Racial and ethnic disparities in the co-occurrence of intellectual disability and autism: Impact of incorporating measures of adaptive functioning.

Intellectual disability (ID) commonly co-occurs in children with autism. Although diagnostic criteria for ID require impairments in both cognitive and adaptive functioning, most population-based estimates of the frequency of co-occurring ID in children with autism-including studies of racial and ethnic disparities in co-occurring autism and ID-base the definition of ID solely on cognitive scores. The goal of this analysis was to examine the effect of including both cognitive and adaptive behavior criteria on estimates of co-occurring ID in a well-characterized sample of 2- to 5-year-old children with autism. Participants included 3264 children with research or community diagnoses of autism enrolled in the population-based Study to Explore Early Development (SEED) phases 1-3. Based only on Mullen Scales of Early Learning (MSEL) composite cognitive scores, 62.9% (95% confidence interval [CI]: 61.1, 64.7%) of children with autism were estimated to have co-occurring ID. After incorporating Vineland Adaptive Behavior Scales, Second Edition (VABS-II) composite or domains criteria, co-occurring ID estimates were reduced to 38.0% (95% CI: 36.2, 39.8%) and 45.0% (95% CI: 43.1, 46.9%), respectively. The increased odds of meeting ID criteria observed for non-Hispanic (NH) Black and Hispanic children relative to NH White children when only MSEL criteria were used were substantially reduced, though not eliminated, after incorporating VABS-II criteria and adjusting for selected socioeconomic variables. This study provides evidence for the importance of considering adaptive behavior as well as socioeconomic disadvantage when describing racial and ethnic disparities in co-occurring ID in epidemiologic studies of autism.

Health and Education Services During the COVID-19 Pandemic Among Young Children with Autism Spectrum Disorder and Other Developmental Disabilities.

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.

Implementing school-based cognitive behavior therapy for anxiety in students with autism or suspected autism via a train-the-trainer approach: Results from a clustered randomized trial.

LAY ABSTRACT: Autistic youth frequently experience anxiety that can negatively affect them at home, with friends, and at school. Autistic youth have difficulty accessing mental health care, and this is particularly true for youth from traditionally underserved backgrounds. Providing mental health programs in schools may increase access to care for autistic youth with anxiety. The purpose of the study was to train interdisciplinary school providers to deliver school-based Facing Your Fears, a cognitive behavior therapy program for anxiety in autistic youth. Seventy-seven interdisciplinary school providers across 25 elementary/middle schools were trained by their colleagues and members of the research (train-the-trainer approach). Eighty-one students with autism or suspected autism, ages 8-14 years, were randomly assigned to either school-based Facing Your Fears or usual care. Students in school-based Facing Your Fears showed significant reductions in anxiety compared to students in usual care according to caregiver and student report. Other measures involved examining change in provider cognitive behavior therapy knowledge after training and determining how well interdisciplinary school providers were able to deliver school-based Facing Your Fears. Results indicated that interdisciplinary school providers showed significant improvements in cognitive behavior therapy knowledge after training. Interdisciplinary school providers were able to deliver most of school-based Facing Your Fears activities and with good quality. The positive outcomes in this study are encouraging. Training interdisciplinary school providers to deliver school-based Facing Your Fears may increase access to care for anxious autistic students. Future directions and limitations are discussed.

Risk factors and clinical correlates of sensory dysfunction in preschool children with and without autism spectrum disorder.

Sensory dysfunction is a common feature of autism spectrum disorder (ASD). The objectives of this analysis were to examine risk factors and clinical correlates of sensory dysfunction in preschool children with and without ASD. Children aged 2-5 years were enrolled in a multi-site case-control study. Data were collected in eight areas across the United States in three phases. Caregivers completed an interview with questions on assisted delivery, maternal alcohol use, maternal anxiety during pregnancy, pregnancy weight gain, neonatal jaundice, preterm birth, and child sensory diagnosis given by a healthcare provider. Caregivers also completed an interview and questionnaires on sensory symptoms and clinical correlates of sensory dysfunction in their child. There were 2059 children classified as ASD, 3139 as other developmental delay or disability (DD), and 3249 as population comparison (POP). Caregivers reported significantly more sensory diagnoses and sensory symptoms in children classified as ASD than DD or POP (23.7%, 8.6%, and 0.8%, respectively, for a sensory diagnosis and up to 78.7% [ASD] vs. 49.6% [DD] for sensory symptoms). Maternal anxiety during pregnancy and neonatal jaundice were significantly associated with a sensory diagnosis and certain sensory symptoms in children with ASD and DD. Children's anxiety, attention deficits/hyperactivity, and sleep problems were significantly albeit subtly correlated with both a sensory diagnosis and sensory symptoms in children with ASD and DD. These findings support sensory dysfunction as a distinguishing symptom of ASD in preschool children and identify risk factors and clinical correlates to inform screening and treatment efforts in those with atypical development.

Gaze perception from head and pupil rotations in 2D and 3D: Typical development and the impact of autism spectrum disorder.

The study of gaze perception has largely focused on a single cue (the eyes) in two-dimensional settings. While this literature suggests that 2D gaze perception is shaped by atypical development, as in Autism Spectrum Disorder (ASD), gaze perception is in reality contextually-sensitive, perceived as an emergent feature conveyed by the rotation of the pupils and head. We examined gaze perception in this integrative context, across development, among children and adolescents developing typically or with ASD with both 2D and 3D stimuli. We found that both groups utilized head and pupil rotations to judge gaze on a 2D face. But when evaluating the gaze of a physically-present, 3D robot, the same ASD observers used eye cues less than their typically-developing peers. This demonstrates that emergent gaze perception is a slowly developing process that is surprisingly intact, albeit weakened in ASD, and illustrates how new technology can bridge visual and clinical science.

Using evaluative frameworks to examine the implementation outcomes of a cognitive behavioral therapy program for autistic students with anxiety within public school settings.

LAY ABSTRACT: Cognitive behavioral therapy helps to treat anxiety symptoms in autistic youth, but it is difficult for families to access cognitive behavioral therapy in the community. Training school providers to deliver cognitive behavioral therapy may help autistic youth and their families to access these programs. Unfortunately, we do not know how cognitive behavioral therapy programs can be delivered by school providers and how these programs help the autistic students who access them. This study addressed this gap and was part of a larger study that looked at the effectiveness of Facing Your Fears-School-Based in 25 public schools. The study goals were to understand whether Facing Your Fears-School-Based helped students and the factors that made it easy or difficult to deliver Facing Your Fears-School-Based in schools. Thirty providers participated in interviews guided by the Reach, Effectiveness, Adoption, Implementation, and Maintenance framework. Participants shared information that fell into several major categories that included (1) delivering Facing Your Fears-School-Based to many different students; (2) the positive impact of Facing Your Fears-School-Based on students' school participation; and (3) plans to continue using Facing Your Fears-School-Based. School providers also shared that Facing Your Fears-School-Based was easy to use for non-mental health providers and reported adapting Facing Your Fears-School-Based to meet student needs. The results of this study suggest that Facing Your Fears-School-Based may help autistic students and highlight the importance of using mental health programs in schools that are flexible, able to be adapted, and that are able to be used by many different types of school providers.

Many Young Children with Autism Who Use Psychotropic Medication Do Not Receive Behavior Therapy: A Multisite Case-Control Study.

OBJECTIVES: To explore how many pre-school aged children with autism spectrum disorder (ASD) used psychotropic medication, child and geographic factors associated with psychotropic medication use, and how many children who used psychotropic medication did or did not ever receive behavior therapy. STUDY DESIGN: Children 2-5 years of age were enrolled from 2012 to 2016 in a multisite case-control study designed to investigate the development and risk factors of ASD. Children with a positive ASD screen or ASD diagnosis upon enrollment were asked to complete a comprehensive evaluation to determine ASD status and developmental level. Caregivers completed a Services and Treatments Questionnaire and multiple self-administered questionnaires to determine child use of psychotropic medication, ever receipt of behavior therapy, and presence of co-occurring symptoms. RESULTS: There were 763 children who were classified as ASD and had data collected on the Services and Treatments Questionnaire. Of those, 62 (8.1%) used psychotropic medication to treat behavioral symptoms and 28 (3.7%) were ≤3 years of age when medication was first started. Attention problems (aOR, 7.65; 95% CI, 3.41-16.1; P < .001) and study site (aOR, 2.62; 95% CI, 1.04-6.56; P = .04) were significantly associated with psychotropic medication use after controlling for maternal race/ethnicity. More than one-half (59.7%) of those who used psychotropic medication did not ever receive behavior therapy. CONCLUSIONS: Many preschool-aged children with ASD who use psychotropic medication do not receive behavior therapy. Pediatricians are an important resource for children and families and can help facilitate behavioral treatment for children with ASD and other disorders.

Disparities in autism spectrum disorder diagnoses among 8-year-old children in Colorado: Who are we missing?

LAY ABSTRACT: Although autism can be reliably diagnosed as early as 2 years of age, many children are not diagnosed with autism until much later. We analyzed data to determine why many of the 8-year-old children who resided in Colorado and were identified as having autism through a review of their health and/or educational records did not have a documented clinical diagnosis of autism and were not eligible for special education services under an autism eligibility. We found that children who did not have a documented clinical diagnosis of autism and were not eligible for special education services under an autism eligibility were more likely to be female, aggressive, and argumentative. They had a poorer quality of information in their records and were less likely to have had a developmental regression, sleep problems, or an autism screener or diagnostic measure in their records. These results suggest that the symptoms characteristic of autism among this group of children may have been attributed to another disorder and that clinicians may be able to recognize autism more readily in children with more functional impairment and those who experience a developmental regression. We also discovered that differences in symptom presentations among children who had a documented clinical diagnosis of autism and/or were eligible for special education services under an autism eligibility were associated with different ages at autism diagnosis.

Emotion regulation, emotionality, and expression of emotions: A link between social skills, behavior, and emotion problems in children with ASD and their peers.

This study aimed to investigate differences between emotion regulation (ER), emotionality, and expression of emotions in children with Autism Spectrum Disorder (ASD) and their typically developing (TD) peers; and to examine the potential links between these areas of development with social skills in both groups, as well as with behavioral, emotional, and social problems in ASD. Forty-four children (40 males and 4 females, ages 3 to 7 years) with ASD (n = 22) and their TD peers (n = 22) were included in this study. Mothers reported about their children's ASD symptoms, social, emotional, and behavioral functioning. As predicted, children with ASD were described as showing decreased ER, increased emotionality, and decreased expression of emotions when compared to their TD peers. Moreover, in the ASD group, increased social skills were associated with enhanced ER and increased expression of emotions; and in the TD group, increased social skills were correlated with decreased emotionality. Finally, enhanced ER was linked to decreased peer problems, and increased prosocial behaviors; and decreased emotionality was linked to decreased behavior and emotional problems in the ASD group. Implications for further research are discussed.

Emotion regulation: A treatment target for autism spectrum disorder.

Individuals with autism spectrum disorder (ASD) tend to experience difficulties with emotion regulation (ER). Treatments designed to address ER difficulties in individuals with ASD are emerging. The authors review cognitive-behavioral therapy (CBT) and mindfulness-based treatments that have focused on ER difficulties in youth and young adults with ASD. In general, these treatments addressing ER skills have included awareness of emotions/psychoeducation about emotions, frustration tolerance, and ER skills, as well as practice and use of these skills during group therapy that sometimes includes caregivers. The results from these interventions are encouraging for individuals with high-functioning ASD because ER skills tend to improve following treatment. The inclusion of ER in other ASD treatments is discussed.

ASD Screening with the Child Behavior Checklist/1.5-5 in the Study to Explore Early Development.

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.

A Phenotype of Childhood Autism Is Associated with Preexisting Maternal Anxiety and Depression.

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.

Examining the inclusion of diverse participants in cognitive behavior therapy research for youth with autism spectrum disorder and anxiety.

Results of randomized controlled trials have demonstrated significant reductions in anxiety symptoms following cognitive behavior therapy participation. Although promising, the extent to which previous research has included families from low socioeconomic status or racially/ethnically diverse backgrounds is unknown. Aims of this study are as follows: (1) What is the race, ethnicity, and educational attainment of youth with autism spectrum disorder and their families who have participated in research examining the efficacy of cognitive behavior therapy for anxiety? and (2) How do the demographics of these participants compare to that of the United States census? A total of 14 studies were reviewed that included 473 participants. Chi-square analyses indicated that there are significant differences between the race/ethnicity of youth with autism spectrum disorder participating in cognitive behavior therapy research for anxiety and that of youth in the United States. Standard residuals indicated significant overrepresentation of White youth and significant underrepresentation of Black and Latino youth in cognitive behavior therapy research (all p-values <0.001). Similarly, there were significant differences in the educational attainment of caregivers participating in cognitive behavior therapy research, with a significant underrepresentation of caregivers from low socioeconomic status backgrounds ( p < 0.001). These findings have implications for the development of cognitive behavior therapy interventions for youth with autism spectrum disorder and anxiety that are both rigorous and inclusive.

Parent Perceptions of Community Autism Spectrum Disorder Stigma: Measure Validation and Associations in a Multi-site Sample.

In this study we developed a brief, English/Spanish bilingual parent-reported scale of perceived community autism spectrum disorder (ASD) stigma and tested it in a multi-site sample of Latino and non-Latino white parents of children with ASD. Confirmatory factor analysis of the scale supported a single factor solution with 8 items showing good internal consistency. Regression modeling suggested that stigma score was associated with unmet ASD care needs but not therapy hours or therapy types. Child public insurance, parent nativity, number of children with ASD in the household, parent-reported ASD severity, and family structure, were associated with higher stigma score. The scale and the scale's associations with service use may be useful to those attempting to measure or reduce ASD stigma.

Maternal beliefs about autism: A link between intervention services and autism severity in White and Latino mothers.

Variation in parental beliefs about Autism Spectrum Disorder (ASD) may impact subsequent service use profiles. This study aimed to examine (1) variation in beliefs about ASD among English language proficient White (EP-W) mothers, English language proficient Latino (EPL) mothers, and limited English language proficient Latino (LEP-L) mothers of children with ASD; (2) variation in beliefs about ASD in the context of the child's ASD severity, among EP White mothers, EP Latino others, and LEP Latino mothers; and (3) potential links between maternal beliefs about ASD and children's current ASD treatment. This multi-site study included 305 English or Spanish-speaking parents of children with ASD, ages 2-10 years, who completed a survey about their beliefs about their child's ASD, their child's ASD severity, and treatments used by their children. Results showed that mothers in the EP-W, EP-L, and LEP-L groups differed in their beliefs about viewing ASD as a mystery. Only maternal views of ASD severity in the EP-W group were linked to their beliefs about ASD. Finally, maternal beliefs about ASD having major consequences on their child's life, and ASD being a mystery were strongly associated with a child's use of ASD intervention services. These findings provide new knowledge of how maternal beliefs about ASD vary in linguistically diverse groups, how a child's ASD severity may influence such beliefs, and how maternal beliefs correlate with the amount of therapy children with ASD receive. Future research should address how these beliefs or views are formed, what factors influence them, or whether they are malleable. Understanding parents' beliefs or views of having a child with ASD can potentially help us increase use of ASD intervention services in families of children with ASD.

Parents' Use of Complementary Health Approaches for Young Children with Autism Spectrum Disorder.

Knowledge of why parents use complementary health approaches (CHA) for children with autism spectrum disorder (ASD) is limited. We conducted a mixed methods study to better understand factors influencing parents' decision to use CHA for ASD. Parent-reported data about CHA use were collected on a probability sample of 352 young children with ASD in Denver, Colorado; Los Angeles, California; or Portland, Oregon. Follow-back interviews were conducted with 31 parents. CHA use was negatively associated with older child age and positively associated with parents' belief ASD has major consequences, living in Portland or Denver, and medication use. Nine themes help explain these results. Study findings may have utility for healthcare providers working with children with ASD and their families regarding CHA.

Parent disclosure of complementary health approaches used for children with autism spectrum disorder: Barriers and facilitators.

BACKGROUND AND OBJECTIVES: Complementary health approaches (CHA) are widely used among children with autism spectrum disorder (ASD). As part of shared treatment decision-making, healthcare providers are encouraged to discuss CHA with parents of children with ASD. Yet prior research suggests that parents often do not disclose CHA used for children, and their reasons for nondisclosure are poorly understood. We, therefore, aimed to identify barriers and facilitators to parent disclosure of CHA used for children with ASD. DESIGN AND SETTING: In-depth interviews were conducted with 31 parents who reported that they were currently using CHA for their child's ASD in Denver, Colorado or Portland, Oregon. RESULTS: We used content analysis to identify six main themes indicating that the following factors play a role in disclosure: parents' drive to optimize their child's health, parent self-efficacy discussing CHA with healthcare providers, parent beliefs about the effectiveness of CHA, parent-provider relationship quality, provider attitudes and knowledge regarding CHA and ASD, and visit characteristics. CONCLUSIONS: Study findings suggest that family and health system factors, together, influence parent disclosure of CHA used for children with ASD. Multifaceted intervention concurrently targeting the CHA-related knowledge, beliefs, and self-efficacy of parents whose children have been recently diagnosed with ASD, in addition to the CHA-related attitudes and knowledge of their healthcare providers may promote disclosure and shared treatment decision-making about the use of CHA.

Screening for Autism with the SRS and SCQ: Variations across Demographic, Developmental and Behavioral Factors in Preschool Children.

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.

Disparities in Diagnosis and Treatment of Autism in Latino and Non-Latino White Families.

OBJECTIVES: To compare barriers to autism spectrum disorder (ASD) diagnosis and current ASD-related service use among non-Latino white (NLW) families and Latino families with English proficiency (L-EP) or limited English proficiency (L-LEP). METHODS: We conducted a mixed-mode survey of families of children with confirmed ASD seen at specialty clinics in 3 United States cities. Bivariate and multivariate analyses compared barriers to ASD diagnosis, current service use, and unmet therapy need among NLW, L-EP, and L-LEP families. RESULTS: Overall, barriers to ASD diagnosis were prevalent: families (n = 352) experienced a mean of 8 of 15 barriers to ASD diagnosis. The most prevalent barriers overall were "stress of diagnostic process," "parent knowledge about ASD," and "understanding medical system." Compared with NLW families, L-LEP families were more likely to experience barriers related to knowledge about ASD and trust in providers. Children in L-LEP families also had fewer current therapy hours and more unmet therapy needs than children in NLW families. L-EP families' barriers and treatment services use profile was more similar to NLW than to L-LEP families. CONCLUSIONS: English proficiency was an important marker for barriers to ASD diagnosis and treatment in Latinos. Increasing ASD-related knowledge and provider trust may decrease disparities in the diagnosis and treatment of ASD among US Latinos.

Longitudinal change in the use of services in autism spectrum disorder: understanding the role of child characteristics, family demographics, and parent cognitions.

The aim of this study was to identify child characteristics, family demographics, and parent cognitions that may affect access to early intervention, special education, and related services. The sample included 70 families of young children with autism spectrum disorders. All parents were enrolled in a short education program, providing them with basic information and resources on advocating for a young child with autism spectrum disorders (Parent Advocacy Coaching). Longitudinal change in children's intervention program in the community was evaluated over a period of about 27 months, starting 12 months prior to enrollment in Parent Advocacy Coaching. Results revealed large individual differences in the intensity of children's individual and school-based services. Despite this variability, only two child characteristics (age, gender) emerged as independent predictors. In contrast, the intensity of children's intervention programs was independently predicted by a broad range of demographic characteristics, including parental education, child ethnicity and race, and family composition. Finally, even after child characteristics and family demographics were statistically controlled, results revealed associations between specific parental cognitions (parenting efficacy, understanding of child development) and the subsequent rate of change in the intensity of children's intervention programs. Implications for improving educational programs that aim to enhance parent advocacy are discussed.