Access Type

Open Access Dissertation

Date of Award

January 2016

Degree Type

Dissertation

Degree Name

Ph.D.

Department

Social Work

First Advisor

Faith Hopp

Abstract

Previous research on parental caregivers has focused primarily on caregivers of individuals with intellectual and developmental disabilities, rather than focusing specifically on parents of adult children diagnosed with autism spectrum disorder (ASD). Most research on ASD has centered on parents of young children with this diagnosis, but not on parents of adult children with ASD. Understanding the experiences of parents caring for adult children with ASD is important given the increase in the prevalence of individuals with ASD and the lack of information regarding parents of adult children with ASD. A nonexperimental, quantitative, correlational design was used to examine effects of caring for an adult child with ASD on parents’ quality of life (QOL; n=320). To be included in the sample, participants had to be at least 50 years of age and have an adult child diagnosed with ASD. Participants completed a web-based survey, including a demographic questionnaire and five measures examining burden, financial impact, health, and formal and informal social support. In addition to the online portion, 51 parents also participated in an individual interview focused on their experiences of caring for an adult child with ASD. Overall, the findings emphasized the negative relationship between burdens that parents experience and their QOL. Social workers can use these findings to develop services, service delivery models, and interventions that acknowledge the needs (including burdens, QOL), realities, and experiences of parents of adult children with ASD. The growth in the prevalence of individuals affected by ASD is expected to add to casework for social workers, who are expected to play an increasingly important role in assisting parents who may feel overwhelmed by their continued responsibility for their adult children. As these parents age, their lives will continue to be affected by their efforts to support their adult children with ASD. To deliver services effectively, social workers need to understand the reality of the lives of both parents and adult children with ASD, as well as understanding the QOL and caregiver burden with which the parents are living.

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