With the continuing increased incidence rate of autism spectrum disorder over the decades, there are increasing numbers of adults with autism who require varying levels of lifelong care, typically from parents. It is necessary to understand parents' lived experience of lifelong caregiving, and how their own aging process further impacts life quality. Furthermore, greater understanding of stressors, resources, appraisals, and coping among parent caregivers of children with "high functioning autism" who are transitioning into young adulthood is particularly necessary as services, needs, and experiences for both are nuanced due to functional status, deficits in the service system, and demographic disparities. Given lifespan aspects past research has not addressed, the study focused on development of a measure of parent accumulated stressors, and on interrelations of stressors, perceived social support, future time perspective, burden, satisfaction, and coping on health-related quality of life and meaning in life among 28 parents of young adults with autism. Although proposed quantitative analyses were not completed due to sample size, qualitative analyses on parent experiences and stressors revealed common themes of concern for child's future quality of life, complicated dynamics of providing help to their child overtime, and increased stress related to others' lack of understanding of their child. In total, 10 themes and multiple subthemes were identified in relation to aspects of accumulated stressors. Findings suggest parent stress with this specific population is complex, manifesting in nuanced ways at different life stages. Impacts of the COVID-19 pandemic are also explored, and implications for scientific advancement and clinical services are discussed.

ABSTRACT: The phenomenological study was conducted to investigate the experience of parental caregivers of adults with Asperger's syndrome. Bowen's Family Systems Theory provided a theoretical foundation for understanding the complex relationship between the role of the caregiver, the family unit, and the community. The family, as an interdependent system, is purposed to meet the diverse needs of its members. For children with an autism spectrum disorder, the supportive parental role often transitions into one of a long-term caretaker (Buescher et al., 2014). There is scant empirical information presented regarding the issues faced by this population as they enter middle and later adulthood. To address the gap in the literature this study gave attention to the role of parental caregiving, from a rural perspective, for individuals over age 23 with Asperger's syndrome, Ten caregivers addressed issues regarding the psychosocial impact of caregiving, Their relationships with the adult child, and survival with limited community supports. Themes from the study revealed the varied roles, losses, limited community supports, Themes from the study reveled the varied roles, losses, limited community support/resources, and the absence of understanding or empathy that beset the participants in the studio ad they journeyed through the lifecycle of adulthood with their children , Nevertheless, the caregivers shared a lifetime vow of commitment to their children and many appeared empowered by overcoming their various trials.

In the present phenomenological study, mothers of children with Autism Spectrum Disorder (ASD) were interviewed using semi-structured, open-ended interview questions. The purpose of this study was to explore the stressors and joys, and parental coping associated with having a child with ASD, before and after out-of-home placement. A total of 9 mothers, six from British Columbia and three from Alberta, participated in the study. The findings suggest that along with stressors, parents experienced a multitude of joys throughout their caregiving experiences. Also, joys had an impact on caregiver's stress-coping process. This study, therefore, expanded upon current states of knowledge on the adaptational function of joys to caregivers of individuals with chronic conditions. In light of the findings, modified stress-coping process model based on the work of Lazarus and Folkman (1984), Folkman (1997), and Pearlin et al. (1990; 1980) is proposed. Also, findings shed light on mothers' lived-experiences leading up to and after out-of-home placement, illuminating an understudied aspect of caregiving for children with ASD.

This dissertation study focuses on the underexplored area of autism spectrum disorder (ASD) and aging, recognizing the increasing number of individuals on the spectrum reaching older adulthood. Despite the lifelong nature of ASD, most of the research has been centered on children, leaving a significant gap in knowledge regarding the experiences and needs of aging individuals with ASD. Furthermore, the impact of the COVID-19 pandemic on this population adds an additional layer of complexity and importance. To address this gap, a concurrent nested mixed methods design was employed, utilizing both qualitative and quantitative data collection methods. Semi-structured interviews were conducted with aging autistic adults and their family members, while quantitative data from the 2018 Pennsylvania Autism Needs Assessment (PANA) provided additional context. This approach allows for a comprehensive understanding of the experiences and perspectives of this population, incorporating both subjective narratives and statistical data. The qualitative interviews were guided by an interview guide and focused on various aspects such as the challenges faced by aging autistic adults and their supporters, service access experiences, community participation, and the impact of the COVID-19 pandemic. The results of this study contribute to the limited literature on ASD and aging, shedding light on the unique needs and experiences of aging autistic individuals and their families. The findings provide valuable insights into topics such as stress, trauma, service access, community participation, and the impact of the COVID-19 pandemic. By integrating qualitative and quantitative data, this study offers a comprehensive understanding of the multifaceted issues surrounding ASD and aging. The insights gained from this study can inform the development of interventions, services, and policies tailored to meet the specific needs of this population. Additionally, it underscores the need for increased awareness and understanding of ASD beyond childhood, challenging prevailing myths and stereotypes and recognizing the valuable contributions that autistic individuals can make to society.

Keywords: Stress, Coping, Autism Spectrum Disorder, Caregiver

Autism spectrum disorder (ASD) is a developmental disorder marked by communication limitations and behavioral features that vary broadly across individuals. The identification of ASD has increased by approximately 30% since 2008. As the identification of ASD continues to increase, similarly so does the number of caregivers of children with ASD, making this an important, and growing population. Since children with ASD may have a unique phenotypic profile of behaviors caregivers of children with ASD often face increased levels of stress, and experience higher levels of stress compared to other populations, including caregivers of children of other developmental disabilities. Chronic stress is a known risk factor for a wide range of chronic diseases, including cardiometabolic and mental health outcomes. Chronic stress may also influence health behaviors such as smoking, alcohol use and physical activity through coping mechanisms. The occurrence of chronic diseases and their risk factors in caregivers of children with ASD has not been well studied. There is a need to further investigate specific child behaviors as correlates of caregiver health and health behaviors. This project included two studies. The first study examined stress in caregivers of children with ASD and focused on specific child behaviors, within a locally-recruited sample of N=116 caregivers of children with ASD aged 3-17 years. Caregivers completed the Autism Behavior Inventory-Short as a measure of child behaviors, and the Parent Stress Scale as a measure of total parenting stress. We used linear regression to determine the association between specific child behaviors and caregiver stress. We hypothesized that caregivers of children with higher levels of behavioral difficulties (social-communication, mental health, repetitive behaviors) will report higher levels of self-reported stress, compared to caregivers of children with fewer behavioral difficulties. More behavioral difficulties in each domain was associated with higher levels of parental stress. For the second study, data on health behaviors and health outcomes from the National Health Interview Survey 2016-2017 cycles were used to compare caregivers of children with ASD to caregivers of typically developing children and children with other disabilities (N=10,162). For the child, information on child's diagnosis was reported by the parent. For the parent, health risk behaviors and health outcomes were self-reported. We used logistic regression to determine effects and hypothesized that caregivers of children with ASD will report more adverse health behaviors (i.e., smoking, alcohol use, less physical activity) compared to caregivers of typically developing children and caregivers of children with other disabilities. We also hypothesized that caregivers of children with ASD will have more cardiometabolic outcomes (i.e., type 2 diabetes, obesity, hypertension, high cholesterol) and more mental health symptoms compared to caregivers of typically developing children and caregivers of children with other disabilities. Compared to typically developing caregivers, caregivers of children with ASD had higher odds of physical inactivity, smoking and tobacco use, and heavy drinking, though these relationships varied when compared to other disability groups. The effect estimates for these relationships also were of low magnitude and were relativity imprecise. Similar patterns of association were shown for health outcomes compared to caregivers of children with other disabilities. Overall, our findings suggest that it is the culmination of the child's phenotype that results in increased caregiver stress, rather than individual, unique behaviors. This may support the idea that is the total experience of all behaviors that is important, including those not required for an ASD diagnosis, but that are commonly shared with other developmental disorders. Furthermore, caregivers of children with ASD had more adverse health behaviors and outcomes compared to caregivers of typically developing children, but not when compared to other disability groups, though these estimates had low magnitude and were relatively imprecise. Caregiver stress should be considered for potential interventions to improve their health. Future studies should seek to better understand why child behaviors influence caregiver stress and how caregiver stress may influence health risk behaviors and health outcomes.