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The Centers for Disease Control and Prevention's (CDC) Learn the Signs. Act Early. program, funded the American Academy of Pediatrics (AAP) to convene an expert working group to revise its developmental surveillance checklists. The goals of the group were to identify evidence-informed milestones to include in CDC checklists, clarify when most children can be expected to reach a milestone (to discourage a wait-and-see approach), and support clinical judgment regarding screening between recommended ages. Subject matter experts identified by the AAP established 11 criteria for CDC milestone checklists, including using milestones most children ($75%) would be expected to achieve by specific health supervision visit ages and those that are easily observed in natural settings. A database of normative data for individual milestones, common screening and evaluation tools, and published clinical opinion was created to inform revisions. Application of the criteria established by the AAP working group and adding milestones for the 15- and 30-month health supervision visits resulted in a 26.4% reduction and 40.9% replacement of previous CDC milestones. One third of the retained milestones were transferred to different ages; 67.7% of those transferred were moved to older ages. Approximately 80% of the final milestones had normative data from $1 sources. Social-emotional and cognitive milestones had the least normative data. These criteria and revised checklists can be used to support developmental surveillance, clinical judgment regarding additional developmental screening, and research in developmental surveillance processes. Gaps in developmental data were identified particularly for social-emotional and cognitive milestones. [ABSTRACT FROM AUTHOR]

In the article, the authors discuss the challenges and issues in the efforts to ensure equitable vaccination against COVID-19 among people with disabilities and their caregivers in the U.S. Topics include a study by the U.S. Centers for Disease Control and Prevention (CDC) COVID-19 Response Team on COVID-19 vaccination and the relationship between disability status and severe illness due to COVID-19.

The severity of autism spectrum disorder (ASD) is often measured by co-occurring conditions, such as intellectual disability or language delay, rather than deficits in social interaction, and restricted interests and repetitive behaviors. The Autism Diagnostic Observation Schedule calibrated severity score (ADOS CSS) was created to facilitate comparison of the diagnostic features of ASD independent of related conditions over time. We examined the relationship between the ADOS CSS, ADOS total score, and clinician rated degree of impairment (DOI) in the Study to Explore Early Development. Like others, we confirmed that, among the measures we evaluated, the ADOS CSS was least influenced by developmental functioning and demographic factors and is therefore the best measure of core features of ASD in pre-school children. [ABSTRACT FROM AUTHOR]

Purpose: The criteria for autism spectrum disorder (ASD) were revised in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM). The objective of this study was to compare the sensitivity and specificity of DSM-IV-Text Revision (DSM-IV-TR) and DSM-5 definitions of ASD in a community-based sample of preschool children.Methods: Children between 2 and 5 years of age were enrolled in the Study to Explore Early Development-Phase 2 (SEED2) and received a comprehensive developmental evaluation. The clinician(s) who evaluated the child completed two diagnostic checklists that indicated the presence and severity of DSM-IV-TR and DSM-5 criteria. Definitions for DSM-5 ASD, DSM-IV-TR autistic disorder, and DSM-IV-TR Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) were created from the diagnostic checklists.Results: 773 children met SEED2 criteria for ASD and 288 met criteria for another developmental disorder (DD). Agreement between DSM-5 and DSM-IV-TR definitions of ASD were good for autistic disorder (0.78) and moderate for PDD-NOS (0.57 and 0.59). Children who met DSM-IV-TR autistic disorder but not DSM-5 ASD (n = 71) were more likely to have mild ASD symptoms, or symptoms accounted for by another disorder. Children who met PDD-NOS but not DSM-5 ASD (n = 66), or vice versa (n = 120) were less likely to have intellectual disability and more likely to be female. Sensitivity and specificity were best balanced with DSM-5 ASD criteria (0.95 and 0.78, respectively).Conclusions: The DSM-5 definition of ASD maximizes diagnostic sensitivity and specificity in the SEED2 sample. These findings support the DSM-5 conceptualization of ASD in preschool children. [ABSTRACT FROM AUTHOR]

This study explored whether ASD phenotypes in the child were associated with a history of anxiety or depression in the mother. We hypothesized that an ASD profile in children characterized by mild delays and increased rates of dysregulation would be associated with preexisting maternal anxiety or depression. Participants were 672 preschool children with ASD and their mothers. Children were classified as ASD after a comprehensive developmental evaluation. Mothers reported whether a healthcare provider ever diagnosed them with anxiety or depression before the birth of their child. Four child ASD phenotypes were derived from latent class analysis: Mild Language Delay with Cognitive Rigidity (Type 1), Significant Developmental Delay with Repetitive Motor Behaviors (Type 2), General Developmental Delay (Type 3), and Mild Language and Motor Delay with Dysregulation (i.e., aggression, anxiety, depression, emotional reactivity, inattention, somatic complaints, and sleep problems) (Type 4). Type 2 ASD served as the referent category in statistical analyses. Results showed that 22.6% of mothers reported a diagnosis of anxiety or depression before the birth of their child. Maternal anxiety or depression was associated with 2.7 times the odds (95% confidence interval: 1.4, 5.3) of Type 4 or Dysregulated ASD in the child; maternal anxiety and depression was associated with 4.4 times the odds (95% confidence interval: 1.4, 14.0) of Type 4 or Dysregulated ASD in the child. Our findings suggest an association between Dysregulated ASD in the child and anxiety and depression in the mother. These findings can enhance screening methods and inform future research efforts. [ABSTRACT FROM AUTHOR]

The autism spectrum disorder phenotype varies by social and communication ability and co-occurring developmental, behavioral, and medical conditions. Etiology is also diverse, with myriad potential genetic origins and environmental risk factors. Examining the influence of parental broader autism phenotype--a set of sub-clinical characteristics of autism spectrum disorder--on child autism spectrum disorder phenotypes may help reduce heterogeneity in potential genetic predisposition for autism spectrum disorder. We assessed the associations between parental broader autism phenotype and child phenotype among children of age 30-68 months enrolled in the Study to Explore Early Development (N = 707). Child autism spectrum disorder phenotype was defined by a replication of latent classes derived from multiple developmental and behavioral measures: Mild Language Delay with Cognitive Rigidity, Mild Language and Motor Delay with Dysregulation (e.g. anxiety/depression), General Developmental Delay, and Significant Developmental Delay with Repetitive Motor Behaviors. Scores on the Social Responsiveness Scale-Adult measured parent broader autism phenotype. Broader autism phenotype in at least one parent was associated with a child having increased odds of being classified as mild language and motor delay with dysregulation compared to significant developmental delay with repetitive motor behaviors (odds ratio: 2.44; 95% confidence interval: 1.16, 5.09). Children of parents with broader autism phenotype were more likely to have a phenotype qualitatively similar to broader autism phenotype presentation; this may have implications for etiologic research. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

The objective of this study was to identify homogenous classes of young children with autism spectrum disorder (ASD) to improve phenotypic characterization. Children were enrolled in the Study to Explore Early Development between 2 and 5 years of age. 707 children were classified with ASD after a comprehensive evaluation with strict diagnostic algorithms. Four classes of children with ASD were identified from latent class analysis: mild language delay with cognitive rigidity, mild language and motor delay with dysregulation, general developmental delay, and significant developmental delay with repetitive motor behaviors. We conclude that a four-class phenotypic model of children with ASD best describes our data and improves phenotypic characterization of young children with ASD. Implications for screening, diagnosis, and research are discussed. [ABSTRACT FROM AUTHOR]

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

The Study to Explore Early Development (SEED) is a multi-site case-control study designed to explore the relationship between autism spectrum disorder (ASD) phenotypes and etiologies. The goals of this paper are to (1) describe the SEED algorithm that uses the Autism Diagnostic Interview-Revised (ADI-R) and Autism Diagnostic Observation Schedule (ADOS) to classify children with ASD, (2) examine psychometric properties of different ASD classification methods, including the SEED method that incorporates rules for resolving ADI-R and ADOS discordance, and (3) determine whether restricted interests and repetitive behaviors were noted for children who had instrument discordance resolved using ADI-R social and communication scores. Results support the utility of SEED criteria when well-defined groups of children are an important clinical or research outcome. [ABSTRACT FROM AUTHOR]

Autism spectrum disorder (ASD) is over four times more prevalent in males compared to females. Increased understanding of sex differences in ASD endophenotypes could add insight into possible etiologies and the assessment and management of the disorder. Consequently, the purpose of this review is to describe current literature regarding sex differences in the developmental, psychiatric, and medical endophenotypes of ASD in order to illustrate current knowledge and areas in need of further research. Our review found that repetitive behaviors and restricted interests are more common in males than females with ASD. Intellectual disability is more common in females than males with ASD. Attention to detail may be more common in males than females with ASD and epilepsy may be more common in females than males with ASD, although limited research in these areas prevent definitive conclusions from being drawn. There does not appear to be a sex difference in other developmental, psychiatric, and medical symptoms associated with ASD, or the research was contradictory or too sparse to establish a sex difference. Our review is unique in that it offers detailed discussion of sex differences in three major endophenotypes of ASD. Further research is needed to better understand why sex differences exist in certain ASD traits and to evaluate whether phenotypic sex differences are related to different pathways of development, assessment, and treatment of the disorder. [ABSTRACT FROM AUTHOR]

The goals of our study were to (a) compare agreement between autism spectrum disorder diagnosis and outcome of the Modified Checklist for Autism in Toddlers and Parents Evaluation of Developmental Status in a sample of toddlers and (b) examine specific concerns noted for toddlers who screened negative on the Modified Checklist for Autism in Toddlers or Parents Evaluation of Developmental Status but were later diagnosed with autism spectrum disorder. Participants were administered the Modified Checklist for Autism in Toddlers and Parents Evaluation of Developmental Status during well-child visits. Families were invited for a clinical evaluation if autism spectrum disorder symptoms were noted on the Modified Checklist for Autism in Toddlers and Modified Checklist for Autism in Toddlers Follow-Up Interview or if autism spectrum disorder concerns were noted by the pediatrician. Fifty-two children completed the Modified Checklist for Autism in Toddlers, Parents Evaluation of Developmental Status, and a clinical evaluation, and 30 of these children were diagnosed with an autism spectrum disorder. Modified Checklist for Autism in Toddlers results showed higher agreement with autism spectrum disorder diagnosis than any individual Parents Evaluation of Developmental Status screen result, although the latter detected many children with other developmental concerns. Children who screened negative on the Modified Checklist for Autism in Toddlers or Parents Evaluation of Developmental Status but were diagnosed with autism spectrum disorder had concerns noted in sensory response and proto-declarative pointing that can be considered in the context of screen results. In sum, our findings support universal autism spectrum disorder–specific screening in addition to general developmental screening and offer considerations to encourage early identification of toddlers with autism spectrum disorder. [ABSTRACT FROM PUBLISHER]

The article discusses a study which investigated the ability of the U.S. Centers for Disease Control and Prevention surveillance to identify younger children with autism spectrum disorder. Involved in the study were 31 families who screened positive for autism spectrum disorder and received a clinical evaluation at Georgia State University. It was found that 4 of the 10 children were diagnosed with the disorder after the George State University evaluation.

We examined whether clinically distinct subgroups can be derived from a sample of toddlers ( n = 186) who failed the Modified Checklist for Autism in Toddlers, received a comprehensive clinical evaluation, and were diagnosed with an autism spectrum disorder (ASD). Three subgroups emerged from cluster analysis distinguished by (a) social, communication, and intellectual skills and (b) the rate and intensity of repetitive behaviors and abnormal sensory response. Preoccupations, compulsions, and rituals did not distinguish resultant subgroups. These results support a dimensional diagnostic view of ASDs in toddlers since subgroup differences were based on symptom severity rather than different symptom profiles. Results also identify specific types and levels of behavioral deficit relevant to toddler populations. Implications for early diagnosis are discussed. [ABSTRACT FROM AUTHOR]

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

The purpose of this study was to explore the sensory profile of young children with ASD compared to young children with other developmental delays (DD) at first ASD assessment. Results found that young children with ASD had more tactile and taste/smell sensitivities and difficulties with auditory filtering than young children with other DD. Moreover, sensory scores were significantly correlated with stereotyped interests and behaviors. These findings support the hypotheses that young children with ASD show more sensory impairments than young children with other DD and that sensory symptoms are significantly related to stereotyped interests and behaviors. Results also suggest that sensory abnormalities are distinguishing symptoms of ASD that should be considered in diagnostic algorithms for younger cohorts. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objectives. We sought to examine racial and ethnic disparities in the recognition of autism spectrum disorders (ASDs). Methods. Within a multisite network, 2568 children aged 8 years were identified as meeting surveillance criteria for ASD through abstraction of evaluation records from multiple sources. Through logistic regression with random effects for site, we estimated the association between race/ethnicity and documented ASD, adjusting for gender, IQ, birthweight, and maternal education. Results. Fifty-eight percent of children had a documented autism spectrum disorder. In adjusted analyses, children who were Black (odds ratio [OR]=0.79; 95% confidence interval [CI]=0.64, 0.96), Hispanic (OR=0.76; CI=0.56, 0.99), or of other race/ethnicity (OR=0.65; C1=0.43, 0.97) were less likely than were White children to have a documented ASD. This disparity persisted for Black children, regardless of IQ, and was concentrated for children of other ethnicities when IQ was lower than 70. Conclusions. Significant racial/ethnic dispatrities exist in the recognition of ASD. For some children in some racial/ethnic groups, the presence of intellectual disability may affect professionals' further assessment of developmental delay. Our findings suggest the need for continued professional education related to the heterogeneity of the presentation of ASD. [ABSTRACT FROM AUTHOR]

Past research shows poor agreement between the Autism Diagnostic Interview-Revised (ADI-R) and other diagnostic measures in toddlers. Our goal was to examine whether exclusion of the ADI-R behavioral domain results in improved diagnostic agreement. Toddlers aged 16–37 months ( M = 26 months) received an evaluation because they failed the Modified Checklist for Autism in Toddlers ( n = 142). Evaluations included the ADI-R, Autism Diagnostic Observation Schedule, Childhood Autism Rating Scale, and clinical judgment. Results found poor to fair agreement between the ADI-R and other measures; agreement improved when the ADI-R behavioral domain was excluded. These findings suggest that stereotyped interests and behaviors are not as relevant to the ADI-R as other diagnostic criteria when evaluating toddlers for autism spectrum disorders. [ABSTRACT FROM AUTHOR]

The Social Communication Questionnaire (SCQ) is a brief parental screening instrument used to identify children with autism spectrum disorders (ASD). Screening validity for the SCQ has been supported in children 4 years of age and older, but ongoing studies indicate that the SCQ may not be effective in identifying very young children with ASD. The purpose of the current investigation was to determine whether the SCQ could distinguish children with ASD from children with other developmental delays in a sample of very young children referred for early intervention. Results found that the recommended cutoff score of 15 yielded a sensitivity value of .47 and a specificity value of .89. Maximum sensitivity and specificity rates were achieved when the SCQ cutoff score was reduced to 11 (.89 and .89, respectively). Implications of the findings are discussed. [ABSTRACT FROM AUTHOR]

The article presents a report which estimated the prevalence of autism spectrum disorder (ASD) diagnoses among children with possible prenatal Zika virus exposure and described prenatal characteristics and other outcomes by ASD diagnosis status. Topics include possible effects of infection during pregnancy with Zika virus, prevalence of ASD diagnosis among children with Zika virus exposure reported from Puerto Rico, and prenatal characteristics and child outcomes among live-born infants.

Background and Aims: Research in school-aged children, adolescents, and adults with autism spectrum disorder (ASD) has found sex-based differences in behavioral, developmental, and diagnostic outcomes. These findings have not been consistently replicated in preschool-aged children. We examined sex-based differences in a large sample of 2-5-year-old children with ASD symptoms in a multi-site community-based study.Methods and Procedures: Based on a comprehensive evaluation, children were classified as having ASD (n = 1480, 81.55 % male) or subthreshold ASD characteristics (n = 593, 70.15 % male). Outcomes were behavior problems, developmental abilities, performance on ASD screening and diagnostic tests, and parent-reported developmental conditions diagnosed before study enrollment.Outcomes and Results: We found no statistically significant sex differences in behavioral functioning, developmental functioning, performance on an ASD screening test, and developmental conditions diagnosed before study enrollment among children with ASD or subthreshold ASD characteristics. Males in both study groups had more parent reported restricted interests and repetitive behaviors than females, but these differences were small in magnitude and not clinically meaningful.Conclusions and Implications: Preschool males and females who showed risk for ASD were more similar than different in the outcomes assessed in our study. Future research could examine sex-based differences in ASD phenotypes as children age. [ABSTRACT FROM AUTHOR]

Screening for autism spectrum disorder (ASD) is an essential early step in the identification process and inaccurate screening may lead to significant delays in the onset of treatment. Past research has highlighted discrepancies in the performance of ASD screening tools such as the Social Communication Questionnaire (SCQ) among certain racial and ethnic groups. The current study explored the functioning of the SCQ among African American/Black and White respondents based on item level performance on the measure. Differential Item Functioning (DIF) analyses showed that 16 (41%) items of the SCQ functioned differently for African American/Black respondents when compared to White respondents. Implications, such as the potential for delayed diagnosis and treatment, and the influence on downstream outcomes, are discussed. [ABSTRACT FROM AUTHOR]

We examined relationships between measures of adaptive behavior, cognitive ability, and autism symptom severity in 1458 preschool-aged children with autism from the Study to Explore Early Development. While publications commonly describe autistic children as "low-" or "high-functioning" based on cognitive ability, relying solely on cognitive scores may obscure meaningful variation in functioning. We found significant heterogeneity in adaptive behavior scores of children with cognitive scores both above and below the threshold of two or more standard deviations below the population mean specified in the diagnostic criteria for intellectual disability (ID). Although cognitive and adaptive behavior scores were strongly associated in our sample, considerable variation in overall adaptive behavior and more than half in socialization and motor skills was unaccounted for by cognitive ability, autism symptom severity, and other covariates. Among children who could be designated "low-functioning" based on cognitive scores, 39.7% had composite adaptive behavior scores indicating no significant delays, while among those who might be designated "high-functioning," 9.0% had significant delays in overall adaptive behavior and 22.2% in socialization. These results suggest adaptive behavior scores capture variations in the autism phenotype not accounted for by other measures we considered. Autistic people are often described as "low-" or "high-functioning" based on their scores on cognitive tests. These terms are common in publications and in everyday communication. However, recent research and feedback from the autistic community suggests that relying on cognitive ability alone to describe functioning may miss meaningful differences in the abilities of autistic children and adults and in the kinds of support they may need. Additional methods are needed to describe "functioning" in autistic children. We examined whether scores from a test measuring adaptive behaviors would provide information on the functional abilities of children with autism that is different from cognitive ability and autism symptom severity. Adaptive behaviors include age-appropriate skills that allow people to function in their everyday lives and social interactions. We found that a large amount of the variation in adaptive behavior scores was not explained by cognitive development, autism symptom severity, and behavioral and emotional problems. In addition, there was a wide range of adaptive ability levels in children with autism in our study, including in those with low, average, or high cognitive scores. Our results suggest that adaptive behavior scores could provide useful information about the strengths and support needs of autistic children above and beyond measures of cognitive ability and autism symptom severity. Adaptive behavior scores provide important information on the needs of autistic people. [ABSTRACT FROM AUTHOR]

The goal of this preliminary investigation was to compare demographic and clinical characteristics in a sample of children with likely Social (Pragmatic) Communication Disorder (SCD) (N = 117) to those in children with possible (N = 118) and some (N = 126) SCD traits, other developmental delay (DD) (N = 91) and autism spectrum disorder (ASD) (N = 642). We used data from the Study to Explore Early Development (SEED), a multi-site case–control study. Items reflecting SCD DSM-5 criteria were selected from an autism diagnostic measure, with SCD categories identified by creating quartiles. Our results suggest that SCD may fall along a continuum involving elevated deficits (in comparison to DD with no SCD) in social communication and restricted and repetitive behavior that do not reach the clinical threshold for ASD. [ABSTRACT FROM AUTHOR]

Persons identified in early childhood as having autism spectrum disorder (autism) often have co-occurring health problems that extend into adolescence (1-3). Although only limited data exist on their health and use of health care services as they transition to adolescence, emerging data suggest that a minority of these persons receive recommended guidance* from their primary care providers (PCPs) starting at age 12 years to ensure a planned transition from pediatric to adult health care (4,5). To address this gap in data, researchers analyzed preliminary data from a follow-up survey of parents and guardians of adolescents aged 12-16 years who previously participated in the Study to Explore Early Development (https://www.cdc.gov/ncbddd/autism/seed.html). The adolescents were originally studied at ages 2-5 years and identified at that age as having autism (autism group) or as general population controls (control group). Adjusted prevalence ratios (aPRs) that accounted for differences in demographic characteristics were used to compare outcomes between groups. Adolescents in the autism group were more likely than were those in the control group to have physical difficulties (21.2% versus 1.6%; aPR = 11.6; 95% confidence interval [CI] = 4.2-31.9), and to have additional mental health or other conditions† (one or more condition: 63.0% versus 28.9%; aPR = 1.9; 95% CI = 1.5-2.5). Adolescents in the autism group were more likely to receive mental health services (41.8% versus 22.1%; aPR = 1.8, 95% CI = 1.3-2.6) but were also more likely to have an unmet medical or mental health service need§ (11.0% versus 3.2%; aPR = 3.1; 95% CI = 1.1-8.8). In both groups, a small percentage of adolescents (autism, 7.5%; control, 14.1%) received recommended health care transition (transition) guidance. These findings are consistent with previous research (4,5) indicating that few adolescents receive the recommended transition guidance and suggest that adolescents identified with autism in early childhood are more likely than adolescents in the general population to have unmet health care service needs. Improved provider training on the heath care needs of adolescents with autism and coordination of comprehensive programs¶ to meet their needs can improve delivery of services and adherence to recommended guidance for transitioning from pediatric to adult health care. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

This study investigated the prevalence, and the developmental, behavior and emotional outcomes of 675 preschoolers with ASD with or without a history of regression, who participated in the Study to Explore Early Development (SEED). The SEED project is a cross-sectional case-control study that collected data between 2007 and 2011. Children’s history of regression, adaptive skills, and behavior problems were assessed using the Autism Diagnostic Interview-Revised (ADI-R), the Vineland Adaptive Behavior Scales-Second Edition (Vineland-2), and the Child Behavior Checklist (CBCL), respectively; and children’s developmental levels were assessed using the Mullen Scales of Learning (MSEL). Findings from this study indicated that 26% of children experienced social and language regression, and of those with regression, 76% had regained lost skills upon completion of the study. Compared to children without a history of regression, children with social regression demonstrated increased internalizing problems and decreased fine motor skills, and children with language regression demonstrated poorer language skills. Also, children with language and social regression displayed poorer adaptive communication skills than children without regression. Children who experienced regression in one area of development demonstrated better outcomes than those who experience regression in multiple areas. To conclude, children with regression are at risk for poorer outcomes during their preschool years. [ABSTRACT FROM AUTHOR]

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

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

Background: Current knowledge about parental reasons for allowing child participation in research comes mainly from clinical trials. Fewer data exist on parents' motivations to enrol children in observational studies. Objectives: Describe reasons parents of preschoolers gave for participating in the Study to Explore Early Development (SEED), a US multi‐site study of autism spectrum disorder (ASD) and other developmental delays or disorders (DD), and explore reasons given by child diagnostic and behavioural characteristics at enrolment. Methods: We included families of children, age 2–5 years, participating in SEED (n = 5696) during 2007–2016. We assigned children to groups based on characteristics at enrolment: previously diagnosed ASD; suspected ASD; non‐ASD DD; and population controls (POP). During a study interview, we asked parents their reasons for participating. Two coders independently coded responses and resolved discrepancies via consensus. We fit binary mixed‐effects models to evaluate associations of each reason with group and demographics, using POP as reference. Results: Participants gave 1–5 reasons for participation (mean = 1.7, SD = 0.7). Altruism (48.3%), ASD research interest (47.4%) and perceived personal benefit (26.9%) were most common. Two novel reasons were knowing someone outside the household with the study conditions (peripheral relationship; 14.1%) and desire to contribute to a specified result (1.4%). Odds of reporting interest in ASD research were higher among diagnosed ASD participants (odds ratio [OR] 2.89, 95% confidence interval [CI] 2.49–3.35). Perceived personal benefit had higher odds among diagnosed (OR 1.92, 95% CI 1.61–2.29) or suspected ASD (OR 3.67, 95% CI 2.99–4.50) and non‐ASD DD (OR 1.80, 95% CI 1.50–2.16) participants. Peripheral relationship with ASD/DD had lower odds among all case groups. Conclusions: We identified meaningful differences between groups in parent‐reported reasons for participation. Differences demonstrate an opportunity for future studies to tailor recruitment materials and increase the perceived benefit for specific prospective participants. [ABSTRACT FROM AUTHOR]

Gastrointestinal symptoms (GIS) are commonly reported in children with autism spectrum disorder (ASD). This multi-site study evaluated the prevalence of GIS in preschool-aged children with ASD/(n = 672), with other developmental delays (DD)/(n = 938), and children in the general population (POP)/(n = 851). After adjusting for covariates, children in the ASD group were over 3 times more likely to have parent-reported GIS than the POP group, and almost 2 times more likely than the DD group. Children with GIS from all groups had more behavioral and sleep problems. Within the ASD group, children with developmental regression had more GIS than those without; however, there were no differences in autism severity scores between children with and without GIS. These findings have implications for clinical management. [ABSTRACT FROM AUTHOR]

Prior studies investigating restricted and repetitive behavior (RRB) subtypes within autism spectrum disorder (ASD) have found varied factor structures for symptom groupings, in part, due to variation in symptom measurement and broad sample age ranges. This study examined RRBs among 827 preschool-age children, ages 35 to 71 months, through an exploratory factor analysis of RRB items from the Autism Diagnostic Interview-Revised (ADI-R) collected through the Study to Explore Early Development. The factor structures of RRBs among children with confirmed ASD versus those with non-autism developmental concerns were qualitatively compared. Correlations between RRB factors and participant characteristics were examined in the ASD group. Three conceptually well-defined factors characterized as repetitive sensorimotor behaviors (RSMB), insistence on sameness (IS), and a novel stereotyped speech (SPEECH) factor emerged for the ASD group only. Distinct factors were supported by different clinical correlates. Findings have implications for improving differential diagnosis and understanding of ASD symptomatology in this age range. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

We analyzed CBCL/1½-5 Pervasive Developmental Problems (DSM-PDP) scores in 3- to 5-year-olds from the Study to Explore Early Development (SEED), a multi-site case control study, with the objective to discriminate children with ASD (N = 656) from children with Developmental Delay (DD) (N = 646), children with Developmental Delay (DD) plus ASD features (DD-AF) (N = 284), and population controls (POP) (N = 827). ASD diagnosis was confirmed with the ADOS and ADI-R. With a cut-point of T ≥ 65, sensitivity was 80% for ASD, with specificity varying across groups: POP (0.93), DD-noAF (0.85), and DD-AF (0.50). One-way ANOVA yielded a large group effect (η2 = 0.50). Our results support the CBCL/1½-5's as a time-efficient ASD screener for identifying preschoolers needing further evaluation. [ABSTRACT FROM AUTHOR]

BACKGROUND: Sleep problems can impact daytime behavior, quality of life, and overall health. We compared sleep habits in young children with autism spectrum disorder (ASD) and other developmental delays and disorders and in children from the general population (POP). METHODS: We included 2- to 5-year-old children whose parent completed all items on the Children's Sleep Habits Questionnaire (CSHQ) in a multisite case-control study: 522 children with ASD; 228 children with other developmental delays and disorders with autism spectrum disorder characteristics (DD w/ASD); 534 children with other developmental delays and disorders without autism spectrum disorder characteristics (DD w/o ASD); and 703 POP. Multivariable analysis of variance compared CSHQ mean total score (TS) and subscale scores between groups. Logistic regression analysis examined group differences by using TS cutoffs of 41 and 48. Analyses were adjusted for covariates. RESULTS: Mean CSHQ TS for children in each group: ASD (48.5); DD w/ASD (50.4); DD w/o ASD (44.4); and POP (43.3). Differences between children with ASD and both children with DD w/o ASD and POP were statistically significant. Using a TS cutoff of 48, the proportion of children with sleep problems was significantly higher in children in the ASD group versus DD w/o ASD and POP groups (adjusted odds ratios [95% confidence intervals]: 2.12 [1.57 to 2.87] and 2.37 [1.75 to 3.22], respectively). CONCLUSIONS: Sleep problems are more than twice as common in young children with ASD and DD w/ASD. Screening for sleep problems is important in young children to facilitate provision of appropriate interventions. [ABSTRACT FROM AUTHOR]

Opioid use during pregnancy is associated with suboptimal pregnancy outcomes. Little is known about child neurodevelopmental outcomes. We examined associations between maternal opioid prescriptions preconception to delivery (peri-pregnancy) and child's risk of ASD, developmental delay/disorder (DD) with no ASD features, or ASD/DD with autism features in the Study to Explore Early Development, a case-control study of neurodevelopment. Preconception opioid prescription was associated with 2.43 times the odds of ASD [95% confidence interval (CI) 0.99, 6.02] and 2.64 times the odds of ASD/DD with autism features (95% CI 1.10, 6.31) compared to mothers without prescriptions. Odds for ASD and ASD/DD were non-significantly elevated for first trimester prescriptions. Work exploring mechanisms and timing between peri-pregnancy opioid use and child neurodevelopment is needed. [ABSTRACT FROM AUTHOR]

The Social Communication Questionnaire (SCQ) and the Social Responsiveness Scales (SRS) are commonly used screeners for autism spectrum disorder (ASD). Data from the Study to Explore Early Development were used to examine variations in the performance of these instruments by child characteristics and family demographics. For both instruments, specificity decreased as maternal education and family income decreased. Specificity was decreased with lower developmental functioning and higher behavior problems. This suggests that the false positive rates of the SRS and the SCQ are associated with child characteristics and family demographic factors. There is a need for ASD screeners that perform well across socioeconomic and child characteristics. Clinicians should be mindful of differential performance of these instruments in various groups of children. [ABSTRACT FROM AUTHOR]

Autism spectrum disorder (ASD) diagnosis relies on parent-reported and clinician-observed instruments. Sometimes, results between these instruments disagree. The broader autism phenotype (BAP) in parent-reporters may be associated with discordance. Study to Explore Early Development data (N = 712) were used to address whether mothers with BAP and children with ASD or non-ASD developmental disabilities were more likely than mothers without BAP to 'over-' or 'under-report' child ASD on ASD screeners or interviews compared with clinician observation or overall impression. Maternal BAP was associated with a child meeting thresholds on a maternal-reported screener or maternal interview when clinician ASD instruments or impressions did not (risk ratios: 1.30 to 2.85). Evidence suggests acknowledging and accounting for reporting discordances may be important when diagnosing ASD. [ABSTRACT FROM AUTHOR]

Self-injurious behaviors (SIB) have been reported in more than 30 % of children with an autism spectrum disorder (ASD) in clinic-based studies. This study estimated the prevalence of SIB in a large population-based sample of children with ASD in the United States. A total of 8065 children who met the surveillance case definition for ASD in the Autism and Developmental Disabilities Monitoring (ADDM) Network during the 2000, 2006, and 2008 surveillance years were included. The presence of SIB was reported from available health and/or educational records by an expert clinician in ADDM Network. SIB prevalence averaged 27.7 % across all sites and surveillance years, with some variation between sites. Clinicians should inquire about SIB during assessments of children with ASD. [ABSTRACT FROM AUTHOR]

This study examined the prevalence and characteristics of autism spectrum disorder (ASD), cerebral palsy (CP), hearing loss (HL), intellectual disability (ID), and vision impairment (VI) over a 15–20 year time period, with specific focus on concurrent changes in ASD and ID prevalence. We used data from a population-based developmental disabilities surveillance program for 8-year-olds in metropolitan Atlanta. From 1991–2010, prevalence estimates of ID and HL were stable with slight increases in VI prevalence. CP prevalence was constant from 1993–2010. The average annual increase in ASD prevalence was 9.3% per year from 1996–2010, with a 269% increase from 4.2 per 1,000 in 1996 to 15.5 per 1,000 in 2010. From 2000–2010, the prevalence of ID without ASD was stable; during the same time, the prevalence of ASD with and without co-occurring ID increased by an average of 6.6% and 9.6% per year, respectively. ASD prevalence increases were found among both males and females, and among nearly all racial/ethnic subgroups and levels of intellectual ability. Average annual prevalence estimates from 1991–2010 underscore the significant community resources needed to provide early intervention and ongoing supports for children with ID (13.0 per 1,000), CP, (3.5 per 1,000), HL (1.4 per 1,000) and VI (1.3 in 1,000), with a growing urgency for children with ASD. [ABSTRACT FROM AUTHOR]

Abstract: 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. [Copyright &y& Elsevier]

The Study to Explore Early Development (SEED), a multisite investigation addressing knowledge gaps in autism phenotype and etiology, aims to: (1) characterize the autism behavioral phenotype and associated developmental, medical, and behavioral conditions and (2) investigate genetic and environmental risks with emphasis on immunologic, hormonal, gastrointestinal, and sociodemographic characteristics. SEED uses a case-control design with population-based ascertainment of children aged 2-5 years with an autism spectrum disorder (ASD) and children in two control groups-one from the general population and one with non-ASD developmental problems. Data from parent-completed questionnaires, interviews, clinical evaluations, biospecimen sampling, and medical record abstraction focus on the prenatal and early postnatal periods. SEED is a valuable resource for testing hypotheses regarding ASD characteristics and causes. [ABSTRACT FROM AUTHOR]

The article reports on the research on the Timing of Identification among Children with Autism Spectrum Disorder: Findings from a Population-based Study. The study examined the timing of identification among children with autism using a population-based sample from an ongoing surveillance effort. The result reveals that the median age of identification was 5.7 years and parametric survival models indicates that several factors were associated with a younger age of identification. It asserts that the large gap between the age at which children can be identified on the basis of best available practices suggests the substantial need for further research.

The original version of this article unfortunately contained a mistake in Table 2. The "Time of use" should be the column header with the corresponding row with "N = 126" belonging to the "Peri-pregnancy" row. The "Preconception" row should be the row with "N = 17", "Trimester 1" should be the "N = 29" row, "Trimester 2" should be the "N = 25" row, and "Trimester 3" should be the "N = 47" row. [ABSTRACT FROM AUTHOR]