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The present study examined the transition component of the Individualized Education Program for 62 secondary students with autism. Plans were coded using a rubric adapted from Indicator 13 of the Individuals with Disabilities Education Improvement Act. Findings indicated a mean plan score of 10.5 out of 20.0, with a range of 3.0 to 20.0. Strengths were noted in Transition Services, with Course of Study and Transition Assessment as areas of relative need. Student characteristics--including adaptive behavior, IQ, and self-determination--were associated with components of transition plan quality. Plan quality differences were found based on diploma status and the quality of the school environment. Implications for supporting educators in writing and implementing quality transition planning are discussed.

Transitioning Together is a multi-family intervention designed to support families of adolescents on the autism spectrum as they prepare for the transition to adulthood. Questions remain regarding its wide-scale adoption and implementation in real-world settings such as high schools. We examined student, teacher, and school-level facilitators and barriers to adopting and implementing Transitioning Together at 30 public high schools across three US states that were participating in the intervention arm of a larger randomized trial, which provided training and coaching for implementation of comprehensive evidence-based autism programming. Seventeen of the 30 schools adopted Transitioning Together. Community socioeconomic status and pre-existing quality of programming for family involvement and transition planning significantly predicted intervention adoption. Thirteen of the 17 schools that adopted Transitioning Together did so with a high level of fidelity (>90%). The areas of fidelity that schools struggled with most related to session structure, facilitating problem-solving and dialogue, and collecting feedback from families. Findings highlight struggles and successes with real-world adoption of the intervention in its current form. Future research is needed to further examine how to facilitate adoption across public high schools and/or other service systems, while maximizing effectiveness, as well as reach to historically underserved autism spectrum populations.

We tested the efficacy of a comprehensive intervention program designed for high school students across the autism spectrum, the Center on Secondary Education for Students with Autism (CSESA) model, in a cluster randomized control trial involving 60 high schools in three states (California, North Carolina, Wisconsin), with implementation occurring over a 2-year period. We examined outcomes for the schools, students (N = 547), and families. At the conclusion of the study, CSESA schools had significantly higher program quality than the services-as-usual (SAU) schools. In addition, students in the CSESA schools had significantly higher total attainment of educational goals than students in SAU schools. There were not significant differences between the two groups on standardized assessment outcomes. We discuss implications for intervention implementation and future research with this population in the public school context.

Developmental disabilities (DD) research has depended on volunteer and clinical samples, with limited racial/ethnic diversity. This study focused on improving diversity and retention in DD research. The sample included 225 parents with a child with DD and 4,002 parents without children with DD from diverse racial/ethnic groups, drawn from Midlife in the United States, a national longitudinal study. Unexpectedly, parents of children with DD from diverse racial/ethnic groups were "more likely" to participate longitudinally than other groups. Relative participant payment was a factor that enhanced their likelihood of retention. This research illustrates how large national studies can be leveraged to increase representativeness and ongoing participation of diverse racial/ethnic groups, especially in combination with other factors, such as parenting a child with DD.

The present study examined the associations between networks of social relationships and psychological well-being among mothers of adolescents and adults with autism (n = 352) over a 12-year period of time. A structural equation modeling approach was used to delineate the relative impacts of network size and relationship diversity on maternal mental health, and to assess whether such effects are bidirectional. Mothers with more diverse relationships experienced reductions in depression and anxiety symptoms over time, and the psychological benefits of diversity remained after adjusting for network size. Results also suggest bidirectional links between network size, diversity, and maternal mental health. Research and clinical implications are discussed.

The purpose of the study was to examine the quality of high school programs for students with autism spectrum disorder in the United States. The Autism Program Environment Rating Scale--Middle/High School was used to rate the quality of programs for students with autism spectrum disorder in 60 high schools located in three geographic locations in the United States (CA, NC, and WI). Findings indicated that the total quality rating across schools was slightly above the adequate criterion. Higher quality ratings occurred for program environment, learning climate, family participation, and teaming domains. However, quality ratings for intervention domains related to the characteristics of autism spectrum disorder (e.g. communication, social, independence, functional behavior, and transition) were below the adequate quality rating level. Also, quality ratings for transition were significantly higher for modified (primarily self-contained) programs than standard diploma (primarily served in general education) programs. School urbanicity was a significant predictor of program quality, with suburban schools having higher quality ratings than urban or rural schools, controlling for race, school enrollment size, and Title 1 eligibility status. Implications for working with teachers and school teams that support high school students with autism spectrum disorder should include a targeted focus on transition programming that includes a breadth of work-based learning experiences and activities that support social-communication domains.

Services are critical for youth with autism spectrum disorder (ASD), especially during the transition to adulthood. Under the best of circumstances, though, it can be difficult to access needed adult services. With COVID-19, services were more difficult to obtain and retain. In this study, we explored parent perceptions of accessing new services and maintaining current services during the first year of the COVID-19 pandemic. Structured interviews were conducted with 65 parents of transition-aged youth (aged 16-26) with ASD living in three states (IL, TN, and WI) in the United States. None of the participants reported receiving new services during the pandemic, and many struggled to access services via online applications. In addition, participants reported that service suspensions and changes in modality (e.g., from in-person to telehealth) were spearheaded by professionals and not families. Participants, especially those in TN, were more likely to pay out-of-pocket for services during the COVID-19 pandemic to compensate for service disruptions. Implications for research and practice are discussed.

In this study, we examined trajectories of specific domains of behavior problems (i.e., attention problems, depression/anxiety, and aggressive behavior) from age 6 to 18 in a sample of 55 children with fragile X syndrome. We also examined autism status and early parenting as predictors of subsequent behavioral trajectories. We found that attention problems and aggressive behavior declined steadily from childhood through adolescence whereas anxious/depressed behavior demonstrated relative stability over the same period. Youth with highly flexible mothers displayed more optional trajectories of improvement in attention problems.

This study examined growth trajectories of teacher-reported adaptive behavior in a diverse sample of adolescents with autism spectrum disorder. The participants were 244 adolescents between the ages of 14 and 21 years who were assessed at up to four time points across two and a half years of high school. Demographic variables (age, sex, race, maternal education), phenotypic characteristics (intelligence quotient, autism severity) and school factors (location of the school, school quality) were collected. Growth mixture modeling was used to identify distinct classes of growth trajectories in communication, daily living skills, and socialization domains of adaptive behavior. Two distinct classes were identified for each domain. The first class had moderately low adaptive behavior scores and demonstrated growth of adaptive behavior over time and the second class had low adaptive behavior scores and did not demonstrate change over time. Adolescents within the moderately low adaptive behavior classes were younger at enrollment in the study, had higher IQs, and lower autism symptom severity. Logistic regressions were performed, and aspects of school quality predicted the likelihood of being in the moderately low classes above and beyond autism symptoms.

This study examined differences in mother-child relationship quality and parent-rated child behavior problems based on child verbal status (i.e., minimally verbal versus verbal) in mothers and their adolescent and adult children with autism spectrum disorder (n = 219 dyads; child M[subscript age] = 25.38 years, SD = 10.22). Relationship quality was assessed via parent-reported maternal burden and mother-child closeness, and coded speech samples ascertaining maternal critical and positive remarks regarding the child. Groups did not differ in relationship quality. The verbal group was more likely to display disruptive and socially inappropriate behaviors, but otherwise the groups did not differ in behavior problems. Verbal status moderated the relationship between behavior problems and negative (maternal burden, critical remarks) but not positive (mother-child closeness, positive remarks) aspects of relationship quality.

Many youth with autism spectrum disorder (ASD) face challenges accessing needed services as they transition to adulthood. The present study describes the development, feasibility and acceptability of a new intervention designed to teach parents of transition-aged youth with ASD about the adult service system and the most effective ways to access services and supports. As part of a randomized-controlled trial, the intervention--named ASSIST--was delivered to 91 participants in three states in the U.S. Results suggested that ASSIST is feasible and acceptable to participants. Though intended to be an in-person group-based program, due to COVID-19 restrictions ASSIST was primarily delivered online. Results and discussion explore the trade-offs and implications of these different treatment delivery modalities in relation to ASSIST.

This study investigated the bidirectional effects of change in maladaptive behaviors among adolescents and adults with fragile X syndrome (FXS) and change in their intergenerational family relationships over a 7.5-year period. Indicators of the intergenerational family relationship between premutation carrier mothers and their adolescent or adult son/daughter with FXS included a measure of the quality of the relationship, as well as descriptions provided by mothers of their relationship with their son/daughter (positive remarks, critical remarks). Maladaptive behaviors decreased, maternal positive remarks increased, and maternal critical remarks and relationship quality remained stable over time. Bidirectional effects of change were observed in predicting maladaptive behaviors and maternal positive remarks, although maladaptive behaviors more strongly predicted positive remarks than the reciprocal association. This research suggests prioritizing maladaptive behaviors in the context of family interventions.

Youth with autism spectrum disorder (ASD) face challenges accessing needed services as they transition to adulthood. Correlates of service access identified in the literature--such as family resources, race/ethnicity, or youth functioning--can be difficult to change and may not be feasible targets for intervention. This study focused on a potential contributor to service access that is malleable: parental advocacy. Specifically, we examined the association between parental advocacy activities and number of services among transition-aged youth with ASD, after accounting for indicators of youth functioning and family demographic variables (high school exit, co-occurring intellectual disability, social impairments, adaptive behaviors, race/ethnicity, state of residence, family income, and parental depression). Participants included 185 families of youth with ASD who are part of an ongoing randomized controlled trial. Data were collected at baseline (prior to intervention) via parental questionnaire and structured interview. Using hierarchical regression analyses, we found that parental advocacy activities were significantly and strongly associated with service receipt after controlling for youth functioning and family demographic factors. Youth whose parents are less involved in advocacy activities might be at-risk for service disparities. To close the gaps for service disparities, future interventions may target parental advocacy skills.

There is lack of consensus in the literature regarding sex differences in social outcomes for individuals on the autism spectrum. Furthermore, little research has focused on the social experiences of high school students with autism spectrum disorder (ASD) during the school day. Using a large racially/ethnically diverse sample of high school students with ASD receiving special education services (n = 547; 76 females, 471 males), we examined sex differences in social interactions of youth both during and after school. We also tested for sex differences in background and phenotypic characteristics including autism severity, IQ, adaptive behavior, and mental health. Results indicated few statistically significant differences between males and females in social interactions and phenotypic characteristics (including raw scores of autism symptom severity). However, analysis of standardized scores of autism symptoms suggested that symptom scores for females with ASD diverged more from same-sex peers in the normed sample than scores of males with ASD. Lack of sex difference in social participation for youth with ASD in this study stands in contrast to patterns of sex differences in the general population. Findings suggest that few differences between males and females with ASD, both in social participation and autism symptom severity, might result in females with ASD being more dissimilar to their same-sex peers than males with ASD. Implications of findings for understanding sex differences in ASD across the life course are discussed. LAY SUMMARY: The present study examined sex differences in social participation in a large, diverse sample of high school students with autism spectrum disorder (ASD). Males and females were very similar in their social interactions both at school and outside of school, based on reports by teachers and parents. Level of autism symptoms was also similar for males and females. However, standardized scores of autism symptoms, which take into account age and sex specific norms, suggested that females with ASD may have behaviors that are more divergent from their same-sex peers than males with ASD.

Vocational outcomes among transition-age youth receiving special education services are critically poor and have only incrementally improved since the implementation of the Workforce Innovation Opportunity Act. Few studies highlight whether interviewing may be critical to obtaining vocational outcomes such as competitive employment or internships. This study evaluated vocational interviewing and outcomes among 656 transition-age youth receiving special education pre-employment transition services from 47 schools. Results suggest 20.8% of these youth were currently employed, and 88.8% of these employed youth interviewed prior to obtaining their job, which is higher than anecdotal evidence suggests and speaks to the importance of job interview skills as an intervention target for special education pre-employment transition services. We discuss the implications and directions for further study.

Autistic transition age youth struggle with obtaining employment, and interviewing is a critical barrier to getting a job. We adapted an efficacious virtual reality job interview intervention to meet the needs of autistic transition age youth, called the Virtual Interview Training for Transition Age Youth. This study evaluated whether Virtual Interview Training for Transition Age Youth can be feasibly delivered in high school special education settings and whether Virtual Interview Training for Transition Age Youth improves job interview skills, job interview self-efficacy, job interview anxiety, and access to employment. Forty-eight autistic transition age youth received school-based pre-employment services as usual with Virtual Interview Training for Transition Age Youth, while 23 autistic transition age youth received services as usual only. Local teachers trained and supervised autistic transition age youth using Virtual Interview Training for Transition Age Youth. Participants reported Virtual Interview Training for Transition Age Youth was highly acceptable. Participants receiving services as usual and Virtual Interview Training for Transition Age Youth, compared to participants receiving services as usual only, had better job interview skills and lower job interview anxiety as well as greater access to jobs. Overall, Virtual Interview Training for Transition Age Youth appears to be effective at teaching job interview skills that are associated with accessing competitive jobs. Moreover, youth enjoyed Virtual Interview Training for Transition Age Youth and teachers feasibly implemented the tool within special education pre-employment transition services. Future research needs to better understand how autistic transition age youth from culturally diverse backgrounds and different social, behavioral, or mental health challenges may respond to Virtual Interview Training for Transition Age Youth.

About 30% of adults with autism are minimally verbal. Past research suggested that after age five, few gain verbal fluency, but studies have rarely investigated whether family environmental factors contribute to the acquisition of verbal fluency. The present study utilized data from the Autism Diagnostic Interview-Revised to compare changes in verbal fluency for 404 individuals with autism from childhood to adolescence and adulthood. Socioeconomic factors were examined across fluency groups (i.e., those who did/did not achieve verbal fluency). Findings indicated that fully 60% of those who were minimally verbal in early childhood acquired verbal fluency in adolescence and adulthood. Parent socioeconomic status differed across fluency groups, suggesting the importance of environmental factors for individual development.

Advocacy has long been heralded as a way to create change for individuals with intellectual and developmental disabilities (IDD) and their families. However, without an established measure, it is difficult to accurately characterize advocacy activities. Drawing from extant research, the Advocacy Activities Scale was developed to assess three domains of parent advocacy: advocacy for one's own children, advocacy for other families, and advocacy for systemic change. Factor analyses were conducted using data from two projects reflecting 382 parents of individuals with IDD from seven states and the District of Columbia. The scale confirmed the three moderately correlated domains of parent advocacy and demonstrated that the scale has high: reliability, validity, test-retest reliability, and moderate correlations with related measures. [ABSTRACT FROM AUTHOR]

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.

The broader autism phenotype refers to sub-clinical autism spectrum disorder characteristics involving socially and emotionally aloof and rigid personality traits and social communication difficulties. Relatives of individuals with autism spectrum disorder, including parents, evidence an increased rate of broader autism phenotype. The goal of this study was to evaluate the association between actor (one's own) and partner (their partner's) broader autism phenotype and the self-reported, observed, and physiological (i.e. electrodermal reactivity) markers of the quality of videotaped couple problem-solving interactions in 158 couples, who had a child with autism spectrum disorder (aged 5-12 years). The mean age of mothers was 39.79 (standard deviation = 5.06) years and the mean age of fathers was 41.77 (standard deviation = 6.02) years for fathers, and 36.6% of parents did not have a college degree. Actor-partner interdependence models, using structural equation modeling in analysis of moment structures, were conducted. Results indicated that parent broader autism phenotype was positively related to adverse couple problem-solving interactions across all measurement methods (observed codes, self-reported affect, and electrodermal reactivity). These effects were independent of child-related challenges. The effect of parent broader autism phenotype occurred through both actor and partner pathways and was strongest for father broader autism phenotype.

Autism spectrum disorder (ASD) is a lifelong neurodevelopmental disorder, impacting social communication and in some individuals, aspects of language such as vocabulary diversity. However, we have only a limited understanding of the verbal language abilities of adults with ASD. The present longitudinal study examined conversational language and its impact on vocational independence and friendship status measured 5 years later in a sample of 84 adults with ASD. After controlling for IQ and childhood language, vocabulary diversity (a measure of structural language) predicted vocational independence and having friendships, while topic maintenance (a measure of social communication) predicted friendships. These findings highlight the importance of adult conversational language abilities for adult outcomes and quality of life.

This study explored sex differences in employment, reasons for unemployment, benefits, and supports among a large, international sample of adults with autism spectrum disorder. The sample included 443 adults with autism spectrum disorder (60% female; 74% residing in the United States) who consented to be part of an autism research registry and completed an Internet survey. Outcome variables included current employment status, number of hours working, number of jobs in the past 5 years, reasons for unemployment, as well as the number of benefits received and the amount of financial support currently being received from families of origin. Using multiple regression models, we found that males and females were working at similar rates. Females were more likely than males to say that their unemployment was a result of choosing to withdraw from the labor market. Similar percentages of males and females reported receiving some form of benefits or family support, but of those receiving benefits/family support, males received more than females. These results are consistent with other studies finding subtle, but potentially important sex differences in life-course outcomes of individuals with autism spectrum disorder.

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.

Participatory action research methodologies may empower and protect marginalized individuals; however, they remain underutilized. Limited studies have investigated the impact of participatory action research, specifically on individuals with intellectual disability (ID). This study examines (1) the perspectives of co-researchers with ID on their involvement in the research process and (2) the feasibility of their inclusion based on perspectives of research staff (academic faculty and graduate students without ID). Three co-researchers with ID were interviewed regarding their research participation. Thematic analysis of interviews identified four themes: (1) "Shared Experience of Disability," (2) "Teaching and Guidance," (3) "Acquisition of Skills and Knowledge," and (4) "Value of Participation." Research staff reviewed field notes and identified benefits and challenges to feasibility of including co-researchers with ID. Inclusion of co-researchers with ID was found to be both meaningful and feasible.

Parents of children with autism spectrum disorders are generally known to experience elevated levels of stress and poorer psychological well-being. To provide treatments and resources that most effectively support parent mental health, it is critical to understand how parents' connections with various networks and systems impact their well-being. This study examined the relationship between the psychological well-being of mothers of adolescents with ASD (n = 20) and their systems of support from an ecological systems theoretical framework. Findings indicated that most connections across mothers' ecosystems were strong in nature. However, the presence of strong connections was not significantly related to psychological well-being. In contrast, stressful/weak connections were significantly related to elevated levels of depressive symptoms, perceived stress, and sense of burden.

Although services are critical for many transition-aged youth, it is unclear the extent to which autistic youth participate in decisions about their services. By exploring the perceptions of autistic youth about their role in services, interventions can be developed to improve their participation. In this study, we interviewed 43 transition-aged youth with autism to explore their involvement in decisions about services. Most youth reported not being involved in decision making about the types and modalities of disability services. When youth were involved in decisions, the services were often related to education. Although youth reported that their parents typically spearheaded decisions about services, youth also reported that their parents often listened to their input. Implications for research, policy, and practice are discussed. [ABSTRACT FROM AUTHOR]

Parents of individuals with autism face many challenges in accessing appropriate services and supports for their offspring. Parents also play vital roles in advocating for their offspring's rights and needs. Furthermore, despite advocacy programs becoming increasingly common, it remains unclear how to best foster advocacy among parents of individuals with autism. To this end, we examined the associations among knowledge, empowerment, and three types of advocacy activities (i.e. individual, peer, and systemic) among 185 parents of transition-aged youth with autism using structural equation modeling. Results show that empowerment has a greater impact on advocacy than knowledge. Significant direct and indirect effects of individual advocacy activities on peer advocacy activities, and peer advocacy activities on systemic advocacy activities were also confirmed. Implications for research and practice are discussed. Parents of individuals with autism face many challenges in finding appropriate services and support for their children, and they also play an important role in advocating for their children's rights and needs. Despite the increasing availability of advocacy programs, it is still uncertain how to best encourage parents to advocate for their children. This study explored the connection between parents' knowledge and sense of empowerment, and how these factors relate to three types of advocacy activities (i.e. individual, peer, and systemic). The findings reveal that feeling empowered has a greater impact on advocacy than simply having knowledge. In addition, the study found that individual advocacy correlates to more peer advocacy, which also correlates to more systemic advocacy. These results can help researchers and professionals to better develop programs to increase parent advocacy and, in turn, help improve the lives of individuals with autism. [ABSTRACT FROM AUTHOR]

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.

This study examined vocational/educational disruption in the 2-3 years after high school for 36 youth with autism spectrum disorder (ASD). Data were collected three times from parents: during youth's last year of high school and two times after high school exit. Data were coded into categories indicating any versus no disruptions in postsecondary vocation/education, and group differences in individual (behavior problems, IQ, adaptive behavior, autism severity, stress reactivity) and family (parent depression, anxiety, quality of life; family income and climate) factors were examined. One-half of youth had experienced a postsecondary vocational/educational disruption; parents of those with a disruption had more depressive and anxiety symptoms and lower quality of life while their son/daughter was still in high school.

We examined daily couple experiences in 174 couples who had a child with autism spectrum disorder (ASD) relative to 179 couples who had a child without disabilities and their same-day association with parent affect. Parents completed a 14-day daily diary in which they reported time with partner, partner support, partner closeness, and positive and negative couple interactions and level of positive and negative affect. One-way multivariate analyses of covariance and dyadic multilevel models were conducted. Parents of children with ASD reported less time with partner, lower partner closeness, and fewer positive couple interactions than the comparison group. Daily couple experiences were more strongly associated with parent affect in the ASD than comparison group. Findings have implications for programs and supports.