There are several well-known associations between imitation deficits and autism spectrum disorder (ASD). However, it remains unclear what mechanisms underly these deficits, and there is little evidence from more ecologically valid sources. To explore child characteristics and demographic factors that may relate to imitation, the present study analyzed data from a subset of children with ASD that participated in the Study to Explore Early Development (SEED; N = 2059, 81 % male). SEED is a large case-control study of the risk factors of ASD. We used items that capture parent report of real-world imitation ability and used a hierarchical regression to explore associations with ASD symptoms, age, developmental level, internalizing and externalizing problems, and demographic factors. We found that as restricted and repetitive behaviors increased, imitation decreased, and that some of the variance in this association was accounted for by other child and demographic factors. However, imitation was not related to social problems related to ASD. Internalizing problems were also negatively associated with imitation, whereas chronological age and developmental level were positively associated with imitation. Black children also showed higher levels of imitation relative to White children. These data suggest that imitation is a complex phenomenon, and that both autistic behaviors, as well as other non-autistic child characteristics (age, developmental level, internalizing problems, race) may account for some portion of the relationship between imitation and ASD. This serves as a starting point for future research to investigate the nuanced relationship between imitation and ASD.

Purpose:The objectives of this study were to investigate associations between co-occurring developmental, psychiatric, behavioral, and medical symptoms and conditions and autism spectrum disorder (ASD) traits, as well as predictors of changes in autistic traits from early childhood to adolescence. Methods:Participants from the Study to Explore Early Development (SEED) were identified as having autism spectrum disorder (ASD) (n=707), another developmental disorder (DD) (n=995), or as a population comparison group (POP) (n=898). Caregivers completed the Social Responsiveness Scale-2nd edition (SRS-2) to measure autistic traits and were asked about co-occurring symptoms and conditions when their child was 2-5 years old and 12-16 years old. Children completed the Mullen Scales of Early Learning (MSEL) when they were 2-5 years old. Results:Regression models revealed that in early childhood and adolescence, multiple co-occurring symptoms and conditions were significantly associated with higher SRS-2 scores (e.g., motor, sensory, and sleep problems for children with ASD and DD). Within the ASD and DD groups, but not the POP group, lower MSEL scores at childhood were associated with greater increases in SRS-2 scores between early childhood and adolescence. Conclusions:Findings suggest that motor, sensory, and sleep problems may be important intervention targets for ASD and DD youth with elevated SRS-2 scores and that interventions that target cognitive functioning in childhood may be important to modify trajectories of autistic traits from childhood to adolescence.

To understand trends in mothers' causal ideas about autism spectrum disorder (ASD) that may be important in targeting education efforts for parents and healthcare providers, as these may be associated with healthcare choices. Data from the Study to Explore Early Development (SEED) was used to examine the causal ideas mothers had, sociodemographic characteristics associated with causal ideas, and whether reported ideas differed over time. SEED included 8307 mothers of pre-school children, with and without ASD, who completed a maternal phone interview between 2007 and 2020. Less than half of mothers (39.3%) offered a causal idea. The most frequently offered causal ideas were genetics, vaccines, environment, parent lifestyle issues, pre/peri-pregnancy maternal medical issues, labor/delivery experiences, and child diet. Some aspects of sociodemographic characteristics, particularly ethno-cultural background, were significantly associated with reporting several causal ideas. Odds of reporting vaccines decreased over time while odds of reporting genetics, parent lifestyle, maternal medical, or labor/delivery issues increased over time. There were significant differences in odds of reporting several causal ideas between those with and those without a child with ASD in the household. Causal ideas reported were consistent with prior research but important differences between those with and those without household ASD as well as significant time trends for certain causes were noted. Implications for public health communication and future research are discussed.

ObjectiveTo test our initial hypotheses that the COVID-19 pandemic was associated with: (1) decreases in adaptive behavior and increases in behavioral and emotional problems of children with autism; (2) greater impacts for those who lost specialty services; and (3) greater behavioral and emotional problems for children with autism versus control participants.MethodEligible participants (N=1,158) enrolled in Phase 3 of the multi-site, case-control Study to Explore Early Development (SEED) prior to March 31, 2020, between 2-5 years old and completed follow-up assessments between January-July 2021. Caregivers completed a COVID-19 Impact Assessment Questionnaire, Vineland Adaptive Behavior Scales (VABS), and Child Behavior Checklist (CBCL) for 274 children with autism and 385 control participants.ResultsMean VABS communication scores of children with autism decreased significantly (-4.2; standard deviation [SD], 10.5) between pre-pandemic and pandemic periods, while VABS composite (+2.0; SD, 9.0), daily living (+5.5; SD, 11.4), socialization (+2.3; SD, 10.0), and CBCL scores (-3.2; SD, 8.4) improved. In contrast, CBCL scores worsened in population control participants (+3.4; SD, 8.8). Children with autism who missed specialty appointments scored significantly lower on the VABS during the pandemic versus those who did not (VABS Composite 70.6; 95% confidence interval [CI]: 68.8-72.4 vs. 74.5; 95% CI: 71.8-77.2).ConclusionWhile stay-at-home policies of the pandemic may have beneficially impacted daily living skills, socialization, and behavioral and emotional wellbeing of children with autism, benefits may have occurred at the cost of communication skills. These findings indicate the need for strategies to maintain therapeutic services in future emergency settings.

The Inventory for Client and Agency Planning (ICAP) and the Supports Intensity Scale (SIS) have been used to determine Medicaid eligibility for individuals with disabilities but are designed to capture different information. This project explored how these surveys relate to services received and each other. ICAP and SIS surveys were conducted on 125 Wyoming adults with intellectual and developmental disabilities eligible for a Medicaid Waiver. Results suggest that both measures were strongly associated and could be used to predict services. However, this study suggests that the SIS and ICAP summary measures were separate constructs. Therefore, both instruments can be used to determine Medicaid eligibility, but implementers should be aware of differences in the types of constructs being captured.

BackgroundIndividuals with intellectual and developmental disabilities (IDD) face numerous health disparities, particularly in rural communities. However, they are rarely included in the research process to address these challenges as co-researchers. Little is known about the experience of how individuals with disabilities participate as co-researchers, or the barriers they face.ObjectiveThe current study explores the experiences of individuals with IDD as co-researchers through discussions with individuals with IDD themselves, those who support them, and disability researchers.MethodData were collected through focus groups with individuals with IDD, individuals who support those with IDD, and disability researchers. Each group was asked about their journey through the research process, from beginning to end. Data were analyzed thematically by two independent coders.ResultsWhile all groups viewed the inclusion of individuals with disabilities as co-researchers as valuable, many barriers still prevented this population from fully participating in the research process. Individuals with IDD viewed research positively, especially when the topics were personally relevant. However, many thought research was intimidating and wanted additional support. Support providers expressed that the people they support have lots to contribute to research and felt empowered when participating. Disability researchers discussed many barriers to include individuals with IDD as co-researchers, including limited time, resources, and inflexibility of research processes. Researchers felt they could use more experience working with individuals with disabilities as co-researchers to integrate these individuals into all aspects of the process.DiscussionThere is broad interest in including those with IDD as co-research, but many barriers remain. Full inclusion can be supported by developing a welcoming and accessible environment. Researchers may need institutional support and training to pursue inclusive IDD research. Asking individuals with IDD for their expertise, develop topics of research that those with IDD can relate to, and involving support providers may be helpful. Developing innovative strategies to support inclusion is needed from all groups.

BACKGROUND:Frequent concerns are expressed about the diets of children with developmental disabilities. However, previous reports have been based on small samples. OBJECTIVES:The study aimed to assess nutrient intakes of young children with autism spectrum disorder (ASD), children with other developmental delays and disorders (DD), and general population controls (POP) and to examine nutrient intakes for adequacy. METHODS:The Study to Explore Early Development is a multisite community-based, case-control study designed to understand ASD better. Parents of children (aged 2-5 y) completed 3-d diet diaries to capture all foods and beverages (excluding dietary supplements) consumed by their children. Foods from diaries were analyzed for macronutrient and micronutrient content. Analysis of variances examined group differences in nutrient intakes (criterion of P < 0.001). Chi-square tests of independence examined differences in the proportion of children in each group: 1) not meeting the estimated average requirements (EAR) and 2) exceeding the tolerable upper intake level (UL) for each nutrient, with the examination of standardized residuals (= ±1.96) to ascertain differences among groups. RESULTS:Diet records (n = 1227) were obtained for children in the 3 groups: ASD (n = 338), DD (n = 412), and POP (n = 477). Few clinically important group differences were noted in children's nutrient intakes and most met EARs although few had intakes above the ULs. Notable exceptions included: 1) >10% of children below the EAR for vitamins A and E, pantothenate, calcium, and fiber; 2) >10% above the ULs for niacin, folate, manganese, and added sugars; 3) >80% were above the UL for added sugars and >95% did not meet EAR for fiber. CONCLUSIONS:Reassurance can be taken from this study that young children's nutrient intakes from food, including those with developmental disabilities, meet most recommendations for nutrient adequacy. Further study of food intake patterns and diet quality is warranted, with concurrent clinical indicators of nutrient status.

This study examined factors related to resilience in children (46-91 months) with and without autism spectrum disorder (ASD) during the COVID-19 pandemic. From January 2021 to June 2021 a cross-sectional questionnaire measuring the pandemic's impact on participants was administered to participants from The Study to Explore Early Development (SEED; N = 641). A sum score of items measuring child resilience was computed as an outcome. A Tobit regression was used to model the impact of child's ASD status, demographic variables, child developmental characteristics, family income, parent work characteristics, and other family and maternal characteristics. There was no association between resilience and ASD status, but it was inversely related to maternal mental health challenges. Resilience was also significantly lower for Asian than non-Hispanic White children and inversely associated with child behavior problems. There was an interaction between loss of work and the family income. Child resilience is a complex phenomenon impacted by child, family, and social factors. Further research is needed to understand how to address factors negatively associated with child resilience and promote factors positively associated with child resilience. Focusing on family and social factors, along with direct child support, may promote resilience in all children.

Objective:Many children with autism spectrum disorder (ASD) and other developmental disabilities (DD) transitioned to telehealth services due to the COVID-19 pandemic. Our objectives were to describe reductions in allied and behavioral healthcare services and receipt of caregiver training to deliver services at home because of COVID-19 for children with ASD and other DD, and factors associated with worse response to remote delivery of services for children with ASD.Method:Prior to the pandemic, children 2 to 5 years of age were enrolled in a multi-site case-control study and completed a developmental assessment. Caregivers completed questionnaires on child behavior problems and ASD symptoms. Children were classified as having ASD vs another DD based on standardized diagnostic measures. Subsequently, caregivers completed a survey during January to June 2021 to assess how COVID-19 affected children and families.Results:Caregivers reported that most children with ASD and other DD had a decrease in service hours (50.0%-76.9% by service type) during the COVID-19 pandemic. Children with ASD were significantly more likely to experience reduced speech/language therapy than children with other DD. Receipt of caregiver training to deliver services at home ranged from 38.1% to 57.4% by service type. Among children with ASD, pre-pandemic problems with internalizing behaviors and social communication/interaction were associated with worse response to behavioral telehealth but no other common therapies.Conclusion:Our study demonstrates the caregiver-reported impacts of COVID-19 on remote delivery of allied and behavioral healthcare services for children with ASD and other DD. Considerations for caregiver support and remote delivery of services are provided.

PurposeTo describe retention of an autism spectrum disorder (ASD) diagnosis from preschool to adolescence and the most common co-occurring diagnoses among children with ASD in preschool and adolescence. A second objective was to identify co-occurring diagnoses more likely to emerge between preschool and adolescence among children with ASD vs. another developmental or mental health diagnosis in preschool.MethodsChildren completed a case-control study when they were between 2 and 5 years of age. Caregivers reported their child's diagnoses of ASD and attention deficit hyperactivity disorder (ADHD), any developmental delay (DD), epilepsy/seizure disorder, obsessive-compulsive disorder, sensory integration disorder, and speech/language disorder when the child was preschool age and, separately, during adolescence. Any anxiety and depression/mood disorder, intellectual disability (ID), and learning disability (LD) were considered only in adolescence.Results85.5% of preschool children retained their ASD diagnosis in adolescence. DD, sensory integration disorder, and speech-language disorder co-occurred in over 20% of preschool age children with ASD. These same conditions, along with anxiety disorders, ADHD, ID, and LD, co-occurred in over 20% of adolescents with ASD. Significantly more children with ASD vs. another developmental or mental health diagnosis in preschool gained diagnoses of ADHD, DD, sensory integration disorder, and speech-language disorder by adolescence.ConclusionASD is a highly stable diagnosis and co-occurring conditions are common. The prevalence of co-occurring diagnoses may depend on age, with some persisting from preschool to adolescence and others emerging over time. Health and education providers can use these findings to inform precision monitoring and treatment planning.

Introduction Neonatal abstinence syndrome (NAS) is a complex condition resulting from prenatal substance exposure that has become increasingly prevalent as a result of the opioid epidemic. NAS can lead to long-term developmental challenges. Interdisciplinary teams with experience working with children with disabilities that focus on social determinants of health can be effective at supporting families affected by NAS. Unfortunately, interdisciplinary teams often lack sufficient training, ongoing practice support, and public health policies to support these families. The objective of this project was to determine the feasibility and impact of a National Training Initiative, called Project SCOPE, to improve the capacity of providers to address the needs of children with NAS and their families.Methods Fourteen (14) sites were trained to fidelity in the ECHO model and SCOPE curriculum, and then each team implemented this model for at least one, eight to 12 session series between 2019-2022. The reach, impact, satisfaction, and intention to implement the model were assessed from administrative records, pre/post surveys, and post-session evaluations.Results SCOPE state teams delivered the curriculum to 9,392 individuals across 33 US states. Surveys from 2,197 individuals were used for analysis. Most participants (84%) had previous training in trauma informed care, but only 53% had any training on the NAS or the opioid crisis' impact on children. Satisfaction with SCOPE sessions was high (96.4%), and there was a statistically significant increase of self-reported knowledge change from pre- to post-SCOPE. Over 94% reported their skills increased because of participation. Over 97% of participants indicated their motivation to work with this population increased from SCOPE participation and that they could successfully apply what they learned. Almost 70% reported they were "very" or "extremely" likely to use their new skills.Discussion Project SCOPE is a highly effective and impactful model that can radically improve capacity to support children affected by the opioid epidemic, thereby increasing the capacity of our healthcare system to respond to this epidemic. Moreover, this model can be rapidly deployed and reach a wide geographic region, especially areas that are affected by the opioid crisis and underserved rural communities.

OBJECTIVE:Early treatment of autism spectrum disorder (ASD) can improve developmental outcomes. Children with ASD from minority families often receive services later. We explored factors related to child's age at time of mother's first concerns about child's development and subsequent time to service initiation among children with ASD. METHODS:Analysis included 759 preschool-age children classified with ASD based on comprehensive evaluations. Factors associated with retrospectively reported child age at time of first maternal concern and subsequent time to service initiation were investigated using multiple linear regression and Cox proportional hazards. RESULTS:Earlier maternal concern was associated with multiparity, ≥1 child chronic condition, externalizing behaviors, and younger gestational age, but not race/ethnicity. Time to service initiation was longer for children of non-Latino Black or other than Black or White race and higher developmental level and shorter for children with ≥1 chronic condition and older child age at first maternal concern. CONCLUSION:Parity, gestational age, and child health and behavior were associated with child age at first maternal concern. Knowledge of child development in multiparous mothers may allow them to recognize potential concerns earlier, suggesting that first time parents may benefit from enhanced education about normal development. Race/ethnicity was not associated with child's age when mothers recognized potential developmental problems; hence, it is unlikely that awareness of ASD symptoms causes racial/ethnic disparities in initiation of services. Delays in time to service initiation among children from racial/ethnic minority groups highlight the need to improve their access to services as soon as developmental concerns are recognized.

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.

BackgroundAutistic adults and those with other developmental disabilities (DD) have increased depressive symptoms and decreased activity engagement when compared to those with no DD. Few studies explore activities related to depressive symptoms in autistic people and those with other DD during adolescence.ObjectiveThe objectives of this analysis were to describe depressive symptoms and activity engagement among autistic adolescents and those with other DD and no DD and explore types of activities associated with depressive symptoms, stratified by study group.MethodsParents of adolescents completed a multi-site case-control study of autism and other DD when their child was 2-5 years of age and a follow-up survey when their child was 12-16 years of age. Questions asked about the adolescent’s current diagnoses, depressive symptoms (i.e., diagnosis, medication use, or symptoms), and engagement in club, social, sport, vocational, volunteer, and other organized activities.ResultsAutistic adolescents (N=238) and those with other DD (N=222) were significantly more likely to have depressive symptoms than adolescents with no DD (N=406), (31.9%, 30.6%, and 15.0% respectively). Lower percentages of autistic adolescents participated in activities than peers with other DD, who had lower percentages than peers with no DD. Participation in sports was associated with lower likelihood of depressive symptoms in all groups.ConclusionsAutistic adolescents and those with other DD are at increased risk for depressive symptoms and reduced activity engagement. Participation in sports may be especially important for adolescent mental health regardless of disability status. Implications for public health education and intervention are discussed.

BackgroundTo control the spread of the coronavirus disease (COVID-19), many jurisdictions throughout the world enacted public health measures that had vast socio-economic implications. In emergency situations, families of children with developmental disabilities (DDs), including autism, may experience increased difficulty accessing therapies, economic hardship, and caregiver stress, with the potential to exacerbate autism symptoms. Yet, limited research exists on the economic impacts of the COVID-19 pandemic on families of children with autism or another DD compared to families of children from the general population.ObjectivesTo assess impact of the COVID-19 pandemic related to parental employment and economic difficulties in families of children with autism, another DD, and in the general population, considering potential modification by socioeconomic disadvantage before the pandemic and levels of child behavioral and emotional problems.MethodsThe Study to Explore Early Development (SEED) is a multi-site, multi-phase, case-control study of young children with autism or another DD as compared to a population comparison group (POP). During January-July 2021, a COVID-19 Impact Assessment Questionnaire was sent to eligible participants (n=1,789) who had enrolled in SEED Phase 3 from September 2017-March 2020. Parents completed a questionnaire on impacts of the pandemic in 2020 and completed the Child Behavior Checklist (CBCL) to measure behavioral and emotional health of their child during this time. Multiple logistic regression models were built for employment reduction, increased remote work, difficulty paying bills, or fear of losing their home. Covariates include group status (autism, DD, POP), household income at enrollment, child’s race and ethnicity, and binary CBCL Total Problems T-score (<60 vs. ≥60). Unadjusted and adjusted odds ratios (aOR) and 95% confidence intervals (CI) were calculated.ResultsThe study included 274 children with autism, 368 children with another DD, and 385 POP children. The mean age of 6.1 years (standard deviation, 0.8) at the COVID-19 Impact Assessment did not differ between study groups. Parents of children with autism were less likely to transition to remote work (aOR [95% CI] = 0.6 [0.4, 1.0]) and more likely to report difficulty paying bills during the pandemic (1.8 [1.2, 2.9]) relative to parents of POP children. Lower income was associated with greater employment reduction, difficulty paying bills, and fear of losing their home, but inversely associated with transitioning to remote work. Parents of non-Hispanic (NH) Black children experienced greater employment reduction compared to parents of NH White children (1.9 [1.1, 3.0]). Parents from racial and ethnic minority groups were more likely to experience difficulty paying bills and fear losing their home, relative to NH White parents. Caregivers of children with CBCL scores in the clinical range were more likely to fear losing their home (2.1 [1.3, 3.4]).ConclusionThese findings suggest that families of children with autism, families of lower socio-economic status, and families of racial and ethnic minority groups experienced fewer work flexibilities and greater financial distress during the pandemic. Future research can be used to assess if these impacts are sustained over time.

This study evaluated developmental, psychiatric, and neurologic conditions among older siblings of children with and without autism spectrum disorder (ASD) to understand the extent of familial clustering of these diagnoses. Using data from the Study to Explore Early Development, a large multi-site case-control study, the analyses included 2,963 children aged 2-5 years with ASD, other developmental disabilities (DD group), and a population-based control group (POP). Percentages of index children with older siblings with select developmental, psychiatric, and neurologic conditions were estimated and compared across index child study groups using chi-square tests and multivariable modified Poisson regression. In adjusted analyses, children in the ASD group were significantly more likely than children in the POP group to have one or more older siblings with ASD, developmental delay, attention-deficit/hyperactivity disorder, intellectual disability, sensory integration disorder (SID), speech/language delays, or a psychiatric diagnosis (adjusted prevalence ratio [aPR] range: 1.4-3.7). Children in the DD group were significantly more likely than children in the POP group to have an older sibling with most of the aforementioned conditions, except for intellectual disability and psychiatric diagnosis (aPR range: 1.4-2.2). Children in the ASD group were significantly more likely than children in the DD group to have one or more older siblings with ASD, developmental delay, SID, or a psychiatric diagnosis (aPR range: 1.4-1.9). These findings suggest that developmental disorders cluster in families. Increased monitoring and screening for ASD and other DDs may be warranted when an older sibling has a DD diagnosis or symptoms.

Co-occurring psychiatric diagnoses are very common in individuals with ASD. Little is known about the effect that co-occurring psychiatric conditions may have on treatment response to CBT for children with ASD and anxiety. The present study examined the relationship between co-occurring psychiatric diagnoses and response to CBT for anxiety in ninety youth with ASD. Psychiatric complexity did not appear to differentially impact treatment response. A notable portion of youth with anxiety and externalizing disorders such as ADHD, no longer met criteria for those externalizing diagnoses following intervention. Results indicate that youth with ASD and anxiety present with complex psychiatric profiles and CBT for anxiety may positively affect co-occurring diagnoses. In addition, thorough and nuanced assessment of psychiatric symptoms in youth with ASD is needed to ensure the differentiation between diagnoses of anxiety and other co-occurring psychiatric symptoms.

OBJECTIVE:Understanding how the COVID-19 pandemic affected children with disabilities is essential for future public health emergencies. We compared children with autism spectrum disorder (ASD) with those with another developmental disability (DD) and from the general population (POP) regarding (1) missed or delayed appointments for regular health/dental services, immunizations, and specialty services; (2) reasons for difficulty accessing care; and (3) use of remote learning and school supports. METHOD:Caregivers of children previously enrolled in the Study to Explore Early Development, a case-control study of children with ASD implemented during 2017 to 2020, were recontacted during January-June 2021 to learn about services during March-December 2020. Children were classified as ASD, DD, or POP during the initial study and were aged 3.4 to 7.5 years when their caregivers were recontacted during the pandemic. RESULTS:Over half of all children missed or delayed regular health/dental appointments (58.4%-65.2%). More children in the ASD versus DD and POP groups missed or delayed specialty services (75.7%, 58.3%, and 22.8%, respectively) and reported difficulties obtaining care of any type because of issues using telehealth and difficulty wearing a mask. During school closures, a smaller proportion of children with ASD versus another DD were offered live online classes (84.3% vs 91.1%), while a larger proportion had disrupted individualized education programs (50.0% vs 36.2%). CONCLUSION:Minimizing service disruptions for all children and ensuring continuity of specialty care for children with ASD is essential for future public health emergencies. Children may need additional services to compensate for disruptions during the pandemic.