Changes in psychiatric symptoms related to specific stages of dementia were investigated in 224 adults 45 years of age or older with Down syndrome. Findings indicate that psychiatric symptoms are a prevalent feature of dementia in the population with Down syndrome and that clinical presentation is qualitatively similar to that seen in Alzheimer's…

Differences between 70 adults with autism spectrum disorders and intellectual disability and 70 age-matched adults with Down syndrome were examined on variables indicative of independence in adult life. Adults with autism spectrum disorder had less residential independence and social contact with friends, had more limited functional abilities and…

The impact on everyday life for siblings of children with intellectual disability or typical development was examined. Participants were families of children with intellectual disability (n = 39) or typical development (n = 75). Child behavior problems and sibling impact were assessed at child ages 5, 6, 7, and 8. Results indicate that siblings of…

The Autism Diagnostic Interview-Revised (ADI-R) was used to examine diagnostic profiles and age-related changes in autism symptoms for a group of verbal children and adolescents who had fragile X syndrome, with and without autism. After controlling for nonverbal IQ, we found statistically significant between-group differences for lifetime and…

The Supports Intensity Scale (SIS) was developed to provide information on the support needs of persons with intellectual disability. Our aim here was to evaluate the factorial validity of the SIS in a sample of 14,862 persons with intellectual disability. The structure of the instrument as promulgated by the developers was tested and its…

We examined how the educational expectations that parents with mild intellectual deficits had for their children shaped their children's attainment, and how parents' own intellectual limitations affected this process. We identified 612 parents with mild intellectual deficits and 2,712 comparison parents from the Wisconsin Longitudinal Study, a…

This literature review was conducted to evaluate the current state of evidence supporting communication interventions for individuals with severe intellectual and developmental disabilities. We reviewed 116 articles published between 1987 and 2007 in refereed journals meeting three criteria: (a) described a communication intervention, (b) involved…

We gathered individual participant data from 16 group design studies on behavioral intervention for children with autism. In these studies, 309 children received behavioral intervention, 39 received comparison interventions, and 105 were in a control group. More children who underwent behavioral intervention achieved reliable change in IQ (29.8%)…

The effects of caregiving on mothers of adults with intellectual disability was examined by determining whether there are differences in quality of life and related factors between mothers with different employment status. Study participants were 302 working-age mothers who had adult children with intellectual disability based on the 2008 census…

Our objective was to evaluate the relationship between congenital gastrointestinal anomalies requiring neonatal surgery and neurodevelopmental outcome. Among the children born in metropolitan Atlanta during 1982-2001 who survived to age 1 year (N = 762,824), we identified children with congenital gastrointestinal anomalies via linkage with the…

Minocycline can rescue the dendritic spine and synaptic structural abnormalities in the fragile X knock-out mouse. This is a review and preliminary survey to document side effects and potential outcome measures for minocycline use in the treatment of individuals with fragile X syndrome. We surveyed 50 patients with fragile X syndrome who received…

Understanding the nature and consequences of intellectual and developmental disabilities is challenging, especially when the condition is rare, affected individuals are geographically dispersed, and/or resource constraints limit large-scale studies involving direct assessment. Surveys provide an alternative methodology for gathering information…

A national survey of caregivers of individuals with fragile X syndrome addressed characteristics of epilepsy and co-occurring conditions. Of the 1,394 individuals (1,090 males and 304 females) with the full mutation, 14% of males and 6% of females reported seizures. Seizures were more often partial, began between ages 4 and 10 years, and were…

We used National Fragile X Survey data in order to examine reported self-injurious behavior (SIB) to (a) generate lifetime and point prevalence estimates, (b) document detailed features of SIB (frequency, types, location, severity) in relation to gender, and (c) compare comorbid conditions between matched pairs (SIB vs. no SIB). Results indicate…

National survey data from 884 families were used to examine the overall health of children and adults with fragile X syndrome. Results indicate the rate of obesity in adults with fragile X syndrome is similar to the general population (30%). Male children with fragile X syndrome, however, had higher rates of obesity (31%) when compared with…