Ajidd-American Journal on Intellectual and Developmental Disabilities最新文献

We respond to the recommendations made by Kover and Abbeduto in their article, "Toward Equity in Research on Intellectual and Developmental Disabilities," through the discussion of what journal editors should be considering in advancing equitable processes for research with individuals with intellectual and developmental disabilities (IDD). We provide practical suggestions from our experience as co-editors in promoting diversity in research partnerships with people with IDD.

Parenting styles and practices are crucial in promoting the self-determination of children. The purpose of the current study was to investigate the role of parenting styles and practices in enhancing the self-determination of children with/without intellectual and developmental disabilities (IDD). The present study was carried out with a sample of 243 parents of children with/without IDD in Türkiye (Turkey). The results indicated that an authoritative parenting style and autonomy-supportive parenting practices positively affect the degree of child self-determination, whereas permissive and overprotective parenting practices may limit child opportunities in fostering self-determination. The study results also showed that urbanization, higher income, and higher education level of parents positively impacted the degree of child self-determination. Parents of typically developing children reported higher levels of overall self-determination for their typically developing children when compared with children with intellectual disability and autism spectrum disorder. On the other hand, parents of children with mild disabilities reported a higher level of self-determination than both children with moderate and severe disabilities. The results were discussed within the cultural context of the current sample.

Autistic adults participate less and express lower satisfaction in leisure activities than nonautistic adults, although literature is limited. The multifaceted nature of leisure participation makes it challenging to measure, with most measures being retrospective. Ecological momentary assessments (EMA) can reduce recall bias. This pilot study assessed the feasibility and acceptability of EMA among autistic adults. Participants (N = 40) were recruited via email and online. After completing a baseline interview, participants were asked to complete a once-daily survey for 30 days, in which they received survey links through a text messaging smartphone app. Surveys asked participants to report whether they participated in any leisure activities during the day, their level of enjoyment, with whom they interacted, and where they participated. The EMA appeared feasible in this sample, as participants completed the daily survey on average 27.05 (SD = 3.92) days. Regarding acceptability, most agreed that survey timing was convenient, that it was easy to enter responses and answer questions daily, and that they had enough response time. Overall, this study supports the use of EMA methodology among autistic adults. Future research should follow and improve upon these EMA data collection practices to examine daily behavior and well-being among autistic adults.

Individuals with Down syndrome (DS) have been disproportionately harmed by the COVID-19 pandemic and may have been more likely to have sacrificed opportunity and activity to avoid potential exposures. Our objective was to describe the experience one to one and half years into the COVID-19 pandemic for adults with DS, as reported by their caregivers in an online survey conducted between April 2021 and September of 2021. In our sample of 438 adults with DS, caregivers reported that adults with DS lost activities, struggled with employment, had negative behavioral changes, lost skills, and developed more mental health conditions. For adults with DS, one in five caregivers reported less healthcare usage, one in four reported delayed routine care, and 86.5% reported lost activities. As the pandemic continues, targeted support for adults with DS is needed to prevent further skill loss and mental health conditions.

Measurement of adaptive skills is important in the diagnosis, intervention planning, and progress monitoring of children with intellectual and developmental disabilities (IDD). Thus, ensuring accurate measurement, including measurement invariance, across children with and without IDD is critical. In this study, we evaluate the measurement invariance using multigroup confirmatory factor analysis (MG-CFA) of the Vineland-3 Comprehensive Interview (CIF) across children ages 6-21 years with and without IDD (N = 1,192) using archival data. Results showed that the Vineland-3 CIF exhibits configural invariance but may show some metric non-invariance in children with and without IDD. Suggestions for using the Vineland-3 CIF in this population are provided and future research and measure development needs are discussed.

Despite significant advances in understanding and treating social anxiety in the general population, progress in this area lags behind for individuals with intellectual disability. Fragile X syndrome is the most common cause of inherited intellectual disability and is associated with an elevated prevalence rate of social anxiety. The phenotype of fragile X syndrome encompasses multiple clinically significant characteristics that are posed as risk markers for social anxiety in other populations. Here, evidence is reviewed that points to physiological hyperarousal, sensory sensitivity, emotion dysregulation, cognitive inflexibility, and intolerance of uncertainty as primary candidates for underlying mechanisms of heightened social anxiety in fragile X syndrome. A multilevel model is presented that provides a framework for future research to test associations.

Sleep plays an integral role in supporting well-being, and sleep difficulties are common in mothers of individuals with developmental disabilities, including fragile X syndrome (FXS). This study assessed whether the effects of sleep quality on physical health and depression are exacerbated by genetic risk factors (CGG repeats) in FMR1 premutation carrier mothers of individuals with FXS. Poor sleep quality predicted a greater number of physical health conditions for mothers with CGG repeats in the mid-premutation range (90-110 repeats), but not for those in the lower (< 90 repeats) or higher (> 110 repeats) ends of the range. A significant association between poor sleep quality and maternal depressive symptoms was also observed, but there was no evidence that this effect varied by level of genetic vulnerability. This research extends our understanding of individual differences in the effects of sleep quality among mothers of individuals with FXS.