Policy priorities for aging adults with autism: Perspectives of personal support persons

Abstract

Background: The field of aging with autism spectrum disorder is a rapidly growing area of research. Experts are increasingly focused on understanding the unique challenges faced by adults on the spectrum as they navigate aging. The challenges include aspects like maintaining independence, managing sensory sensitivities, and navigating potential changes in cognitive function. While these challenges are real, there is also a tremendous opportunity to discover and implement effective support systems. By learning more about the specific needs of adults with autism, we can develop targeted interventions and resources that empower them to thrive throughout their lives. This could encompass everything from social connection programs to sensory-sensitive housing options, and tailored healthcare plans. However, current literature highlights a significant knowledge gap in healthy aging among adults with autism. Objective: This study aims to help fill this gap by exploring the perspectives of personal support persons (family, friends, caregivers) regarding what policy priorities are important to support aging well for adults with autism. Methods: Using a qualitative semi-structured interview approach, the study explored the experiences, concerns, and priorities of personal support persons, aiming to identify policy gaps and opportunities for improving healthy aging within this under-researched group in the province of Saskatchewan. Results: The personal support persons interviewed in this study discussed challenges that the adults with autism they support face upon entering adulthood, especially in areas like employment, housing, transportation, and healthcare in the province of Saskatchewan. The study's results highlight key themes identified through participant interviews, analyzed within Sen's capability approach framework. This framework focused on capabilities (what a person can do), opportunities (resources available to the person), and freedom (choice and control) as crucial elements in understanding policy priorities to support the healthy aging of adults with autism. By examining these themes, the study underscored the need to move beyond mere service provision to empower individuals and advocate for inclusive policies. This study produced insights into how to better support adults with autism. This study found a need for tailored interventions, continuous and timely accessible support services, and policy changes that promote social inclusion. Conclusion: Using the capability approach, this research suggests specific recommendations such as improved support service navigation, social inclusion programs, retirement planning, and tailored insurance plans. Overall, this approach emphasizes a comprehensive strategy to create a more supportive environment for adults with autism to age well. Key Words – healthy aging, adults with autism, personal support persons, Sen's capability approach