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

As a major funder of research on intellectual and developmental disabilities (IDD), NIH has a broad view of the profound impact of cultural and structural barriers on the characteristics of IDD study populations and the composition of the IDD research workforce. While long overdue, multiple efforts are currently underway across NIH aimed at addressing these barriers and increasing meaningful representation in biomedical and behavioral research.

In "Toward Equity in Research on Intellectual and Developmental Disabilities," we sought to make entrenched assumptions and practices of intellectual and developmental disabilities research visible by explicitly describing the status quo in terms of models of disability, participant and researcher identities, research priorities, and biases in measurement and treatment approaches. We then curated individual- and systems-level actions drawn from disability justice and broader social justice lenses to offer a way forward. We focused on three major areas (i.e., intersectionality and person-centered approaches, participatory research, and interprofessional collaboration), depicting influences, methods, and actions in a framework of disability, identity, and culture. In this Author Response, we address five commentaries that critique and extend that synthesis.

"Toward Equity in Research on Intellectual and Developmental Disabilities" (IDD) is a timely and comprehensive article highlighting gaps in the "dominant culture" approach to current research strategies designed to address IDD. Recentering systems involved in the research enterprise are recommended. This commentary provides additional guidance from a social justice, equity, and inclusion lens, including a clinical anthropology approach to research.

This commentary on Kover and Abbeduto (2023) underscores the critical importance of naming and framing toward an equity agenda in intellectual and developmental disabilities research. More specifically, I briefly outline (1) why racialization is an important anchor in IDD discourse; (2) whiteness as a necessary point of discussion; and (3) the adoption of critical inquiry and critical praxis.

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.

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.

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.

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.