Challenges in Independent Living for Middle-Aged Autistic Adults in China: A Qualitative Study

As the first cohort of formally diagnosed autistic individuals in China enters later life, the disruption of premature old-age care among middle-aged autistic adults-while they strive for independent living in old age-has emerged as an urgent public health issue. This study employed an exploratory qualitative design. Data collection methods included 34 semi-structured interviews and participant observation. Analysis revealed that premature care disruption unfolds through three sequential stages. First, while families still provided care, three resource deficits undermined independent aging for middle-aged autistic adults: lack of labor insurance, depleted household savings, and reduced care support in single-parent structures. Second, when family care capacity ruptured, reliance on institutional care was accompanied by multiple systemic limitations, including age-based exclusion and services that eroded rather than supported independent living. Third, families explored charitable trusts as an emerging strategy, yet these remained accessible primarily to middle-income households and left critical gaps in legal protection, asset management, and long-term social support. Middle-aged autistic adults in China experience a structural mismatch between their chronological midlife status and advanced-aged care needs, resulting in the premature breakdown of conditions for independent living. These findings offer critical implications for advancing the goal of healthy aging among autistic populations.Lay AbstractAs the first cohort of formally diagnosed autistic individuals in China reaches middle and older age, many are facing a serious problem. They need care typically associated with old age, even though they are only in their 40s and 50s. This study explored why this happens and what families can do about it. We found that care disruption unfolds in three phases over time. First, while families were still caring for their children at home, many struggled to build enough savings and support for the future. Most middle-aged autistic adults had no work insurance. Years of caregiving had drained family resources. Single-parent families faced extra strain. Second, when parents became too old or ill to continue caring, families faced a crisis. Care homes often refused to accept autistic adults over 55. Even when accepted, these facilities failed to support independent living. Staff sometimes delivered meals directly to residents rather than helping them learn to do things for themselves. Third, after parents could no longer provide care, some families explored charitable trusts. These arrangements can provide money after parents die, but they require families to have assets such as property or savings to place in trust. They do not solve problems such as loneliness, daily support, or safety from bullying. Our findings show that middle-aged autistic adults are aging prematurely because of gaps in the care system. We hope these results will help policymakers design better support for autistic adults as they grow older.