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At present, there are no brief, freely-available, informant-report measures that evaluate key challenging behaviors relevant to youth with autism spectrum disorder (ASD) or other developmental disabilities (DD). This paper describes the development, refinement, and initial psychometric evaluation of a new 18-item measure, the Open-Source Challenging Behavior Scale (OS-CBS). In a large sample (n = 2004, 169 with ASD, ages 2–17), results of psychometric analyses indicated a clear factor structure (property destruction, aggression, elopement, conduct problems, and self-injury and a general factor with high loadings from all items) based on exploratory structural equation modeling, good scale reliability (α =.66–.83 for subscales, α =.91 total scale), measurement invariance across demographics, and good construct validity. The OS-CBS is a psychometrically-sound instrument for screening and monitoring intervention progress. [ABSTRACT FROM AUTHOR]

A better understanding of the endocannabinoid system and a relaxation in regulatory control of cannabis globally has increased interest in the medicinal use of cannabinoid-based products (CBP). We provide a systematic review of the rationale and current clinical trial evidence for CBP in the treatment of neuropsychiatric and neurodevelopmental disorders in children and adolescents. A systematic search of MEDLINE, Embase, PsycINFO, and the Cochrane Central Register of Trials was performed to identify articles published after 1980 about CBP for medical purposes in individuals aged 18 years or younger with selected neuropsychiatric or neurodevelopmental conditions. Risk of bias and quality of evidence was assessed for each article. Of 4466 articles screened, 18 were eligible for inclusion, addressing eight conditions (anxiety disorders (n = 1); autism spectrum disorder (n = 5); foetal alcohol spectrum disorder (n = 1); fragile X syndrome (n = 2); intellectual disability (n = 1); mood disorders (n = 2); post-traumatic stress disorder (n = 3); and Tourette syndrome (n = 3)). Only one randomised controlled trial (RCT) was identified. The remaining seventeen articles included one open-label trial, three uncontrolled before-and-after trials, two case series and 11 case reports, thus the risk of bias was high. Despite growing community and scientific interest, our systematic review identified limited and generally poor-quality evidence for the efficacy of CBP in neuropsychiatric and neurodevelopmental disorders in children and adolescents. Large rigorous RCTs are required to inform clinical care. In the meantime, clinicians must balance patient expectations with the limited evidence available. [ABSTRACT FROM AUTHOR]

Purpose: People with intellectual and developmental disabilities (IDD) experience high rates of depression. Evidence indicates that physical activity, or participation in a sports club, in a supportive social environment has mental and physical health benefits. Adults with IDD, on average, engage in low levels of physical activity. The purpose of this study was to compare the rates of depression among young adult Special Olympics participants with IDD compared to non-participants with IDD. Methods: This was a 20-year retrospective cohort study of young adults (19–29 years) with IDD in the province of Ontario, Canada that compared rates of depression among Special Olympics participants (n = 8710) to non-participants (n = 42,393) using administrative health databases housed at ICES (formerly the Institute for Clinical Evaluative Sciences). Using cox proportional hazard models, the crude hazard ratios were calculated for the association between each independent variable and the dependent variable. Results: After controlling for other variables, the hazard rate for depression among Special Olympics participants compared to the hazard rate for depression among non-participants generated an adjusted hazard ratio of 0.51. Over the 20-year follow-up, the participants were 0.51 times as likely to develop depression as non-participants; this represents a 49% reduction in risk among Special Olympics participants. This result was statistically significant and represents a medium effect size. Conclusion: Future research is needed on how much of this risk reduction is related to a physiological response to physical activity/exercise, and how much is related to the social connectedness of being part of a group participating in Special Olympics. [ABSTRACT FROM AUTHOR]

The purpose of this study was to describe the profile of individual, relational, and contextual resilience resources reported by youth with FASD and their caregivers and examine how these resources related to early childhood adversity, potential protective factors, and concurrent emotional and behavioral functioning. Nineteen youth with FASD (aged 13 to 23 years) and their caregivers (foster or adoptive parents) completed the Child and Youth Resilience Measure (CYRM-28), the Behavioral Assessment System for Children (BASC-2), and a detailed developmental history questionnaire. Youth with FASD were reported to have comparable relational resilience resources to a typically developing reference group, but lower contextual resources compared to the reference group. Caregivers reported youth to have low individual resilience resources, but youth with FASD reported individual resources commensurate with the normative reference group. Early childhood adversity, age, sex, and IQ were not significantly associated with resilience resources. However, earlier age of stable caregiving placement and earlier age at FASD diagnosis were associated with greater caregiver-reported relational and contextual resilience resources. Finally, higher youth- and caregiver-reported individual resources were associated with less mental health symptomology, and higher youth- and caregiver-reported individual and contextual resources were associated with better adaptive functioning behavior. These findings complement previous research documenting the necessity of ensuring early stable relationships for youth with FASD and permitting timely access to diagnostic services. The results also highlight the need to better understand and strengthen individual and contextual resources. [ABSTRACT FROM AUTHOR]

This study assessed needs and outcomes for people with developmental disability (DD) to understand the socioeconomic status of this group prior to implementation of the Accessible Canada Act in June 2019. The 2017 Canadian Survey on Disability (CSD) was used to analyze data for a sample of individuals with self-reported disability. Data related to employment, education, income, housing, caregivers, and use of government benefits is reported. Compared to the general Canadian public, persons with DD are less likely to: finish high-school or post-secondary education; participate in the labor force or be employed; and earn on average less/year in total income. To align with recent accessibility legislation, significant progress is needed to address disparities for people with DD. [ABSTRACT FROM AUTHOR]

In countries with public health insurance, caregivers may face long wait times to access services for children with intellectual and developmental disability. This limited access may compromise the adaptation of the child and their family, especially when specialized services (e.g., early intensive behavioral interventions) are needed to manage problem behaviors. Further, longer wait times can contribute to parental stress and increase problem behaviors in children. Therefore, the purpose of the current study was to evaluate the effectiveness of an online parent training for managing problem behaviors for families awaiting specialized services. Twenty-nine families of children with intellectual and developmental disability participated in a randomized controlled trial with random assignment to a waitlist control (i.e., sixteen families in the experimental group and thirteen in the waitlist group). Our results demonstrated that the online training led to reductions in the frequency of problem behaviors and parenting stress while improving caregivers' self-efficacy. This study provides preliminary evidence for the utility of an online training to support caregivers of young children with intellectual and developmental disability. Highlights: This online training can support caregivers in managing problem behaviors while awaiting services for their child. The results demonstrated that the training increased caregivers' sense of self-efficacy in managing problem behaviors. A significant decrease in parental stress was observed in caregivers who completed the online training. [ABSTRACT FROM AUTHOR]

Telehealth has been shown to be both acceptable and effective in many areas of healthcare, yet it was not widely adopted prior to the SARS-CoV-2 (COVID-19) pandemic. Additionally, previous evaluations of telehealth for autism spectrum condition (ASC) and intellectual and developmental disability (IDD) populations are limited in both number and scope. Here, we investigated satisfaction amongst Psychology and Psychiatry patient caregivers at Cincinnati Children's Hospital Medical Center (CCHMC) after the onset of the COVID-19 pandemic. Results (640 responses) showed high rates of satisfaction across departments, appointment types, and diagnoses, with 92% indicating overall satisfaction with their appointment. There were, however, notable decreases in satisfaction among Group Therapy respondents, and those whose diagnosis was classified as Other. [ABSTRACT FROM AUTHOR]

Many parents experience grief and loss in response to their child receiving an autism diagnosis in early childhood. However, there is a dearth of research that considers if grief and loss are experienced by parents throughout their child's adolescence and young adulthood. Further, there is a small but growing body of evidence suggesting that parents of autistic children may be living with ambiguous loss in particular, that is, a loss for which there is no closure or resolution. This case study introduces a peer group intervention utilizing an ambiguous loss framework that school social workers and other clinicians can adopt to support mothers of autistic adolescents who are struggling with ambiguous loss. Through the group process, the mothers developed deeper understanding, self-compassion, and effective coping strategies, resulting in a more resilient approach to the transition process and an enhanced capacity to plan for a meaningful adult life with their autistic child. [ABSTRACT FROM AUTHOR]

Over the past 10 years, identification of Autism Spectrum Disorder (ASD) risk has dramatically increased due to the wide-spread implementation of screening programs; yet, there is limited understanding about parent perceptions and experiences during the time period when risk is identified, but prior to receiving a formal diagnosis—a period that can last months to years given the long wait-lists for formal ASD evaluations. The current study aimed to examine parent perceptions of family impact (i.e., the impact their child's behaviors have on the family) between the time of risk-identification and formal diagnosis among 277 children identified as at-risk for ASD through screening positive in primary care. We aimed to compare family impact among those whose child met diagnostic criteria for ASD and those who did not. Parents of children who received a non-ASD diagnosis reported a higher baseline level of family impact (F[1, 274] = 5.82, p =.017); however, perceived difficult child behavior was a stronger predictor of family impact (t[6] = 13.11, p <.001) than later diagnostic group (t[6] = − 2.10, p =.037), and child functioning did not predict family impact (t[6] = -0.31, p =.76). These results suggest that in this population, perceived difficult child behavior is a stronger predictor of family impact than later diagnostic category and should be considered an important factor in family support. [ABSTRACT FROM AUTHOR]

We evaluated factors affecting psychological ill-effects and resilience of caregivers of children with developmental disabilities during the coronavirus pandemic. Depression, Anxiety, and Stress Scales (DASS-21) and Connor-Davidson Resilience Scale 25-item were administered. Logistic regression was used to identify factors associated with psychological ill-effects and resilience. DASS-21 depression, anxiety and stress scores were high; these were associated with difficulties with infection control measures, autism diagnosis, and need for early intervention services. For caregivers of children with ASD, our DASS-21 scores were significantly higher than non-pandemic scores locally and in other Asian sites. Resilience scores correlated inversely with DASS-21 scores. Targeted support to selected at-risk caregivers and improving resilience can help their coping. [ABSTRACT FROM AUTHOR]