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Gastrointestinal distress is a prevalent issue in the autism spectrum disorder community, with implications for the person living with autism spectrum disorder and their families. However, the experiences of families caring for a child with co-occurring autism spectrum disorder and gastrointestinal symptoms have not been explored to date. We conducted one-on-one semi-structured interviews with 12 parents of children with co-occurring autism spectrum disorder and gastrointestinal symptoms. Using an inductive analysis approach, drawing on phenomenology, we identified four major themes across interviews. First, parents reported that their child had difficulty verbally communicating the presence of gastrointestinal symptoms, leading parents to rely on bodily signs and non-verbal behaviors to recognize when their child was experiencing gastrointestinal distress (Theme 1). Next, gastrointestinal issues impacted the child's well-being and the ability to participate in and fully engage in activities (Theme 2), and the family's well-being (Theme 3). Finally, parents often experienced challenges with seeking accessible and quality healthcare for their child's gastrointestinal problems (Theme 4). These findings elucidate the incredible toll that gastrointestinal symptoms have on the overall wellness of children with autism spectrum disorder and their families.

The purpose of this mixed-method study was to examine racial differences in parental beliefs and concern about autism spectrum disorder (ASD) versus clinical judgment. The sample included 489 children with ASD undergoing their first ASD evaluation. Parent belief that their child had ASD was highest among parents of White children. White children whose parents believed the child had ASD had lower ASD severity. Parents of Black/African American and Hispanic children were more likely to report communication concerns than parents of White children. Parental concern about social communication was related to higher ASD severity for Hispanic children. Implications for diagnostic processes are discussed.

Introduction: Screening for dementia among individuals with ID is important to identify individuals in need of care and support. The objective of this pilot study was to identify obstacles associated with screening and assessment of dementia among older adults with ID in a crisis-prone population. Method: The Early Detection Screen for Dementia (EDSD) was administered to eligible enrollees ages 50 years and older within the START (Systemic, Therapeutic, Assessment, Resources, and Treatment) program. Focus groups were carried out to understand the barriers to screening and diagnosis of dementia. Results: Of the 95 eligible enrollees, 63 participants had dementia screening tools completed. Obstacles identified through focus groups included difficulty differentiating changes from baseline function, competing priorities in this crisis-prone population, lack of access to providers, and an unclear understanding of the benefit or purpose of screening among some caregivers. START coordinators noted that the EDSD provided a helpful way to collect information and document changes in the enrollee's functioning. Conclusions: The EDSD may be helpful for capturing potential dementia-associated changes overtime in crisis-prone adults with ID, though obstacles remain to the access of further evaluation for dementia.

Background: Children and youth with autism spectrum disorder have significant, multi-system needs that require supports, such as the autism waiver (AW) service delivery model. This study aimed to identify and describe characteristics of the AW, define obstacles and strengths in the provision of adequate services and provide recommendations for improving overall effectiveness. Methods: This mixed-methods exploratory study used an electronic survey to gain information and perceptions of AW provider agency directors (n = 27) and service coordinators (n = 30). Results: The key barriers reported were the shortage of qualified staff, inadequate staff training, complexity of cases or symptom severity of clients and lack of communication at multiple levels throughout the agency as well as with parents. Conclusions: Recommendations include reinforcing the workforce through higher salaries, greater training and communication interventions. These strategies may reduce staff turnover and shortage, lighten the caseload, reduce the waitlist period and improve the effectiveness and responsiveness of AW services.

A reliable autism spectrum disorder (ASD) diagnosis can occur as early as 18 months; however, the average age at diagnosis in the United States is over 2 years later. While there are numerous well-known barriers to seeking an ASD diagnosis, no research has examined if separation between a child's biological parents affects timing of ASD diagnosis for their child. Data for this study were obtained from 561 children (M age = 5.4 years, SD = 3.9 years) referred to an urban, outpatient ASD specialty clinic for their first ASD evaluation. Biological parents self-reported their relationship status during the evaluation, which was then categorized as either "together" (married or living together but not married) or "not together" (separated, divorced, or never married). An inverse-probability of exposure weighted linear regression model, which adjusted for 16 different child, family, and sociodemographic variables, was utilized to assess differences in child age of ASD diagnosis between groups. At the time of diagnosis, most children's biological parents were together (69%) versus not together (31%). In the fully adjusted model, children of parents who were together were diagnosed 1.4 years earlier than those who were not together (p < 0.001). Strategies for supporting these families and reducing age disparities are indicated.

Purpose: Social communication or pragmatic skills are continuously distributed in the general population. Impairment in these skills is associated with two clinical disorders, autism spectrum disorder (ASD) and social (pragmatic) communication disorder. Such impairment can impact a child's peer acceptance, school performance, and current and later mental health. Valid, reliable, examiner-rated observational measures of social communication from a semistructured language sample are needed to detect social communication impairment. We evaluated the psychometrics of an examiner-rated measure of social (pragmatic) communication, the Pragmatic Rating Scale--School Age (PRS-SA). Method: The analytic sample consisted of 130 children, ages 7-12 years, from five mutually exclusive groups--ASD (n = 25), language concern (LC; n = 5), ASD + LC (n = 10), social communication impairment only (n = 22), and typically developing (TD; n = 68). All children received language and autism assessments. The PRS-SA was rated separately using video-recorded communication samples from the Autism Diagnostic Observation Schedule. Assessment data were employed to evaluate the psychometrics of the PRS-SA. Analysis of covariance models were used to assess whether the PRS-SA would detect differences in social communication functioning across the five groups. Results: The PRS-SA demonstrated strong internal reliability, concurrent validity, and interrater reliability. PRS-SA scores were significantly higher in all groups compared to the TD group and differed significantly in most pairwise comparisons; the ASD + LC group had the highest (more atypical) scores. Conclusions: The PRS-SA shows promise as a measure of social communication skills in school-age verbally fluent children with a range of social and language abilities. More research is needed with a larger sample, including a wider age range and geographical diversity, to replicate findings.

Purpose: Cross-informant ratings are considered best practice for assessing children with autism spectrum disorder (ASD). However, informant disagreement often occurs, which can pose significant challenges to various aspects of clinical services. This study explored the degree of parent and speech-language pathologist (SLP) agreement on ratings of challenging behaviors and social communication skills in preschool children with ASD. Method: Fifty-eight informant ratings of challenging behaviors and social communication skills were collected from parents and SLPs on the same 29 preschool children with ASD (M = 49.93 months, SD = 11.67 months) using the Pervasive Developmental Disorder Behavior Inventory. Parent versus SLP group rating comparisons were assessed with paired t tests and Cohen's d effect sizes. Intraclass correlation coefficients were calculated to examine interrater reliability between individual parent and SLP ratings. Bland-Altman plots were generated to evaluate informant agreement across the entire range of Pervasive Developmental Disorder Behavior Inventory composite scores. Results: Group comparisons indicated that parents rated arousal regulation problems as more severe than SLPs, with no other group differences observed. Parents and SLPs exhibited poor agreement on ratings of challenging behaviors; however, moderate to good agreement was observed for social communication ratings. Conclusions: These results highlight the importance of including parents in the assessment and treatment planning process for preschool children with ASD, as parents may report key behavioral concerns that clinicians may not otherwise observe. Understanding behaviors that may be more prone to informant disagreement has implications for promoting a shared understanding of behavioral concerns and treatment targets between parents and clinicians.

Measurement invariance of the Wechsler Intelligence Scale for Children, Fifth Edition (WISC-V) 10 subtest primary battery was evaluated across sex, age (6-8, 9-11, 12-14, and 15-16 year-olds), and three diagnostic (attention-deficit/hyperactivity disorder, anxiety, and encephalopathy) groups within a large clinical sample (N = 5359) referred to a children's specialty hospital. Competing models were tested using confirmatory factor analysis (CFA), and a five-factor oblique model corresponding to the publisher's hypothesized first-order measurement model (e.g., verbal comprehension, fluid reasoning, visual-spatial, working memory, and processing speed) was found to have the best model fit. Multigroup CFA was subsequently used to evaluate progressively more restrictive constraints on the measurement model. Results indicated that full metric invariance was attained across the three groups studied. Full scalar invariance was attained for sex and diagnostic groups. Partial scalar invariance was attained for age-group. The results of this study provide support for the first-order scoring structure of the five WISC-V factors in the 10 subtest primary battery with this large clinical sample.

Introduction: Individuals with Down syndrome (DS) and IDD have lower psychiatric disorders rates than other individuals with IDD, and more information is needed about possible unique mental health needs of this group. Method: De-identified intake data for individuals with IDD, 101 with DS (mean age 27) and 4,366 without DS (mean age 25) served in START, a tertiary care mental health crisis response program, were reviewed. Behavioral health, and medical factors were investigated using Chi-squared or t-tests at p < 0.05, and logistic/linear regression models. Results: People with DS referred for behavioral health conditions were less likely than counterparts with IDD without DS, to be diagnosed with ADHD (OR = 0.47), ASD (OR = 0.31), and to be taking psychotropics (OR = 0.23), and to have significantly lower irritability/agitation, hyperactivity/noncompliance, and inappropriate speech ABC subscale scores while having more endocrine conditions (OR = 2.61). Discussion: In this study, individuals with IDD with and without DS referred for mental health challenges showed varied physical and mental health conditions.

Purpose: The objectives of the current study were to (1) assess associations between household structure (i.e., living with spouse compared to living alone, with children, or with a spouse and children), presence of children, and mental distress in April 2020 and change in mental distress (between April and August 2020); and (2) determine whether these associations are moderated by income or sex. Participants: A total of 2, 214 adults aged 25-55 from the April and August 2020 waves of the Understanding America study were included in the analytic sample. Study Method: Multivariate. survey-weighted linear regression models were used to examine associations between explanatory variables (i.e., household structure and number of children) and outcome variables (mental distress in April and change in mental distress), measured via the Patient Health Questionnaire (PHQ)-4. Results: In adjusted models, each additional child under the age of 12 was associated with lower mental distress in April 2020 ([beta] = -.30, p = .002). Having children aged 13 to 18 and household structure were not significantly associated with mental distress. In interaction models, living with children only was associated with decreased mental distress among individuals reporting low income (interaction [beta] = -1.28, p = .016) but not high income. Similarly, living with children only was associated with decreased mental distress in females (interaction [beta] = -1.09, p = .025) but not males. Conclusion: This study supports prior literature that demonstrates the positive association of child rearing with psychological well-being and suggests that these benefits may be present even under stay-at-home orders in the early stages of the U.S. COVID-19 pandemic. Public Significance Statement Few studies have evaluated the association between household structure and mental well-being during the COVID-19 pandemic. This study builds on existing literature to explore whether the relationship differs by child age or is moderated by income and sex. Findings have the potential to inform family-oriented public health interventions. Keywords: mental distress, COVID-19, family structure, parenting paradox, The emergence of CO VID-19 in the United States has created unprecedented challenges that have rendered many individuals financially unstable (Good-ell, 2020) and emotionally vulnerable (Li et al., 2020). The [...]

People with intellectual and developmental disabilities (IDD) frequently have behavioral or mental health needs, but experience obstacles to treatment. Family caregivers are often responsible for coordinating the care of individuals with IDD. This study examined family caregiver experiences using intake data from a national tertiary crisis intervention model designed for people with IDD and mental health needs. Caregivers (n = 488) completed the Family Experiences Interview Schedule. Less than half of families reported satisfaction with the mental health services received. Notable gaps were in crisis, night and weekend services, choice of services and providers, communication and coordination between providers, and specialized training. Experiences were worse for caregiving fathers and individuals with IDD with co-occurring chronic medical conditions.

ObjectiveEpigenetic modifications have previously been associated with rheumatoid arthritis (RA). In this study, we aimed to determine whether differential DNA methylation in peripheral blood cell subpopulations is associated with any of 4 clinical outcomes among RA patients.MethodsPeripheral blood samples were obtained from 63 patients in the University of California, San Francisco RA cohort (all satisfied the American College of Rheumatology classification criteria; 57 were seropositive for rheumatoid factor and/or anti-cyclic citrullinated protein). Fluorescence-activated cell sorting was used to separate the cells into 4 immune cell subpopulations (CD14+ monocytes, CD19+ B cells, CD4+ naive T cells, and CD4+ memory T cells) per individual, and 229 epigenome-wide DNA methylation profiles were generated using Illumina HumanMethylation450 BeadChips. Differentially methylated positions and regions associated with the Clinical Disease Activity Index score, erosive disease, RA Articular Damage score, Sharp score, medication at time of blood draw, smoking status, and disease duration were identified using robust regression models and empirical Bayes variance estimators.ResultsDifferential methylation of CpG sites associated with clinical outcomes was observed in all 4 cell types. Hypomethylated regions in the CYP2E1 and DUSP22 gene promoters were associated with active and erosive disease, respectively. Pathway analyses suggested that the biologic mechanisms underlying each clinical outcome are cell type-specific. Evidence of independent effects on DNA methylation from smoking, medication use, and disease duration were also identified.ConclusionMethylation signatures specific to RA clinical outcomes may have utility as biomarkers or predictors of exposure, disease progression, and disease severity.

ObjectiveTo determine whether differentially methylated CpGs in synovium-derived fibroblast-like synoviocytes (FLS) of patients with rheumatoid arthritis (RA) were also differentially methylated in RA peripheral blood (PB) samples.MethodsFor this study, 371 genome-wide DNA methylation profiles were measured using Illumina HumanMethylation450 BeadChips in PB samples from 63 patients with RA and 31 unaffected control subjects, specifically in the cell subsets of CD14+ monocytes, CD19+ B cells, CD4+ memory T cells, and CD4+ naive T cells.ResultsOf 5,532 hypermethylated FLS candidate CpGs, 1,056 were hypermethylated in CD4+ naive T cells from RA PB compared to control PB. In analyses of a second set of CpG candidates based on single-nucleotide polymorphisms from a genome-wide association study of RA, 1 significantly hypermethylated CpG in CD4+ memory T cells and 18 significant CpGs (6 hypomethylated, 12 hypermethylated) in CD4+ naive T cells were found. A prediction score based on the hypermethylated FLS candidates had an area under the curve of 0.73 for association with RA case status, which compared favorably to the association of RA with the HLA-DRB1 shared epitope risk allele and with a validated RA genetic risk score.ConclusionFLS-representative DNA methylation signatures derived from the PB may prove to be valuable biomarkers for the risk of RA or for disease status.

A majority of children's language learning experiences occur in inclusive early child care and education settings. Few evidence-based professional development (PD) programs exist to empower early childhood education providers to use language instruction practices with children in inclusive classrooms. There is little research on providers' implementation of naturalistic developmental behavioral intervention (NDBI) strategies to improve children's language outcomes in whole-group inclusive instruction. We conducted a pilot cluster randomized controlled trial to test the hypothesis that providers in the Early Achievements for Child Care Providers (EA-CP) PD program would show greater gains in NDBI implementation fidelity during shared book reading relative to business-as-usual (BAU) providers. This hypothesis was confirmed. Compared to BAU providers, EA-CP providers exhibited significantly greater fidelity gains from pre-training to mid-training, post-training, and 12-week maintenance assessments. A secondary hypothesis was that toddlers with and without developmental delays in the EA-CP condition would exhibit greater vocabulary and communication gains than toddlers in the BAU condition. Analyses of children with and without delays showed significantly greater expressive vocabulary and story-related engagement and communication in the EA-CP group. For children with delays, positive effects favoring the EA-CP group but not statistically significant were found. Implications for research, practice, and policy are discussed. [ABSTRACT FROM AUTHOR]

Background: Many diagnostic evaluations abruptly shifted to telehealth during the COVID‐19 pandemic; however, little is known about the impact on diagnosis patterns for children evaluated for autism spectrum disorder (ASD). The purpose of this clinical research study was to examine (1) the frequency of diagnoses evaluated beyond ASD; (2) the frequency of diagnoses made, including ASD; and (3) clinician diagnostic certainty for all diagnoses evaluated for children who received an evaluation due to primary concerns about ASD via telehealth during the pandemic compared to those evaluated in person before the pandemic at an ASD specialty clinic. Methods: The sample included 2192 children, 1–17 years (M = 6.5 years; SD = 3.9), evaluated by a physician/psychologist at an ASD specialty center. A total of 649 children were evaluated in‐person September 1, 2019–March 13, 2020 (pre‐pandemic) and 1543 were evaluated via telehealth March 14, 2020–July 26, 2021 (during pandemic). Upon completion of each evaluation, clinicians provided a final diagnostic determination (i.e., "Yes," "No," "Possible," or "Not Assessed") for the following DSM‐5 conditions: ASD, attention‐deficit/hyperactivity disorder (ADHD), intellectual developmental disorder (IDD), anxiety (ANX), depression (DEP), and behavioral disorder (BD). "Possible" indicated lower certainty and the diagnosis was not provided. "Not Assessed" indicated the disorder was not evaluated. Results: Diagnostic certainty for ASD and ADHD was lower and clinicians evaluated for and made diagnoses of IDD less often during evaluations that occurred via telehealth during the pandemic versus in person before the pandemic. DEP and BD were diagnosed more frequently, diagnostic certainty of DEP was lower, and no differences in the frequency of ANX diagnoses emerged during evaluations conducted via telehealth during the pandemic compared to those conducted in person before the pandemic. Conclusions: Differences emerged in the frequency of diagnoses evaluated and made and diagnostic certainty for evaluations conducted via telehealth during the pandemic compared to in person before the pandemic, which likely impacted patients and reflect real‐word challenges. Future work should examine whether these patterns are generalizable and the mechanisms that contribute to these differences. [ABSTRACT FROM AUTHOR]

Objective Anxiety is prevalent in young autistic children under 7 years of age. Yet there is a paucity of empirically based interventions for this age group. DINO Strategies for Anxiety and Uncertainty Reduction (DINOSAUR) is an innovative cognitive behavioral intervention that seeks to optimize treatment response in young autistic children by targeting anxiety and the contributing mechanisms of intolerance of uncertainty and parental accommodation using a telehealth delivery model. This pilot, single-arm study examines the preliminary feasibility of DINOSAUR. Methods Fourteen autistic children ages 4–6 years with average language and cognitive skills and their parents received the intervention. Quantitative and qualitative data pertaining to parent satisfaction and treatment outcomes were collected. Results Attendance, retention, and parent satisfaction ratings offer preliminary support for the feasibility of the treatment model. Change in clinical severity ratings on a semi-structured parent interview of anxiety and parents' qualitative report suggests the potential to benefit young autistic children. Conclusions Results support future study of the DINOSAUR model in a larger, randomized controlled trial. [ABSTRACT FROM AUTHOR]

Objectives: Children with ADHD commonly exhibit sleep disturbances, but there is limited knowledge about how sleep and sleep timing are associated with cognitive dysfunction in children with ADHD. Methods: Participants were 350 children aged 5 to 12 years diagnosed with ADHD. Three sleep-related constructs—time in bed, social jetlag (i.e., discrepancy in sleep timing pattern between school nights and weekend nights), and sleep disturbances were measured using a caregiver-report questionnaire. Linear regression models assessed the associations between sleep-related constructs and cognitive performance. Results: After adjustment for sociodemographic variables, there were few associations between time in bed or sleep disturbances and cognitive performance, however, greater social jetlag was negatively associated with processing speed (β = −.20, 95% CI [−0.35, −0.06]), visually-based reasoning (β = −.13, 95% CI [−0.27, 0.00]), and language-based reasoning (β = −.22, 95% CI [−0.36, −0.08]); all p <.05). Conclusion: Social jetlag, but not time in bed or disturbances, was associated with lower cognitive performance among children with ADHD. [ABSTRACT FROM AUTHOR]