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Parents of children with autism spectrum disorder (ASD) face higher levels of caregiver strain compared to parents of children with other disabilities. This study examined child clinical features that predict high levels of caregiver strain for 374 parents of children with ASD. Caregiver strain was measured using the Caregiver Strain Questionnaire (CGSQ) objective, subjective internalized, and subjective externalized subscales. Confirmatory factor analysis indicated an acceptable fit for the original CGSQ three-factor solution. The strongest child predictors across CGSQ subscales were: disruptive behavior for objective strain, autism severity and disruptive behavior for subjective internalized strain, and oppositional behavior and hyperactivity for subjective externalized strain. Individualized interventions that attend to specific elements of parental strain may reduce strain and improve family wellbeing.

Purpose: Parents of children on the autism spectrum enrolled in early intervention often receive coaching to address both social communication and disruptive behavior, which are the two most frequently reported concerns by parents. Intervention techniques for both are often recommended to be implemented across daily routines and require the parents to learn new ways of interacting with their child. A sequential approach to instructing parents in these key intervention targets may reduce burden and increase adherence. Method: This multiple-baseline design pilot study included three mother-child dyads who received instruction in a disruptive behavior intervention immediately following a social communication intervention. Maternal maintenance of social communication strategies and child disruptive behaviors were measured during probes throughout the study. Results: Results indicate that although mothers readily learned to implement the techniques, fidelity of implementing social communication strategies declined after introduction of the positive behavior support strategies. Conclusions: A sequenced approach to parent-mediated intervention is feasible and acceptable. Clinical implications and future directions are discussed.

Teachers endorse disruptive behavior as a considerable concern for autistic students, which is compounded by the lack of adequate resources for behavioral intervention planning in the classroom. The RUBI program is an evidence-based, low-intensity manualized intervention, initially developed for parents of autistic children ages 3-14 and co-occurring disruptive behavior. Utilizing the Discover, Design/Build, Test (DDBT) framework, which combines user-centered design and implementation science, RUBI intervention content was collaboratively and iteratively redesigned with elementary school stakeholders (40 school staff from 28 schools) to ensure the feasibility, acceptability, and appropriateness of the redesigned intervention, RUBI in Educational Settings (RUBIES). Iterative quantitative and qualitative methods were conducted with stakeholders to identify targets for RUBI redesign. Conventional content analysis was used to code qualitative data and identify usability issues. Recommendations were provided for modifications to RUBI sessions to address the needs of the school context and end-users to develop RUBIES. Feasibility scores improved following the redesign. The use of the DDBT framework to redesign the RUBI intervention may promote greater usefulness and usability in school contexts.

The COVID-19 pandemic, and associated social distancing mandates, has placed significant limitations on in-person health services, requiring creative solutions for supporting clinicians engaged in the diagnosis of autism spectrum disorder (ASD). This report describes the five virtual instruments available at the time of manuscript development for use by experienced clinicians making diagnostic determinations of ASD for toddlers across the 12- to 36-months age range. We focus on synchronous virtual assessments in which clinicians guide the child's caregiver through a range of assessment activities and observe spontaneous and elicited behaviors. Assessments are compared on dimensions of targeted behavioral domains, specific activities and presses employed, scoring approaches, and other key logistical considerations to guide instrument selection for use in varied clinical and research contexts.

ObjectiveWe explored patterns of concomitant psychiatric disorders in a large sample of treatment-seeking children and adolescents with autism spectrum disorder (ASD).MethodsParticipants were 658 children with ASD (age 3-17 years; mean = 7.2 years) in one of six federally-funded multisite randomized clinical trials (RCT) between 1999 and 2014. All children were referred for hyperactivity or irritability. Study designs varied, but all used the Child and Adolescent Symptom Inventory or Early Childhood Inventory to assess Attention Deficit Hyperactivity Disorder (ADHD), Oppositional-Defiant Disorder (ODD), Conduct Disorder (CD), Anxiety Disorders, and Mood Disorders. In addition, several measures in common were used to assess demographic and clinical characteristics.ResultsOf the 658 children, 73% were Caucasian and 59% had an IQ >70. The rates of concomitant disorders across studies were: ADHD 81%, ODD 46%, CD 12%, any anxiety disorder 42%, and any mood disorder 8%. Two or more psychiatric disorders were identified in 66% of the sample. Of those who met criteria for ADHD, 50% also met criteria for ODD and 46% for any anxiety disorder. Associations between types of concomitant disorders and a number of demographic and clinical characteristics are presented.ConclusionIn this well-characterized sample of treatment-seeking children with ASD, rates of concomitant psychiatric disorders were high and the presence of two or more co-occurring disorders was common. Findings highlight the importance of improving diagnostic practice in ASD and understanding possible mechanisms of comorbidity.

Racial/ethnic minoritized youth are underrepresented in autism research. Documented inequities in accessibility to and utilization of autism-specific services highlight the importance of better understanding for whom and under what conditions autism evidence-based practices (EBPs) work. This report examines the race, ethnicity, sex, and gender of school-based autism research participants (e.g. educators, students), given schools are the most common setting in which autistic youth receive services in the United States (US). Data across 14 years of research, for eight school-based studies in the US, showed that while most teachers identified as non-Hispanic White, over half of the youth sampled identified as being of a racial/ethnic minoritized background. Findings provide insights into who is being served in school-based autism research and how school partnerships may increase diversity among autism research participants and offer a means of reducing existing barriers. Researchers should continue to utilize schools to reach diverse populations and consider how demographic characteristics of school staff affect EBP effectiveness. Researchers should continue to better understand the impact of the EBP, provider, and setting on outcomes. Schools are the main provider of behavioral health services in the United States (US). Conducting research in schools may help increase access for autistic youth, but there is limited research about who participates in school-based autism research. The researchers examined data spanning 14 years of participation in school-based autism research. All data were collected in the US. Researchers found that in this sample, more than half of the youth identified as racial/ethnic minoritized (REM) youth. However, demographics of sampled youth were significantly different than expected, based on publicly available school-based population demographics. More youth identified as White non-Hispanic than would be expected in those schools. Majority of the sampled educators also identified as White non-Hispanic. High percentages of autistic REM youth suggest school-based autism research may be an effective way of providing services to more diverse populations. However, sampled schools were also not representative of a US national sample, with sampled schools having fewer White non-Hispanic youth than would be expected from US national statistics. Complexity around representation of schools sampled and demographics of service environments suggests a need for more research. [ABSTRACT FROM AUTHOR]

Delivery of interventions in a group format is a potential solution to limited access to specialized services for children with autism spectrum disorder (ASD). We conducted an open feasibility trial of group-based RUBI parent training in 18 children (mean age 6.12 ± 1.95 years) with ASD and disruptive behaviors. Parents participated in one of five groups (3 to 4 parents per group). Eighty-three percent of participants completed the 24-week trial. Session attendance was moderate (74.2%). All parents indicated that they would recommend the treatment. Therapists demonstrated 98.8% fidelity to the manual. Eleven of 18 (64.7%) participants were rated as much/very much improved by an independent evaluator at Week 24. Preliminary efficacy findings justify further study.

Anxiety often co-occurs with autism spectrum disorder, yet there are few valid and reliable instruments for measuring anxiety in youth with autism spectrum disorder. This article describes the modification of the Pediatric Anxiety Rating Scale for youth with autism spectrum disorder and systematic psychometric evaluation in a well-characterized sample of 116 youth (age: 5-17 years) with autism spectrum disorder and a range of anxiety symptoms. The clinician-administered-Pediatric Anxiety Rating Scale for youth with autism spectrum disorder was modified with input from parents of children with autism spectrum disorder and an expert panel. Unlike many other anxiety measures, the Pediatric Anxiety Rating Scale for youth with autism spectrum disorder is more focused on behavioral manifestations of anxiety versus verbal expression. Results provide preliminary support for the psychometric properties of the Pediatric Anxiety Rating Scale for youth with autism spectrum disorder. The internal consistency of the Pediatric Anxiety Rating Scale for youth with autism spectrum disorder was 0.90. The Pediatric Anxiety Rating Scale for youth with autism spectrum disorder was strongly correlated with parent-report anxiety measures (rs=0.62-0.68), supporting convergent validity. In support of divergent validity, correlations between the Pediatric Anxiety Rating Scale for youth with autism spectrum disorder and parent ratings of autism spectrum disorder symptoms, social withdrawal, stereotypy, hyperactivity, inappropriate speech, and repetitive behaviors were low (rs=0.13-0.32). The Pediatric Anxiety Rating Scale for youth with autism spectrum disorder was moderately correlated with parent-reported irritability (r=0.52). The Pediatric Anxiety Rating Scale for youth with autism spectrum disorder showed good test-retest reliability (intraclass correlation coefficient=0.75-0.82) and inter-rater reliability (ICCs=0.70-0.92). Overall, results support the use of the Pediatric Anxiety Rating Scale for youth with autism spectrum disorder for assessing anxiety in youth with autism spectrum disorder.

Anxiety is a common and impairing problem in children with autism spectrum disorder, but little is known about it in preschool children with autism spectrum disorder. This article reports on the characteristics of anxiety symptoms in young children with autism spectrum disorder using a parent-completed rating scale. One hundred and eighty children (age 3-7 years) participated in a clinical trial of parent training for disruptive behaviors. Anxiety was measured as part of pre-treatment subject characterization with 16 items from the Early Childhood Inventory, a parent-completed scale on child psychiatric symptoms. Parents also completed other measures of behavioral problems. Sixty-seven percent of children were rated by their parents as having two or more clinically significant symptoms of anxiety. There were no differences in the Early Childhood Inventory anxiety severity scores of children with IQ < 70 and those with [greater than or equal to] 70. Higher levels of anxiety were associated with severity of oppositional defiant behavior and social disability. Anxiety symptoms are common in preschoolers with autism spectrum disorder. These findings are consistent with earlier work in school-age children with autism spectrum disorder. There were no differences in anxiety between children with IQ below 70 and those with IQ of 70 and above. Social withdrawal and oppositional behavior were associated with anxiety in young children with autism spectrum disorder.

We report on parent outcomes from a randomized clinical trial of parent training (PT) versus psychoeducation (PEP) in 180 children with autism spectrum disorder (ASD) and disruptive behavior. We compare the impact of PT and PEP on parent outcomes: Parenting Stress Index (PSI), Parent Sense of Competence (PSOC), and Caregiver Strain Questionnaire (CGSQ). Mixed-effects linear models evaluated differences at weeks 12 and 24, controlling for baseline scores. Parents in PT reported greater improvement than PEP on the PSOC (ES = 0.34), CGSQ (ES = 0.50), and difficult child subdomain of the PSI (ES = 0.44). This is the largest trial assessing PT in ASD on parent outcomes. PT reduces disruptive behavior in children, and improves parental competence while reducing parental stress and parental strain.

Telehealth is a potential solution to limited access to specialized services for children with autism spectrum disorder (ASD) in rural areas. We conducted a feasibility trial of parent training with children ages 3-8 with ASD and disruptive behavior from rural communities. Fourteen children (mean age 5.8 ± 1.7) from four telehealth sites enrolled. Thirteen families (92.9%) completed treatment, with 91.6% of core sessions attended. Therapists attained 98% fidelity to the manual and 93% of expected outcome measures were collected at week 24. Eleven of 14 (78.6%) participants were rated as much/very much improved. Parent training via telehealth was acceptable to parents and treatment could be delivered reliably by therapists. Preliminary efficacy findings suggests further study is justified.

ObjectiveRepetitive behaviors in autism spectrum disorders (ASD) range from motor stereotypy to immersion in restricted interests. The modified Children's Yale-Brown Obsessive Compulsive Scale for children with autism spectrum disorder (CYBOCS-ASD) includes a Symptom Checklist (behavior present or absent) and 5 severity scales (Time Spent, Interference, Distress, Resistance and Control).MethodWe assembled CYBOCS-ASD data from 3 Research Units on Pediatric Psychopharmacology Autism Network trials to explore the component structure of repetitive behaviors in children with ASD. Raters trained to reliability conducted the CYBOCS-ASD in 272 medication-free subjects. Fifteen Symptom Checklist items were endorsed for less than 5% of the sample and were dropped. Principal component analysis was used to explore the clustering of 23 checklist items. Component scores computed for each subject were correlated with other measures. We also examined the distribution of severity scales.ResultsThe subjects (229 boys and 43 girls; mean age = 7.8 ± 2.6 years) met criteria for an ASD; half were intellectually disabled. The PCA resulted in a 5-component solution to classify repetitive behaviors (34.4% of the variance): hoarding and ritualistic behavior; sensory and arranging behavior; sameness and self-injurious behavior; stereotypy; restricted interests. Sensory and arranging and stereotypy components were associated with lower adaptive functioning (Pearson r = 0.2-0.3; p < .003). The resistance scale showed little variation, with more than 60% of the sample with the highest score.ConclusionsRarely endorsed items can be dropped from the Checklist. The resistance item does not appear to be relevant for children with ASD.

Caregivers of adults on the autism spectrum report having limited access to resources that aid in supporting their child and helping them lead more independent lives. There is a need for interventions designed to teach caregivers strategies that address challenging behaviors, as well as promote independence. Using a case study design, we evaluated the preliminary feasibility and acceptability of Research Units in Behavioral Intervention (RUBI) with caregivers of three adults on the autism spectrum. Outcomes support preliminary feasibility and acceptability, as indicated by low attrition (0%) and high adherence to the RUBI manual (mean adherence = 91%). Following intervention, all adults on the autism spectrum demonstrated decreased levels of challenging behaviors and increased independence. The results of this study provide insight on next steps for investigation, including avenues for RUBI adaptation when delivered to adults on the autism spectrum and their families. [ABSTRACT FROM AUTHOR]

Anxiety is common in youth with autism spectrum disorder. Despite this common co-occurrence, studies targeting anxiety in this population are hindered by the under-developed state of measures in youth with autism spectrum disorder. Content validity (the extent to which an instrument measures the domain of interest) and an instrument's relevance to the patient population are key components of measurement development. This article describes the application of qualitative research methods in the initial development of a parent-rated instrument of anxiety symptoms in youth with autism spectrum disorder. Overall, 48 parents of 45 children (aged 3-17 years) with autism spectrum disorder and at least mild anxiety participated in one of six focus groups at two sites (three groups per site). Systematic coding of the focus group transcripts identified broad themes reflecting the situations and events that trigger anxiety in children with autism spectrum disorder, the behavioral manifestations of anxiety in children with autism spectrum disorder, the parent and the child's own response to anxiety, and broad behavioral patterns that could be associated with anxiety. From the focus group data, investigators generated 52 candidate items for a parent-rating of anxiety in youth with autism spectrum disorder. This report provides a detailed description of these early steps in developing a patient-oriented outcome measure.

Previously, we adapted the Home Situations Questionnaire to measure behavioral non-compliance in everyday settings in children with pervasive developmental disorders. In this study, we further revised this instrument for use in autism spectrum disorder and examined its psychometric properties (referred to as the Home Situations Questionnaire-Autism Spectrum Disorder). To cover a broader range of situations and improve reliability, we prepared seven new items describing situations in which children with autism spectrum disorder might display non-compliance. Parents completed ratings of 242 children with autism spectrum disorder with accompanying disruptive behaviors (ages 4-14 years) participating in one of two randomized clinical trials. Results from an exploratory factor analysis indicated that the Home Situations Questionnaire-Autism Spectrum Disorder consists of two 12-item factors: Socially Inflexible (a = 0.84) and Demand Specific (a = 0.89). One-to-two-week test-retest reliability was statistically significant for all scored items and also for subscale totals. The pattern of correspondence between the Home Situations Questionnaire-Autism Spectrum Disorder and parent-rated problem behavior, clinician-rated repetitive behavior, adaptive behavior, and IQ provided evidence for concurrent and divergent validity of the Home Situations Questionnaire-Autism Spectrum Disorder. Overall, the results suggest that the Home Situations Questionnaire-Autism Spectrum Disorder is an adequate measure for assessing non-compliance in a variety of situations in this population, and use of its two subscales will likely provide a more refined interpretation of ratings.

Guidance on effective interventions for disruptive behavior in young children with autism spectrum disorders (ASDs) is limited. We present feasibility and initial efficacy data on a structured parent training program for 16 children (ages 3-6) with ASD and disruptive behavior. The 6-month intervention included 11 Core and up to 2 Optional sessions. The program was acceptable to parents as evidenced by an attendance rate of 84% for Core sessions. Fourteen of 16 families completed the treatment. An independent clinician rated 14 of 16 subjects as much improved or very much improved at Week 24. Using last observation carried forward, the parent-rated Aberrant Behavior Checklist-Irritability subscale decreased 54% from 16.00 (SD = 9.21) to 7.38 (SD = 6.15).