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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. (Contains 3 tables.)

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. (Contains 4 tables and 2 figures.)

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 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.

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.)

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.

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.

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.

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.

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.

The present study examined the impact of autism symptoms and coping strategies on the well-being of mothers of children with autism spectrum disorder (ASD). The sample consisted of 153 mothers of toddlers and 201 mothers of adolescents drawn from two ongoing, longitudinal studies of families of individuals with ASD. For mothers of toddlers, lower levels of emotion-focused coping and higher levels of problem-focused coping were generally associated with better maternal well-being, regardless of the level of child symptomatology. For mothers of adolescents, coping often acted as a buffer when autism symptoms were high. Although there was evidence of maternal distress in both groups, the presence of significant buffering effects reflects adaptation in the face of stress, particularly for mothers of adolescents.

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.

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).

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.