Parental Perceptions of Autism Spectrum Disorder in Latinx and Black Sociocultural Contexts: A Systematic Review

Parents of children with autism spectrum disorder (ASD) face challenges in accessing diagnostic and treatment services; these challenges vary by race, ethnicity, and culture. This systematic review examines parental perceptions of ASD within Latinx and Black American communities. Findings indicate that interconnections with family and religious groups promoted positive coping and describe positive impacts of having a child with ASD. Relative to White families, community members reported reduced access to information and more inaccurate beliefs about ASD, higher levels of ASD-related stigma, and more negative experiences with healthcare providers, which serve to exacerbate healthcare disparities. Conclusions are limited by an underrepresentation of minority groups in research. We call for efforts to address the specific needs of racial and ethnic minorities.

Quality of Educational Programs for Elementary School-Age Students With Autism

The purpose of this study was to assess the quality of educational programs for school-aged children with autism in the United States. Investigators completed the Autism Program Environment Quality Rating Systems-Preschool/Elementary (APERS-PE) in 60 elementary schools enrolling children with autism. The mean total rating scores were near the midpoint rating, indicating schools were providing educational program environments classified as adequate but not of high quality. Domains of the APERS-PE reflecting structural quality tended to be significantly above average and domains reflecting process quality tended to be significantly below average. With a few exceptions, inclusive and special education program did not differ significantly in total program quality ratings and reflected the same pattern of domain quality ratings.

Daily Living Skills in Adolescent and Young Adult Males With Fragile X Syndrome

By adulthood, most males with fragile X syndrome (FXS) require support to navigate day-to-day settings. The present study cross-sectionally: (1) characterized the profile of daily living skills in males with FXS and (2) examined associated participant characteristics (i.e., fragile X mental retardation protein [FMRP] expression, nonverbal cognition, language, autism symptomatology, and anxiety symptomatology) using the Waisman-Activities of Daily Living questionnaire. Males with FXS (n = 57, ages 15–23 years) needed more help/support in the areas of domestic and community daily livings skills, than in the area of personal daily living skills. Significant associations were observed between reduced daily living skills and lower nonverbal cognition, receptive language, expressive language, and increased autism symptomatology. Receptive language emerged as the strongest unique predictor of daily living skill performance.

Anxiety in Angelman Syndrome

Angelman Syndrome (AS) is a neurodevelopmental disorder most commonly caused by the impaired expression of the maternal UBE3A gene on chromosome 15. Though anxiety has been identified as a frequently present characteristic in AS, there are limited studies examining anxiety in this population. Studies of anxiety in other neurodevelopmental disorders have found disorder specific symptoms of anxiety and age specific displays of anxiety symptoms. However, there is a consistent challenge in identifying anxiety in people with neurodevelopmental disorders given the lack of measurement instruments specifically designed for this population. Given the limited information about AS and anxiety, the aims of the current project were to (a) examine symptoms of anxiety in children with AS and (b) determine the correlates of anxiety in children with AS. Participants included 42 adult caregivers of youth with AS in the AS Natural History study who completed the Developmental Behavior Checklist (DBC). The results found that 26% of the sample demonstrated elevated symptoms of anxiety and established a relationship between elevated anxiety in youth with AS and higher levels of irritability, hyperactivity, self-absorbed behaviors, and disruptive/antisocial behaviors. Findings from this research provide a foundation for tailoring evidence-based assessments and treatments for youth with AS and anxiety.

Narrative Analysis in Adolescents With Fragile X Syndrome

This study analyzed narratives of male and female adolescents with fragile X syndrome (FXS). The impact of structural language, cognition and autism symptomatology on narrative skills and the association between narratives and literacy were examined. Narratives from 32 adolescents with FXS (24 males, 8 females) were analyzed for macrostructure. Relationships between narrative macrostructure, language scores, cognitive scores, Childhood Autism Rating Scale-Second Edition scores and literacy skills were examined. Males produced more simplistic narratives, whereas the females' narratives were more complex. Language scores predicted narrative scores above and beyond nonverbal cognitive skills and autism symptomatology. Narrative scores correlated with literacy scores. Narrative skills in FXS are predicted by language skills and are correlated with literacy skills. Investigation into narrative interventions in FXS is needed.

Measurement of Sleep Behaviors in Chromosome 15q11.2-13.1 Duplication (Dup15q Syndrome)

Duplication of chromosome 15q11.2-q13.1 (dup15q syndrome) results in hypotonia, intellectual disability (ID), and autism symptomatology. Clinical electroencephalography has shown abnormal sleep physiology, but no studies have characterized sleep behaviors. The present study used the Children's Sleep Habits Questionnaire (CSHQ) in 42 people with dup15q syndrome to examine the clinical utility of this questionnaire and quantify behavioral sleep patterns in dup15q syndrome. Individuals with fully completed forms (56%) had higher cognitive abilities than those with partially completed forms. Overall, caregivers indicated a high rate of sleep disturbance, though ratings differed by epilepsy status. Results suggest that clinicians should use caution when using standardized questionnaires and consider epilepsy status when screening for sleep problems in dup15q syndrome.

Using Machine Learning to Predict Patterns of Employment and Day Program Participation

In this article, we demonstrate the potential of machine learning approaches as inductive analytic tools for expanding our current evidence base for policy making and practice that affects people with intellectual and developmental disabilities (IDD). Using data from the National Core Indicators In-Person Survey (NCI-IPS), a nationally validated annual survey of more than 20,000 nationally representative people with IDD, we fit a series of classification tree and random forest models to predict individuals' employment status and day activity participation as a function of their responses to all other items on the 2017–2018 NCI-IPS. The most accurate model, a random forest classifier, predicted employment outcomes of adults with IDD with an accuracy of 89 percent on the testing sample, and 80 percent on the holdout sample. The most important variable in this prediction was whether or not community employment was a goal in this person's service plan. These results suggest the potential machine learning tools to examine other valued outcomes used in evidence-based policy making to support people with IDD.