Provision of Alternative Care for Autistic Adults: A Multi-Stakeholder Qualitative Study in China

Abstract

Providing alternative care for autistic adults unable to live with their biological families remains a low priority, particularly for those requiring high support. This population often receives inadequate attention despite its significant and long-term developmental needs. Using an exploratory qualitative design with ethnographic methods, this study conducted directed content analysis on data collected through 4 months of participant observation and 36 semi-structured interviews across four Chinese cities. The findings reveal that small-group alternative care emphasizes the physical and psychological development of autistic adults. However, charitable expectations among alternative care institutions and charitable donors lag behind the actual care needs of autistic adults with high support needs, limiting resource efficiency. The “present bias” diminishes recognition of the long-term societal benefits of developmental care. In developing contexts, achieving cohesive and sustainable nursing strategies led by non-state actors is crucial. A misalignment between charitable motivations and developmental priorities creates a “care sustainability gap” that threatens the continuity and effectiveness of alternative care for autistic adults.

Lay Abstract

Many autistic adults in China cannot live independently, yet non-family alternative care for this group is poorly supported and understudied. This study explored alternative care for autistic adults in four Chinese cities through participant observation and semi-structured interviews with private enterprises, charitable organizations, care providers, and autistic adults’ families. We found that charitable organizations and private enterprises mostly focus on short-term, visible support (like donating daily supplies or facility equipment) for autistic adults’ care, while ignoring their long-term needs for independent living skills and social integration. Social stigma that mislabels autistic adults as mentally ill also leads to overemphasis on safety in care, limiting their growth. In addition, many alternative care institutions lack clear long-term plans, making it hard to sustain development-focused care. This study highlights a gap between donors’ expectations and autistic adults’ actual care needs. A misalignment between charitable motivations and developmental priorities creates a “care sustainability gap” that threatens the continuity and effectiveness of alternative care for autistic adults.