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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Siblings of individuals with an autism spectrum disorder: sibling relationships and wellbeing in adolescence and adulthood.

We investigated sibling relationships and wellbeing in adolescents and adults with a sibling with an autism spectrum disorder (ASD). Adolescents engaged in more shared activities than did adults. Adolescents reported greater social support, greater use of emotion-focused coping strategies, and less use of problem-focused coping than adults. In adulthood, females with a sister with ASD reported the most positive affect in the sibling relationship and men with a sister with ASD the least. Adolescents engaged in more shared activities and reported more positive affect in their sibling relationship when their sibling with ASD had fewer behavior problems; greater use of problem-focused coping buffered the negative effects of behavior problems on sibling engagement. For adults, more shared activities were observed when the sibling with ASD was younger in age and had fewer behavior problems; greater positive affect in sibling relationships was predicted by greater parental support.

Household task participation of children with and without attentional problems.

Children with attention deficit/hyperactivity disorder (ADHD) often demonstrate problems in their participation in family occupations, such as household tasks, due to their needs for assistance and their behavior. Because participation in household tasks is part of family life and may be one way that families prepare children for adult roles, it is important to have a better understanding of the nature and extent of these difficulties. Forty-four parents of children in grades three through five (22 who had a child with ADHD and 22 whose child had no disabilities) completed the Children Helping Out: Responsibilities, Expectations, and Supports (CHORES) measure to provide quantitative and qualitative information about their child's participation in household tasks. Children with ADHD did not differ significantly from the comparison group in their frequency of participating in household tasks. Children with ADHD, however, required significantly more assistance with the tasks than did the comparison group. The results have implications for family occupations and children's occupational development.

Factors associated with participation of children with and without ADHD in household tasks.

Children's preparation for adult roles and independent living occur largely through participation with their families in home routines including household tasks. This preparation may involve learning related to family roles, socialization, and occupational performance. This study was designed to explore the extent to which child, environmental, and task factors are associated with household task participation by school-aged children, 9 to 11 years of age, with and without attention deficit/hyperactivity disorder (ADHD). Forty-four parents of children with and without ADHD completed a series of measures that examined family routine frequency and importance, parenting stress, parenting sense of competence, and a measure of their children's participation in household tasks. Child's age, the presence of an older sibling, and the importance of family routines were significant predictors of the number of household tasks performed by children. Diagnosis of ADHD, the presence of an older sibling, and parental stress were significant predictors of the amount of assistance the children required to do the household tasks.

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.

Change in autism symptoms and maladaptive behaviors in adolescents and adults with an autism spectrum disorder.

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.

Extreme sensory modulation behaviors in toddlers with autism spectrum disorders.

This study examined the incidence of extreme sensory modulation behaviors in toddlers with autism spectrum disorders (ASD) and investigated the consistency of sensory information across measures. Parent report of sensory behaviors in 101 toddlers with ASD was compared with 100 toddlers who were typically developing matched on chronological age and 99 additional infants or toddlers matched on mental age. Measures included the Infant/Toddler Sensory Profile, Infant-Toddler Social Emotional Assessment, Autism Diagnostic Interview-Revised, and Autism Diagnostic Observation Schedule-Generic. Toddlers with ASD were most distinct from typically developing groups in their high frequency of underresponsiveness and avoiding behaviors and their low frequency of seeking. Within the toddlers with ASD, there were significant associations across sensory parent report measures, but parent report was not correlated with clinical observation. Findings point to the early onset of an extreme sensory profile in ASD. Occupational therapists need to assess multiple domains of sensory behaviors to accurately identify the needs of toddlers with ASD.

Can we differentiate sensory over-responsivity from anxiety symptoms in toddlers? perspectives of occupational therapists and psychologists.

Suppose a toddler becomes distressed after hearing a loud noise or when getting messy; are these indicators of sensory over-responsiveness or indicators of anxiety? There is little evidence regarding the distinction between sensory over-responsivity and anxiety disorders in toddlers. This construct validity study examined differences between occupational therapists' and psychologists' judgments of behaviors as representing sensory processing disorders (SPD) versus anxiety disorders. Twenty-four occupational therapists and 25 psychologists completed a mailed survey, rating items from sensory and anxiety scales as representing sensory and/or anxiety disorders in toddlers, and analyzing cases of toddlers with these disorders. Occupational therapists were more likely to rate items as representing SPD than psychologists, and occupational therapists were more certain of the distinction of the sensory scales from anxiety. For the case designed to present a general anxiety disorder and the one designed to present sensory over-responsivity, more occupational therapists diagnosed as sensory over-responsive, while more psychologists diagnosed with a general anxiety disorder. The overlap in judgments of sensory over-responsivity and anxiety supports the notion that these constructs in part reflect different professionals' perspectives upon behaviors as well as the difficulty in distinguishing these constructs in toddlers.