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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.

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: 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.

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.

This study examined differences in the rates of psychiatric-related emergency department visits among adolescents with autism spectrum disorder, adolescents with attention deficit hyperactivity disorder, and adolescents without autism spectrum disorder or attention deficit hyperactivity disorder. Additional outcomes included emergency department recidivism, probability of psychiatric hospitalization after the emergency department visit, and receipt of outpatient mental health services before and after the emergency department visit. Data came from privately insured adolescents, aged 12-17 years, with autism spectrum disorder (N = 46,323), attention deficit hyperactivity disorder (N = 408,066), and neither diagnosis (N = 2,330,332), enrolled in the 2010-2013 MarketScan Commercial Claims Database. Adolescents with autism spectrum disorder had an increased rate of psychiatric emergency department visits compared to adolescents with attention deficit hyperactivity disorder (IRR = 2.0, 95% confidence interval: 1.9, 2.1) and adolescents with neither diagnosis (IRR = 9.9, 95% confidence interval: 9.4, 10.4). Compared to the other groups, adolescents with autism spectrum disorder also had an increased probability of emergency department recidivism, psychiatric hospitalization after the emergency department visit, and receipt of outpatient care before and after the visit (all p < 0.001). Further research is required to understand whether these findings extend to youth with other neurodevelopmental disorders, particularly those who are publicly insured.

Background: Students with intellectual and developmental disabilities (IDD) were disproportionately impacted by the COVID‐19 pandemic. This study's goal was to assess the effectiveness of 2 messaging strategies on participation in SARS‐CoV‐2 weekly testing. Methods: Cluster randomized trials were conducted at 2 school systems, the special school district (SSD) and Kennedy Krieger Institute (Kennedy) to assess messaging strategies, general versus enhanced, to increase weekly screening for SARS‐CoV‐2. Testing was offered to staff and students from November 23, 2020 to May 26, 2022. The primary outcomes were percentage of students and staff consented weekly and percentage of study participants who had a test performed weekly. Generalized estimating equation models were utilized to evaluate the primary outcomes. Results: Increases in enrollment and testing occurred during study start up, the beginning of school years, and following surges in both systems. No statistical difference was observed in the primary outcomes between schools receiving standard versus enhanced messaging. Implications for School Health Policy, Practice, and Equity: Frequent and consistent communication is vital for families and staff. Weekly screening testing within schools is possible and highlighted the importance of utilizing equitable protocols to provide important testing to students with IDD. Conclusion: Enhanced messaging strategies did not increase the number of participants enrolled or the percentage of enrolled participants being tested on a weekly basis. [ABSTRACT FROM AUTHOR]

One factor potentially driving healthcare and hospital worker (HHW)'s declining mental health during the COVID-19 pandemic is feeling betrayed by institutional leaders, coworkers, and/or others' pandemic-related responses and behaviors. We investigated whether HHWs' betrayal-based moral injury was associated with greater mental distress and post-traumatic stress disorder (PTSD) symptoms related to COVID-19. We also examined if these associations varied between clinical and non-clinical staff. From July 2020 to January 2021, cross-sectional online survey data were collected from 1,066 HHWs serving COVID-19 patients in a large urban US healthcare system. We measured betrayal-based moral injury in three groups: institutional leaders, coworkers/colleagues, and people outside of healthcare. Multivariate logistic regression analyses were performed to investigate whether betrayal-based moral injury was associated with mental distress and PTSD symptoms. Approximately one-third of HHWs reported feeling betrayed by institutional leaders, and/or people outside healthcare. Clinical staff were more likely to report feelings of betrayal than non-clinical staff. For all respondents, 49.5% reported mental distress and 38.2% reported PTSD symptoms. Having any feelings of betrayal increased the odds of mental distress and PTSD symptoms by 2.9 and 3.3 times, respectively. These associations were not significantly different between clinical and non-clinical staff. As health systems seek to enhance support of HHWs, they need to carefully examine institutional structures, accountability, communication, and decision-making patterns that can result in staff feelings of betrayal. Building trust and repairing ruptures with HHWs could prevent potential mental health problems, increase retention, and reduce burnout, while likely improving patient care. [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: Missed patient appointments have a substantial negative impact on patient care, child health and well-being, and clinic functioning. This study aims to identify health system interface and child/family demographic characteristics as potential predictors of appointment attendance in a pediatric outpatient neuropsychology clinic. Method: Pediatric patients (N = 6,976 across 13,362 scheduled appointments) who attended versus missed scheduled appointments at a large, urban assessment clinic were compared on a broad array of factors extracted from the medical record, and the cumulative impact of significant risk factors was examined. Results: In the final multivariate logistic regression model, health system interface factors that significantly predicted more missed appointments included a higher percentage of previous missed appointments within the broader medical center, missing pre-visit intake paperwork, assessment/testing appointment type, and visit timing relative to the COVID-19 pandemic (i.e. more missed appointments prior to the pandemic). Demographic characteristics that significantly predicted more missed appointments in the final model included Medicaid (medical assistance) insurance and greater neighborhood disadvantage per the Area Deprivation Index (ADI). Waitlist length, referral source, season, format (telehealth vs. in-person), need for interpreter, language, and age were not predictive of appointment attendance. Taken together, 7.75% of patients with zero risk factors missed their appointment, while 22.30% of patients with five risk factors missed their appointment. Conclusions: Pediatric neuropsychology clinics have a unique array of factors that impact successful attendance, and identification of these factors can help inform policies, clinic procedures, and strategies to decrease barriers, and thus increase appointment attendance, in similar settings. [ABSTRACT FROM AUTHOR]

Several reports suggest children with autism spectrum disorder (ASD) are more likely to be seen for injury-related ED visits; however, no nationally representative study has examined this question. Using data from the 2008 Nationwide Emergency Department Sample, over a quarter of all visits among those with ASD were related to injury. In the multivariate analyses, the odds of an injury-related visit was 54% greater among those with ASD compared to youth with intellectual disability (ID), but 48% less compared to youth without ID or ASD. Compared to all other pediatric injury-visits in the US, visits among children with ASD were more likely to be due to self-inflicted injury and poisoning and were more likely to result in hospitalization (all p < 0.001).

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]

Children with autism spectrum disorders (ASD) experience high rates of anxiety, sensory processing problems, and gastrointestinal (GI) problems; however, the associations among these symptoms in children with ASD have not been previously examined. The current study examined bivariate and multivariate relations among anxiety, sensory over-responsivity, and chronic GI problems in a sample of 2,973 children with ASD enrolled in the Autism Treatment Network (ages 2-17 years, 81.6% male). Twenty-four percent of the sample experienced at least one type of chronic GI problem (constipation, abdominal pain, bloating, diarrhea, and/or nausea lasting three or more months). Children with each type of GI problem had significantly higher rates of both anxiety and sensory over-responsivity. Sensory over-responsivity and anxiety were highly associated, and each provided unique contributions to the prediction of chronic GI problems in logistic regression analyses. The results indicate that anxiety, sensory over-responsivity and GI problems are possibly interrelated phenomenon for children with ASD, and may have common underlying mechanisms.

Despite speculation about an 80% divorce rate among parents of children with an Autism Spectrum Disorder (ASD), very little empirical and no epidemiological research has addressed the issue of separation and divorce among this population. Data for this study was taken from the 2007 National Survey of Children's Health, a population-based, cross-sectional survey. A total of 77,911 parent interviews were completed on children aged 3-17 years, of which 913 reported an ASD diagnosis. After controlling for relevant covariates, results from multivariate analyses revealed no evidence to suggest that children with ASD are at an increased risk for living in a household not comprised of their two biological or adoptive parents compared to children without ASD in the United States.

The present study investigated differences among children with three different patterns of autism symptom onset: regression, plateau, and no loss and no plateau. Cross-sectional data were collected from parents of children aged 3-17 years with an autism spectrum disorder (n = 2,720) who were recruited through a US-based online research database. Parental report of developmental characteristics was assessed through a parent questionnaire, and current autism symptoms were measured via the Social Responsiveness Scale and Social Communication Questionnaire. Multivariate analyses indicated that children with regression had a distinct developmental pattern marked by less delayed early development. However, following regression, these children evinced elevated autism symptom scores and an increased risk for poorer outcomes when compared with the other onset groups. (Contains 3 tables and 1 figure.)

Strengths-based clinical practices are critical for supporting the wellbeing of individuals with intellectual and/or developmental disabilities. The VIA Inventory of Strengths ('VIA Survey') is an assessment grounded in positive psychology that may contribute to strengths-based practices. To identify how this assessment is used in clinical practice with individuals with intellectual and/or developmental disabilities, we conducted focus groups (n = 15) with clinicians who have used this survey with this population. We also asked individuals with intellectual and/or developmental disabilities (n = 36) to comment on the process of completing the VIA Survey. We found that clinicians utilize the VIA Survey with individuals with intellectual and/or developmental disability to foster self-esteem and self-understanding, provide a framework for understanding strengths, communicate across service systems and shape strengths-based interventions. Individuals with intellectual and/or developmental disabilities also endorsed use of the survey to increase their self-knowledge and self-esteem. Future research should address accessibility of the survey to foster greater uptake and propose standard protocols for independent survey completion. [ABSTRACT FROM AUTHOR]