Adaptation to a spouse's disability by parents of adult children with mental illness or developmental disability.

OBJECTIVE: This study examined the effects on well-being of a spouse's disability among aging parents already serving as caregivers of adult children with severe mental illness or a developmental disability. METHODS: The study sample consisted of two groups of participants in the Wisconsin Longitudinal Study of 1957 high school graduates and their randomly selected siblings-those who had a child with a disability (N=227) and a matched comparison group of parents who did not have a child with a disability (N=1,463). The participants were surveyed in 1992-1994 and 2004-2006, and participants with a spouse with a disability in 1992-1994 were excluded from the analysis. The effect of multiple caregiving roles was investigated by using regression analysis. RESULTS: Parents of adult children with severe mental illness were more likely than either parents of adult children with developmental disabilities or the comparison group to report that their spouse developed a disability in the early retirement years. The experience of caring for a spouse with a disability and the experience of caring for an adult child with disabilities had additive effects in eroding the well-being of older adults. Parents of adult children with severe mental illness in general had the lowest levels of well-being. CONCLUSIONS: As they move into their retirement years, aging parents who care for children with long-term disabilities are likely to experience multiple caregiving responsibilities. Service providers must address the needs of these aging parents and develop interventions to help them cope and plan for their future.

Marital satisfaction and life circumstances of grown children with autism across 7 years.

We examined the extent to which marital satisfaction across 7 years in 199 mothers was associated with the characteristics (gender, age, and intellectual disability status) of their adolescent or adult child with an autism spectrum disorder (ASD) and whether fluctuations in marital satisfaction covaried with the child's autism symptoms, health, behavior problems, and closeness in the parent-child relationship. We also examined the impact of the departure of the adult child out of the family home on mothers' marital satisfaction. The effect of family context variables including the presence of an additional child with a disability, maternal education, and household income on marital satisfaction were also examined. We found that closeness in the mother-child relationship and household income had a significant effect on level of marital satisfaction, and that variability in the slope of mothers' marital satisfaction was significantly predicted by fluctuations in the behavior problems of the adolescent or adult child with an ASD. The grown child's departure out of the family home was not related to change in marital satisfaction. Interventions aimed at managing the behavior problems of adolescents and adults with ASDs may help strengthen parents' marital relationship.

Cortisol response to behavior problems in FMR1 premutation mothers of adolescents and adults with fragile X syndrome: A diathesis-stress model.

Mothers of adolescents and adults with fragile X syndrome (FXS) are faced with high levels of parenting stress. The extent to which mothers are negatively impacted by this stress, however, may be influenced by their own genetic status. The present study uses a diathesis-stress model to examine the ways in which a genetic vulnerability in mothers with the premutation of the FMR1 gene interacts with child-related environmental stress to predict their morning cortisol levels. Seventy-six mothers of an adolescent or adult with FXS participated in an 8-day telephone diary study in which they reported on the behavior problems of their son or daughter with FXS each day. We analyzed salivary cortisol collected from mothers at awakening and 30 minutes after awakening on 4 of these days. The results indicated that mothers with greater genetic vulnerability had a lower level of cortisol on mornings following days when their son or daughter with FXS manifested more episodes of behavior problems, whereas mothers with less genetic risk evinced the opposite pattern of higher morning cortisol in response to their child's behavior problems. This finding contributes to our understanding of gene-by-environment interactions and highlights the importance of interventions to alleviate parenting stress in mothers raising children with FXS.

Developmental trajectories in adolescents and adults with autism: the case of daily living skills.

OBJECTIVE: This study aimed to investigate the longitudinal course of daily living skills in a large, community-based sample of adolescents and adults with autism spectrum disorders (ASD) over a 10-year period. METHOD: Adolescents and adults with ASD (n = 397) were drawn from an ongoing, longitudinal study of individuals with ASD and their families. A comparison group of 167 individuals with Down syndrome (DS) were drawn from a linked longitudinal study. The Waisman Activities of Daily Living Scale was administered four times over a 10-year period. RESULTS: We used latent growth curve modeling to examine change in daily living skills. Daily living skills improved for the individuals with ASD during adolescence and their early 20s, but plateaued during their late 20s. Having an intellectual disability was associated with lower initial levels of daily living skills and a slower change over time. Individuals with DS likewise gained daily living skills over time, but there was no significant curvature in the change. CONCLUSIONS: Future research should explore what environmental factors and interventions may be associated with continued gains in daily living skills for adults with ASD.

Psychological Well-being in Fathers of Adolescents and Young Adults with Down Syndrome, Fragile X Syndrome, and Autism.

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 (FXS; n = 46) Fathers of sons/daughters with ASDs reported a higher level of depressive symptoms than the other groups of fathers. Fathers of sons/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.

Prevalence of CGG expansions of the FMR1 gene in a US population-based sample.

The primary goal of this study was to calculate the prevalence of the premutation of the FMR1 gene and of the "gray zone" using a population-based sample of older adults in Wisconsin (n = 6,747 samples screened). Compared with past research, prevalence was relatively high (1 in 151 females and 1 in 468 males for the premutation and 1 in 35 females and 1 in 42 males for the gray zone as defined by 45-54 CGG repeats). A secondary study goal was to describe characteristics of individuals found to have the premutation (n = 30, 7 males and 23 females). We found that premutation carriers had a significantly higher rate of divorce than controls, as well as higher rates of symptoms that might be indicative of fragile X-associated tremor ataxia syndrome (FXTAS; numbness, dizziness/faintness) and fragile X primary ovarian insufficiency (FXPOI; age at last menstrual period). Although not statistically significant, premutation carriers were twice as likely to have a child with disability.

Developing a vocational index for adults with autism spectrum disorders.

Existing methods of indexing the vocational activities of adults with autism spectrum disorders (ASD) have made significant contributions to research. Nonetheless, they are limited by problems with sensitivity and reliability. We developed an index of vocational and educational outcomes that captures the full range of activities experienced by adults with ASD, and that can be reliably coded across studies using specific decision rules. To develop this index, we used employment, vocational, and educational data collected from nearly 350 adults with ASD at 6 times over 12 years, as part of a larger longitudinal study. The resulting index consists of 11 categories coded on a 9-point scale, ranging from competitive employment and/or postsecondary educational program to no vocational/educational activities.

Self-reported autism symptoms in adults with autism spectrum disorders.

Scores on the autism spectrum quotient (AQ) were examined in 65 adults with ASD. Maternal reports of symptoms were collected simultaneously using the autism diagnostic interview-revised (ADI-R) and the Vineland Screener. A slightly revised AQ administration procedure was used to accommodate adults with below average IQ. AQ scores were lower than in the original validation study, with only 11 adults (17%) scoring above the proposed diagnostic cut-off and 24 (27%) exceeding the screening cut-off. Adults with higher IQs endorsed more symptoms than those with below average intelligence, but even when analyses were restricted to the 39 adults with at least average IQ, only 44% met the screening cut-off. AQ scores were not significantly correlated with ADI-R or Vineland scores.

Behavioral phenotype of fragile X syndrome in adolescence and adulthood.

The present study explored the behavioral profile of individuals with fragile X syndrome during adolescence and adulthood. Individuals with both fragile X syndrome and autism (n  =  30) were compared with (a) individuals diagnosed with fragile X syndrome (but not autism; n  =  106) and (b) individuals diagnosed with autism (but not fragile X syndrome; n  =  135) on measures of autism symptoms, adaptive functioning, behavior problems, and psychological symptoms. Results indicated that individuals dually diagnosed with fragile X syndrome and autism displayed greater communication and social reciprocity impairments than individuals with fragile X syndrome only. Individuals in the dually diagnosed group also exhibited higher levels of repetitive and challenging behaviors than either comparison group, suggesting a unique profile of vulnerability for those diagnosed with both fragile X syndrome and autism.

Daily health symptoms of mothers of adolescents and adults with fragile x syndrome and mothers of adolescents and adults with autism spectrum disorder.

Health symptoms of mothers of adolescents and adults with fragile X syndrome (FXS; n = 112) were compared to a nationally-representative sample of mothers of similarly-aged children without disabilities (n = 230) as well as to a sample of mothers of adolescents and adults with autism spectrum disorders (ASD; n = 96). Health symptoms experienced in the previous 24 h were recorded during 8 consecutive days of a daily diary study. Both mothers of a son or daughter with FXS and mothers of a son or daughter with ASD had a higher proportion of days with headaches, backaches, muscle soreness, fatigue, and hot flashes than mothers of children without disabilities. Mothers of children with disabilities appear to be at particular risk for health problems, highlighting a need for comprehensive services for families across the lifespan.

Daily stress and cortisol patterns in parents of adult children with a serious mental illness.

OBJECTIVE: The goal of the current study was to examine whether parenting an adult child with a serious mental illness (SMI) has a physiological impact on parents. METHOD: Multiple samples of saliva were collected on 4 days from 61 parents (mean age = 60.07 years, SD = 10.01) of individuals with a SMI (bipolar disorder, schizophrenia, and major depression; mean age = 32.46 years, SD = 10.57) and a comparison group of 321 parents (mean age = 58.09 years, SD = 12.88) of individuals without a SMI (mean age = 32.36; SD = 13.87). Saliva samples were assayed for the hormone cortisol and group differences in diurnal cortisol patterns and their association with daily stress severity were explored. RESULTS: On days after elevated stress, a hypoactivation pattern of diurnal cortisol suggestive of chronic stress was evident for parents of individuals with a SMI. After more stressful days, cortisol levels increased less from waking to 30 min after waking and declined less from 30 min after waking to bedtime for parents of individuals with a SMI. CONCLUSIONS: The results of the current study add to a growing body of evidence that the long-term effects of parenting an adult with a disability has a biological impact on aging parents and support the need for family interventions across adulthood and into old age for parents of individuals with SMI.

Social support and well-being at mid-life among mothers of adolescents and adults with autism spectrum disorders.

The present study investigated the impact of social support on the psychological well-being of mothers of adolescents and adults with ASD (n = 269). Quantity of support (number of social network members) as well as valence of support (positive support and negative support) were assessed using a modified version of the "convoy model" developed by Antonucci and Akiyama (1987). Having a larger social network was associated with improvements in maternal well-being over an 18-month period. Higher levels of negative support as well as increases in negative support over the study period were associated with increases in depressive symptoms and negative affect and decreases in positive affect. Social support predicted changes in well-being above and beyond the impact of child behavior problems. Implications for clinical practice are discussed.

Differential sensitivity to life stress in FMR1 premutation carrier mothers of children with fragile X syndrome.

OBJECTIVE: The premutation of the FMR1 gene (defined as between 55 and 200 CGG repeats) is estimated to affect 1 in 149 females and 1 in 643 males, and some people who carry the FMR1 premutation display signs of impairment. METHOD: This study focuses on 82 premutation carrier mothers (M age = 51.4 years; SD = 7.7) of adolescent and adult children with fragile X syndrome (FXS). A Gene × Environment interaction approach examined the ways in which the experience of negative life events interacts with genetic vulnerability to predict depressive symptoms, anxiety, and daily cortisol levels. RESULTS: The associations of life events with all 3 dependent measures were associated with CGG repeat length but in a curvilinear manner. Mothers with midsize CGG repeats who experienced above-average numbers of negative life events in the previous year had more depressive symptoms and anxiety and had a blunted cortisol awakening response, as compared with those with higher or lower repeat lengths. However, mothers with midsize CGG repeats who experienced below-average numbers of negative life events in the previous year had the lowest levels of depressive symptoms and anxiety, and they exhibited the typical cortisol response to awakening, meeting the criteria for differential susceptibility. CONCLUSIONS: This research extends our understanding of the phenotypic effects of the expansion of the FMR1 gene, and it adds to the growing literature on the curvilinear relationship between CGG repeat length and mental and physical health.

Midlife and aging parents of adults with intellectual and developmental disabilities: impacts of lifelong parenting.

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.

Longitudinal effects of adaptability on behavior problems and maternal depression in families of adolescents with autism.

Research on families of individuals with autism has tended to focus on child-driven effects utilizing models of stress and coping. The current study used a family systems perspective to examine whether family level adaptability promoted beneficial outcomes for mothers and their adolescents with autism over time. Participants were 149 families of children diagnosed with autism who were between the ages of 10 and 22 years during the 3-year period examined. Mothers reported on family adaptability, the mother-child relationship, their own depressive symptoms, and the behavior problems of their children at Wave 1, and these factors were used to predict maternal depression and child behavior problems 3 years later. Family level adaptability predicted change in both maternal depression and child behavior problems over the study period, above and beyond the contribution of the dyadic mother-child relationship. These associations did not appear to depend upon the intellectual disability status of the individual with autism. Implications for autism, parent mental health, family systems theory, and intervention with this population are discussed.

Change in maternal criticism and behavior problems in adolescents and adults with autism across a 7-year period.

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.

Accounting for the Down syndrome advantage?

The authors examined factors that could explain the higher levels of psychosocial well being observed in past research in mothers of individuals with Down syndrome compared with mothers of individuals with other types of intellectual disabilities. The authors studied 155 mothers of adults with Down syndrome, contrasting factors that might validly account for the ?Down syndrome advantage? (behavioral phenotype) with those that have been portrayed in past research as artifactual (maternal age, social supports). The behavioral phenotype predicted less pessimism, more life satisfaction, and a better quality of the mother?child relationship. However, younger maternal age and fewer social supports, as well as the behavioral phenotype, predicted higher levels of caregiving burden. Implications for future research on families of individuals with Down syndrome are discussed.

Exploring the adult life of men and women with fragile X syndrome: results from a national survey.

Using data from a national family survey, the authors describe the adult lives (i.e., residence, employment, level of assistance needed with everyday life, friendships, and leisure activities) of 328 adults with the full mutation of the FMR1 gene and identify characteristics related to independence in these domains. Level of functional skills was the strongest predictor of independence in adult life for men, whereas ability to interact appropriately was the strongest predictor for women. Co-occurring mental health conditions influenced independence in adult life for men and women, in particular, autism spectrum disorders for men and affect problems for women. Services for adults with fragile X syndrome should not only target functional skills but interpersonal skills and co-occurring mental health conditions.

Marital satisfaction and parenting experiences of mothers and fathers of adolescents and adults with autism.

The association of marital satisfaction with parenting burden and quality of the parent?child relationship was examined in 91 married mothers and fathers of co-residing adolescents and adults with autism spectrum disorders. Within-couple differences between mothers and fathers in how child characteristics related to these parenting experiences were also evaluated. Multilevel modeling was used to control for the dependency in couple data. Marital satisfaction was an important predictor of parenting experiences, particularly for fathers. Mothers reported feeling closer to their son or daughter than did fathers. Fathers' parenting experiences were more strongly impacted by child characteristics than were mothers' parenting experiences. Results emphasized the connection between the marital relationship and parenting experiences and overlapping but unique experiences of mothers and fathers.

Marital Quality and Families of Children with Developmental Disabilities.

In the current review, we highlight recent research on marital quality in parents of children with developmental disabilities (DD) and discuss the child and family factors that account for why some marriages fare better than others. We will also discuss the need for the field of DD to broaden its perspective on marital quality and to examine the impact of marriages on child well-being and the well-being of parents. The clinical implications of recent research findings on marital quality for improving supports and interventions for families of children with DD are discussed. A theoretical framework and model of marriage and parent and child psychosocial well-being in the context of child disability is proposed and a roadmap for future research is provided.