American Journal on Intellectual and Developmental Disabilities

Diagnostic overshadowing is a bias in which symptoms of a psychological disorder are falsely attributed to a known diagnosis of intellectual disability. This systematic review evaluated all research on diagnostic overshadowing conducted to date, including dissertations and peer-reviewed journal articles. In total, 25 studies were included in this review. Findings suggest diagnostic overshadowing may not be as ubiquitous as originally believed, with one third of included studies finding no overshadowing. The quality of the evidence was graded as "Low" using the LEGEND tool, with common issues including outdated studies, analogue methodologies, small sample sizes and convenience samples, and inappropriate conducting or reporting of statistical analyses...

Using National Longitudinal Transition Study 2012 data, this study explored parent and youth expectations in the areas of postsecondary education, employment, independent living, and financial independence. Compared to youth with other disabilities, youth with intellectual and developmental disabilities and their parents had much lower expectations for the four postschool goals, and parent expectations were much lower than youth's own expectations. Also, youth's race, along with their daily living skills and functional abilities, were positively associated with parent and youth expectations in several future goal areas...

Although sexual and reproductive health is critically important for women with intellectual and developmental disabilities (IDD), there is limited research elucidating the role of family caregivers in assisting women with IDD access sexual and reproductive health services and information. Understanding the family caregivers' attitudes and perspectives is essential to improving access to sexual and reproductive health services and information for women with IDD. A cross-sectional online survey of family caregivers of women with IDD was administered between June and October 2018...

Loss of function variants in the Cyclin-dependent kinase-like 5 gene (CDKL5) causes CDKL5 deficiency disorder (CDD). Most cases of CDD are due to a de novo missense or truncating variants. The CDKL5 gene was discovered in 1998 as part of the genomic mapping of the chromosome Xp22 region that led to the discovery of the serine-threonine kinases STK9. Since then, there have been significant advancements in the description of the disease in humans, the understanding of the pathophysiology, and the management of the disease...

Autism is heterogeneous at many levels, including clinical symptoms and etiology. A key strategy in studying heterogeneous conditions is having large enough sample sizes to stratify into smaller groups that are more homogeneous. SPARK and Simons Searchlight are large and growing research cohorts of individuals with autism in the United States and individuals with genetically defined neurodevelopmental conditions around the world, respectively. They both provide freely available phenotypic and genotypic data with the ability to re-contact participants through the research match program...

There are significant research gaps with regard to understanding and addressing the mental health concerns of adults with intellectual and developmental disabilities (IDD) and their families. In this article, we reflect on research we have carried out about mental health and IDD prior to and during the pandemic in Ontario, Canada. We aim to address how partnering with people with IDD, family caregivers, service providers, and policy makers can help accelerate needed progress in this area. We conclude with some lessons learned during the pandemic about what to emphasize in building and maintaining such partnerships...

Neurogenetic conditions (NGC; e.g., fragile X, Angelman, Prader-Willi syndromes) represent the cause for intellectual or developmental disabilities in up to 60% of cases. With expanded diagnostic options and an increasing focus on the development of gene therapies comes the potential of improved quality of life for individuals with NGCs and their families. However, these emerging initiatives also bring new challenges and considerations for NGC researchers and clinicians, including considerations for supporting caregivers and assuring outcome measures for clinical trials adequately reflect the lived experiences of people with NGCs...

Individuals with fragile X syndrome (FXS) and their parents have a range of experiences navigating the crucial transition period between adolescence and adulthood. Semistructured interviews of 47 mothers of adolescents with FXS (mean child age = 15.89 years) were analyzed to identify mothers' changing expectations during the adolescent period and parent goals related to work and postsecondary education. Mothers' work and education goals were explored in relation to child factors such as language skills and autism characteristics...

For many families of children with intellectual disability and autism (ID/ASD), private health insurance and public programs, such as Medicaid and the Children's Health Insurance Program (CHIP), are critical sources of support. The purpose of this study was to examine the impact of health insurance coverage on workforce engagement of parents of children with ID/ASD. The study utilized 2014-2018 pooled National Health Interview Survey data to construct national estimates and test the effects of health insurance status on parent workforce outcomes...

Cross-lagged panel designs were used to examine longitudinal and potential (bi)directional relationships between primary caregiver reported sibling relationship quality and the behaviors of children with intellectual disability (n = 297) and their closest in age siblings. The behavioral and emotional problems of the child with intellectual disability positively predicted sibling conflict over time. When accounting for control variables, this relationship was no longer present. Sibling warmth positively predicted the prosocial behaviors of the child with intellectual disability over time...

This study evaluated the appropriateness of scoring the Behavior Rating Inventory of Executive Function-Preschool (BRIEF-P) using age-equivalent scores generated from multiple measures of cognition and language among school-age children with Down syndrome (DS). Subscale T scores for 95 children with DS were contrasted using standard scoring on the Behavior Rating Inventory of Executive Function-Second edition (BRIEF-2; based on chronological age) to alternate scoring using the BRIEF-P (based on age-equivalent) for patterns of subscale intercorrelations, differences in mean scores, and agreement on findings from clinical cut-off scores...

Autistic individuals and their families are at risk for poor outcomes in employment and mental health and may be vulnerable to long-term effects of broader societal conditions. The aim of the current longitudinal study was to understand the impact of the Great Recession of 2007-2009 on autistic individuals and their mothers (N = 392). Hierarchical linear modeling (HLM) results indicated that problem behavior of autistic adults increased in the years following the recession. The rate at which autistic individuals moved away and lived separately from their mothers also slowed during the recession...

People with autism spectrum disorder (ASD) experience high rates of psychotropic medication utilization and barriers to psychosocial services, yet limited literature explores use of these services and the association between a mental health condition (MH) and use. Using national multipayer claims data, this study estimates a multinomial logistic regression model to discern psychotropic medication and psychosocial service use among transition age youth (TAY) with ASD (12-26 years; N = 52,083) compared to a matched cohort of those without ASD (12-26 years; N = 52,083)...

Automated methods for processing of daylong audio recordings are efficient and may be an effective way of assessing developmental stage for typically developing children; however, their utility for children with developmental disabilities may be limited by constraints of algorithms and the scope of variables produced. Here, we present a novel utterance-level processing (ULP) system that 1) extracts utterances from daylong recordings, 2) verifies automated speaker tags using human annotation, and 3) provides vocal maturity metrics unavailable through automated systems...

We aimed to (a) provide nationally representative estimates of food insecurity (FI) among children with intellectual and developmental disabilities (IDD), and (b) determine the association between FI and four health outcomes (overall health, problem behavior, activities of daily living, functional limitations) in 5,657 children with IDD compared to 1:1 propensity score matched children without IDD. Mixed-effects ordered logistic regression models were used. Children with IDD were more likely to experience FI than children without IDD (43...

Children with developmental delays (DD) are at heightened risk for developing behavior problems, which contribute to parenting stress and caregiving burden. There is an established relation between parenting behaviors and child developmental outcomes with less known about parent-child interactions in young children with DD. The present study examined the associations between parenting behaviors and child behavior in a sample of 180 families with preschool-aged children with DD. Results indicated that caregivers' harsh and coercive behaviors were associated with observed challenging behavior in children...

Mindfulness-based programs can help lower psychological distress among parents of children with developmental disabilities. However, less is known about the functions of mindfulness in relation to parental outcomes. In a cross-sectional survey, mothers of children with developmental disabilities (N = 313) reported on their child's behavior problems, trait mindfulness, mindful parenting, and a range of outcomes (anxiety and depression symptoms, parenting stress, family satisfaction, and positive gain). Neither trait mindfulness or mindful parenting acted as moderators between child behavior problems and outcome variables, although both had main effect (compensatory) associations with parent outcomes...

Choice making is an important aspect of everyone's life in terms of fully becoming an adult within a democratic society. People with intellectual and developmental disabilities (IDD) are at risk for diminished choice making due to various factors, including guardianships; dependence on supports that are not person-centered; and, in some cases, limited capacity to express one's desires effectively. Independent Monitoring for Quality (IM4Q) data for 9,195 and 9,817 for adult services users with IDD were analyzed across two types of choice...

Provoked by decades of grassroots activism, anti-ableist work is underway to advance disability rights. Intellectual disability (ID) researchers can integrate these social changes into their work by interrogating and transforming the beliefs and practices that underpin ID research. We share actionable ideas to foster anti-ableism and allyship in ID research. These include: (1) Learn from and nurture long-term, mutual relationships with people with ID; (2) Amplify the voices of people with ID in institutional structures that influence research; (3) Infuse anti-ableist frameworks into our own research; and (4) Embody a career-long commitment to disability rights, reflexive practice, and growth...

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