“Am I My Sibling’s Keeper?”
The Lived experiences of adult siblings of individuals with Autism Spectrum Disorder in China
Bibliographic Data
| ID | 24231481 |
|---|---|
| Authors | Fengying Han (0009-0000-5546-9330, Northwest Normal University), Xin Gao (0000-0002-0937-6288, Universiti Sains Malaysia) |
| Year | 2026 |
| Volume | 21 |
| Issue | 1 |
| Pages | 2625293-2625293 |
| Publication date | 2026-12-31 |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | International Journal of Qualitative Studies on Health and Well-Being (JOURNAL) |
| Journal identifiers | ISSN: 1748-2623 • E-ISSN: 1748-2631 |
| Publisher | Informa UK Limited (PUBLISHER • GB) |
| DOI | 10.1080/17482631.2026.2625293 |
| PMID | 41627191 |
| OpenAlex | W7127167912 |
| Language | EN |
| References cited | 25 |
BACKGROUND: Research on families of individuals with Autism Spectrum Disorder (ASD) often marginalizes adult neurotypical (NT) siblings, particularly outside of Western contexts. OBJECTIVE: This study aimed to provide an in-depth exploration of the lived experiences of adult NT siblings of individuals with ASD (IWASD) in China. METHODS: Using an Interpretative Phenomenological Analysis (IPA) approach, this study conducted semi-structured in-depth interviews with eight adult NT siblings of IWASD from China. Data were analyzed following IPA procedures. RESULTS: The analysis yielded three group experiential themes: 1) the inescapable responsibility within a culture of blood-ties, 2) the struggle between "flesh-and-blood kin" and "spiritual isolation", and 3) finding identity between "fulfilling others" and "losing the self". The findings reveal that participants' lived experience is a dynamic process shaped by cultural responsibility, mediated by a paradoxical relationship, and ultimately characterized by identity negotiation through sacrifice. CONCLUSIONS: The study concludes that in the Chinese context, the experience of adult NT siblings of IWASD dialectically unifies risk (e.g., ceded ideals) and resilience (e.g., pride as family stabilizer) under the core tenet of "sacrificing for the family". This offers a culturally centered, integrative perspective that supplements the dichotomous risk-resilience discussion in existing literature.
adult siblings · Autism spectrum disorder · China · cultural responsibility · family caregiving · Identity negotiation · Kinship · neurotypical siblings · risk and resilience · spiritual isolation · Family and Disability Support Research · Family Caregiving in Mental Illness · Family Support in Illness
Diagnostic and Statistical Manual of Mental Disorders
Sibling Relationships Across the Life Span
Interpretative phenomenological analysis.
Global prevalence of autism
Consolidated criteria for reporting qualitative research (Coreq)
Social Support Experiences in Parents of Children With ASD
Narratives of siblinghood
Emerging Adulthood
| Highly cited | No |
|---|