We examined factors related to subjective quality of life (QoL) of adults with Autism Spectrum Disorder (ASD) aged 25 to 55 (n = 60), using the World Health Organization Quality of Life measure (WHOQOL-BREF). We used three different assessment methods: adult self-report, maternal proxy-report, and maternal report. Reliability analysis showed that adults with ASD rated their own QoL reliably. QoL scores derived from adult self-reports were more closely related to those from maternal proxy-report than from maternal report. Subjective factors such as perceived stress and having been bullied frequently were associated with QoL based on adult self-reports. In contrast, level of independence in daily activities and physical health were significant predictors of maternal reports of their son or daughter’s QoL.

This study examined correlates of participation in postsecondary education (PSE) and employment over 12 years for 73 adults with autism spectrum disorders (ASD) and average-range IQ whose families were part of a larger, longitudinal study. Correlates included demographic (sex, maternal education, paternal education), behavioral (activities of daily living, maladaptive behaviors, autism symptoms) and family (size of maternal social network; maternal depressive symptoms, anxiety, and pessimism) factors. Although two-thirds of adults with ASD participated in competitive employment/PSE during the study, fewer than 25% maintained these activities over the study period. Behavioral characteristics distinguished those who never had competitive employment/PSE from those who sometimes or consistently participated in these activities. Women were considerably less likely than men to maintain employment/PSE over time.

Background Activity limitations are an important and useful dimension of disability, but there are few validated measures of activity limitations for adolescents and adults with developmental disabilities. Objective/Hypothesis To describe the development of the Waisman Activities of Daily Living (W-ADL) Scale for adolescents and adults with developmental disabilities, and systematically evaluate its measurement properties according to an established set of criteria. Methods The W-ADL was administered among four longitudinally-studied groups of adolescents and adults with developmental disabilities: 406 with autism; 147 with fragile-X syndrome; 169 with Down syndrome, and 292 with intellectual disability of other or unknown origin. The W-ADL contains 17 activities and each is rated on a 3-point scale (0=“does not do at all”, 1=“does with help”, 2=“independent”), and a standard set of criteria were used to evaluate its measurement properties. Results Across the disability groups, Cronbach’s alphas ranged from 0.88 to 0.94, and a single-factor structure was most parsimonious. The W-ADL was reliable over time, with weighted kappas between 0.92 and 0.93. Criterion and construct validity were supported through substantial associations with the Vineland Screener, need for respite services, caregiving burden, and competitive employment. No floor or ceiling effects were present. There were significant group differences in W-ADL scores by maternally-reported level of intellectual disability (mild, moderate, severe, profound). Conclusions The W-ADL exceeded the recommended threshold for each quality criterion the authors evaluated. This freely-available tool is an efficient measure of activities of daily living for surveys and epidemiological research concerning adolescents and adults with developmental disabilities.

The transition from adolescence to adulthood has been shown to be a time of amplified risk for individuals with autism spectrum disorders (ASD). It is unknown, however, whether problems in educational attainment and employment in the years after high school exit represent “momentary perturbations” in development or a “turning point” with long-lasting effects throughout adulthood. The present study addressed this question by examining 10-year trajectories of vocational and educational activities for adults with ASD, as well as the personal characteristics and environmental resources that predicted these activities. Participants were 161 adults with ASD (ages 18-52 at the start of the study, M=30.9 years) who were part of a larger longitudinal study. Data were collected at 6 time points over a 10-year period. Results indicated significant declines in the level of independence and engagement in vocational/educational activities over the study period, particularly for women. Greater independence in vocational activities was found for those with more independence in activities of daily living. Net of personal characteristics, receipt of more services was marginally related to greater improvement in vocational independence.

Changes in the fragile X mental retardation 1 gene (FMR1) have been associated with specific phenotypes, most specifically those of fragile X syndrome (FXS), fragile X tremor/ataxia syndrome (FXTAS), and fragile X primary ovarian insufficiency (FXPOI). Evidence of increased risk for additional medical, psychiatric, and cognitive features and conditions is now known to exist for individuals with a premutation, although some features have been more thoroughly studied than others. This review highlights the literature on medical, reproductive, cognitive, and psychiatric features, primarily in females, that have been suggested to be associated with changes in the FMR1 gene. Based on this review, each feature is evaluated with regard to the strength of evidence of association with the premutation. Areas of need for additional focused research and possible intervention strategies are suggested.