilities Monitoring Network, a multi-site surveillance system reporting prevalence estimates and characteristics of 8-year-old children with autism spectrum disorder. Percentages of children with autism spectrum disorder who received any autism spectrum disorder test or a 'gold standard' test were calculated by site, sex, race, median household income, and intellectual ability status. Risk ratios were calculated to compare group differences. RESULTS: Of 5058 8-year-old children with autism spectrum disorder across 11 sites, 3236 (64.0%) had a record of any autism spectrum disorder test and 2136 (42.2%) had a 'gold standard' ADOS or ADI-R test. Overall, 115 children (2.3%) had both the ADOS and ADI-R in their records. Differences persisted across race, median household income, and intellectual ability status. Asian/Pacific Islander children had the highest percent receiving any ASD test (71.8%; other groups range: 57.4-66.0%) and White children had the highest percent receiving 'gold standard' tests (46.4%; other groups range: 35.6-43.2%). Children in low-income neighbourhoods had a lower percent of any test (62.5%) and 'gold standard' tests (39.4%) compared to medium (70.2% and 47.5%, respectively) and high (69.6% and 46.8%, respectively) income neighbourhoods. Children with intellectual disability had a lower percent of any ASD test (81.7%) and 'gold standard' tests (52.6%) compared to children without intellectual disability (84.0% and 57.6%, respectively). CONCLUSIONS: Autism spectrum disorder testing practices vary widely by site and differ by race and presence of co-occurring intellectual disability, suggesting opportunities to standardise and/or improve autism spectrum disorder identification practices.
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Trastorno del Espectro Autista , Humanos , Masculino , Niño , Femenino , Trastorno del Espectro Autista/diagnóstico , Trastorno del Espectro Autista/epidemiología , Estados Unidos/epidemiología , Discapacidades del Desarrollo/diagnóstico , Discapacidades del Desarrollo/epidemiología , Prevalencia , Vigilancia de la Población/métodosRESUMEN
OBJECTIVE: Our objectives with this study were to describe the frequency of selected cooccurring health conditions and individualized education program (IEP) services and post-high school transition planning for adolescents with autism spectrum disorder and identify disparities by sex, intellectual ability, race or ethnicity, and geographic area. METHODS: The study sample included 1787 adolescents born in 2004 who were identified as having autism through a health and education record review through age 16 years in 2020. These adolescents were part of a longitudinal population-based surveillance birth cohort from the Autism and Developmental Disabilities Monitoring Network from 2004 to 2020 in 5 US catchment areas. RESULTS: Attention deficit hyperactivity disorder (47%) and anxiety (39%) were the most common cooccurring health conditions. Anxiety was less commonly identified for those with intellectual disability than those without. It was also less commonly identified among Black adolescents compared with White or Hispanic adolescents. There was wide variation across Autism and Developmental Disabilities Monitoring Network sites in the provision of school-based IEP services. Students with intellectual disability were less likely to receive school-based mental health services and more likely to have a goal for postsecondary independent living skills compared with those without intellectual disability. A total of 37% of students did not participate in standardized testing. CONCLUSIONS: We identified disparities in the identification of cooccurring conditions and school-based IEP services, practices, and transition planning. Working with pediatric health and education providers, families, and adolescents with autism will be important to identify contributing factors and to focus efforts to reduce disparities in the supports and services adolescents with autism have access to and receive.
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Trastorno del Espectro Autista , Trastorno Autístico , Discapacidad Intelectual , Adolescente , Adulto , Niño , Humanos , Adulto Joven , Trastorno del Espectro Autista/epidemiología , Trastorno del Espectro Autista/terapia , Trastorno Autístico/epidemiología , Trastorno Autístico/terapia , Etnicidad , Hispánicos o Latinos , Discapacidad Intelectual/epidemiología , Discapacidad Intelectual/terapia , Negro o Afroamericano , BlancoRESUMEN
OBJECTIVES: The study objectives were to examine the contents of individualized education programs (IEPs) of adolescents with autism spectrum disorder (ASD), including postsecondary transition goals, services, and changes in special education classification over time. METHODS: This study involved a longitudinal population-based surveillance cohort from the Autism Developmental Disabilities Monitoring Network from 2002 to 2018 in 3 catchment areas in the United States. The sample included 322 adolescents who were born in 2002, identified with ASD, and had an IEP available for review at ages 15-16 years. RESULTS: We found that 297 (92%) adolescents with ASD had an IEP including a transition plan. Those without intellectual disability (ID) were more likely to have postsecondary education and employment goals and have those goals be to pursue higher education or competitive employment compared with those with ID. Forty-one percent of adolescents with ASD had a postsecondary living arrangement goal. Although 28% of adolescents with ASD received school-based mental health services, none of these adolescents were Black; additionally, 15% of those with ID received mental health services compared with 34% without ID. The percentage of adolescents with ASD served under an autism classification increased from 44% at age 8 years to 62% by age 16. CONCLUSIONS: We identified gaps and disparities in school-based postsecondary transition planning. Working with education partners, families, and adolescents will be important to identify what challenges contribute to these findings and what supports are needed to improve the equity and quality of the transition planning process for adolescents with ASD so they are prepared for adulthood.
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Trastorno del Espectro Autista , Trastorno Autístico , Discapacidad Intelectual , Humanos , Adolescente , Estados Unidos , Adulto Joven , Adulto , Niño , Trastorno del Espectro Autista/terapia , Trastorno del Espectro Autista/epidemiología , Educación Especial , Vigilancia de la Población , EmpleoRESUMEN
OBJECTIVES: Autism spectrum disorder (autism) is a heterogeneous condition that poses challenges in describing the needs of individuals with autism and making prognoses about future outcomes. We applied a newly proposed definition of profound autism to surveillance data to estimate the percentage of children with autism who have profound autism and describe their sociodemographic and clinical characteristics. METHODS: We analyzed population-based surveillance data from the Autism and Developmental Disabilities Monitoring Network for 20 135 children aged 8 years with autism during 2000-2016. Children were classified as having profound autism if they were nonverbal, were minimally verbal, or had an intelligence quotient <50. RESULTS: The percentage of 8-year-old children with profound autism among those with autism was 26.7%. Compared with children with non-profound autism, children with profound autism were more likely to be female, from racial and ethnic minority groups, of low socioeconomic status, born preterm or with low birth weight; have self-injurious behaviors; have seizure disorders; and have lower adaptive scores. In 2016, the prevalence of profound autism was 4.6 per 1000 8-year-olds. The prevalence ratio (PR) of profound autism was higher among non-Hispanic Asian/Native Hawaiian/Other Pacific Islander (PR = 1.55; 95 CI, 1.38-1.73), non-Hispanic Black (PR = 1.76; 95% CI, 1.67-1.86), and Hispanic (PR = 1.50; 95% CI, 0.88-1.26) children than among non-Hispanic White children. CONCLUSIONS: As the population of children with autism continues to change, describing and quantifying the population with profound autism is important for planning. Policies and programs could consider the needs of people with profound autism across the life span to ensure their needs are met.
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Trastorno del Espectro Autista , Trastorno Autístico , Recién Nacido , Humanos , Niño , Femenino , Estados Unidos/epidemiología , Masculino , Trastorno Autístico/epidemiología , Trastorno del Espectro Autista/epidemiología , Etnicidad , Prevalencia , Grupos Minoritarios , HawaiiRESUMEN
PURPOSE: The Metropolitan Atlanta Developmental Disabilities Surveillance Program tracks autism spectrum disorder (ASD) in selected counties within Georgia as part of the Autism and Developmental Disabilities Monitoring (ADDM) Network. ADDM Network analyses have historically found a higher prevalence of ASD in areas of higher socioeconomic status. METHODS: We linked 2018 data from Centers for Disease Control and Prevention's Social Vulnerability Index (SVI) to two Metropolitan Atlanta Developmental Disabilities Surveillance Program counties by census tract, grouped census tracts into tertiles representing low, medium, and high social vulnerability, and calculated ASD prevalence for each tertile, overall and by each of four SVI themes. RESULTS: We found that overall prevalence was higher in areas of low compared to high vulnerability for the socioeconomic status and transportation themes, and in areas of medium compared to high vulnerability for all themes. This pattern was consistent among males but varied for females and by race or ethnicity. CONCLUSIONS: Linking ASD prevalence to SVI metrics can improve the understanding of inequities among children with ASD in racial and ethnic minority groups or those living in low-resource settings. These methods can be applied to other ADDM Network surveillance sites and public health surveillance programs.
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Trastorno del Espectro Autista , Masculino , Niño , Femenino , Humanos , Estados Unidos , Trastorno del Espectro Autista/epidemiología , Etnicidad , Discapacidades del Desarrollo/epidemiología , Prevalencia , Vulnerabilidad Social , Vigilancia de la Población/métodos , Grupos Minoritarios , Vigilancia en Salud PúblicaRESUMEN
Problem/Condition: Autism spectrum disorder (ASD). Period Covered: 2020. Description of System: The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance program that provides estimates of the prevalence of ASD among children aged 8 years. In 2020, there were 11 ADDM Network sites across the United States (Arizona, Arkansas, California, Georgia, Maryland, Minnesota, Missouri, New Jersey, Tennessee, Utah, and Wisconsin). To ascertain ASD among children aged 8 years, ADDM Network staff review and abstract developmental evaluations and records from community medical and educational service providers. A child met the case definition if their record documented 1) an ASD diagnostic statement in an evaluation, 2) a classification of ASD in special education, or 3) an ASD International Classification of Diseases (ICD) code. Results: For 2020, across all 11 ADDM sites, ASD prevalence per 1,000 children aged 8 years ranged from 23.1 in Maryland to 44.9 in California. The overall ASD prevalence was 27.6 per 1,000 (one in 36) children aged 8 years and was 3.8 times as prevalent among boys as among girls (43.0 versus 11.4). Overall, ASD prevalence was lower among non-Hispanic White children (24.3) and children of two or more races (22.9) than among non-Hispanic Black or African American (Black), Hispanic, and non-Hispanic Asian or Pacific Islander (A/PI) children (29.3, 31.6, and 33.4 respectively). ASD prevalence among non-Hispanic American Indian or Alaska Native (AI/AN) children (26.5) was similar to that of other racial and ethnic groups. ASD prevalence was associated with lower household income at three sites, with no association at the other sites.Across sites, the ASD prevalence per 1,000 children aged 8 years based exclusively on documented ASD diagnostic statements was 20.6 (range = 17.1 in Wisconsin to 35.4 in California). Of the 6,245 children who met the ASD case definition, 74.7% had a documented diagnostic statement of ASD, 65.2% had a documented ASD special education classification, 71.6% had a documented ASD ICD code, and 37.4% had all three types of ASD indicators. The median age of earliest known ASD diagnosis was 49 months and ranged from 36 months in California to 59 months in Minnesota.Among the 4,165 (66.7%) children with ASD with information on cognitive ability, 37.9% were classified as having an intellectual disability. Intellectual disability was present among 50.8% of Black, 41.5% of A/PI, 37.8% of two or more races, 34.9% of Hispanic, 34.8% of AI/AN, and 31.8% of White children with ASD. Overall, children with intellectual disability had earlier median ages of ASD diagnosis (43 months) than those without intellectual disability (53 months). Interpretation: For 2020, one in 36 children aged 8 years (approximately 4% of boys and 1% of girls) was estimated to have ASD. These estimates are higher than previous ADDM Network estimates during 2000-2018. For the first time among children aged 8 years, the prevalence of ASD was lower among White children than among other racial and ethnic groups, reversing the direction of racial and ethnic differences in ASD prevalence observed in the past. Black children with ASD were still more likely than White children with ASD to have a co-occurring intellectual disability. Public Health Action: The continued increase among children identified with ASD, particularly among non-White children and girls, highlights the need for enhanced infrastructure to provide equitable diagnostic, treatment, and support services for all children with ASD. Similar to previous reporting periods, findings varied considerably across network sites, indicating the need for additional research to understand the nature of such differences and potentially apply successful identification strategies across states.
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Trastorno del Espectro Autista , Trastorno Autístico , Discapacidad Intelectual , Masculino , Femenino , Humanos , Niño , Estados Unidos/epidemiología , Preescolar , Trastorno del Espectro Autista/epidemiología , Trastorno Autístico/diagnóstico , Trastorno Autístico/epidemiología , Prevalencia , Discapacidades del Desarrollo , Vigilancia de la Población , MarylandRESUMEN
Problem/Condition: Autism spectrum disorder (ASD). Period Covered: 2020. Description of System: The Autism and Developmental Disabilities Monitoring Network is an active surveillance program that estimates prevalence and characteristics of ASD and monitors timing of ASD identification among children aged 4 and 8 years. In 2020, a total of 11 sites (located in Arizona, Arkansas, California, Georgia, Maryland, Minnesota, Missouri, New Jersey, Tennessee, Utah, and Wisconsin) conducted surveillance of ASD among children aged 4 and 8 years and suspected ASD among children aged 4 years. Surveillance included children who lived in the surveillance area at any time during 2020. Children were classified as having ASD if they ever received 1) an ASD diagnostic statement in an evaluation, 2) a special education classification of autism (eligibility), or 3) an ASD International Classification of Diseases (ICD) code (revisions 9 or 10). Children aged 4 years were classified as having suspected ASD if they did not meet the case definition for ASD but had a documented qualified professional's statement indicating a suspicion of ASD. This report focuses on children aged 4 years in 2020 compared with children aged 8 years in 2020. Results: For 2020, ASD prevalence among children aged 4 years varied across sites, from 12.7 per 1,000 children in Utah to 46.4 in California. The overall prevalence was 21.5 and was higher among boys than girls at every site. Compared with non-Hispanic White children, ASD prevalence was 1.8 times as high among Hispanic, 1.6 times as high among non-Hispanic Black, 1.4 times as high among Asian or Pacific Islander, and 1.2 times as high among multiracial children. Among the 58.3% of children aged 4 years with ASD and information on intellectual ability, 48.5% had an IQ score of ≤70 on their most recent IQ test or an examiner's statement of intellectual disability. Among children with a documented developmental evaluation, 78.0% were evaluated by age 36 months. Children aged 4 years had a higher cumulative incidence of ASD diagnosis or eligibility by age 48 months compared with children aged 8 years at all sites; risk ratios ranged from 1.3 in New Jersey and Utah to 2.0 in Tennessee. In the 6 months before the March 2020 COVID-19 pandemic declaration by the World Health Organization, there were 1,593 more evaluations and 1.89 more ASD identifications per 1,000 children aged 4 years than children aged 8 years received 4 years earlier. After the COVID-19 pandemic declaration, this pattern reversed: in the 6 months after pandemic onset, there were 217 fewer evaluations and 0.26 fewer identifications per 1,000 children aged 4 years than children aged 8 years received 4 years earlier. Patterns of evaluation and identification varied among sites, but there was not recovery to pre-COVID-19 pandemic levels by the end of 2020 at most sites or overall. For 2020, prevalence of suspected ASD ranged from 0.5 (California) to 10.4 (Arkansas) per 1,000 children aged 4 years, with an increase from 2018 at five sites (Arizona, Arkansas, Maryland, New Jersey, and Utah). Demographic and cognitive characteristics of children aged 4 years with suspected ASD were similar to children aged 4 years with ASD. Interpretation: A wide range of prevalence of ASD by age 4 years was observed, suggesting differences in early ASD identification practices among communities. At all sites, cumulative incidence of ASD by age 48 months among children aged 4 years was higher compared with children aged 8 years in 2020, indicating improvements in early identification of ASD. Higher numbers of evaluations and rates of identification were evident among children aged 4 years until the COVID-19 pandemic onset in 2020. Sustained lower levels of ASD evaluations and identification seen at a majority of sites after the pandemic onset could indicate disruptions in typical practices in evaluations and identification for health service providers and schools through the end of 2020. Sites with more recovery could indicate successful strategies to mitigate service interruption, such as pivoting to telehealth approaches for evaluation. Public Health Action: From 2016 through February of 2020, ASD evaluation and identification among the cohort of children aged 4 years was outpacing ASD evaluation and identification 4 years earlier (from 2012 until March 2016) among the cohort of children aged 8 years in 2020 . From 2016 to March 2020, ASD evaluation and identification among the cohort of children aged 4 years was outpacing that among children aged 8 years in 2020 from 2012 until March 2016. The disruptions in evaluation that coincided with the start of the COVID-19 pandemic and the increase in prevalence of suspected ASD in 2020 could have led to delays in ASD identification and interventions. Communities could evaluate the impact of these disruptions as children in affected cohorts age and consider strategies to mitigate service disruptions caused by future public health emergencies.
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Trastorno del Espectro Autista , Trastorno Autístico , COVID-19 , Masculino , Femenino , Humanos , Niño , Estados Unidos/epidemiología , Trastorno del Espectro Autista/diagnóstico , Trastorno del Espectro Autista/epidemiología , Trastorno Autístico/diagnóstico , Trastorno Autístico/epidemiología , Discapacidades del Desarrollo/epidemiología , Pandemias , Vigilancia de la Población , COVID-19/epidemiología , Utah , PrevalenciaRESUMEN
PURPOSE: The objectives of this study were to describe child characteristics associated with later autism spectrum disorder (ASD) identification and the health status and educational transition plans of adolescents with ASD. METHODS: Longitudinal population-based surveillance cohort from the Autism Developmental Disabilities Monitoring Network during 2002-2018 in five catchment areas in the United States. Participants included 3,148 children born in 2002 whose records were first reviewed for ASD surveillance in 2010. RESULTS: Of the 1,846 children identified in the community as an ASD case, 11.6% were first identified after age 8 years. Children who were more likely to have ASD identified at older ages were Hispanic; were born with low birth weight; were verbal; had high intelligence quotient or adaptive scores; or had certain co-occurring neuropsychological conditions by age 8 years. By age 16 years, neuropsychological conditions were common with more than half of the adolescents with ASD having a diagnosis of attention-deficit/hyperactivity disorder or anxiety. Intellectual disability (ID) status was unchanged for the majority (>80%) of children from ages 8-16 years. A transition plan was completed for over 94% of adolescents, but disparities were observed in planning by ID status. DISCUSSION: A high percentage of adolescents with ASD have co-occurring neuropsychological conditions, markedly higher than at age 8. While most adolescents had transition planning, this occurred less often for those with ID. Ensuring access to services for all people with ASD during adolescence and transition to adulthood may help to promote overall health and quality of life.
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Trastorno del Espectro Autista , Niño , Humanos , Adolescente , Estados Unidos/epidemiología , Adulto Joven , Adulto , Trastorno del Espectro Autista/diagnóstico , Trastorno del Espectro Autista/epidemiología , Calidad de Vida , Prevalencia , Vigilancia de la Población , Hispánicos o LatinosRESUMEN
PURPOSE: Autism spectrum disorder (ASD) prevalence information is necessary for identifying community needs such as addressing disparities in identification and services. METHODS: Seven Autism and Developmental Disabilities Monitoring (ADDM) Network sites participated in a pilot project to link statewide health and education data to generate statewide and county-level prevalence estimates for a broader age range for their states for the first time. RESULTS: Statewide prevalence of ASD for ages 3-21 years in 2018 ranged from 1.5% in Tennessee and Wisconsin to 2.3% in Arizona. The median county-level prevalence of ASD was 1.4% of residents ages 3-21 years. More boys than girls had ASD at all sites, and prevalence was lower among non-Hispanic Black, Hispanic, Asian/Pacific Islander, and American Indian/Alaska Native residents compared to non-Hispanic White residents at most sites. ASD prevalence estimates for children aged 8 years were similar to 2018 ADDM Network estimates that used record review to provide more in-depth information, but showed greater variation for children aged 4 years. CONCLUSIONS: Linkage of statewide data sets provides less detailed but actionable local information when more resource-intensive methods are not possible.
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Trastorno del Espectro Autista , Masculino , Niño , Femenino , Humanos , Estados Unidos/epidemiología , Trastorno del Espectro Autista/epidemiología , Prevalencia , Proyectos Piloto , Vigilancia de la Población/métodos , EtnicidadRESUMEN
Previous research has identified that patterns of cooccurring conditions (CoCs) associated with autism spectrum disorder (ASD) differ based on the presence of intellectual disability (ID). This study explored the association of documented CoCs among 8-year-old children with ASD and ID (ASD+ID, n = 2416) and ASD without ID (ASD-ID, n = 5372) identified by the Autism and Developmental Disabilities Monitoring Network, surveillance years (SYs) 2012 and 2014. After adjusting for demographic variables, record source, surveillance site, and SY, children with ASD+ID, as compared with children with ASD-ID, were more likely to have histories of nonspecific developmental delays and neurological disorders documented in their records but were less likely to have behavioral and psychiatric disorders. ID plays a key role on how children with ASD would experience other CoCs. Our results emphasize how understanding the pattern of CoCs in ASD+ID and ASD-ID can inform comprehensive and multidisciplinary approaches in assessment and management of children in order to develop targeted interventions to reduce possible CoCs or CoCs-related impairments.
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Trastorno del Espectro Autista , Trastorno Autístico , Discapacidad Intelectual , Niño , Humanos , Trastorno del Espectro Autista/complicaciones , Trastorno del Espectro Autista/epidemiología , Discapacidad Intelectual/complicaciones , Discapacidad Intelectual/epidemiología , Prevalencia , InvestigaciónRESUMEN
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.
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Discapacidades del Desarrollo , Aceptación de la Atención de Salud/estadística & datos numéricos , Adolescente , Niño , Preescolar , Atención a la Salud/estadística & datos numéricos , Intervención Educativa Precoz/estadística & datos numéricos , Educación Especial/estadística & datos numéricos , Humanos , Factores Socioeconómicos , Estados UnidosRESUMEN
Mental health encompasses a range of mental, emotional, social, and behavioral functioning and occurs along a continuum from good to poor. Previous research has documented that mental health among children and adolescents is associated with immediate and long-term physical health and chronic disease, health risk behaviors, social relationships, education, and employment. Public health surveillance of children's mental health can be used to monitor trends in prevalence across populations, increase knowledge about demographic and geographic differences, and support decision-making about prevention and intervention. Numerous federal data systems collect data on various indicators of children's mental health, particularly mental disorders. The 2013-2019 data from these data systems show that mental disorders begin in early childhood and affect children with a range of sociodemographic characteristics. During this period, the most prevalent disorders diagnosed among U.S. children and adolescents aged 3-17 years were attention-deficit/hyperactivity disorder and anxiety, each affecting approximately one in 11 (9.4%-9.8%) children. Among children and adolescents aged 12-17 years, one fifth (20.9%) had ever experienced a major depressive episode. Among high school students in 2019, 36.7% reported persistently feeling sad or hopeless in the past year, and 18.8% had seriously considered attempting suicide. Approximately seven in 100,000 persons aged 10-19 years died by suicide in 2018 and 2019. Among children and adolescents aged 3-17 years, 9.6%-10.1% had received mental health services, and 7.8% of all children and adolescents aged 3-17 years had taken medication for mental health problems during the past year, based on parent report. Approximately one in four children and adolescents aged 12-17 years reported having received mental health services during the past year. In federal data systems, data on positive indicators of mental health (e.g., resilience) are limited. Although no comprehensive surveillance system for children's mental health exists and no single indicator can be used to define the mental health of children or to identify the overall number of children with mental disorders, these data confirm that mental disorders among children continue to be a substantial public health concern. These findings can be used by public health professionals, health care providers, state health officials, policymakers, and educators to understand the prevalence of specific mental disorders and other indicators of mental health and the challenges related to mental health surveillance.
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Trastorno Depresivo Mayor , Salud Mental , Adolescente , Adulto , Niño , Preescolar , Enfermedad Crónica , Humanos , Prevalencia , Intento de Suicidio , Estados Unidos/epidemiología , Adulto JovenRESUMEN
OBJECTIVE: Early identification can improve outcomes for children with autism spectrum disorder (ASD). We sought to assess changes in early ASD identification over time and by co-occurring intellectual disability (ID) and race/ethnicity. METHOD: Using data for 2002-2016 from a biennial population-based ASD surveillance program among 8-year-old children in the United States, we defined identification as a child's earliest recorded ASD diagnosis or special education eligibility. Unidentified children had characteristics meeting the ASD surveillance case definition but no recorded identification by age 8 years. We calculated median age at identification among identified children, median age at identification including unidentified children, and cumulative incidence of identification by age 48 months. RESULTS: ASD identification by age 48 months was 4 times (95% CI: 3.6-4.3) as likely in 2016 as in 2002, with the largest increases among children without ID. Median age at ASD identification among identified children decreased 3 months during this time. Children of every race/ethnicity were more likely to be identified over time. There were racial disparities stratified by ID: in 2016, Black and Hispanic children without ID were less likely to be identified with ASD than were White children (both groups risk ratio: 0.7; 95% CI: 0.5-0.8), but Black children were 1.5 times (95% CI: 1.3-1.9) as likely as White children to be identified with ASD and ID. CONCLUSION: Substantial progress has been made to identify more children with ASD early, despite minimal decrease in median age at diagnosis. Considerable disparities remain in early ASD identification by race/ethnicity and co-occurring intellectual disability.
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Trastorno del Espectro Autista , Trastorno Autístico , Discapacidad Intelectual , Trastorno del Espectro Autista/diagnóstico , Trastorno del Espectro Autista/epidemiología , Niño , Preescolar , Discapacidades del Desarrollo , Humanos , Discapacidad Intelectual/diagnóstico , Discapacidad Intelectual/epidemiología , Prevalencia , Estados Unidos/epidemiologíaRESUMEN
Strengthening systems of care to meet the needs of individuals with autism spectrum disorder (ASD) is of growing importance. Administrative data provide advantages for research and planning purposes, including large sample sizes and the ability to identify enrollment in insurance coverage and service utilization of individuals with ASD. Researchers have employed varying strategies to identify individuals with ASD in administrative data. Differences in these strategies can limit the comparability of results across studies. This review describes implications of the varying strategies that have been employed to identify individuals with ASD in US claims databases, with consideration of the strengths and limitations of each approach.
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Trastorno del Espectro Autista , Algoritmos , Trastorno del Espectro Autista/diagnóstico , Trastorno del Espectro Autista/epidemiología , Bases de Datos Factuales , Humanos , Cobertura del Seguro , Estados Unidos/epidemiologíaRESUMEN
PROBLEM/CONDITION: Autism spectrum disorder (ASD). PERIOD COVERED: 2018. DESCRIPTION OF SYSTEM: The Autism and Developmental Disabilities Monitoring Network is an active surveillance program that estimates ASD prevalence and monitors timing of ASD identification among children aged 4 and 8 years. This report focuses on children aged 4 years in 2018, who were born in 2014 and had a parent or guardian who lived in the surveillance area in one of 11 sites (Arizona, Arkansas, California, Georgia, Maryland, Minnesota, Missouri, New Jersey, Tennessee, Utah, and Wisconsin) at any time during 2018. Children were classified as having ASD if they ever received 1) an ASD diagnostic statement (diagnosis) in an evaluation, 2) a special education classification of ASD (eligibility), or 3) an ASD International Classification of Diseases (ICD) code. Suspected ASD also was tracked among children aged 4 years. Children who did not meet the case definition for ASD were classified as having suspected ASD if their records contained a qualified professional's statement indicating a suspicion of ASD. RESULTS: For 2018, the overall ASD prevalence was 17.0 per 1,000 (one in 59) children aged 4 years. Prevalence varied from 9.1 per 1,000 in Utah to 41.6 per 1,000 in California. At every site, prevalence was higher among boys than girls, with an overall male-to-female prevalence ratio of 3.4. Prevalence of ASD among children aged 4 years was lower among non-Hispanic White (White) children (12.9 per 1,000) than among non-Hispanic Black (Black) children (16.6 per 1,000), Hispanic children (21.1 per 1,000), and Asian/Pacific Islander (A/PI) children (22.7 per 1,000). Among children aged 4 years with ASD and information on intellectual ability, 52% met the surveillance case definition of co-occurring intellectual disability (intelligence quotient ≤70 or an examiner's statement of intellectual disability documented in an evaluation). Of children aged 4 years with ASD, 72% had a first evaluation at age ≤36 months. Stratified by census-tract-level median household income (MHI) tertile, a lower percentage of children with ASD and intellectual disability was evaluated by age 36 months in the low MHI tertile (72%) than in the high MHI tertile (84%). Cumulative incidence of ASD diagnosis or eligibility received by age 48 months was 1.5 times as high among children aged 4 years (13.6 per 1,000 children born in 2014) as among those aged 8 years (8.9 per 1,000 children born in 2010). Across MHI tertiles, higher cumulative incidence of ASD diagnosis or eligibility received by age 48 months was associated with lower MHI. Suspected ASD prevalence was 2.6 per 1,000 children aged 4 years, meaning for every six children with ASD, one child had suspected ASD. The combined prevalence of ASD and suspected ASD (19.7 per 1,000 children aged 4 years) was lower than ASD prevalence among children aged 8 years (23.0 per 1,000 children aged 8 years). INTERPRETATION: Groups with historically lower prevalence of ASD (non-White and lower MHI) had higher prevalence and cumulative incidence of ASD among children aged 4 years in 2018, suggesting progress in identification among these groups. However, a lower percentage of children with ASD and intellectual disability in the low MHI tertile were evaluated by age 36 months than in the high MHI group, indicating disparity in timely evaluation. Children aged 4 years had a higher cumulative incidence of diagnosis or eligibility by age 48 months compared with children aged 8 years, indicating improvement in early identification of ASD. The overall prevalence for children aged 4 years was less than children aged 8 years, even when prevalence of children suspected of having ASD by age 4 years is included. This finding suggests that many children identified after age 4 years do not have suspected ASD documented by age 48 months. PUBLIC HEALTH ACTION: Children born in 2014 were more likely to be identified with ASD by age 48 months than children born in 2010, indicating increased early identification. However, ASD identification among children aged 4 years varied by site, suggesting opportunities to examine developmental screening and diagnostic practices that promote earlier identification. Children aged 4 years also were more likely to have co-occurring intellectual disability than children aged 8 years, suggesting that improvement in the early identification and evaluation of developmental concerns outside of cognitive impairments is still needed. Improving early identification of ASD could lead to earlier receipt of evidence-based interventions and potentially improve developmental outcomes.
Asunto(s)
Trastorno del Espectro Autista/diagnóstico , Vigilancia de la Población , Trastorno del Espectro Autista/epidemiología , Preescolar , Diagnóstico Precoz , Monitoreo Epidemiológico , Femenino , Humanos , Masculino , Estados Unidos/epidemiologíaRESUMEN
PROBLEM/CONDITION: Autism spectrum disorder (ASD). PERIOD COVERED: 2018. DESCRIPTION OF SYSTEM: The Autism and Developmental Disabilities Monitoring (ADDM) Network conducts active surveillance of ASD. This report focuses on the prevalence and characteristics of ASD among children aged 8 years in 2018 whose parents or guardians lived in 11 ADDM Network sites in the United States (Arizona, Arkansas, California, Georgia, Maryland, Minnesota, Missouri, New Jersey, Tennessee, Utah, and Wisconsin). To ascertain ASD among children aged 8 years, ADDM Network staff review and abstract developmental evaluations and records from community medical and educational service providers. In 2018, children met the case definition if their records documented 1) an ASD diagnostic statement in an evaluation (diagnosis), 2) a special education classification of ASD (eligibility), or 3) an ASD International Classification of Diseases (ICD) code. RESULTS: For 2018, across all 11 ADDM sites, ASD prevalence per 1,000 children aged 8 years ranged from 16.5 in Missouri to 38.9 in California. The overall ASD prevalence was 23.0 per 1,000 (one in 44) children aged 8 years, and ASD was 4.2 times as prevalent among boys as among girls. Overall ASD prevalence was similar across racial and ethnic groups, except American Indian/Alaska Native children had higher ASD prevalence than non-Hispanic White (White) children (29.0 versus 21.2 per 1,000 children aged 8 years). At multiple sites, Hispanic children had lower ASD prevalence than White children (Arizona, Arkansas, Georgia, and Utah), and non-Hispanic Black (Black) children (Georgia and Minnesota). The associations between ASD prevalence and neighborhood-level median household income varied by site. Among the 5,058 children who met the ASD case definition, 75.8% had a diagnostic statement of ASD in an evaluation, 18.8% had an ASD special education classification or eligibility and no ASD diagnostic statement, and 5.4% had an ASD ICD code only. ASD prevalence per 1,000 children aged 8 years that was based exclusively on documented ASD diagnostic statements was 17.4 overall (range: 11.2 in Maryland to 29.9 in California). The median age of earliest known ASD diagnosis ranged from 36 months in California to 63 months in Minnesota. Among the 3,007 children with ASD and data on cognitive ability, 35.2% were classified as having an intelligence quotient (IQ) score ≤70. The percentages of children with ASD with IQ scores ≤70 were 49.8%, 33.1%, and 29.7% among Black, Hispanic, and White children, respectively. Overall, children with ASD and IQ scores ≤70 had earlier median ages of ASD diagnosis than children with ASD and IQ scores >70 (44 versus 53 months). INTERPRETATION: In 2018, one in 44 children aged 8 years was estimated to have ASD, and prevalence and median age of identification varied widely across sites. Whereas overall ASD prevalence was similar by race and ethnicity, at certain sites Hispanic children were less likely to be identified as having ASD than White or Black children. The higher proportion of Black children compared with White and Hispanic children classified as having intellectual disability was consistent with previous findings. PUBLIC HEALTH ACTION: The variability in ASD prevalence and community ASD identification practices among children with different racial, ethnic, and geographical characteristics highlights the importance of research into the causes of that variability and strategies to provide equitable access to developmental evaluations and services. These findings also underscore the need for enhanced infrastructure for diagnostic, treatment, and support services to meet the needs of all children.
Asunto(s)
Trastorno del Espectro Autista/epidemiología , Disparidades en el Estado de Salud , Vigilancia de la Población , Trastorno del Espectro Autista/etnología , Niño , Monitoreo Epidemiológico , Etnicidad/estadística & datos numéricos , Femenino , Geografía , Humanos , Masculino , Prevalencia , Factores Raciales , Grupos Raciales/estadística & datos numéricos , Estados Unidos/epidemiologíaRESUMEN
The Autism and Developmental Disabilities Monitoring (ADDM) Network conducts population-based surveillance of autism spectrum disorder (ASD) among 8-year-old children in multiple US communities. From 2000 to 2016, investigators at ADDM Network sites classified ASD from collected text descriptions of behaviors from medical and educational evaluations which were reviewed and coded by ADDM Network clinicians. It took at least 4 years to publish data from a given surveillance year. In 2018, we developed an alternative case definition utilizing ASD diagnoses or classifications made by community professionals. Using data from surveillance years 2014 and 2016, we compared the new and previous ASD case definitions. Compared with the prevalence based on the previous case definition, the prevalence based on the new case definition was similar for 2014 and slightly lower for 2016. Sex and race/ethnicity prevalence ratios were nearly unchanged. Compared with the previous case definition, the new case definition's sensitivity was 86% and its positive predictive value was 89%. The new case definition does not require clinical review and collects about half as much data, yielding more timely reporting. It also more directly measures community identification of ASD, thus allowing for more valid comparisons among communities, and reduces resource requirements while retaining measurement properties similar to those of the previous definition.
Asunto(s)
Trastorno del Espectro Autista/epidemiología , Vigilancia de la Población/métodos , Trastorno del Espectro Autista/clasificación , Niño , Femenino , Humanos , Masculino , Prevalencia , Estados Unidos/epidemiologíaRESUMEN
BACKGROUND AND OBJECTIVES: Pica, the repeated ingestion of nonfood items, can be life-threatening. Although case reports describe pica in children with autism spectrum disorder (ASD) or intellectual disability (ID), there has been little systematic study of pica prevalence. We assessed pica in children 30 to 68 months of age (median = 55.4 months) with and without ASD. METHODS: Our sample from the Study to Explore Early Development, a multisite case-control study, included children with ASD (n = 1426), children with other developmental disabilities (DDs) (n = 1735), and general population-based controls (POPs) (n = 1578). We subdivided the ASD group according to whether children had ID and the DD group according to whether they had ID and/or some ASD characteristics. Standardized developmental assessments and/or questionnaires were used to define final study groups, subgroups, and pica. We examined pica prevalence in each group and compared ASD and DD groups and subgroups to the POP group using prevalence ratios adjusted for sociodemographic factors. RESULTS: Compared with the prevalence of pica among POPs (3.5%), pica was higher in children with ASD (23.2%) and DD (8.4%), and in the following subgroups: ASD with ID (28.1%), ASD without ID (14.0%), DD with ID (9.7%), DD with ASD characteristics (12.0%), and DD with both ID and ASD characteristics (26.3%); however, pica prevalence was not elevated in children with DD with neither ID nor ASD characteristics (3.2%). Between-group differences remained after adjustment (adjusted prevalence ratio range 1.9-8.0, all P <.05). CONCLUSIONS: Pica may be common in young children with ASD, ASD characteristics, and ID. These findings inform the specialized health care needs of these children.
Asunto(s)
Trastorno del Espectro Autista/diagnóstico , Trastorno del Espectro Autista/epidemiología , Discapacidad Intelectual/diagnóstico , Discapacidad Intelectual/epidemiología , Pica/diagnóstico , Pica/epidemiología , Adulto , Trastorno del Espectro Autista/psicología , Estudios de Casos y Controles , Preescolar , Discapacidades del Desarrollo/diagnóstico , Discapacidades del Desarrollo/epidemiología , Discapacidades del Desarrollo/psicología , Femenino , Humanos , Discapacidad Intelectual/psicología , Masculino , Pica/psicología , Adulto JovenRESUMEN
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.