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.

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.

In this qualitative study, five caregivers of people with Asperger's Syndrome described their challenges and the resilience factors that assisted them in maintaining wellbeing. There is little research on this population; the challenges faced and their resilience factors. Challenges were explored across the lifespan, through key diagnostic criteria and clinical features of the condition. Resilience factors explored included psychological, relational, environmental and behavioural qualities. Their experiences in these areas were compared to literature on caregivers of people with Asperger's Syndrome and Autism Spectrum Disorders. Key themes of challenges that emerged were grief and challenges throughout the developmental stages, difficulties in accessing helpful services, reduced eligibility and access to services compared to other populations and facing judgement, criticism and blame from some professionals, family members and community members. Key resiliency themes emerged within internal and external categories. Internalised factors included having a positive self-identity, having positive attitudes and using spirituality and religion to make healthy meanings of circumstances. Important externalised behavioural factors identified were showing active agency inside and outside the family to access the resources and life they wanted and actively managing interpersonal boundaries. Unexpected findings included the benefits gained from helping others and accepting the realities of caregiving for their children. Recommendations were made regarding establishing a multi-disciplinary service that could provide practical and emotional support through each developmental stage, link caregivers with mentors and parent groups from the time of diagnosis, conduct assessments to identify challenges faced and areas of resilience to enhance and to teach resiliency skills.

The rate of children diagnosed with autism has skyrocketed over the past two decades. Although the increase in autism prevalence rates has led to more interest, research, and understanding of children with autism, there has been less understanding and focus on parents' and caregivers' experiences. Parents and caregivers face a range of complexities and challenges in raising a child with autism spectrum disorder (ASD). Studies of parental experiences with raising a child with ASD have identified mostly negatives, such as increased stress, emotional burnout, and social isolation. Fewer studies have examined positive experiences, such as coping, resilience, and personal growth. Not enough studies have focused on parents' and caregivers' experiences raising a child with ASD. Many parents and caregivers face caregiving responsibility for a child who will likely require lifelong services and support. It is important to understand the unique experiences of parents and caregivers in order to better understand and address their needs and to create better and more effective intervention and support for caregivers of children with ASD. Using a scoping review of the literature, this graduate project asks the following: What are the most common experiences for parents and caregivers raising children with ASD? Specifically, do parents and caregivers develop resilience and strength from their experiences?

The purpose of this transcendental phenomenological study was to understand, as a lived experience, the parents’ quality of life (QoL) with young adult children diagnosed with autism spectrum disorder (ASD) residing on a college campus. In addition, this study helped understand parent experiences related to factors about transition and their QoL. For parents of adult children with ASD in a college residency setting, many stressful and challenging times were attributed to their child living outside the home, which ultimately impacted parental stress and the parents’ QoL. The theory guiding this study is the Schlossberg Transition Theory (1981), and the 4 S Transition model of assimilation and appraisal was used to conceptualize the framework. The central research question for this study was designed to understand the lived experiences of parents with young adult ASD children living in a college residency setting and the impact stress and transition had on their QoL. The research sub-questions were designed to understand better parenting a young adult child with ASD and the significant challenges as resources and support systems were limited. A transcendental phenomenological approach was used for this study, and data collection included questionnaires, semi-structured individual interviews, and a single focus group interview. Data analysis was manually collected and included bracketing, open coding, and thematic analysis. The analysis yielded four major themes: Relinquishing Control, Fear of the Unknown, Evolution Within Transition, and Campus Support. In addition, findings from this study also revealed how to support families with adult children affected by autism and enrich the education of professionals who work with them in higher education.

The purpose of this transcendental phenomenological study was to understand, as a lived experience, the parents’ quality of life (QoL) with young adult children diagnosed with autism spectrum disorder (ASD) residing on a college campus. In addition, this study helped understand parent experiences related to factors about transition and their QoL. For parents of adult children with ASD in a college residency setting, many stressful and challenging times were attributed to their child living outside the home, which ultimately impacted parental stress and the parents’ QoL. The theory guiding this study is the Schlossberg Transition Theory (1981), and the 4 S Transition model of assimilation and appraisal was used to conceptualize the framework. The central research question for this study was designed to understand the lived experiences of parents with young adult ASD children living in a college residency setting and the impact stress and transition had on their QoL. The research sub-questions were designed to understand better parenting a young adult child with ASD and the significant challenges as resources and support systems were limited. A transcendental phenomenological approach was used for this study, and data collection included questionnaires, semi-structured individual interviews, and a single focus group interview. Data analysis was manually collected and included bracketing, open coding, and thematic analysis. The analysis yielded four major themes: Relinquishing Control, Fear of the Unknown, Evolution Within Transition, and Campus Support. In addition, findings from this study also revealed how to support families with adult children affected by autism and enrich the education of professionals who work with them in higher education.