The influence of loss to follow-up in autism screening research: Taking stock and moving forward.

BACKGROUND: How best to improve the early detection of autism spectrum disorder (ASD) is the subject of significant controversy. Some argue that universal ASD screeners are highly accurate, whereas others argue that evidence for this claim is insufficient. Relatedly, there is no clear consensus as to the optimal role of screening for making referral decisions for evaluation and treatment. Published screening research can meaningfully inform these questions-but only through careful consideration of children who do not complete diagnostic follow-up. METHODS: We developed two simulation models that re-analyze the results of a large-scale validation study of the M-CHAT-R/F by Robins et al. (2014, Pediatrics, 133, 37). Model #1 re-analyzes screener accuracy across six scenarios, each reflecting different assumptions regarding loss to follow-up. Model #2 builds on this by closely examining differential attrition at each point of the multi-step detection process. RESULTS: Estimates of sensitivity ranged from 40% to 94% across scenarios, demonstrating that estimates of accuracy depend on assumptions regarding the diagnostic status of children who were lost to follow-up. Across a range of plausible assumptions, data also suggest that children with undiagnosed ASD may be more likely to complete follow-up than children without ASD, highlighting the role of clinicians and caregivers in the detection process. CONCLUSIONS: Using simulation modeling as a quantitative method to examine potential bias in screening studies, analyses suggest that ASD screening tools may be less accurate than is often reported. Models also demonstrate the critical importance of every step in a detection process-including steps that determine whether children should complete an additional evaluation. We conclude that parent and clinician decision-making regarding follow-up may contribute more to detection than is widely assumed.

Verbal Responsiveness in Parents of Toddlers With and Without Autism During a Home Observation.

This study examined patterns of verbal responsiveness in parents of toddlers (Mage = 20 months) later identified with autism (n = 121), developmental delay (n = 46), or typical development (n = 44) during an hourlong home observation. Parent verbal responsiveness (PVR) was compared using MANOVA across groups and by child expressive language phase. Multiple regression analyses controlling for child age and maternal education were employed to examine the extent to which PVR predicted variance in concurrent child social communication and prospective language skills. Parents provided synchronous responses approximately 90% of the time. Parents of children with autism and developmental delay used smaller proportions of responses that added linguistic information (i.e., expansions and follow-in directives for language) than those of children with typical development. Parents of children in the preverbal phase were more likely, on average, to affirm their children's acts of intentional communication or provide a follow-in directive for action that did not necessitate a verbal response than to expand or elicit language. Regression results indicated that parental use of expansions and follow-in directives for language made significant contributions to child language outcomes. The patterns we observed may reflect parents' attunement to their child's developmental level. Responsiveness to a child's focus of attention is vital in the earlier stages of language learning; however, results point to the potential importance of parental expansions and follow-in directives for promoting language development across groups in this sample. Directions for intervention research targeting PVR and language skills in toddlers with autism and developmental delays are discussed.

Evaluating Teacher Language Within General and Special Education Classrooms Serving Elementary Students with Autism.

This study examined how teachers and paraprofessionals in 126 kindergarten-second grade general and special education classrooms talked with their 194 students with autism, and further, how individual student characteristics in language, autism symptoms, and social abilities influenced this talk. Using systematic observational methods and factor analysis, we identified a unidimensional model of teacher language for general and special education classrooms yet observed differences between the settings, with more language observed in special education classrooms-much of which included directives and close-ended questions. Students' receptive vocabulary explained a significant amount of variance in teacher language beyond its shared covariance with social impairment and problem behavior in general education classrooms but was non-significant within special education classrooms. Research implications are discussed.

Systematic Review: Recommendations for Rehabilitation in ASD and ID From Clinical Practice Guidelines.

OBJECTIVE: To identify and summarize clinical practice guidelines for autism spectrum disorder (ASD) and intellectual disability (ID) for the Package of Interventions for Rehabilitation for the World Health Organization (WHO). DATA SOURCES: Academic databases, Google Scholar, guideline databases, and professional society websites were searched using the general criteria "ASD/ID" AND "rehabilitation" AND "guideline," restricted to English-only guidelines. STUDY SELECTION: Work group members independently screened titles and abstracts (1952 ASD; 1027 ID) and excluded articles if not (1) a guideline; (2) about rehabilitation; (3) published since 2008; or (4) about ASD/ID. Full-text screening (29 ASD; 5 ID) involved 3 additional exclusion criteria: (1) contained conflict of interest; (2) lacked information on strength of recommendation; or (3) failed the Appraisal of Guidelines for Research and Evaluation II instrument. Six guidelines (4 ASD: 2 on youth, 1 on adults, 1 on all ages; 2 ID: 1 on challenging behaviors, 1 on mental health) resulted. DATA EXTRACTION: Work group members extracted 524 recommendations (386 ASD; 138 ID) from the guidelines including the level of evidence, diagnostic and age group, recommendation type (assessment, intervention, service), target, and valence. DATA SYNTHESIS: Of the 270 intervention recommendations (212 ASD; 58 ID), only 36 for ASD and 47 for ID were empirically based. Most comprised biomedical (23%), pharmacologic (29%), and psychosocial (21%) interventions for ASD and behavioral (14%), pharmacologic (29%), and psychological (14%) interventions for ID. Intervention recommendations primarily targeted coexisting conditions (56% ASD; 93% ID), whereas core symptoms received much less attention (26% ASD). CONCLUSIONS: Clinical practice guidelines reviewed for ASD and ID primarily contained recommendations based on expert opinion, with the plurality of recommendations relating to pharmacologic treatment. Vital next steps include identifying relevant interventions for inclusion in the WHO Package and continuing to conduct rigorous intervention research, particularly on core symptoms of these conditions, to extend recommendations for high-quality guidelines.

The Early Screening for Autism and Communication Disorders: Field-testing an autism-specific screening tool for children 12 to 36 months of age.

LAY ABSTRACT: There is a critical need for accurate screening tools for autism spectrum disorder in very young children so families can access tailored intervention services as early as possible. However, there are few screeners designed for children 18-24 months. Developing screeners that pick up on the signs of autism spectrum disorder in very young children has proved even more challenging. In this study, we examined a new autism-specific parent-report screening tool, the Early Screening for Autism and Communication Disorders for children between 12 and 36 months of age. Field-testing was done in five sites with 471 children screened for communication delays in primary care or referred for familial risk or concern for autism spectrum disorder. The Early Screening for Autism and Communication Disorders was tested in three age groups: 12-17, 18-23, and 24-36 months. A best-estimate diagnosis of autism spectrum disorder, developmental delay, or typical development was made. Analyses examined all 46 items and identified 30 items that best discriminated autism spectrum disorder from the non-spectrum groups. Cutoffs were established for each age group with good sensitivity and specificity. Results provide preliminary support for the accuracy of the Early Screening for Autism and Communication Disorders as an autism-specific screener in children 12-36 months with elevated risk of communication delay or autism spectrum disorder.

Anxiety, Depression, and the Interpersonal Theory of Suicide in a Community Sample of Adults with Autism Spectrum Disorder.

The present study examines occurrence of depression, anxiety, and suicidality in adults with autism spectrum disorder (ASD), relationships between social difficulties and mental health, and application of the Interpersonal Theory of Suicide in this population. Ninety-eight adults with ASD completed an online survey. Data were analyzed using bivariate correlations, independent samples t-tests, and simple mediational analyses. A substantial proportion reported a lifetime history of anxiety (63%), depression (55%), and suicide attempts (19%), as well as recent suicidal ideation (12%). Social difficulty was associated with higher psychiatric concerns. Thwarted belongingness and perceived burdensomeness were associated with social dissatisfaction, current suicidal ideation, and history of depression. Results suggest the need for widespread screening and intervention services for co-occurring psychiatric conditions in this population.

Exploring message framing to engage parents in early screening for autism spectrum disorder.

OBJECTIVE: With the average age of diagnosis of autism hovering between 4 and 5 years of age, many children do not receive critical early intervention. Health information messages may be useful for increasing parents' understanding of the importance of early autism screening. METHODS: Messages promoting autism screening were presented to 282 parents in a 2 (message frame: gain, loss) x 3 (evidence type: narrative, statistical, and hybrid), online, between-participants factorial design. Participants' involvement, affective responses, perceived threat to behavioral freedom, attitudes, and intentions to discuss screening with a healthcare provider were analyzed. RESULTS: Loss-framed messages that included a hybrid of first-person narrative and statistical evidence were related to favorable ratings for most outcomes. Levels of perceived threat to behavioral freedom partially mediated involvement and attitudes, in a negative direction, for loss-framed narrative messages. CONCLUSION: Results of this preliminary study supported the inclusion of both evidence types in messages developed to encourage parents to engage in early screening for autism, and partially supported focusing these messages on the potential costs of not screening. PRACTICE IMPLICATIONS: Effective use of messaging with parents could help to increase knowledge and facilitate shared decision-making with health care providers to engage in early screening for autism.

Psychometric analysis of the repetitive behavior scale-revised using confirmatory factor analysis in children with autism.

Research examining restricted and repetitive patterns of behavior or interests (RRB) in autism spectrum disorder (ASD) has increased our understanding of its contribution to diagnosis and its role in development. Advances in our knowledge of RRB are hindered by the inconsistencies in how RRB is measured. The present study examined the factor structure of the Repetitive Behavior Scale-Revised (RBS-R) in a sample of 350 children with ASD ages 2-9. Confirmatory factor analysis designed for items with categorical response types was implemented to examine six proposed structural models. The five-factor model demonstrated the most parsimonious fit based on common overall fit indices that was further supported by examination of local model fit indicators, though, the four- and six-factor models evidenced adequate-to-good fit as well. Examination of RRB factor score approaches indicated only minor differences between summed item subscale scores and extracted factor scores with regard to associations with diagnostic measures. All RRB subtypes demonstrated significant associations with cognitive functioning and adaptive behavior. Implications for future research validating the RBS-R as a more extensive clinical measure of RRB in ASD are discussed. Autism Res 2019, 12: 1399-1410. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Repetitive behaviors are one of the two main symptoms of autism spectrum disorder (ASD). To better understand the role of repetitive behaviors, we must establish effective ways of measuring them. This study assessed the measurement qualities of the Repetitive Behavior Scale-Revised (RBS-R) in a sample of 350 children with ASD ages 2-9. We found that the RBS-R measures multiple types of repetitive behaviors and that these behaviors are related to thinking ability and independence.

Cluster randomized trial of the classroom SCERTS intervention for elementary students with autism spectrum disorder.

OBJECTIVE: This cluster randomized trial (CRT) evaluated the efficacy of the Classroom Social, Communication, Emotional Regulation, and Transactional Support (SCERTS) Intervention (CSI) compared with usual school-based education with autism training modules (ATM). METHOD: Sixty schools with 197 students with autism spectrum disorder (ASD) in 129 classrooms were randomly assigned to CSI or ATM. Mean student age was 6.79 years (SD 1.05) and 81.2% were male. CSI teachers were trained on the model and provided coaching throughout the school year to assist with implementation. A CRT, with students nested within general and special education classrooms nested within schools, was used to evaluate student outcomes. RESULTS: The CSI group showed significantly better outcomes than the ATM group on observed measures of classroom active engagement with respect to social interaction. The CSI group also had significantly better outcomes on measures of adaptive communication, social skills, and executive functioning with Cohen's d effect sizes ranging from 0.31 to 0.45. CONCLUSION: These findings support the preliminary efficacy of CSI, a classroom-based, teacher-implemented intervention for improving active engagement, adaptive communication, social skills, executive functioning, and problem behavior within a heterogeneous sample of students with ASD. This makes a significant contribution to the literature by demonstrating efficacy of a classroom-based teacher-implemented intervention with a heterogeneous group of students with ASD using both observed and reported measures. (PsycINFO Database Record