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This study examined trajectories of daily living skills, behavior problems, body mass index (BMI), and health conditions spanning nearly a decade in adolescents and adults with fragile X syndrome (N = 134; age range at study end = 19-49 years), examining influences of sex and autism spectrum disorder (ASD) symptoms. Hierarchical linear modeling revealed early increases in daily living skills, with decreases at older ages. Behavior problems became less severe over time, with some increases at older ages. Individuals gained weight and had increasing health problems over time. Fewer ASD symptoms were associated with greater daily living skills and fewer behavior problems at study start. This study offers some of the first prospective quantitative analyses of behavioral and health life course trajectories in FXS.

Research has shown that individuals with autism spectrum disorder have higher rates of health problems throughout childhood, adolescence, and adulthood, and that this may result in elevated risk of early mortality. This study reported the rate, timing, and causes of death in a large community-based cohort of adolescents and adults with autism spectrum disorder (n = 406) over a 20-year period (1998-2018) and identified predictors of mortality. Over this period, 6.4% of individuals died at an average age of 39 years. Causes of death included chronic conditions (such as cancer and heart disease), accidents (such as choking on food and accidental poisoning), and health complications due to medication side effects. Even after controlling for age and health status, significant predictors of mortality were early childhood levels of impairments in social reciprocity and high levels of functional impairments at the start of the study period. The results suggest the importance of social engagement and functional self-sufficiency across the life course, as well as adequate access to health care for individuals with autism spectrum disorder.

Friendships and social participation are key domains of quality of life for individuals with intellectual disabilities. This study examined the friendships, social and recreational activities, and family social networks of individuals with intellectual disabilities from two distinct diagnostic groups: individuals diagnosed with fragile X syndrome (n = 81) compared with those diagnosed with autistic disorder (n = 226). Within each diagnostic group, individuals in two developmental stages were compared: adolescence and adulthood. Quality of life in friendships and social participation domains was notably low for individuals with fragile X and those with autism. Individuals with fragile X had more friendships and a less negative social impact on the family than individuals with autism. Across both groups, adolescents spent less time with friends and neighbors, and more time in exercising, than did adults.

This study examined trajectories of daily living skills, behavior problems, body mass index (BMI), and health conditions spanning nearly a decade in adolescents and adults with fragile X syndrome (N = 134; age range at study end = 19-49 years), examining influences of sex and autism spectrum disorder (ASD) symptoms. Hierarchical linear modeling revealed early increases in daily living skills, with decreases at older ages. Behavior problems became less severe over time, with some increases at older ages. Individuals gained weight and had increasing health problems over time. Fewer ASD symptoms were associated with greater daily living skills and fewer behavior problems at study start. This study offers some of the first prospective quantitative analyses of behavioral and health life course trajectories in FXS., Author(s): Lauren V. Usher [sup.1] , Leann S. DaWalt [sup.1] , Jinkuk Hong [sup.1] , Jan S. Greenberg [sup.1] , Marsha R. Mailick [sup.1] Author Affiliations: (1) grid.14003.36, 0000 0001 [...]

This research examined how parenting adults with developmental disabilities affects parental well-being beyond midlife and into old age. Parents of adults with developmental disabilities (n = 249) and parents of adults without disabilities (n = 9,016), studied in their early 50s and mid-60s, were longitudinally tracked into their early 70s. Compared to parents of adults without disabilities, parents of adults with disabilities showed a pattern of normative functioning in their 50s, followed by poorer well-being in their mid-60s, and further declines in health and well-being into the early 70s. Aging parents who co-resided with their adult child with disabilities were particularly vulnerable, experiencing a steeper increase in depressive symptoms and body mass index (BMI) than parents whose child with disabilities lived away from home.

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 present investigation explored long-term relationships of behavioral symptoms of adolescents and adults with developmental disabilities with the mental health of their mothers. Fragile X premutation carrier mothers of an adolescent or adult child with fragile X syndrome (n = 95), and mothers of a grown child with autism (n = 213) were included. Behavioral symptoms at Time 1 were hypothesized to predict maternal depressive symptoms at Time 3 via maternal executive dysfunction at Time 2. Results provided support for the mediating pathway of executive dysfunction. Additionally, the association of behavioral symptoms with executive dysfunction differed across the two groups, suggesting that premutation carriers may be more susceptible to caregiving stress due to their genotype.

The present study examined trajectories of adaptive behavior, behavior problems, psychological symptoms, and autism symptoms in adolescents and adults with fragile X syndrome (n = 147) over a three-year period. Adaptive behavior significantly increased over time, particularly for adolescents, and the severity of behavior problems decreased over time. Family environmental factors predicted phenotypic variables net of gender, intellectual disability status, and medication use. Maternal warmth was associated with higher levels of adaptive behavior, lower levels of autism symptoms, and decreases in behavior problems over time. Maternal depressive symptoms and criticism were associated with higher levels of psychological symptoms. Implications for interventions are discussed.

In the present study, we jointly employ and integrate variable- and person-centered approaches to identify groups of individuals with autism spectrum disorders (ASD) who have similar profiles of change over a period of 10 years across three critical domains of functioning: maladaptive behaviors, autism symptoms, and daily living skills. Two distinct developmental profiles were identified. Above and beyond demographic and individual characteristics, aspects of both the educational context (level of inclusion) and the family context (maternal positivity) were found to predict the likelihood of following a positive pattern of change. Implementing evidence-based interventions that target the school and home environments during childhood and adolescence may have lasting impacts on functioning into adulthood for individuals with ASD.

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., Author(s): Leann Smith DaWalt [sup.1] , Jan S. Greenberg [sup.1] , Marsha R. Mailick [sup.1] Author Affiliations: (1) Waisman Center, University of Wisconsin-Madison, 0000 0001 2167 3675, grid.14003.36, , 1500 [...]

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.

This study aims to extend the definition of quality of life (QoL) for adults with autism spectrum disorder (ASD, n = 180, ages 23-60) by: (1) characterizing the heterogeneity of normative outcomes (employment, independent living, social engagement) and objective QoL (physical health, neighborhood quality, family contact, mental health issues); and (2) identifying predictors of positive normative outcomes and good objective QoL. Findings of an exploratory latent class analysis identified three groups of adults with ASD-Greater Dependence, Good Physical and Mental Health, and Greater Independence. Findings indicate that better daily living skills, better executive function, and more maternal warmth are associated with assignment to better outcome groups. Findings have implications for interventions designed to enhance achievement of normative outcomes and objective QoL., Author(s): Lauren Bishop-Fitzpatrick[sup.1] , Jinkuk Hong[sup.1] , Leann E. Smith[sup.1] , Renee A. Makuch[sup.1] , Jan S. Greenberg[sup.1] , Marsha R. Mailick[sup.1] Author Affiliations: (1) Waisman Center, University of Wisconsin-Madison, [...]

The present study examined trajectories of adaptive behavior, behavior problems, psychological symptoms, and autism symptoms in adolescents and adults with fragile X syndrome (n = 147) over a three-year period. Adaptive behavior significantly increased over time, particularly for adolescents, and the severity of behavior problems decreased over time. Family environmental factors predicted phenotypic variables net of gender, intellectual disability status, and medication use. Maternal warmth was associated with higher levels of adaptive behavior, lower levels of autism symptoms, and decreases in behavior problems over time. Maternal depressive symptoms and criticism were associated with higher levels of psychological symptoms. Implications for interventions are discussed., Author(s): Leann E. Smith[sup.1] , Jinkuk Hong[sup.1] , Jan S. Greenberg[sup.1] , Marsha R. Mailick[sup.1] Author Affiliations: (1) Waisman Center, University of Wisconsin, 1500 Highland Avenue, 53705, Madison, WI, USA [...]

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., Author(s): Jinkuk Hong[sup.1] , Lauren Bishop-Fitzpatrick[sup.1] , Leann E. Smith[sup.1] , Jan S. Greenberg[sup.1] , Marsha R. Mailick[sup.1] Author Affiliations: (1) Waisman Center, University of Wisconsin-Madison, 1500 Highland Ave., 53705, [...]

In the present study, we jointly employ and integrate variable- and person-centered approaches to identify groups of individuals with autism spectrum disorders (ASD) who have similar profiles of change over a period of 10 years across three critical domains of functioning: maladaptive behaviors, autism symptoms, and daily living skills. Two distinct developmental profiles were identified. Above and beyond demographic and individual characteristics, aspects of both the educational context (level of inclusion) and the family context (maternal positivity) were found to predict the likelihood of following a positive pattern of change. Implementing evidence-based interventions that target the school and home environments during childhood and adolescence may have lasting impacts on functioning into adulthood for individuals with ASD., Author(s): Ashley C. Woodman[sup.1] , Leann E. Smith[sup.2] , Jan S. Greenberg[sup.2] , Marsha R. Mailick[sup.2] Author Affiliations: (1) Department of Psychological and Brain Sciences, University of Massachusetts-Amherst, Tobin Hall [...]

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.

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.

We examine how the family environment is associated with aspects of the Fragile X syndrome phenotype during childhood, adolescence, and adulthood. Mothers of children (n = 48), adolescents (n = 85), and adults (n = 34) with Fragile X syndrome participated in a multisite study. For children and adults with Fragile X syndrome, the presence of warmth and positivity and the absence of criticism were associated with fewer behavior problems. Although a higher level of criticism was significantly associated with greater behavior problems, there were only trend-level associations between levels of warmth and positivity and behavior problems during the adolescent years. The provision of family psychoeducation programs, which can reduce parental criticism, would likely benefit both the individual with Fragile X syndrome and the family.

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. (Contains 4 tables and 1 figure.)

Drawing on modified labeling theory and the reflected appraisals process and using longitudinal data from 129 mothers and their adult children with schizophrenia, we estimate models of the effects of mothers' stigmatized identity appraisals of their mentally ill children on reflected and self-appraisals, and how appraisals affect outcomes (symptoms, self-efficacy, life satisfaction). Results indicate that initial symptoms and functioning are related to how significant others think about their ill family members, how persons with mental illness think others perceive them, and how they perceive themselves. Part of the effects of initial symptoms and functioning on reflected appraisals are due to mothers' appraisals. A small part of the effects of outcomes on self-appraisals are due to others' and reflected appraisals. Stigmatized self-appraisals are related to outcomes, but reflected appraisals do not affect outcomes directly. Implications for modified labeling theory and social psychological processes in recovery from mental illness are discussed. (Contains 1 figure, 4 tables, and 6 footnotes.)

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.

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.

Using daily telephone interviews, 82 midlife parents (mean age = 57.4) of children with disabilities (mean age = 29.9) were compared with a closely matched sample of unaffected parents (N = 82) to elucidate the daily experience of non-normative parenting. In addition, salivary cortisol samples were obtained to examine whether parents of children with disabilities had dysregulated diurnal rhythms and the extent to which the amount of time spent with children was associated with divergent patterns of cortisol expression. We found that parents of children with disabilities had similar patterns of daily time use and similar likelihood of positive daily events as the comparison group, but they had elevated levels of stress, negative affect, and physical symptoms, all reported on a daily basis. In addition, their diurnal rhythm of cortisol expression differed significantly from the comparison group, a pattern that was strongest for parents of children with disabilities on days when they spent more time with their children. (Contains 4 tables and 3 figures.)

Using a cross-lagged panel design, we investigated the impact of positive family processes on change in autism symptoms and behaviors. A sample of 149 co-residing mothers and their adolescent or adult child with autism was drawn from a large, longitudinal study. Maternal warmth and praise were measured using coded speech samples in which mothers talked about their son or daughter. A high level of relationship quality was associated with subsequent reductions in internalizing and externalizing problems as well as reductions in impairments in social reciprocity and repetitive behaviors. Maternal warmth and praise were also related to symptom abatement in the repetitive behaviors domain.

This study investigated the associations between the characteristics of adolescents and adults with autism spectrum disorders (ASD) and maternal well-being. Two groups were compared: mothers of adolescents and adults with ASD and co-morbid psychiatric disorders (n = 142) and mothers whose sons or daughters had a single diagnosis of ASD (n = 130). Individuals with co-morbid psychiatric disorders had higher levels of repetitive behaviors, asocial behavior, and unpredictability of behavior than their counterparts with ASD only. They also had poorer rated health as well as more frequent gastrointestinal problems and sleep problems. Mothers of sons and daughters with ASD and co-morbid psychiatric disorders reported higher levels of burden and a poorer quality parent-child relationship than mothers of sons and daughters with ASD only. Higher levels of asocial behavior, unpredictability of behavior, and poorer health in sons and daughters with ASD were predictive of greater burden in mothers and a poorer quality parent-child relationship. (Contains 7 tables.)

We investigated how change in the characteristics of 140 adolescents and young adults with an autism spectrum disorder (ASD) would predict subsequent change in maternal well-being and in the quality of the mother-child relationship. Overall patterns of improvement in maternal well-being and mother-child relationship quality were observed during the study. When the son or daughter had declining behavior problems, were prescribed more psychotropic medications, and exited from high school during the study period, mothers' well-being and perception of relationship quality improved to a greater extent. In addition, improvements in maternal well-being and relationship quality were observed in mothers of daughters, in mothers of individuals with mental retardation as well as ASD, and in mothers of those in better health.

This study examined change prospectively in autism symptoms and maladaptive behaviors during a 4.5 year period in 241 adolescents and adults with an autism spectrum disorder who were 10-52 years old (mean=22.0) when the study began. Although many individuals' symptoms remained stable, a greater proportion of the sample experienced declines than increases in their level of autism symptoms and maladaptive behaviors and there were significant improvements in mean levels of symptoms. Individuals with mental retardation had more autism symptoms and maladaptive behaviors than those without mental retardation, and they improved less over time. Compared to adolescents, older sample members (31 and older) had fewer maladaptive behaviors and experienced more improvement in these behaviors over time.

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.

The mother-child relationship in families of 202 adolescents and adults with an autism spectrum disorder living at home and its association with maternal caregiving gains and strains were examined. Findings indicate a wide range of variability in the quality of the mother-child relationship, although most were characterized as positive across multiple measures. Characteristics of the son or daughter with autism (less severe maladaptive behaviors, better health, and less social impairments) and characteristics of the mother (lower levels of pessimism) were predictive of more positive mother-child relationships. In turn, specific aspects of the mother-child relationship (greater positive affect and warmth), along with other child and maternal characteristics, predicted fewer maternal caregiving strains and, to a lesser extent, greater caregiving gains.

The psychometric properties of the Self-Report Depression Questionnaire (SRDQ) were evaluated, extending a previous assessment of this instrument. Data from two independent studies (Esbensen, 2004; Seltzer & Krauss, 1989) were pooled to generate a sample of 192 individuals with primarily mild or moderate mental retardation. Reliability estimates of this questionnaire were good to excellent and corroborated prior findings. In addition, the measure was found to have sound validity as evidenced by convergent validity, discriminant validity, and predictive validity and by comparing individuals with and without clinical diagnoses of depression. Thus, the SRDQ appears to be a reliable and valid measure of depressive symptomatology for individuals with mild or moderate mental retardation. Screening procedures are suggested.

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. Keywords Autism symptoms * Maladaptive behaviors * Praise * Mother-child relationship quality * Autism, Introduction Autism spectrum disorder (ASD) results in lifelong disability with pervasive impacts across multiple domains of development (American Psychiatric Association 2013). Once considered rare, ASD is now recognized as a [...]

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 markedl 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.