BEYOND THE SPECTRUM: LIVED EXPERIENCES AND CHALLENGES OF AUTISTIC ADULTS

There is a growing need to identify support for autistic adults as they age, particularly in the transition from childhood to adulthood. This study was designed to capture the lived experience of autistic adults through the perspective of parents and autistic adults themselves. A comprehensive survey was distributed among autistic adults and parents of autistic adults in the United States to gather demographic information and give participants the opportunity to answer research questions. Participants from the survey were selected to participate in an optional follow-up interview. Nine semi-structured interviews were conducted with autistic adults and parents of autistic adults on the topics of the transition between childhood and adulthood, support in managing their diagnosis, financial difficulties, barriers to living independently, and the overall experience of raising or being an autistic adult. Thematic analysis was conducted from short-answer survey responses and interview transcripts and codes were developed to identify specific themes. Analyses revealed that participants faced several personal and systemic challenges in the emerging adulthood phase, such as difficulty accessing adult services, unmet healthcare needs, limited financial support, and misconceptions and stigma around autism. These were moderated by factors such as early diagnosis and intervention, number of comorbid diagnoses and disabilities, ability to independently care for oneself, and family and community support. This qualitative study highlights disparities among autistic adults in the United States and expanded the research on autistic adults and the barriers that they face in their transition to adulthood and beyond.