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Using population data, this study included parents of individuals with intellectual and developmental disabilities (n  =  220) and parents of individuals without disabilities (n  =  1,042). Parents of individuals with intellectual and developmental disabilities were further divided into those who co-resided with their adult child and those whose adult child lived elsewhere, and the 3 groups were compared regarding parental patterns of attainment, social participation, psychological functioning, and health in midlife and early old age. In midlife, parents of individuals with intellectual and developmental disabilities were similar in general to comparison parents. However, by early old age, these parents had poorer health and mental health. Co-residence between the adult with intellectual and developmental disabilities and the parent was prevalent during midlife (51.4%) and in the early years of old age (38.6%), and there were different patterns of parental outcomes, depending on the residential status of the adult with intellectual and developmental disabilities.

Using data from the Study of Midlife in the United States (MIDUS), this article examines: (1) the effect of having children with developmental or mental health problems on parents' mental and physical health, (2) the extent to which this effect varies by parental age and gender and (3) the effects of disability-related factors on the well-being of parents of children with disabilities. Compared to parents of non-disabled children, parents of disabled children experienced significantly higher levels of negative affect, marginally poorer psychological well-being, and significantly more somatic symptoms, controlling for sociodemographic variables. Mothers did not differ from fathers in their well-being. Older parents were significantly less likely to experience the negative effect of having a disabled child than younger parents, suggesting an age-related attenuation of the stress of non-normative parenting.

We compared the economic well-being and maternal employment of parents whose children did or did not have developmental disabilities. This prospective study is a secondary analysis of data from the Wisconsin Longitudinal Study, collected when respondents were aged 18, 36, and 53, on average. Although the two groups were similar at age 18, income and savings differed markedly by age 53, but statistically significant differences were not found on other measures. Mothers of children with disabilities were less likely to have job spells lasting more than 5 years and had lower earnings when they were 36 years old. Further, there was a trend for them to be less likely to have full-time jobs as their children grew older.

This study examined how accommodative coping via flexible goal adjustment affects the wellbeing of midlife parents. Using data from the Wisconsin Longitudinal Study, a population-based study of midlife adults, the authors compared parents who have a child with a severe mental health problem, a child with a developmental disability, or a child with no chronic illness or disability. Overall, parents had better well-being (i.e., lower levels of depressive and physical symptoms, higher levels of environmental mastery and self-acceptance) if they used accommodative coping. This effect was stronger for parents of individuals with a severe mental health problem than for the comparison group.

The Waisman Center MRDDRC supports behavioral, social, and biomedical research on human development, developmental disabilities, and neurodegenerative diseases. Examples of research conducted in each of the four MRDDRC units include: abnormalities in gene expression in human neuronal stem cells and progenitor cells from Down syndrome tissue (from the Molecular and Genetic Sciences Unit), language disorders in adolescents with Down syndrome and Fragile X syndrome (from the Communication Processes Unit); the development of selective visual attention during the first 6 months of life (from the Sensory and Cognitive Processes Unit); and the long-range effects of early intervention on special education placement, delinquency, and high school graduation rates (from the Social and Affective Processes Unit).

The psychological well-being of fathers of children with developmental disabilities remains poorly understood. The present study examined depressive symptoms, pessimism, and coping in fathers of adolescents and young adults with Down syndrome (DS;n = 59), autism spectrum disorders (ASDs;n = 135), and Fragile X syndrome (n = 46). Fathers of sons or daughters with ASDs reported a higher level of depressive symptoms than the other groups of fathers. Fathers of sons or daughters with DS reported a lower level of pessimism than the other groups of fathers. There were no group differences in paternal coping style. Group differences in paternal depressive symptoms and pessimism were, in part, related to differences in paternal age, the child's behavior problems, risk of having additional children with a disability, and maternal depressive symptoms. Findings from this study can be used to educate providers and design services for fathers during the later parenting years.

Raising an adolescent or adult child with a developmental disability confers exceptional care giving challenges on parents. We examined trajectories of 2 indicators of emotional well-being (depressive symptoms and anxiety) in a sample of primarily Caucasian mothers (N = 379; M[subscript age] = 51.22 years at Time 1) of adolescent and adult children with an autism spectrum disorder (ASD; M[subscript age] = 21.91 years at Time 1, 73.2% male). We also investigated within-person associations of child context time-varying covariates (autism symptoms, behavior problems, residential status) and maternal context time-varying covariates (social support network size and stressful family events) with the trajectories of emotional well-being. Data were collected on 5 occasions across a 10-year period. Average patterns of stable (depressive symptoms) and improved (anxiety) emotional well-being were evident, and well-being trajectories were sensitive to fluctuations in both child and maternal context variables. On occasions when behavior problems were higher, depressive symptoms and anxiety were higher. On occasions after which the grown child moved out of the family home, anxiety was lower. Anxiety was higher on occasions when social support networks were smaller and when more stressful life events were experienced. These results have implications for midlife and aging families of children with an ASD and those who provide services to these families. (Contains 3 tables.)

In this article, we review the literature on siblings of individuals with autism spectrum disorders (ASD) from a lifespan developmental perspective, from infancy through adulthood, focusing on the sibling relationship and sibling well-being. We situate this review within the larger body of research on siblings of individuals with developmental disabilities (DD) across the lifespan. We then consider the genetic aspects of ASDs and their implications for siblings. We conclude that there is an evidence of atypical social and communication development in some siblings of children with an ASD during infancy. During childhood and adolescence, siblings describe both positive and negative aspects of their sibling relationship and there is some evidence that siblings of children with an ASD may be at heightened risk for social and behavioral adjustment problems. The limited research on adulthood suggests that lack of closeness in the sibling relationship and social and emotional difficulties may continue. We encourage more attention focused on developmental issues, specifically with respect to samples in narrower age groups and in longitudinal research. Finally, we note the variability in sibling outcomes, and suggest further examination of potential moderating and mediating factors, including genetic predispositions.

The psychological well-being of mothers raising a child with a developmental disability varies with the nature of the disability. Most research, however, has been focused on Down syndrome and autism. We added mothers whose adolescent or young adult son or daughter has fragile X syndrome. The sample was comprised of mothers of a child with fragile X syndrome (n = 22), Down syndrome (n = 39), or autism (n = 174). Mothers of individuals with fragile X syndrome displayed lower levels of well-being than those of individuals with Down syndrome, but higher levels than mothers of individuals with autism, although group differences varied somewhat across different dimensions of well-being. The most consistent predictor of maternal outcomes was the adolescent or young adult's behavioral symptoms.

Using daily diary methods, mothers of adolescents and adults with ASD ( n = 86) were contrasted with a nationally representative comparison group of mothers of similarly-aged unaffected children ( n = 171) with respect to the diurnal rhythm of cortisol. Mothers of adolescents and adults with ASD were found to have significantly lower levels of cortisol throughout the day. Within the ASD sample, the son or daughter’s history of behavior problems interacted with daily behavior problems to predict the morning rise of the mother’s cortisol. A history of elevated behavior problems moderated the effect of behavior problems the day before on maternal cortisol level. Implications for interventions for both the mother and the individual with ASD are suggested. [ABSTRACT FROM AUTHOR]

Recent research on individuals with autism spectrum disorders (ASD) highlights that they may be at increased risk for health problems when compared to the general population, and that these differences appear to increase with age. Relatively little research has examined the psychosocial impact of poorer health in this population, even though the clinical literature suggests that health problems put individuals with ASD at risk for elevated behavioral problems and their mothers at risk for elevated caregiving burden. This study examined the associations of physical health and behavior problems, as well as the associations of these factors with maternal burden, using longitudinal data. Results indicated that prior ratings of physical health problems predicted subsequent levels of behavior problems. Further, behavior problems partially mediated the effect of health problems on maternal burden. Implications for policies and interventions that focus on health promotion in conjunction with treatment of behavior problems are discussed, along with directions for future research. [ABSTRACT FROM AUTHOR]

Medication use was examined in 286 adolescents and adults with ASD over a 4.5 year period. A total of 70% were taking a psychotropic or non-psychotropic medication at the beginning of the study. Both the number of psychotropic and non-psychotropic medications taken, and the proportion of individuals taking these medications, increased significantly over the study period, with 81% taking at least one medication 4.5 years later. Our findings suggested a high likelihood of staying medicated over time. Thus, adolescents and adults with ASD are a highly and increasingly medicated population. [ABSTRACT FROM AUTHOR]

The purpose of this study was to test a diathesis-stress model of well-being for siblings who have a brother or sister with an autism spectrum disorder (ASD). Data were collected from 57 adolescents and their mothers. Sisters reported higher levels of depressive and anxiety symptoms than brothers. Having a family history of ASDs was associated with depressive, but not anxiety, symptoms. A high level of maternal depression was also associated with more depressive and anxiety symptoms. A diathesis-stress model was partially supported, primarily through the findings that sibling sub-threshold autism characteristics were associated with depressive and anxiety symptoms in siblings, but only in the presence of a high number of stressful life events. [ABSTRACT FROM AUTHOR]

The life course of individuals with mild intellectual deficits and the factors that account for heterogeneity in their midlife outcomes were examined. Past research has shown that such individuals are at risk for poor occupational attainment in adulthood and more compromised psychological functioning, including increased depression. Although predictors varied for men and women, in general greater midlife occupational attainment was predicted by continuation of education beyond high school, having role models for achievement, and social participation earlier in adulthood. Midlife psychological functioning was predicted by having role models of achievement, having discussed plans for the future with parents and teachers, and achievement of aspirations set in high school. Implications for contemporary models of transition planning are discussed. [ABSTRACT FROM AUTHOR]

Restricted repetitive behaviors (RRBs) were examined in a large group of children, adolescents and adults with ASD in order to describe age-related patterns of symptom change and association with specific contextual factors, and to examine if the patterns of change are different for the various types of RRBs. Over 700 individuals with ASD were rated on the Repetitive Behavior Scale-Revised. RRBs were less frequent and less severe among older than younger individuals, corroborating that autism symptoms abate with age. Our findings further suggest that repetitive behaviors are a heterogeneous group of behaviors, with the subtypes of RRBs having their own individual patterns across the lifespan, and in some cases, a differential association with age depending on intellectual functioning. [ABSTRACT FROM AUTHOR]

We investigated sibling relationships and wellbeing in adolescents and adults with a sibling with an autism spectrum disorder (ASD). Adolescents engaged in more shared activities than did adults. Adolescents reported greater social support, greater use of emotion-focused coping strategies, and less use of problem-focused coping than adults. In adulthood, females with a sister with ASD reported the most positive affect in the sibling relationship and men with a sister with ASD the least. Adolescents engaged in more shared activities and reported more positive affect in their sibling relationship when their sibling with ASD had fewer behavior problems; greater use of problem-focused coping buffered the negative effects of behavior problems on sibling engagement. For adults, more shared activities were observed when the sibling with ASD was younger in age and had fewer behavior problems; greater positive affect in sibling relationships was predicted by greater parental support. [ABSTRACT FROM AUTHOR]

Expressed emotion measures the emotional climate of the family and is predictive of symptom levels in a range of medical and psychiatric conditions. This study extends the investigation of the effects of expressed emotion to families of individuals with autism. A sample of 149 mothers co-residing with their adolescent or adult child with autism over an 18-month period was drawn from a large multiwave longitudinal study. High expressed emotion was related to increased levels of maladaptive behavior and more severe symptoms of autism over time. Also, characteristics of the son or daughter influenced levels of maternal expressed emotion over time. Although autism is a complex genetic disorder, the effect of the family environment in shaping the behavioral phenotype should not be underestimated. [ABSTRACT FROM AUTHOR]

Copyright of American Journal on Mental Retardation is the property of American Association on Intellectual & Developmental Disabilities and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

This article seeks to elucidate the trajectory of development in adolescents and adults with autism. Prospective, retrospective, and cross-sectional studies are reviewed to reveal the manifestation of and changes in the core symptoms of autism in adolescence and adulthood. Comparing children with adolescents and adults, modest degrees of symptom abatement and improvement in skills have been documented in multiple studies, as are increases in verbal and decreases in performance IQ. Nevertheless, most individuals do not attain normative outcomes in adulthood and continue to manifest significant degrees of symptomatology and dependency. However, a small sub-group (about 15%) has more favorable adult outcomes. © 2004 Wiley-Liss, Inc. MRDD Research Reviews 2004;10:234–247. [ABSTRACT FROM AUTHOR]

In this study, we investigate peer relationships and participation in social and recreational activities among 235 adolescents and adults with autism who live at home. The prevalence of having friendships, peer relationships, and participating in social and recreational activities were all low and comparable to previous research. Both individual and environmental factors were investigated as predictors of having peer relationships and participation in social and recreational activities. Having peer relationships was predicted by individual characteristics (younger age, and less impairment in social interaction skills), but not by characteristics of the environment. Greater participation in social and recreational activities was predicted by characteristics of the individual with autism (greater functional independence, less impairment in social interaction skills, higher levels of internalizing behaviors) and characteristics of the environment (greater maternal participation in social and recreational activities, greater number of services received, and inclusion in integrated settings while in school). [ABSTRACT FROM AUTHOR]

This paper examines methodological challenges inherent in conducting research on families of children with autism and in comparing these families with others who are coping with different types of disabilities or who have nondisabled children. Although most comparative research has contrasted families whose child has autism with those whose child has Down syndrome, the range of comparison groups can be expanded to offer additional points of contrast and control. We discuss both matching and statistical control procedures and point to next steps in this line of comparative autism family research. [ABSTRACT FROM AUTHOR]

Copyright of American Journal on Mental Retardation is the property of American Association on Intellectual & Developmental Disabilities and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Copyright of American Journal on Mental Retardation is the property of American Association on Intellectual & Developmental Disabilities and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

The article presents information on a study which explores the role of social support in mitigating caregiving stress among parental caregivers of adult with disabilities. Authors' have adopted a stress process model and stress associated with caregiving such as the amount of care provided by the mother, the presence of behavioral problems, and the mother's concerns about the future well-being of her son or daughter, are conceptualized as chronic strains which may produce psychological distress. This study of family caregiving provides an opportunity to examine how social support processes are related to psychological outcomes. In this study it was found that social support was a more prominent predictor of changes in burden and depressive symptoms in mothers of adults with mental illness, suggesting the importance of the social context for their psychological well-being. Also, mothers of adults with mental retardation provided more care with activities of daily living than mothers of adults with mental illness. However, mothers of adults with mental illness had to cope with more behavioral problems than did mothers of adults with mental retardation.

This article examines the antecedents and consequences of the end of co-resident caregiving in aging families of adults with mental retardation. Research on parental caregiving for adults with disabilities has revealed that there are both frustrations and gratifications associated with this role. The balance of positive and negative adaptations depends in large part on the specific disability of the adult child, the level of societal acceptance or stigma, and the formal and informal support systems available to or created by parents. It is found that aging mothers of adults with mental retardation report more gratifications, less subjective burden, more social support, and more effective coping strategies than aging mothers of adults with mental illness. To continue this line of comparative research, in this article, the author contrasts the predictors and consequences of the end of co-resident caregiving in two contexts: aging mothers caring for an adult son or daughter with mental retardation and aging mothers caring for an adult child with severe mental illness.

This article examines the relationships between adults with mental retardation and their non-handicapped siblings and the effect of these relationships on the well-being of aging mothers. Families are found to differ in their level and pattern of sibling involvement. Mothers whose children provided support to the adult with retardation had better well-being than mothers with no other children or no involved children. These findings are discussed in the context of family systems theory and parent-child relationships during later years. [ABSTRACT FROM AUTHOR]

An introduction to the journal is presented in which the editors discuss various reports published within the issue including one by Crnic and colleagues on the longitudinal research on preschool to early school age period, one by Floyd and Costigan on the transition to adulthood in individuals with intellectual and developmental disabilities (IDD), and one by Glidden and Jobe on the adjustment of parents who adopt children with IDD.

The article investigates daily living skills of people with autism and autism spectrum disorders (ASD) over a 10 year period. The authors discuss the developmental pattern and rate of daily living skills using latent growth curve modeling. They also contrast the daily living skills with people with Down Syndrome (DS). Other topics investigated include recommendations for future research, residential statuses, and age-related factors.

We compared the occurrence and timing of divorce in 391 parents of children with an autism spectrum disorder (ASD) and a matched representative sample of parents of children without disabilities using a survival analysis. Parents of children with an ASD had a higher rate of divorce than the comparison group (23.5% vs. 13.8%). The rate of divorce remained high throughout the son's or daughter's childhood, adolescence, and early adulthood for parents of children with an ASD, whereas it decreased following the son's or daughter's childhood (after about age 8 years) in the comparison group. Younger maternal age when the child with ASD was born and having the child born later in the birth order were positively predictive of divorce for parents of children with an ASD. Findings have implications for interventions focused on ameliorating ongoing and long-term marital strains for parents of children with an ASD. [ABSTRACT FROM AUTHOR]

In a previous study, high levels of maternal criticism predicted increased behavior problems in adolescents and adults with autism spectrum disorders (ASD) over an 18-month period (Greenberg, Seltzer, Hong, & Orsmond, 2006). The current investigation followed these families over a period of 7 years to examine the longitudinal course of criticism and behavior problems, to assess the association between their trajectories, and to determine the degree to which change in each of these factors predicted levels of criticism and behavior problems at the end of the study period. A sample of 118 mothers coresiding with their adolescent and adult children with ASD provided open-ended narratives about their children and reported on the children's behavior problems at 4 waves. Maternal Criticism was derived from expressed emotion ratings of the narratives. Criticism exhibited low but significant stability over the 7-year period, and behavior problems exhibited high stability. Through latent growth curve modeling, (a) Criticism was found to have increased over time, but only for the group of families in which the sons or daughters transitioned from high school services during the study period; (b) individual changes in criticism and behavior problems were positively correlated over the 7-year period; and (c) changes in criticism predicted levels of behavior problems at the conclusion of the study. Changes in behavior problems were not predictive of end levels of criticism. Implications for intervention and prevention efforts are discussed. [ABSTRACT FROM AUTHOR]