This study examined correlates of participation in postsecondary education and employment over 12 years for 73 adults with autism spectrum disorders 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 autism spectrum disorder participated in competitive employment/postsecondary education during the study, fewer than 25% maintained these activities over the study period. Behavioral characteristics distinguished those who never had competitive employment/postsecondary education from those who sometimes or consistently participated in these activities. Women were considerably less likely than men to maintain employment/postsecondary education over time.
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 years at the start of the study; M = 30.9) 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. After controlling for personal characteristics, receipt of more services was marginally related to greater improvement in vocational independence.
Parents of individuals with developmental disorders or mental health problems often provide life-long care and support to their children, which negatively affects their health in part due to chronic ...stress. This study aimed to examine the experience of stigma as a source of chronic stress among parents of individuals with developmental disorders or mental health problems and the effect of stigma on parental health outcomes.
Using data from the Survey of Midlife in the United States (MIDUS 2 and 3), we constructed a sample for a longitudinal analysis including 128 parents of individuals with developmental disorders (e.g., autism, cerebral palsy, epilepsy, Down syndrome, intellectual disabilities, brain injury, ADD/ADHD) or mental health problems (e.g., bipolar disorder, schizophrenia, major depression) and 2256 parents whose children were nondisabled.
Parents who had children with developmental disorders or mental health problems prior to the beginning of the study (i.e., at MIDUS 1) reported higher levels of stigma related to embarrassment/shame and daily discrimination than parents of nondisabled individuals ten years later at MIDUS 2, which in turn were associated with poorer parental health outcomes (poorer self-rated health and a greater number of chronic conditions) nearly a decade after that at MIDUS 3.
The findings suggest that the stigma associated with parenting a child with disabilities may be one mechanism that places such parents at risk for poor health. Efforts to alleviate the stigma associated with developmental disorders or mental health problems may have beneficial effects on health of parents of individuals with such conditions.
•Parents of children with disabilities experience a higher level of stigma.•A higher level of parental stigma is associated with poorer health 10 years later.•Policies aimed at destigmatizing disabilities would have public health benefits.
Little is known about outcomes for individuals with autism spectrum disorders (ASD) into adulthood. Several characteristics of individuals with ASD predict long-term outcomes, and the family ...environment may also play a role. The present study uses a prospective, longitudinal design to describe and predict trajectories of autism symptoms and maladaptive behaviors over 8.5 years in a large, community-based sample of adolescents and adults with ASD. Overall, autism symptoms and maladaptive behaviors were observed to improve over the study period. Above and beyond the adult’s gender, age, and level of intellectual disability, greater improvements were associated with higher levels of maternal praise (based on maternal speech samples) and higher quality mother–child relationships. Implications for future research and intervention are discussed.
We examined factors related to subjective quality of life (QoL) of adults with autism spectrum disorder (ASD) aged 25–55 (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.
Autism spectrum disorder (ASD) is a lifelong neurodevelopmental disorder, impacting social communication and in some individuals, aspects of language such as vocabulary diversity. However, we have ...only a limited understanding of the verbal language abilities of adults with ASD. The present longitudinal study examined conversational language and its impact on vocational independence and friendship status measured 5 years later in a sample of 84 adults with ASD. After controlling for IQ and childhood language, vocabulary diversity (a measure of structural language) predicted vocational independence and having friendships, while topic maintenance (a measure of social communication) predicted friendships. These findings highlight the importance of adult conversational language abilities for adult outcomes and quality of life.
•We examined inhibition skills in mother carriers of the FMR1 premutation.•Mid-range CGG repeats of ~80–100 were associated with greater inhibition deficits.•Older age was also linked with inhibition ...deficits, beyond the effect of CGG size.•Mid-range CGG’s and older age could be personalized risk factors for carriers.
Individuals who carry a premutation (PM) allele on the FMR1 gene may experience executive limitations associated with their genetic status, including inhibition deficits. However, poor understanding of individualized risk factors has limited clinical management of this group, particularly in mothers who carry the PM allele who have children with fragile X syndrome (FXS). The present study examined CGG repeat length and age as factors that may account for variable expressivity of inhibition deficits. Participants were 134 carriers of the PM allele who were mothers of children with FXS. Inhibition skills were measured using both self-report and direct behavioral assessments. Increased vulnerability for inhibition deficits was observed at mid-range CGG lengths of approximately 80–100 repeats, with some evidence of a second zone of vulnerability occurring at approximately 130–140 CGG repeats. Risk associated with the genotype also became more pronounced with older age. This study identifies personalized risk factors that may be used to tailor the clinical management of executive deficits in carriers of the PM allele. Inhibition deficits may contribute to poor outcomes in carriers of the PM allele and their families, particularly in midlife and early old age, and clinical monitoring may be warranted.
Currently there are few evidence-based programs available for families of individuals with ASD during the transition to adulthood. The present study provided a preliminary evaluation of a ...multi-family group psychoeducation intervention using a randomized waitlist control design (n = 41). Families in the intervention condition participated in
Transitioning Together
, an 8-week program designed to reduce family distress and improve social functioning for adolescents. Findings indicated significant improvements in parental depressive symptoms and problem solving from pre- to post-intervention for parents in the intervention condition but not for parents in the control condition. Social interactions also improved for youth in the intervention condition relative to controls. Parents reported satisfaction with the program and particularly valued the opportunity to interact with other families.
The death of a child is a traumatic stressor that takes a toll on the health of parents. This study examined long-term impacts of the death of a child on the risk of early mortality in bereaved ...parents. In a follow-up analysis, a twin subsample was analyzed to examine potential genetic confounding.
We analyzed data from the Midlife in the United States (MIDUS) study. The primary sample consists of two groups of MIDUS 2 participants (2004–06); (1) parents who experienced the death of a child prior to MIDUS 2 (n = 451) and (2) comparison parents who had not experienced death of any children (n = 1804) (mean age = 63). We also analyzed 52 twin pairs in which one twin experienced the death of a child and 271 twin pairs in which both twins had all living children. Mortality status of parents was assessed in 2017.
Parents who had experienced the death of a child had a 32% higher likelihood of early mortality (defined as dying earlier than life expectancy) than their peers who did not have any deceased children, and they were more likely to die of heart disease. Analyses of the twin subsample revealed significantly lower concordance for early mortality among the pairs with a bereaved twin than among control twins, consistent with non-genetic effects.
The findings suggest that the death of a child has lasting impacts on the risk of early mortality in bereaved parents. This study provides the first U.S. estimate of bereavement effects on mortality extending through the parents' full life course, with significant public health implications. In addition, analysis of concordance of early death rates in the twin subsample suggests the impact on mortality of parental bereavement, net of genetic factors.
•32% higher rate of mortality in bereaved parents than non-bereaved parents.•Parental mortality effect confirmed in twin sample.•Highest death rates from heart disease in bereaved parents.
This study examined the bidirectional relations over time between behavioral functioning (autism symptoms, maladaptive behaviors, activities of daily living) and vocational/educational activities of ...adults with autism spectrum disorders (ASD). Participants were 153 adults with ASD (M age = 30.2 years) who were part of a larger longitudinal study. Data were collected at two time points separated by 5.5 years. Cross-lag models were used, which accounted for stability over time while testing both directions of cross-lagged effects. Results suggested that greater vocational independence and engagement was related to subsequent reductions in autism symptoms and maladaptive behaviors, and improvements in activities of daily living. Relations between earlier behavioral variables (symptoms, behaviors, and activities of daily living) and later vocational independence were not statistically significant.
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