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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.

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.)

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.

We examined whether exiting high school was associated with changes in the mother-child relationship. Participants were 170 mothers of youth with ASD who were part of our larger longitudinal study and who exited high school during the study; data were collected four times over 7 years. Results indicated improvement in the mother-child relationship while in high school; however, improvement in all indices slowed or stopped after exit. Mothers of youth with ASD without an intellectual disability (ID) and who had more unmet service needs evidenced the least improvement after exit. Our findings provide further evidence that the years after high school exit are a time of increased risk, especially for those with ASD without ID and whose families are under-resourced.

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.

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.

We examined whether exiting high school was associated with alterations in rates of change in autism symptoms and maladaptive behaviors. Participants were 242 youth with ASD who had recently exited the school system and were part of our larger longitudinal study; data were collected at five time points over nearly 10 years. Results indicated overall improvement of autism symptoms and internalized behaviors over the study period, but slowing rates of improvement after exit. Youth who did not have an intellectual disability evidenced the greatest slowing in improvement. Lower family income was associated with less improvement. Our findings suggest that adult day activities may not be as intellectually stimulating as educational activities in school, reflected by less phenotypic improvement after exit. (Contains 4 tables and 2 figures.)

Changes in health, functional abilities, and behavior problems among 150 adults with Down syndrome and 240 adults with mental retardation due to other causes were examined with seven assessments over a 9-year period. Adults were primarily younger than 40, the age at which declines begin to be evident in individuals with Down syndrome. Adults with Down syndrome were advantaged in their functional abilities and lack of behavior problems, comparable in health, and exhibited comparable rates of change on these measures as adults with mental retardation due to other causes. Placement out of the parental home and parental death were predictors of change in health, functional abilities, and behavior problems.

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.

Differences in depression between Puerto Rican and non-Latina White mothers providing care to their adult child with mental retardation were examined. The focus of this study is on how family problems may mediate the effect of the adult's behavior problems on the mother's level of depressive symptoms and how this process differs across the two groups of mothers. As hypothesized, family problems was a stronger predictor of depressive symptoms for Puerto Rican mothers than for non-Latina White mothers. In addition, Puerto Rican mothers were in poorer physical health, which further accounted for differences in depression between the two groups.

A study examined stress and coping processes among 133 married mothers and fathers of adults with mental retardation. Mothers used significantly more problem-focused coping strategies. Unlike fathers, mothers' use of problem-focused coping strategies and lower use of emotion-focused coping buffered the impact of caregiving stress on their psychological well-being. (Author/CR)

Aging mothers who lived with an adult child experiencing mental retardation (n=308) or mental illness (n=73) were studied to determine the antecedents and consequences of the end of coresidence. Consequences of this transition with respect to maternal burden and depressive symptoms were similar for most participants. (Author/MKA)

Examines the role of social support in mitigating caregiving stress among two groups of parental caregivers (N=361). Results indicate that although mothers of adults with mental illness had smaller social support networks than mothers of adults with mental retardation, the former were more likely to be members of support groups. (RJM)

Examines the differences and similarities between siblings of adults with serious mental illness (n=61) and siblings of adults with mental retardation (n=329). Results indicate that siblings of adults with mental retardation were significantly more likely to perceive that the brother or sister had a pervasive influence on their life decisions. (RJM)

Comparison of 160 adults with Down's syndrome (DS) and their aging mothers with 253 adults with mental retardation resulting from other causes (and their mothers) found that the DS mothers reported less conflicted family environments, more satisfaction with their social supports, and less stress and burden associated with caregiving than did the other mothers. (Author/DB)

Current residential placement of 761 mentally retarded children in institutions during the late 1970s was described, and differences between children in institutions, in community settings, or with natural families were analyzed. Results indicated that the majority remained in institutions, and of those released, very few were placed in their natural home. (Author/CL)

Forty-three community residences were studied to examine correlates of community opposition. Residences that conducted public education were significantly more likely to encounter opposition than residences that did not. The point at which the community became aware of the facility's existence was also related to extent of opposition encountered. (Author/CL)

Data from the Massachusetts Service Coordination Battery were analyzed for institutionalized (N=406) and community-based (N=124) mentally retarded adults and for institutionalized (N=460) and community-based (N=95) mentally retarded older adults to determine differences in cognitive, medical, and functional impairment; service needs; and utilization. Differences were observed only in service needs and utilization. (Author/CB)

The study examined the structure and patterns of service utilization of all elderly persons (N=1911) receiving state-supported mental retardation services in Massachusetts in 1987. Increased use of services and growing numbers of increasingly frail elderly people were noted. Qualitative data concerning age-integrated, age-specialized, and generic aging services are also reported. (Author/JW)

Predictors of 4 indices of well-being (physical health, life satisfaction, burden, and parenting stress) were examined among 203 aging mothers of mentally retarded adults living at home. Predictive variables examined include maternal characteristics, retarded adult's characteristics, family social climate, mother's social support network, and formal supports. (Author/JDD)

Examined 373 programs providing eight types of services sponsored by the aging network in Massachusetts to determine which were utilized by mentally retarded elderly. Results from the mail survey indicated that 52 percent of the programs were actually utilized by this population. (Author/BHK)

Relationships between age and community adjustment were studied in 153 deinstitutionalized mentally retarded adults. Results showed that, although the two groups (18 to 54 and 55 and over) were comparable in IQ and recidivism rate, the older Ss lived in less autonomous residences in the community and functioned at a lower level. (Author/CL)