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Experiences and stories of older autistic adults and their family members: a mixed methods approach
Dissertation   Open access

Experiences and stories of older autistic adults and their family members: a mixed methods approach

Kaitlin Koffer Miller
Doctor of Public Health (Dr.P.H.), Drexel University
Jun 2023
DOI:
https://doi.org/10.17918/00001711
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Abstract

Interviews Mixed methods research Qualitative Aging Autism
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.

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