Factors associated with sustained community employment among adults with autism and co-occurring intellectual disability.

Sustaining community employment is a challenge for adults with autism spectrum disorders, especially for those who have co-occurring intellectual disability, but factors contributing to this employment outcome have not been fully evaluated. This study utilized longitudinal data to explore the impact of contextual influences, family factors, and individual characteristics on sustained employment over approximately 18 months ( N = 105). Very few adults with autism spectrum disorder and intellectual disability achieved sustained employment (14.3%). The results indicated that more independent daily living skills, a higher family income, a larger maternal social network, an inclusive school environment in early childhood, and currently living in an area with a larger population size were associated with significantly greater odds of sustaining employment. Follow-up analyses suggested that managing personal care is particularly important for employment.

Validating the social responsiveness scale for adults with autism.

The Social Responsiveness Scale [SRS; Constantino & Gruber, 2005] is a widely-used measure of autism symptoms, but its application for the study of adults with autism spectrum disorders has not been fully evaluated. Using a factor structure consistent with The Diagnostic and Statistical Manual of Mental Disorders (5th ed., DSM-V) criteria for autism spectrum disorder [Frazier et al., 2014], the primary purpose of the current study was to establish the validity of the SRS with a sample of adults with autism spectrum disorder (N = 237). Correlational analyses indicated that SRS factors were highly associated with autism symptoms and behavioral measures, indicating concurrent and predictive validity. Multiple regression results demonstrated that SRS factors were differentially related to measures specific to social or behavioral domains, indicating convergent and discriminant validity. Implications for future research are discussed. Autism Res 2017, 10: 1663-1671. © 2017 International Society for Autism Research, Wiley Periodicals, Inc.

Executive Functioning Mediates the Effect of Behavioral Problems on Depression in Mothers of Children With Developmental Disabilities.

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.

Research needs and priorities for transition and employment in autism: Considerations reflected in a "Special Interest Group" at the International Meeting for Autism Research.

Research related to supports for adults with autism spectrum disorder (ASD) is under-developed. As an example, system and service development to support successful transition to adulthood and meaningful vocation for adults has received relatively little research scrutiny until recently, with practitioners and program developers lacking evidenceinformed approaches guiding service delivery. A Special Interest Group (SIG) was convened at the International Meeting for Autism Research in May 2014 and May 2015, with a focus on transitional and vocational issues in ASD. The SIG consisted of 120 international delegates, including self-advocates, family members, researchers, program and policy developers, practitioners, and interdisciplinary ASD trainees. Following a summary of the literature, subgroups of attendees were convened in smaller groups to identify research needs and priorities. International researchers facilitated these discussions with notes taken in each subgroup. Using a qualitative analytic approach, key themes across groups were identified. These key themes, outlined in this paper, address the identified need to (a) advance research capacity; (b) build employer capacity relative to employing persons with ASD; and (c) enhance support resources for adults with ASD and their families. Heightened research activity guiding practice and policy, community/employer engagement, and person and family-centered services were recommended. Implications for advancement and implementation are offered. Autism Res 2017, 10: 15-24. © 2016 International Society for Autism Research, Wiley Periodicals, Inc.

Characterizing Objective Quality of Life and Normative Outcomes in Adults with Autism Spectrum Disorder: An Exploratory Latent Class Analysis.

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.

Change in the Behavioral Phenotype of Adolescents and Adults with FXS: Role of the Family Environment.

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.

Contextual Factors Predict Patterns of Change in Functioning over 10 Years Among Adolescents and Adults with Autism Spectrum Disorders.

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.

Factors Associated with Subjective Quality of Life of Adults with Autism Spectrum Disorder: Self-Report Versus Maternal Reports.

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.

Postsecondary Expectations of High-School Students With Autism Spectrum Disorders.

This study examined the perceptions of adulthood among 31 high school students with autism spectrum disorder (ASD). We had two research aims: (1) to report students' postsecondary expectations in terms of school, work, friendships and living arrangement and (2) to describe how our sample defined adulthood. To better compare our sample's criteria of adulthood to the criteria traditionally endorsed in secondary schools, we used a directed content analysis approach. Data were derived from a semi-structured interview that questioned students about friendships, activities and the transition to adulthood. The majority of students expected to attain traditional markers of adulthood after high school; however, for some the pathways to achieving these outcomes were narrowly defined and perceived as a rigid, linear process. Independence, maturity and personal responsibility were the most highly endorsed characteristics of adulthood, followed by chronological age and traditional markers. Implications for transition planning and adult services are discussed.

Change in autism symptoms and maladaptive behaviors in adolescence and adulthood: the role of positive family processes.

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.

Technology-Aided Interventions and Instruction for Adolescents with Autism Spectrum Disorder.

The use of technology in intervention and instruction for adolescents with autism spectrum disorder (ASD) is increasing at a striking rate. The purpose of this paper is to examine the research literature underlying the use of technology in interventions and instruction for high school students with ASD. In this paper, authors propose a theoretical and conceptual framework for examining the use of technology by and for adolescents with ASD in school, home, and community settings. This framework is then used to describe the research literature on efficacy of intervention and instruction that utilizes technology. A review of the literature from 1990 to the end of 2013 identified 30 studies that documented efficacy of different forms of technology and their impact on academics, adaptive behavior, challenging behavior, communication, independence, social competence, and vocational skills.

The family context of autism spectrum disorders: influence on the behavioral phenotype and quality of life.

This article reports the findings from a longitudinal program of research examining the bidirectional influences of the family environment on the behavioral phenotype of autism, and describes a newly developed family psychoeducation program, titled Transitioning Together, designed to reduce family stress, address behavior problems, and improve the overall quality of life of adolescents with autism and their families. A case study is presented that illustrates how Transitioning Together helps reduce family stress and improve the overall quality of the family environment. The article concludes with a discussion of directions for future research on best practices in working with families of children, adolescents, and adults with autism.

The Roles and Needs of Families of Adolescents with ASD.

The transition of a student out of high school and into the adult world can be a stressful time for many families of high school students. This major life transition can be particularly challenging for students with ASD and their families. In this paper we first discuss the roles of families in the transition process for their son or daughter with ASD. Next, we present literature on the unique needs of families of adolescents with ASD during the transition to adulthood. Finally, we highlight current research on best practices for supporting transition-aged students and their families as well as discuss future directions for research and practice.

Engagement in vocational activities promotes behavioral development for adults with autism spectrum disorders.

This study examined the bidirectional relations over time between behavioral functioning (autism symptoms, maladaptive behaviors, activities of daily living) and vocational/educational activities of adults with autism spectrum disorders (ASD). Participants were 153 adults with ASD (M age = 30.2 years) who were part of a larger longitudinal study. Data were collected at two time points separated by 5.5 years. Cross-lag models were used, which accounted for stability over time while testing both directions of cross-lagged effects. Results suggested that greater vocational independence and engagement was related to subsequent reductions in autism symptoms and maladaptive behaviors, and improvements in activities of daily living. Relations between earlier behavioral variables (symptoms, behaviors, and activities of daily living) and later vocational independence were not statistically significant.

Evaluation of an activities of daily living scale for adolescents and adults with developmental disabilities.

BACKGROUND: Activity limitations are an important and useful dimension of disability, but there are few validated measures of activity limitations for adolescents and adults with developmental disabilities. OBJECTIVE/HYPOTHESIS: To describe the development of the Waisman Activities of Daily Living (W-ADL) Scale for adolescents and adults with developmental disabilities, and systematically evaluate its measurement properties according to an established set of criteria. METHODS: The W-ADL was administered among four longitudinally studied groups of adolescents and adults with developmental disabilities: 406 with autism; 147 with fragile-X syndrome; 169 with Down syndrome; and 292 with intellectual disability of other or unknown origin. The W-ADL contains 17 activities and each is rated on a 3-point scale (0 = "does not do at all", 1 = "does with help", 2 = "independent"), and a standard set of criteria were used to evaluate its measurement properties. RESULTS: Across the disability groups, Cronbach's alphas ranged from 0.88 to 0.94, and a single-factor structure was most parsimonious. The W-ADL was reliable over time, with weighted kappas between 0.92 and 0.93. Criterion and construct validity were supported through substantial associations with the Vineland Screener, need for respite services, caregiving burden, and competitive employment. No floor or ceiling effects were present. There were significant group differences in W-ADL scores by maternally reported level of intellectual disability (mild, moderate, severe, profound). CONCLUSIONS: The W-ADL exceeded the recommended threshold for each quality criterion the authors evaluated. This freely available tool is an efficient measure of activities of daily living for surveys and epidemiological research concerning adolescents and adults with developmental disabilities.

The use of the autism diagnostic interview-revised with a latino population of adolescents and adults with autism.

Research shows that Latinos are less likely to be diagnosed with autism than their non-Latino counterparts. One factor that may contribute to these differences is that autism diagnostic instruments have not been adapted for the Latino population. The present study compared scores from the Autism Diagnostic Interview-Revised for two groups: 48 Latino adolescents and adults with autism and a matched sample of 96 non-Latino Whites. There were no significant differences between the two groups in total impairments in social reciprocity or communication. However, lower levels of restrictive-and-repetitive behaviors were found among Latino adolescents and adults with autism compared to Whites. Findings suggest that there may be cultural equivalency in some domains, but others may warrant further exploration.

Adults with autism: outcomes, family effects, and the multi-family group psychoeducation model.

Although an increasing number of individuals with autism spectrum disorders are entering adulthood, currently there are few evidence-based programs for individuals later in the life course. In this paper we present an overview of recent research on outcomes for adolescents and adults with ASD and highlight the role of the family for individuals with ASD during the transition to adulthood. We also discuss multi-family group psychoeducation as a promising model for use with individuals with ASD who are transitioning to adulthood.

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.

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.