Age-Related Changes in Functional Skills and Daily Life Task Management Among Autistic Youth.

IMPORTANCE: Autistic youth who graduate with a high school diploma may experience challenges in acquiring functional skills for everyday independence. Few studies have focused on how their functional and self-management skills change during the transition to adulthood. OBJECTIVE: To examine cross-sectional differences and longitudinal changes in the functional and self-management skills of transition-age autistic youth. DESIGN: Exploratory longitudinal study (18-mo follow-up). SETTING: Community. PARTICIPANTS: Autistic high school students who graduated with a high school diploma and their parents (N = 50). OUTCOMES AND MEASURES: Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (ASD). RESULTS: Older youth (ages 18-20 yr) had significantly lower normative Social/Cognitive and Responsibility domain scores (i.e., self-management) than youth ages 14-17 yr. Approximately 2 yr later, youth in both age groups significantly improved in scaled scores on the Daily Activities and Responsibility domains. CONCLUSIONS AND RELEVANCE: Autistic youth's functional and self-management skills fell below those of nonautistic peers; however, these skills do change over time and are therefore appropriate targets for intervention. Plain-Language Summary: The findings of this study highlight the importance of focusing on the functional and self-management skills of autistic youth as part of their transition to adulthood. Occupational therapists can play a valuable role in helping autistic youth to achieve independence as adults by assessing their functional needs and strengths and by providing client-centered interventions.

Describing Outcomes in Autistic Young Adults One Year After High School Graduation.

PURPOSE: Research documents poor outcomes for autistic adults in the domains of employment, independent living, and social relationships. Measurement and sample limitations in prior studies may have amplified past estimates of poor outcomes. The goal of the current study was to improve upon past approaches and to create and describe a measurement approach to capture adult outcomes that reflected the context of young adulthood and the perspectives of autistic individuals, pairing objective outcome indicators with subjective satisfaction indicators. METHODS: Thirty-six autistic young adults (mean age 19.8 years) and a parent completed self-report surveys. Using these data, we defined an objective and subjective (i.e., satisfaction) outcome indicator in each of three domains: productivity (employment or post-secondary education), social well-being (frequency of contact with friends), and living situation (autonomy). RESULTS: Three-quarters of young adults experienced at least 5 out of 6 positive outcomes. Over 90% were engaged in school, work, or a structured transition program, and an equal percentage were satisfied with their productivity activity. Over three-quarters of adults had a good amount of contact with friends and were satisfied with their social life. Most young adults had a moderate level of autonomy in their daily lives, and all were satisfied with their living situation. CONCLUSION: Tailoring outcome measurement approaches specifically for autistic young adults provided a more optimistic portrayal of outcomes than previously noted in the literature. The approach used better reflects a neurodiversity approach and may be useful for evaluating the effectiveness of transition services or interventions.

Siblings FORWARD: Development of a New Program to Engage Siblings of Autistic Adults in Future Planning.

The adult service system does not adequately meet the needs of autistic adults, prompting families to continue their supportive roles. Siblings frequently assume these roles when parents are no longer able to do so, often without preparation or planning. We received feedback on the proposed Siblings FORWARD (Focusing on Relationships, Well-being, and Responsibility aheaD) program concept, which would involve 6-7 individualized sessions over ~ 3 months and would facilitate siblings' proactive future planning involvement with their autistic family member. Siblings FORWARD would bolster siblings' skills, knowledge, and self-efficacy to engage in future planning with their family members. We report on perceived need for a sibling program and feedback on the proposed program goals, content, and design. Adult siblings (n = 13), autistic adults (n = 6), and service providers (n = 17) participated in individual interviews or focus groups. Data were systematically coded and analyzed using directed content analysis. Siblings, autistic adults, and service providers expressed high enthusiasm for the Siblings FORWARD concept. Participants indicated that the combination of skill-building and education would promote continued, collaborative future planning that persists after the formal program ends. They had positive impressions of the program concept, goals, content, and design, including the telehealth delivery model. Siblings and autistic adults reported wanting to participate in Siblings FORWARD. This uniform, strong enthusiasm for the Siblings FORWARD concept warrants moving forward to examine preliminary acceptability and feasibility. Ultimately, greater sibling involvement in family future planning may improve autistic adults' functioning through improved continuity of care and support across adulthood.

Metacognition Mediates the Effect of Social Communication and Internalizing Behaviors on Self-management of Daily Life Tasks for Diploma-Track Autistic Youth.

Social communication and executive functioning challenges as well as co-occurring anxiety/depression may make acquiring the skills needed to manage daily life tasks difficult for diploma-track autistic youth, thus limiting their participation in adult roles. This study describes the associations between executive function, social communication skills, and internalizing behaviors on task management in academically capable autistic adolescents (n = 46) using multiple regression with mediator analysis. The three predictors and youth age explained a moderate amount of variance in task management. Metacognition mediated the effect of social communication skills and internalizing behaviors on task management. Relations between underlying factors that influence self-management of daily life tasks are complex, supporting the need for multifaceted assessment and intervention approaches for academically capable autistic youth.

Self-management of daily life tasks in diploma-track youth with disabilities.

PURPOSE: Youth with disabilities who graduate with a regular high school diploma often continue to have difficulties in their daily functioning that ultimately impact adulthood outcomes. To better understand these functional difficulties and determine how best to address them, it is important to distinguish deficits in discrete skills from difficulty organizing skills to self-manage complex tasks associated with adult roles. The purpose of this study was to explore the extent to which challenges in social, executive function and behavior management factors relate to these two aspects of daily functioning. METHODS: This is a secondary analysis of the National Longitudinal Transition Study 2 funded by the United States Department of Education. The direct and indirect associations between youth underlying factors and self-management of daily life tasks (SMDLT) versus discrete functional skills were modelled using structural equation modelling. RESULTS: A model incorporating social skills, communication, and behavior regulation explained 55% of the variance in SMDLT. In contrast, the model predicting discrete functional skills had fewer significant associations and described less variance (37%) in the outcome. CONCLUSIONS: Findings suggest that using measures of SMDLT and designing targeted interventions for SMDLT might help improve participation in independent living and productivity for diploma-track youth with disabilities.Implications for rehabilitationSuccessful transition from high school to adult roles requires the ability to self-manage the daily life tasks required for those roles, such as employment, post-secondary education, and independent living.The ability to self-manage daily tasks is distinct from mastery of discrete functional skills and should be assessed with measures that uniquely examine this domain.Social and communication skills, executive functioning, and behavioral regulation, are important contributors to the ability to self-manage life tasks for diploma-track youth with disabilities and should be incorporated into multifaceted interventions.Interventions to improve self-management of tasks should include teaching strategies and practice coordinating underlying skills in flexible ways that meet the varying demands of tasks and diverse environments.

Preparation for Adulthood: Shifting Responsibility for Management of Daily Tasks From Parents to Their Children.

IMPORTANCE: Limited research has described the timing of acquisition of the broad range of skills required for the transition to adulthood. OBJECTIVE: To describe the timing of the shift of responsibility for daily tasks from parent to child. DESIGN: This study used an existing data set of parent responses to 49 items in the Responsibility domain of the Pediatric Evaluation of Disability Inventory Computer Adaptive Tests. PARTICIPANTS: A U.S. nationally representative sample of 2,205 typically developing children and youth ages 0 to 20 yr. OUTCOMES AND MEASURES: Descriptive analyses focused on two ages: (1) starting age (when >50% of parents reported their child was taking at least some responsibility for a task) and (2) full responsibility age (when >50% of parents reported their child was taking full responsibility for the task). RESULTS: The process of shifting responsibility for daily life tasks from parent to child typically occurred over a long period. Many task items had an interval of 5 yr from starting age to full responsibility age; the longest interval was 15 yr. Youth began assuming responsibility for more complex tasks and tasks that involved more risk at ages 10 to 15. CONCLUSIONS AND RELEVANCE: Results can serve as a reference for the timing of the transition to greater self-management of daily life tasks across childhood and adolescence. Timing of responsibility shifts may reflect a combination of development of underlying capacities and social transitions. Executive functioning may be especially relevant for management of the more complex tasks required in daily life in adulthood. WHAT THIS ARTICLE ADDS: The transfer of responsibility for managing tasks of daily life from parents to children often extends over a period of many years. Clinicians may find the results helpful when discussing the future with parents of young people with disabilities and other chronic conditions and the tasks that their children must learn to manage for independent living as an adult.

Identifying School-Based Factors that Predict Employment Outcomes for Transition-Age Youth with Autism Spectrum Disorder.

There is a growing need to provide appropriate services to help students with autism spectrum disorder (ASD) transition to employment. Limited research has investigated what aspects of support should be prioritized when preparing youth with ASD for employment. By conducting structural equation modeling using a nationally-representative dataset on high school students receiving special education services (NLTS-2), this study examined the malleable predictors of employment during the transition and developed a model to examine the relationships between predictors and employment outcomes. The findings suggested two pathways for youth with ASD. For youth with higher daily functioning skills (DFS), academic performance mediated the relationship between parent participation and employment. For youth with lower DFS, school-based transition supports was the key mediator.

Variables Associated With Shift of Responsibility for Daily Tasks From Parents to Children With and Without Disabilities.

IMPORTANCE: No study has directly investigated which variables are associated with the shift of responsibility for managing daily tasks from parent to child in the transition to adulthood. OBJECTIVE: To examine characteristics associated with responsibility for managing daily life tasks in youth with and without disabilities. DESIGN: A secondary data analysis of parent-report data on typically developing (TD) youth and youth with disabilities. SETTING: An online panel that has regularly participated in online surveys. PARTICIPANTS: A nationally representative sample of 2,205 TD U.S. children and youth, ages 0 to 20 yr, 11 mo (about 100 children per age year) and a sample of 617 children and youth with disabilities, ages 0 to 20 yr, 11 mo. OUTCOMES AND MEASURES: The dependent variable was the Responsibility domain scaled score (from the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test), which reflects the extent to which responsibility for daily tasks has shifted from parent to youth. RESULTS: Youth with higher levels of responsibility were older in age, reported to be more focused, and youngest in birth order (TD, R 2 = .79; disability, R 2 = .35). Youth with developmental delay, intellectual disability, autism spectrum disorder, or orthopedic or movement impairments had assumed less responsibility. CONCLUSIONS AND RELEVANCE: Other personal characteristics in addition to disability may have important influences on parents' decision making as they prepare their children to manage daily life tasks. WHAT THIS ARTICLE ADDS: Clinicians who work with adolescents in the process of transition to adulthood need to consider the potential influence of the personal characteristics, such as birth order and child temperament, on preparation for adulthood.

Improving the Validity and Generalizability of Adult Autism Research Through Incorporating Family and Cultural Contexts.

The relatively nascent empirical knowledge base regarding autism in adulthood provides an opportunity to adopt a contextual approach that conceptualizes autism features, outcomes, and supportive services as interactions between the characteristics of the condition and contextual factors across the life course. Although a contextual approach encompasses many aspects of a person's identity and social ecology, we focus here on the closely interrelated family and cultural contexts, which have been poorly integrated into adult autism research. We argue that designing studies with a priori attention to context (e.g., family and culture) will improve the relevance and comprehensiveness of findings, which in turn will improve construct validity and provide a more accurate understanding of autism-related outcomes in adulthood. Similarly, designing and/or selecting measures that have been validated with culturally and linguistically diverse samples will improve the utility of findings and reduce spurious or null effects. More contextually informed methodologies will lead to improved generalizability and practical applications of findings. We offer concrete guidance regarding how to increase the social ecological perspective within adult autism research as it relates to study conceptualization, methodology, and measurement.

The Sisters' Advantage? Broader Autism Phenotype Characteristics and Young Adults' Sibling Support.

Siblings often oversee the well-being of an adult with autism spectrum disorder (ASD). The current study contributes to the literature by examining correlates of support provided to siblings in young adulthood in the context of the broader autism phenotype (BAP). Young adults (n = 866; Mage = 25.43, SD = 2.54; 55% female) reported on support provided to and the BAP characteristics of 1198 different siblings (Mage = 28.56, SD = 8.87; 50% female). Findings showed that young adults provided more emotional and practical support to sisters that they perceived to be higher in BAP characteristics. These findings suggest that sisters who have characteristics associated with ASD may be at an advantage in receiving support.

Parents' future visions for their autistic transition-age youth: Hopes and expectations.

Researchers have documented that young adults with autism spectrum disorder have poor outcomes in employment, post-secondary education, social participation, independent living, and community participation. There is a need to further explore contributing factors to such outcomes to better support successful transitions to adulthood. Parents play a critical role in transition planning, and parental expectations appear to impact young adult outcomes for autistic individuals. The aim of this study was to explore how parents express their future visions (i.e. hopes and expectations) for their autistic transition-age youth. Data were collected through focus groups and individual interviews with 18 parents. Parents' hopes and expectations focused on eight primary domains. In addition, parents often qualified or tempered their stated hope with expressions of fears, uncertainty, realistic expectations, and the perceived lack of guidance. We discuss our conceptualization of the relations among these themes and implications for service providers and research.

Adult Siblings Who Have a Brother or Sister with Autism: Between-Family and Within-Family Variations in Sibling Relationships.

Prior research on the sibling relationship in the context of autism spectrum disorder (ASD) has included only one sibling per family. We used multi-level modeling to examine aspects of the sibling relationship in 207 adults who have a brother or sister with ASD from 125 families, investigating variability in sibling relationship quality and pessimism within and between families. We found that there was greater variability in aspects of the sibling relationship with the brother or sister with ASD within families than between families. Sibling individual-level factors were associated with positive affect in the sibling relationship, while family-level factors were associated with the sibling's pessimism about their brother or sister's future. The findings illustrate the unique experiences of siblings within families.

Affect and Incident Participation Restriction in Adults With Knee Osteoarthritis.

OBJECTIVE: Participation restriction, common among people with knee osteoarthritis (OA), may be influenced by affect. We examined the risk of incident participation restriction over 84 months conferred by positive and negative affect among people with knee OA. METHODS: Participants were from the Multicenter Osteoarthritis Study and had or were at high risk of knee OA. Participation restriction was measured using the Instrumental Role Limitation subscale of the Late-Life Disability Index, and affect was measured using the positive affect and depressed mood subscales of the Center for Epidemiologic Studies Depression Scale. Robust Poisson regression was used to calculate the risk of incident participation restriction over 84 months conferred by combinations of low and high positive and negative affect, adjusting for covariates. RESULTS: Of 1,810 baseline participants (mean age 62.1 years, 56% female), 470 (26%) had incident participation restriction over 84 months. Participants with low positive affect had 20% greater risk of incident participation restriction than those with high positive affect; participants with high negative affect had 50% greater risk of incident participation restriction compared to those with low negative affect. Participants with both low positive and high negative affect had 80% greater risk of incident participation restriction compared to other combinations of positive and negative affect. CONCLUSION: Low positive and high negative affect, both alone and in combination, increase the risk of participation restriction among adults with knee OA. Efforts aimed at preventing participation restriction in this population should consider these mood states.

Perceived Community Environmental Factors and Risk of Five-Year Participation Restriction Among Older Adults With or at Risk of Knee Osteoarthritis.

OBJECTIVE: Older adults with knee osteoarthritis (OA) who live in environments with mobility barriers may be at greater risk of developing participation restrictions, defined as difficulties in engagement in life situations. We investigated the risk of participation restriction over 5 years due to self-reported environmental features among older adults with knee OA. METHODS: Participants from the Multicenter Osteoarthritis (MOST) Study self-reported participation at baseline, 30 months, and 60 months using the instrumental role subscale of the Late Life Disability Index (LLDI). Data on self-reported environmental features were from the Home and Community Environment questionnaire administered in the MOST Knee Pain and Disability study, an ancillary study of MOST. The relative risks (RRs) of developing participation restriction at 60 months, indicated by an LLDI score <67.6 out of a possible 100, due to reported high community mobility barriers and high transportation facilitators, were calculated using robust Poisson regression, adjusting for covariates. RESULTS: Sixty-nine of the 322 participants (27%) developed participation restriction by 60 months. Participants reporting high community mobility barriers at baseline had 1.8 times the risk (95% confidence interval [95% CI] 1.2-2.7) of participation restriction at 60 months, after adjusting for covariates. Self-report of high transportation facilitators at baseline resulted in a reduced but statistically nonsignificant risk of participation restriction at 60 months (RR 0.7, 95% CI 0.4-1.1). CONCLUSION: Higher perceived environmental barriers impact the risk of long-term participation restriction among older adults with or at risk of knee OA. Approaches aimed at reducing the development of participation restrictions in this population should consider decreasing environmental barriers.

The Distinctive Features of a Feasibility Study: Objectives and Guiding Questions.

In this article, we highlight the distinctive features of a feasibility study, identify the main objectives and guiding questions of a feasibility study, and illustrate the use of these objectives. We synthesized the research methods literature related to feasibility studies to identify five overarching objectives of feasibility studies that focus on social and behavioral interventions. Feasibility studies are designed to answer the overarching question: Can it work? The main objectives of feasibility include the assessment of recruitment capability and resulting sample characteristics, data collection procedures and outcome measures, acceptability of the intervention and study procedures, resources and ability to manage and implement the study and intervention, and preliminary evaluation of participant responses to the intervention. For each objective, we identified follow-up questions designed to assist the researchers to understand barriers to the ultimate success of the research.

Media use among adolescents with autism spectrum disorder.

This study explores how adolescents with autism spectrum disorder (ASD) use media, and the factors associated with their media use. A total of 91 adolescents with ASD and their parents completed mail-based surveys. In all, 78% of the adolescents with ASD watched television (approximately 2 h/day), and 98% used computers (approximately 5 h/day) on any given day. They most frequently watched cartoons, played computer or video games that involved shooting, and visited websites that contained information on video games. Adolescents with ASD who watched television with parents reported more positive parent-child relationships. Adolescents with ASD who visited social networking websites or received emails from friends reported more positive friendships. The findings help us understand media-use habits of adolescents with ASD and suggest areas for future research.

Social participation among young adults with an autism spectrum disorder.

Investigating social participation of young adults with an autism spectrum disorder (ASD) is important given the increasing number of youth aging into young adulthood. Social participation is an indicator of life quality and overall functioning. Using data from the National Longitudinal Transition Study 2, we examined rates of participation in social activities among young adults who received special education services for autism (ASD group), compared to young adults who received special education for intellectual disability, emotional/behavioral disability, or a learning disability. Young adults with an ASD were significantly more likely to never see friends, never get called by friends, never be invited to activities, and be socially isolated. Among those with an ASD, lower conversation ability, lower functional skills, and living with a parent were predictors of less social participation.

Friendship characteristics and activity patterns of adolescents with an autism spectrum disorder.

This study compared perceptions of adolescents' friendships between adolescents with an autism spectrum disorder (ASD) and their parents, examined factors associated with friendship qualities, and investigated the adolescents' reports on the activities they did with friends and how activity patterns differed by gender. Ninety-one adolescents with an ASD and their parents completed mail-based surveys during the summer months. Adolescents with an ASD identified more friends than did their parents, but they agreed on the friends' characteristics. About half of the adolescents spent an average of 4 hours per day with friends during the summer months. Male adolescents with an ASD most frequently played video games with friends, whereas females most frequently had conversations with friends. The findings suggest that adolescents with an ASD and their parents identify different peers as the adolescent's friends. The findings also reveal similarities and differences in friendships between adolescents with an ASD and typically developing adolescents.

A new approach to the measurement of adaptive behavior: development of the PEDI-CAT for children and youth with autism spectrum disorders.

The use of current adaptive behavior measures in practice and research is limited by their length and need for a professional interviewer. There is a need for alternative measures that more efficiently assess adaptive behavior in children and youth with autism spectrum disorders (ASDs). The Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT) is a computer-based assessment of a child's ability to perform activities required for personal self-sufficiency and engagement in the community. This study evaluated the applicability, representativeness, and comprehensiveness of the Daily Activity, Social/Cognitive, and Responsibility domains for children and youth with an ASD. Twenty professionals and 18 parents provided feedback via in-person or virtual focus groups and cognitive interviews. Items were perceived to represent relevant functional activities within each domain. Child factors and assessment characteristics influenced parents' ratings. In response to feedback, 15 items and additional directions were added to ensure the PEDI-CAT is a meaningful measure when used with this population.

Participation in social activities among adolescents with an autism spectrum disorder.

BACKGROUND: Little is known about patterns of participation in social activities among adolescents with an autism spectrum disorder (ASD). The objectives were to report nationally representative (U.S.) estimates of participation in social activities among adolescents with an ASD, to compare these estimates to other groups of adolescents with disabilities, and examine correlates of limited social participation. METHODS AND FINDINGS: We analyzed data from wave 1 of the National Longitudinal Transition Study 2, a large cohort study of adolescents enrolled in special education. Three comparison groups included adolescents with learning disabilities, mental retardation, and speech/language impairments. Adolescents with an ASD were significantly more likely never to see friends out of school (43.3%), never to get called by friends (54.4%), and never to be invited to social activities (50.4%) when compared with adolescents from all the other groups. Correlates of limited social participation included low family income and having impairments in conversational ability, social communication, and functional cognitive skills. CONCLUSIONS: Compared with prior research, our study significantly expands inquiry in this area by broadening the range of social participation indicators examined, increasing the external validity of findings, focusing on the under-studied developmental stage of adolescence, and taking an ecological approach that included many potential correlates of social participation. There were notable differences in social participation by income, a dimension of social context seldom examined in research on ASDs.