This study aimed to describe the behavioral profile of individuals with SYNGAP1-ID. Parents/carers of 30 individuals aged 3-18 years old with a diagnosis of SYNGAP1-ID and 21 typically developing individuals completed the Vineland-3 Adaptive Behavior Scale and the Child Behavior Checklist. We found that those with SYNGAP1-ID showed fewer adaptive…

Extracorporeal life support, such as pediatric cardiac extracorporeal membrane oxygenation (ECMO), is associated with significant mortality and morbidity risk. This study evaluated cardiac ECMO survivors with central cannulation and found that 51.1% were discharged from the hospital. The study also revealed high rates of developmental delay…

This study evaluates the psychometric properties of a verbal fluency task for potential use as an outcome measure in future clinical trials involving children with Down syndrome. Eighty-five participants attempted a modified version of the Neuropsychological Assessment of Children, Second Edition Word Generation Task at two time points. In the…

We examined racial and ethnic differences in the prevalence of behavioral problems measured by the Child Behavioral Checklist (CBCL), sleep disturbances measured by the Child Sleep Habits Questionnaire (CSHQ), and medication use among children with Autism Spectrum Disorders (ASD). We analyzed data from the Autism Treatment Network (ATN) dataset…

A better understanding of the factors associated with depression and anxiety in people with intellectual and developmental disabilities (IDD) is needed to provide guidelines for service providers, clinicians, and researchers as well as to improve the diagnostic process. The current study used a longitudinal dataset to explore demographic, health,…

We estimated the effects of information avoidance and information seeking among parents of children diagnosed with autism spectrum disorder (ASD) on age of diagnosis. An online survey was completed by 1,815 parents of children with ASD. Children of parents who self-reported that they had preferred "not to know," reported diagnoses around…

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…

The Early Communication Indicator (ECI) was designed to measure expressive communication progress in young children. We evaluated using the 6-min ECI procedure for a new purpose--a sampling context for stable measures of vocal development of young children with autism spectrum disorder (ASD). We evaluated how many ECI sessions were required to…

Gait is a relevant and complex aspect of motor functioning. Disturbances are related to negative health outcomes. Gait characteristics of 31 adults with intellectual disability (ID) without Down syndrome (DS) (42.77 ± 16.70 years) were investigated, and associations with age, sex, body mass index (BMI), and level of ID were assessed. Sex and BMI…

The block design task (BDT) is a visuospatial measure that individuals with Williams syndrome (WS) perform poorly on. However, it is unclear what underlies their impaired performance. This study investigated whether poorer performance is a result of visuospatial difficulties, executive function (EF) difficulties, atypical looking strategies, or a…

An innovation in developing the Supports Intensity Scale--Children's Version (SIS-C) was the adoption of latent variable modeling approaches to norm development. In regard to translated versions of the SIS-C, the latent modeling approaches provided opportunities to leverage the large standardization sample generated in the United States (n=4,015)…

On average, adults with intellectual disability (ID) have higher mortality risk than their peers in the general population. However, the effect of age on this mortality disadvantage has received minimal attention. Using data from the 1986-2011 National Health Interview Survey-Linked Mortality Files (NHIS-LMF), discrete time hazard models were used…

We studied the association between multimorbidity, polypharmacy, and mortality in 1,050 older adults (50+) with intellectual disability (ID). Multimorbidity (presence of = 4 chronic health conditions) and polypharmacy (presence = 5 chronic medication prescriptions) were collected at baseline. Multimorbidity included a wide range of disorders,…

Forty-two adolescents with Down syndrome (DS) ages 10 to 21 years completed a battery of language and phonological memory measures twice, 2 years apart. Individual differences were highly stable across two years. Receptive vocabulary scores improved, there was no change in receptive or expressive grammar scores, and nonword repetition scores…

Small studies in Western populations report a high prevalence of obstructive sleep apnea (OSA) in adults with Down syndrome. To date, ethnic differences have not been explored. A questionnaire sent to 2,752 adults with Down syndrome aged 16 years in Scotland and Japan (789 valid responses) estimated OSA prevalence based on reported symptoms.…