Marsha Mailick Seltzer

Psychological Well-Being and Coping in Mothers of Youths With Autism, Down Syndrome, or Fragile X Syndrome

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 adults behavioral symptoms.

Employment and Post-Secondary Educational Activities for Young Adults with Autism Spectrum Disorders During the Transition to Adulthood

This report describes the post-high school educational and occupational activities for 66 young adults with autism spectrum disorders who had recently exited the secondary school system. Analyses indicated low rates of employment in the community, with the majority of young adults (56%) spending time in sheltered workshops or day activity centers. Young adults with ASD without an intellectual disability were three times more likely to have no daytime activities compared to adults with ASD who had an intellectual disability. Differences in behavioral functioning were observed by employment/day activity group. Our findings suggest that the current service system may be inadequate to accommodate the needs of youths with ASD who do not have intellectual disabilities during the transition to adulthood.

Life course impacts of parenting a child with a disability.

We contrasted parents who had a child with a developmental disability, a serious mental health problem, and a normative comparison group with respect to parental attainment and well-being at mid-life. Data are from the Wisconsin Longitudinal Study, collected when the respondents were 18, 36, and 53 or 54, on average. Although similar at age 18, group patterns of attainment and well-being diverged thereafter. Parents of a child with a developmental disability had lower rates of employment, larger families, and lower rates of social participation but were similar to parents without a child with a disability in educational and marital status, physical health, and psychological well-being. Parents whose child had a serious mental health problem had normative patterns of educational and occupational attainment and marriage, but elevated levels of physical symptoms, depression, and alcohol symptoms at mid-life.

The Relative Risk and Timing of Divorce in Families of Children With an Autism Spectrum Disorder

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 sons or daughters childhood, adolescence, and early adulthood for parents of children with an ASD, whereas it decreased following the sons or daughters 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.

Age-Related Differences in Restricted Repetitive Behaviors in Autism Spectrum Disorders

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.

Daily Experiences Among Mothers of Adolescents and Adults with Autism Spectrum Disorder

In the present study, 96 co-residing mothers of adolescents and adults with an autism spectrum disorder (ASD) participated in an 8-day diary study and reported on their daily experiences. In comparison with a nationally representative sample of mothers of children without disabilities, mothers of adolescent and adult children with ASD spent significantly more time providing childcare and doing chores, and less time in leisure activities. Fatigue, arguments, avoided arguments, and stressful events were also more common among mothers of individuals with ASD. However, mothers of individuals with ASD reported similar levels of positive interactions and volunteerism as the comparison group. Daily experiences were subsequently related to well-being in both groups. These findings highlight the need for family support services.

Long-term effects of the death of a child on parents' adjustment in midlife.

The death of a child is a traumatic event that can have long-term effects on the lives of parents. This study examined bereaved parents of deceased children (infancy to age 34) and comparison parents with similar backgrounds (n = 428 per group) identified in the Wisconsin Longitudinal Study. An average of 18.05 years following the death, when parents were age 53, bereaved parents reported more depressive symptoms, poorer well-being, and more health problems and were more likely to have experienced a depressive episode and marital disruption than were comparison parents. Recovery from grief was associated with having a sense of life purpose and having additional children but was unrelated to the cause of death or the amount of time since the death. The results point to the need for detection and intervention to help those parents who are experiencing lasting grief.

Differences in coping effectiveness and well-being among aging mothers and fathers of adults with mental retardation

In this longitudinal study, we examined stress and coping processes among 133 married mothers (age 59 to 83) and fathers (age 56 to 84) of adults with mental retardation (age 19 to 53). There were no differences between mothers and fathers with respect to their frequency of use of emotion-focused coping, but mothers used significantly more problem-focused coping strategies than did their husbands. For mothers, greater use of problem-focused coping strategies and lower use of emotion-focused coping buffered the impacts of caregiving stress on their psychological well-being. However, for fathers, no buffering effects of coping were detected. The implications of gender differences in coping effects were examined in the context of the impact of lifelong caregiving.

Economic implications of caregiving at midlife: comparing parents with and without children who have developmental disabilities.

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.

A Comparison of Coping Strategies of Aging Mothers of Adults With Mental Illness or Mental Retardation

Differences in coping by 105 aging mothers of adults with mental illness and 389 similar mothers of adults with mental retardation were investigated. Although no differences in problem-focused coping were found, mothers of adults with mental illness used more emotion-focused coping, which predicted greater maternal depression. For mothers of adults with retardation, depressive symptoms were a function of their childs behavior problems, although this source of stress was buffered by coping. For mothers of adults with mental illness, depression was a function of caregiving demands, but coping did not buffer the effects of stress. Explanations for findings include maternal perceptions of the context of care, of her control over the disability, and her caregiving efficacy.