“Am I My Sibling’s Keeper?”: the Lived experiences of adult siblings of individuals with Autism Spectrum Disorder in China

ABSTRACT

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.

Introduction

Autism Spectrum Disorder (ASD) is a complex neurodevelopmental disorder characterised by persistent deficits in social communication and interaction and restricted, repetitive patterns of behaviour (American Psychiatric Association, 2013). In recent decades, its prevalence has significantly increased worldwide (Zeidan et al., 2022). Beyond the public health systems, this rising prevalence places tens of millions of families of individuals with ASD (IWASD) under unique circumstances that demand significant and long-term adaptation. Consequently, the family, as the fundamental unit of individual development, serves as the primary context for absorbing and buffering the impacts of ASD (Gao et al., 2023). Accordingly, scholarly enquiry has increasingly shifted focus to the internal dynamics of families of IWASD. However, scholarly attention has been far from evenly distributed among its members.

This imbalance is manifested in the scholarly literature’s heavy concentration on the parent-child subsystem and intergenerational subsystem within families of IWASD (Bonis, 2016; Desiningrum, 2018; Gao & Drani, 2025; Lai & Oei, 2014; Prendeville & Kinsella, 2019; Sicherman et al., 2018; Wong & Shorey, 2022). In stark contrast, despite its growth over the past two decades, the literature on IWASD’s neurotypical (NT) siblings remains relatively marginalised. In the family structure, the sibling relationship constitutes one of the most enduring social bonds across the life course, and it exerts a lifelong influence on an individual’s socialisation, identity, and emotional development (Cicirelli, 1995). However, this lifelong process of influence is not a passive reception. Instead, IWASD’s NT siblings are active agents who must constantly understand, adapt to, and negotiate a unique developmental environment (Leedham et al., 2020; Watson et al., 2021). Therefore, understanding their active negotiation process is essential.

The existing literature on IWASD’s NT siblings is characterised by significant complexity and contradictions. On the one hand, many studies adhere to what can be termed a “risk-vulnerability” perspective, highlighting the potential challenges the IWASD’s NT siblings face in psychosocial adjustment in childhood and adolescence, as extensively reviewed by Orsmond and Seltzer (2007). Quantitative studies have consistently indicated that IWASD’s NT siblings in this age group exhibit higher levels of stress than NT siblings of individuals with other developmental disorders as well as difficulties in social functioning and obtaining support (Kirchhofer et al., 2022; Shivers et al., 2019). While crucial, these findings primarily frame IWASD’s NT siblings as recipients of risk, leaving unexamined how these early vulnerabilities are carried into and transformed throughout adulthood. On the other hand, research adhering to an “adaptation-resilience” perspective underscores positive developmental outcomes. These studies have found that many IWASD’s adolescent NT siblings develop exceptional levels of empathy, responsibility, maturity, and prosocial tendencies through their unique developmental experiences (Douglas et al., 2024; Iannuzzi et al., 2022; Leedham et al., 2020; Watson et al., 2021). However, the cultivation of such traits, particularly a heightened sense of responsibility, can also be interpreted as an early conditioning for a lifelong caregiving role, the full weight of which is often not realised until the question, “Am I my sibling’s keeper?” becomes a tangible, adult reality. This scholarly landscape, therefore, oscillating between narratives of “impairment” and “growth” ultimately reveals less about the siblings’ lifelong journeys and more about the field’s limited, child and adolescent-centric focus, leaving the profound experiences of adulthood largely unexplored.

Recent studies have begun to focus on IWASD’s adult NT siblings. The core issue is future caregiving responsibility. Studies have generally focused on the caregiving roles expected of IWASD’s adult NT siblings when their parents grow old or pass away, as well as the concerns and pressures this causes (Morris et al., 2024). Caregiving responsibility has also been found to profoundly influence the career choices and life plans of IWASD’s adult NT siblings (Baena et al., 2025). Studies have also explored how these experiences affect the individual psychosocial adaptation and well-being of IWASD’s adult NT siblings. On the one hand, some studies report that IWASD’s adult NT siblings develop positive traits such as empathy, compassion, and a sense of responsibility (Iannuzzi et al., 2022). On the other hand, other studies have focused on the negative emotions that IWASD’s adult NT siblings may experience, such as anxiety and loneliness (Baena et al., 2025). In addition, studies have begun to explore the dynamic nature of the adult sibling relationship itself, finding that it is not static, but rather fluctuates between closeness and distance, and that this relationship evolves as their understanding of ASD deepens (Edery & Harvey, 2025). However, what remains largely unexamined across these studies is the intrinsic, subjective process of meaning-making that underpins the entire life course of IWASD’s adult NT siblings.

Although recent studies have begun to shift their focus toward adulthood, they share a significant limitation: a predominantly Western cultural lens. This is critical, as the family resilience theory emphasises that the process of adaptation and meaning-making when family members face plight is deeply rooted in the specific sociocultural scripts in which they live (Walsh, 2021). A study in Spain has shown that Spanish cultural values regarding family relationships and support dynamics have a profound influence on the perception of roles, responsibilities, and emotional expression among local IWASD’s adult NT siblings (Baena et al., 2025). This research gap is particularly salient in the Chinese context, where traditional values rooted in Confucian ethics, such as filial piety, authoritarian moralism, cognitive conservatism, and a collectivist emphasis on family harmony (Ho, 1994), construct a unique moral and social landscape for local IWASD’s adult NT siblings. Within this landscape, the question “Am I my sibling’s keeper?” transcends a personal, psychological dilemma to become a profound enquiry into social roles, moral duty, and lifelong commitment, shaped by powerful cultural expectations that remain largely unexamined in the current literature.

Therefore, this study addresses aforementioned gap by exploring the lived experiences of IWASD’s adult NT siblings within the unique sociocultural context of China. Employing a qualitative approach to unpack the complex “how” and “why” behind these experiences, this study centres on the voices of IWASD’s adult NT siblings to understand how they navigate lifelong roles, negotiate cultural expectations, and construct meaning from their unique life trajectories. Guided by the overarching question, “Am I my sibling’s keeper?”, this study seeks to answer the following specific questions: (1) How do IWASD’s adult NT siblings in China perceive and define their roles and responsibilities in relation to their sibling with ASD? (2) How do they navigate the complexities of their own life paths while managing the expectations of this lifelong familial bond? (3) How do they construct meaning and identity from their unique lived experiences?

Method

Research design

This study employed a qualitative research design to explore the lived experiences and meaning-making processes of IWASD’s adult NT siblings in China. This study was specifically framed by the interpretative phenomenological analysis (IPA) framework, which was chosen for its strength in understanding how individuals make sense of their unique life experiences (Smith et al., 2021). To ensure transparency and rigour in reporting, the research process was guided by the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist (Tong et al., 2007).

Inclusion and exclusion criteria

The study participants were IWASD’s adult NT siblings.

Inclusion criteria

(1) Age: 25 years or older. The rationale for this cutoff, based on Arnett (2007) theory of emerging adulthood, is to ensure participants have navigated significant life transitions and can offer rich, reflective life-course perspectives. (2) Sibling’s Diagnosis: Had at least one sibling with a formal medical diagnosis of ASD. (3) Shared Experience: Had spent the majority of their own childhood and adolescence living with their sibling with ASD. (4) Cultural Context: Had spent their primary formative years in China. (5) Communicative Ability: Were willing and able to verbally discuss and reflect on their personal life experiences in depth.

Exclusion criteria

Concurrently, individuals were excluded from this study if they met any of the following conditions: (1) Were currently experiencing a severe psychological or physical crisis that could be exacerbated by the interview process. (2) Were unable to provide informed consent due to cognitive or other impairments.

Sampling strategy

This study employed a purposive sampling strategy to select participants. This strategy aligns well with the IPA methodology because it aims to recruit individuals who have a deep, direct experience with the phenomenon being studied (Smith et al., 2021). This approach ensured the collection of the rich data needed for interviews. Participant recruitment was conducted in China through two primary channels. First, the first author posted and shared recruitment information on major social media platforms, including WeChat, Rednote, Weibo, and Douyin. Second, the research team sought referrals through collaboration with professional organisations, including medical institutions and special education schools. The final sample size was determined by the study's commitment to the idiographic focus of IPA, meaning recruitment concluded when the research team determined that the collected data possessed sufficient depth and richness to conduct a rigorous analysis of convergence and divergence across cases (Smith et al., 2021). To protect privacy, all participants were assigned pseudonyms.

Participant demographics

A final sample of eight IWASD’s adult NT siblings was recruited. While the participants possessed diverse demographic backgrounds, spanning different geographical regions in China, educational levels, and professions, they constituted a homogenous sample concerning the research phenomenon. As recommended by Smith et al. (2021), homogeneity was defined by their shared perspective: all were IWASD’s adult NT siblings who had grown up with a brother or sister with ASD in a Chinese family and remained actively involved in their lives. This shared experiential context allowed for a detailed examination of the specific phenomenon under investigation. Detailed demographic information for each participant is presented in Table I.

Table I.

Participant demographics.

Participant	Gender	Age	Marital status	Educational level	Profession	Region	Sibling with ASD (Gender/Age/Severity)	Number of other NT siblings	Parental status
Chen	Female	32	Married	Middle School	Marketing Manager	Urban	Younger Brother, 24, Moderate	0	Both parents are alive and are the primary caregivers.
Zhang	Male	38	Married	Junior College	IT Engineer	Urban	Younger Brother, 30, Severe	1 (younger sister)	Both parents are retired; mother is the primary caregiver.
Li	Female	29	Engaged	Bachelor’s Degree	High School Teacher	Rural	Younger Sister, 22, Mild	0	Both parents are alive and well.
Wang	Male	27	Single	Junior College	Freelance Designer	Rural	Elder Brother, 31, Mild	0	Both parents are alive; father has health issues.
Liu	Female	45	Married	Bachelor’s Degree	Accountant	Rural	Younger Brother, 41, Severe	2 (one elder, one younger)	Father has passed away; mother is the sole caregiver.
Zhao	Female	26	In a relationship	PhD Student	PhD Student in History	Rural	Elder Sister, 28, Moderate	0	Both parents are alive and well.
Sun	Male	35	Married	Junior College	Civil Servant	Urban	Younger Sister, 29, Moderate	1 (elder sister)	Both parents are alive and approaching retirement.
Zhou	Female	28	Single	High School	HR Specialist	Urban	Elder Twin Brother, 28, Moderate	0	Both parents are alive and are the primary caregivers.

Data collection

Data for this study were collected through semi-structured in-depth interviews, a method chosen for its suitability in exploring the complex lived experiences (Smith et al., 2021). Guided by a flexible interview protocol developed from both a comprehensive literature review and the study’s core research questions (refer to Table II), all interviews were conducted by the second author in Mandarin Chinese in a one-on-one, face-to-face format. To ensure participant comfort and privacy, interviews were conducted at a location that the participant chose, typically their home or a private office. Each interview lasted between 90 and 120 minutes and commenced only after obtaining written informed consent in person. The data collection phase was conducted between September 2024 and March 2025. With the participants’ explicit permission, all sessions were audio-recorded to facilitate accurate transcription for subsequent analysis.

Table II.

Examples of interview questions.

Interview domain	Sample questions
Opening & Retrospection	-Looking back on your upbringing, what are the first images or feelings that come to mind when you think about the experience of growing up with your sibling? -Can you recall a particularly memorable event from your childhood or adolescence involving them? What impact did that event have on you?
Perception of Roles & Responsibilities	-What kind of role do you feel you have played within your family? Has this role changed since you became an adult? -How do you see social or familial cultural values (e.g., the traditional notion that elder siblings have parental-like responsibilities) influencing your sense of responsibility?
Personal Development & Path Negotiation	-To what extent has your sibling’s presence influenced your choices regarding your own education, career, intimate relationships, or starting a family? -How have you navigated these influences? Were there moments of conflict or struggle?
Meaning-Making & Identity	-How do you think this unique upbringing has influenced the person you have become? -How significant is the identity of “being [sibling’s name]’s brother/sister” to your sense of self? -How do you make sense of the meaning of this experience in the context of your entire life?
Future Outlook	-Looking toward the future, what are your hopes or concerns when you think about your own life and the life of your sibling? -The title of our study is “Am I my sibling’s keeper?”. What are your feelings or thoughts when you hear this question?

Data analysis

The data analysis was rigorously guided by the multi-stage IPA process, following the principles detailed by Smith et al. (2021), with NVivo 12 used for data management. All interview audio recordings were transcribed verbatim in Mandarin. The first author conducted the primary analysis in the original language, beginning with an idiographic focus on each case to develop a set of Personal Experiential Themes (PETs) for each participant (Smith et al., 2021). To prepare for and enhance the credibility of the interpretations, a two-step validation process was implemented. First, member checking was conducted. The PETs and their corresponding descriptions for each participant were translated into English, and both Mandarin and English versions were sent back to them for review. All eight participants confirmed their agreement and stated no objections. Second, following this initial validation, the first author proceeded with the cross-case analysis to develop the overarching Group Experiential Themes (GETs) (Smith et al., 2021). Finally, the second author, also bilingual, performed a crucial peer debriefing role. This involved a holistic review of the entire analytical process, which included (1) checking the fidelity of the final English translations against the original data and (2) examining the elicited themes for alternative interpretations. Both authors then engaged in frequent discussions to reach a consensus on the final thematic structure, a process designed to guarantee the integrity of the interpretation.

Researcher reflexivity

In this study, researcher reflexivity was a core component for ensuring analytical integrity, practiced through the keeping of reflective journals and continuous dialogue between authors (Smith et al., 2021). The research team combined an academic “outsider” perspective from the first author, a female PhD and university lecturer with extensive experience in qualitative research, with an “insider” perspective from the second author, a male PhD student in Social Work who, as the elder brother, grew up with a younger sibling with ASD. This insider-outsider dynamic created a productive analytical tension, allowing the final interpretation to be simultaneously grounded in empathic understanding and informed by critical theoretical distance. In summary, a purposeful sampling strategy ensuring data richness, a systematic IPA analysis with researcher verification, a commitment to continuous reflexivity, and adherence to the COREQ checklist for transparent reporting, collectively establishes a comprehensive methodological framework designed to ensure the credibility, rigour, and transparency of the findings in this study.

Results

This chapter provided an interpretive account of the processes by which participants made sense of their relationship with their sibling with ASD. The findings presented were not intended to be viewed as static outcomes, but rather as illuminations of an ongoing, developmental journey. The adult perspective is uniquely privileged here, providing access to the full arc of this lifelong negotiation of identity, responsibility, and meaning (Edery & Harvey, 2025). The analysis therefore traced how past experiences informed present realities, revealing the dynamic ways in which participants constructed a coherent sense of self in relation to their sibling with ASD. The analysis yielded three overarching GETs and eight sub-themes, which are summarised in Table III.

Table III.

Overview of GETs and Sub-themes.

GETs	Sub-themes
The Inescapable Responsibility within a Culture of Blood-Ties	Familial Ethics Internalised as a Moral Imperative
	Implicit Pressure from Social Networks
	The “Keeper” Role Activated Within the Life Cycle
The Struggle Between “Flesh-and-Blood Kin” and “Spiritual Isolation”	Tacit Understanding and a Sense of Guardianship that Transcend Language
	The Unattainable “Normal” Relationship and Profound Loneliness
Finding Identity Between “Fulfilling Others” and “Losing the Self”	Pride and a Sense of Accomplishment as the Family “Stabiliser”
	The Ceding of Personal Aspirations to Family Responsibility
	Imagining and Mourning for Another Possible Life

The inescapable responsibility within a culture of blood-ties

This GET described a moral responsibility experienced as innate and inescapable. This sense of duty was deeply branded onto the participants’ identity and was constantly experienced and confirmed through the tension between personal choice and familial ethics as the life cycle progressed. For participants, the role of a “keeper” was often not an option, but a fatalistic existence endowed by blood-ties and culture.

Familial ethics internalised as a moral imperative

This sub-theme reveals how cultural and familial ethics are absorbed by the individual and internalised into an unquestionable personal moral code, framing sibling responsibility as an innate, non-negotiable duty. Participants widely viewed this responsibility not as a choice to be made, but as a foundational component of their identity. This was most starkly articulated by Zhang, who directly equated this duty with filial piety, thereby elevating it to a core ethical tenet requiring no justification:

I have never really thought about the question of “whether or not” I should take care of my younger brother. Isn’t that the same as asking “whether or not” to be filial to your parents? …This isn’t an option, it is simply a fact. (Zhang)

Li’s narrative echoed this same sense of non-negotiability but reframed it in a more contemporary context. By describing her younger sister with ASD to her fiancé as part of a “‘buy one, get one free’ deal”, she repackaged this absolute traditional duty into a modern, pragmatic life condition:

When I talked with my fiancé, I told him directly, my younger sister is a part of me, this is a “buy one, get one free’ deal… It is just my “factory setting’. (Li)

In contrast to these explicitly declared responsibilities, Wang’s experience illustrates how this moral imperative operates on a more subtle, implicit level. He described an “unspoken responsibility” that permeated daily family interactions, automatically assigned to him as the “normal” one tasked with handling “abnormal” situations:

…For example, when we go out to eat, my parents would subconsciously have me order food for him (referring to his elder brother with ASD)… It seems like the whole family has a tacit understanding that I am the “normal” one, so I should be the one to handle these “abnormal” situations. This is a responsibility, an unspoken responsibility. (Wang)

Taken together, these three accounts powerfully demonstrate how familial ethics are internalised. Whether framed as a grand moral principle, a pragmatic life package, or an unspoken daily role, the responsibility was experienced by all as a core and unchangeable component of their identity.

Implicit pressure from social networks

This sub-theme examines how the participants’ sense of responsibility was continuously confirmed and reinforced by their external social environment. This pressure, often implicit, transformed the caregiving duty from a “private family matter” into a social obligation requiring public accountability. These social forces emanated from various domains, including kinship networks, professional circles, and marital families. Liu, for instance, keenly felt this expectation from her kinship network after her father’s passing. She interpreted their words of “concern” as a form of social supervision to uphold the family’s “face”:

After my dad passed away, the relatives visited more frequently… they would say to me, “Liu, now we are all counting on you’… I could tell what they meant was that my younger brother’s affairs (referring to her younger brother with ASD) were now my responsibility, so that our family would not be gossiped about by outsiders. (Liu)

This pressure was not confined to the private sphere of kinship, as Sun’s account reveals it extending into his professional life. He perceived his superior’s “concern” about family stability as an indirect reminder of his social role, which added a professional dimension to his sibling responsibility:

Sometimes, my superior will concernedly pat my shoulder and say, “A stable family is the foundation of one’s work”… My younger sister’s matter (referring to her younger sister with ASD) is no longer just my family’s private affair. (Sun)

Furthermore, Chen’s experience reveals another facet of this social pressure, showing how it can manifest as public “praise” within a new family system, which she perceived as a label constantly reinforcing her inescapable duty:

After I got married… My parents-in-law have many relatives, and at gatherings, there is always someone who “kindly” asks about my younger brother’s situation (referring to her younger brother with ASD), and then they praise me in front of everyone, “such a good elder sister, so sensible”. I feel very awkward… it’s like they are putting a label on me. (Chen)

Taken together, these narratives from the participants powerfully illustrate the multifaceted nature of social pressure. They show how the sibling responsibility is supervised and reinforced across different life domains—kinship, professional, and marital—collectively transforming a personal duty into a public performance and solidifying the inescapability of the “keeper” role.

The “keeper” role activated within the life cycle

This sub-theme focuses on the temporal dimension of responsibility, exploring how the lifelong “keeper” role is fully activated by critical junctures in the family life cycle, such as parental aging or death. Participants’ narratives reveal this activation is not a single event but a dynamic process experienced as a sudden inheritance, a future-oriented anxiety, or a present-day planning task. For Liu, the role was activated suddenly and irrevocably by her father’s death. She powerfully described this moment as a “relay baton” being passed directly into her hands, leaving her with “no way out” and forcing her to become the final recipient of the family’s core responsibility:

When my dad was passing away, he held my hand and said nothing, but I knew what he meant. My elder brother is abroad and cannot be counted on. …I knew that the relay baton was about to be passed into my hands, and that I was the only one who could receive it. I have no way out. (Liu)

While Liu’s role was triggered by a past event, for Chen, whose parents are still primary caregivers, the impending “keeper” role manifests as a profound anxiety about the future. This anxiety is so powerful that it casts a heavy shadow over her present life, causing her to postpone major decisions like having children and likening the role to a “ticking time bomb”:

My marriage is very happy right now… but I dare not have children, because I am always thinking, what if in the future my parents are gone, what will happen to my younger brother with ASD? …This “keeper’ role is like a ticking time bomb; you don’t know when it will explode. (Chen)

Zhang’s narrative offers a third perspective, demonstrating a pragmatic and forward-looking engagement with this same reality. With his parents approaching old age, and considering his younger brother’s severe condition and inability to live independently, he has already begun transforming the future responsibility from a potential emotional crisis into a concrete family management task, involving rational and proactive financial and living arrangements:

My parents have both retired… my spouse and I have already started planning: what to do about my younger brother’s (referring to his younger brother with ASD) insurance in the future, whether we should reserve a room for him in the house we live in. These are things you cannot wait on… This is not a choice; it is planning. (Zhang)

Together, these accounts from the participants illuminate the varied temporal experiences of the “keeper” role’s activation. Whether it is a sudden inheritance thrust upon them by loss, a future anxiety paralyzing present decisions, or a current planning challenge to be managed, the transition into the primary caregiver role is a defining and inescapable process in their life journey.

The struggle between “Flesh-and-Blood Kin” and “Spiritual Isolation”

This GET deeply delved into the paradoxical nature of the relationship between the participants and their sibling with ASD. In the narratives of all participants, this relationship presented a profound duality: on the one hand, they were “flesh-and-blood kin”, connected by bloodline and shared daily life, possessing an intimacy unparalleled by any outsider; on the other hand, the immense gap in communication and cognition fostered a deep sense of spiritual isolation and loneliness. In the long term, in this continuous pull between intimacy and estrangement, they struggled to find and maintain a unique connection.

Tacit understanding and a sense of guardianship that transcend language

This sub-theme focuses on the positive side of the paradoxical relationship: a profound tacit understanding that transcended conventional verbal communication. Particularly for participants whose siblings had limited verbal ability due to more severe ASD symptoms, long-term shared living fostered a near-intuitive ability to interpret non-verbal cues. From this, they experienced a unique sense of intimacy and the warmth of guardianship. This connection was experienced by some participants as almost mystical. Zhou, whose elder twin brother with ASD has limited speech, believed they shared a “telepathy”, an “invisible string” that allowed her to understand his emotional state more accurately than their parents:

We are twins, so maybe we have always had a bit of telepathy. Although he doesn’t speak, whether he is happy or sad… I can tell at a single glance, more accurately than my parents can. …It’s as if there is an invisible string connecting us that others cannot see. (Zhou)

In contrast to Zhou’s innate bond, Liu’s tacit understanding was a pragmatic skill honed from decades of living with her younger brother who has severe ASD and almost no verbal communication ability. She described her ability to “watch” and precisely decode behavioural cues of her younger brother with ASD as a necessary tool for maintaining their shared life, a skill that formed the foundation of their intimacy:

My younger brother (referring to her younger brother with ASD) is over forty years old; he cannot express himself, but you have to know how to “watch” him. If he starts to repeatedly tear paper, I know he is getting restless and wants to go out for a walk… This is all honed from decades of experience. (Liu)

Zhao’s narrative takes this understanding a step further. In the context of her elder sister’s limited speech, she actively transformed this understanding into a functional role of guardianship. By acting as “translator and human shield” of her elder sister with ASD, she fostered a “small team”-style alliance where the act of protection itself became the source of their emotional connection:

My elder sister’s (referring to her elder sister with ASD) world is very simple… I understand her “language”; for example, if she repeatedly taps on something, it means she wants me to play with that thing with her. When we are outside, I am her translator and her human shield. …Protecting her makes me feel like the two of us are a small team. (Zhao)

Together, these accounts reveal the diverse origins of tacit understanding across different manifestations of ASD. Whether rooted in a mystical twin connection, a pragmatically honed skill for severe cases, or a functional protective alliance, this non-verbal understanding allowed participants to forge a profound and unique intimacy with their sibling with ASD, providing a crucial source of warmth in their paradoxical relationship.

The unattainable “Normal” relationship and profound loneliness

In stark contrast to the warmth of tacit understanding described previously, this sub-theme focuses on the painful side of the paradoxical relationship. It reveals that despite the existence of connection, participants harboured a deep-seated longing for a “normalised” relationship capable of reciprocal emotional and intellectual exchange. When this longing was repeatedly unmet in day-to-day reality, it transformed into a profound, ineffable sense of loneliness. However, the specific manifestation of this “impossibility” varied according to the severity of the sibling's ASD symptoms. For participants whose siblings had severe ASD and limited verbal ability, this loneliness was experienced as an immense spiritual distance. Zhang, whose younger brother with severe ASD has limited speech and behavioural issues, lamented younger brother’s inability to share the troubles and pressures of his adult work life. He felt they lived in completely different worlds:

I encounter troubles at work and want to find someone to have a drink and chat with, but who can I turn to? I can’t talk to him (referring to his younger brother with ASD) about it… We live together every day, but the distance between our hearts is probably further than from the Earth to the Moon. (Zhang)

While Zhang focused on the inability to share life’s burdens, Chen’s narrative highlights a broader lack of emotional reciprocity for all of life’s significant moments, both joyful and sad. Although her younger brother with ASD possesses a certain level of verbal communication ability, she powerfully described this as “performing a monologue to a wall”, where her own emotions received no response, generating an exceptional sense of loneliness:

I got a promotion and want to share the joy with my family, but my younger brother with ASD can’t understand… My joys, sorrows, anger, and happiness are all just noise to him. I feel like I am performing a monologue to a wall; there is no response, and it’s exceptionally lonely. (Chen)

Wang’s account introduces a more nuanced form of this pain, one unique to his relationship with his elder brother with mild ASD. His elder brother possesses a certain level of communication ability, exhibits only minor behavioural issues, and has achieved a level of supported independent living that meets clinical criteria. For him, the distress came not from complete isolation, but from the constant, wearing feeling of being “infinitely close but never arriving” at a truly reciprocal, “normal” sibling relationship:

My elder brother with ASD has a mild form, so sometimes it’s even more distressing… We are just that little bit away from being like normal brothers, but you can never reach it. This feeling of almost there is the most wearing. (Wang)

Together, these narratives reveal the profound nature of the participants’ spiritual isolation. Whether experienced as the absolute silence of a severe condition or the subtle emotional disconnect of a mild one, the unattainable desire for a reciprocal relationship was a central source of pain and loneliness for the participants.

Finding identity between “Fulfilling Others” and “Losing the Self”

This GET focused on the complex process of self-identification among participants. Their sense of self was largely defined by their relationship with their sibling with ASD and through their familial role. This process was paradoxical: on the one hand, through shouldering responsibility and self-sacrifice, they gained a unique sense of worth, maturity, and pride; on the other hand, they often felt that their own authentic needs were suppressed, and had even lost the opportunity to explore other identity possibilities.

Pride and a sense of accomplishment as the family “Stabiliser”

This sub-theme explored how participants derived a positive self-identity from their acts of “giving” and “sacrifice”. Many participants recalled consciously playing the role of the “sensible child”, functioning as a family “stabiliser” to alleviate their parents’ worries, and they derived a unique sense of pride and accomplishment from this role. This identity was constructed through various strategies, including external achievement, internal regulation, and active self-suppression. Li, for example, pursued this role through external achievement. She linked her academic and career success directly to family expectations, feeling her efforts were worthwhile when her mother declared that the family “finally has something to look forward to”:

Since I was young, I have been particularly strict with myself; in my studies and work, I could not make a single misstep. Because I knew that my parents already had enough worries regarding my younger sister with ASD, I could not cause them any more trouble. The day I was admitted to a key university, my mother hugged me and cried, saying, “Our family finally has something to look forward to”. At that moment, I felt all my efforts were worth it. (Li)

While Li found her sense of worth in external accomplishments, Sun constructed his stabiliser identity through internal regulation. He viewed maintaining his own professional and emotional stability as his core contribution, likening himself to an “anchor” that holds steady for the family regardless of the waves:

… so what I can do is be stable. My work has to be stable, my emotions have to be stable. There can’t be anything that makes the family worry. This has become a habit, and it’s also like my contribution to this family. I feel like an anchor; no matter how big the waves are, I have to hold steady. (Sun)

Chen’s narrative reveals a third, more ascetic path to this identity: active self-suppression. For her, being “sensible” meant consciously restraining her own desires to avoid becoming another burden on the family, an act of self-denial that she internalised as a sign of maturity and a way of helping:

When I was little, the thing I feared most was my parents asking me, “What do you want?” I always said, “There’s nothing I want”. Because I knew that the family’s resources and energy were limited, and they all had to be reserved for my younger brother with ASD. Learning to restrain my own desires made me feel very mature and sensible, as if by doing so, I could help my parents. (Chen)

Together, these accounts illustrate the diverse strategies used to construct a positive identity from a sacrificial role. Whether through external achievement, internal stability, or active self-suppression, participants found a profound sense of purpose and accomplishment in their function as the family “stabiliser”.

The ceding of personal aspirations to family responsibility

In contrast to the sense of accomplishment described previously, this sub-theme explored the other side of “sacrifice”: the deviation of one’s personal life trajectory and the ceding of aspirations. Participants keenly experienced that their life choices in critical domains, whether in career or marriage, must often give way to the needs of their sibling with ASD and the family as a whole. This was clearly illustrated by Wang, who shaped his career path as an active adaptation to family needs. He defined his decision to become a freelancer instead of pursuing opportunities in major cities as a “compromise”, a choice that prioritised familial availability over personal career aspirations:

When I graduated from university, there were actually very good job opportunities in Beijing and Shanghai, but I didn’t go. I couldn’t be too far from home… I chose to be a freelancer, so my time would be more flexible. In case anything happened at home, I could go back immediately. I guess this counts as a compromise. (Wang)

This conflict also manifests at more advanced stages of professional planning, as shown in the dilemma faced by Zhao, a PhD student. For her, the struggle was not about initial job choice but about future career mobility, pitting the professional opportunities of a first-tier city against her profound reluctance to leave her elder sister with ASD and parents unsupported:

I’m about to graduate with my PhD, and my boyfriend hopes we can go to a first-tier city together to develop our careers… But I am hesitant; I can’t let go of my elder sister (referring to her elder sister with ASD). If I leave, what will my parents do? I’ve even thought about just finding a job at an ordinary local university and settling for that. (Zhao)

Beyond the professional sphere, this sense of a pre-determined life path profoundly impacted the pursuit of romantic relationships. Zhou described how her future “keeper” role acted as a significant barrier in her romantic life, as potential partners hesitated at the prospect of this lifelong responsibility, leaving her feeling “bound” to her elder brother with ASD:

I’ve been in a few relationships… As soon as the other person hears that I have an elder twin brother with ASD, I can feel their hesitation… My life seems to be already bound to my brother’s, and it’s very difficult for anyone else to insert themselves. (Zhou)

Together, the experiences of the participants demonstrate how the ceding of personal aspirations is a pervasive theme across key adult life domains. Whether shaping initial career choices, limiting future professional development, or hindering the formation of independent romantic partnerships, the responsibility to family consistently required a re-negotiation and often a compromise of their own life goals.

Imagining and mourning for another possible life

This was the deepest and most central reflection under the theme of “sacrifice”. Through counterfactual thinking, participants imagined a completely different “parallel life” in which they did not shoulder this special responsibility. This process of imagination was often accompanied by a complex, ineffable emotion, comprised of both a longing for lost possibilities and a profound, quiet mourning. Liu, for example, mourned for a specific lost life trajectory. She imagined she might have pursued a PhD abroad like her elder brother, powerfully likening this alternate reality to “a film about myself that could never be released”:

Maybe I would have gone abroad for my PhD long ago, like my elder brother. Thinking about these things is useless, but I just can’t help but think about them. It’s like watching a film about myself that could never be released. (Liu)

While Liu mourned a specific lost path, Zhang’s reflection went deeper, questioning whether he had lost the chance to develop a different kind of personality—one more “selfish” or “carefree”. For him, the core loss was the right to choose his own way of being:

...if I weren’t his elder brother, would I have lived a bit more selfishly? Would I be more carefree? I don’t know. It seems my life was set from the beginning to the theme of responsibility, with no chance to try other ways of living. (Zhang)

Zhou’s narrative takes this reflection to its most profound, existential conclusion. As a twin, her identity was so intertwined with her brother’s that imagining a life without him was not about a different path or personality, but about being a fundamentally “incomplete” person. This led her to the unanswerable question: “that me would it still be me?”:

Because we are twins. To imagine a world without him (elder brother with ASD) is equivalent to imagining a me who has been incomplete since birth. But if there really were another life, that me would it still be me? I don’t know. This question has no answer. (Zhou)

Together, these narratives reveal the escalating depth of this mourning for a possible life. It manifests as a sorrow for a lost path, a regret for a lost way of being, and ultimately, a profound existential questioning of the self, powerfully illustrating the deepest costs of their sacrifice.

In closing

In sum, the lived experience of IWASD’s adult NT siblings in China is not a static outcome that can be simply summarised, but rather a lifelong, dynamic process of negotiation centred around their special identity. This process begins with a “fated” role (GET 1) conferred jointly by culture and kinship, which is nearly impossible to refuse. It is this preset identity of the “keeper” that determines the nature of their relationship with their sibling with ASD, a relationship full of profound contradictions: possessing both a tacit understanding that transcends language and an uncrossable mental islet (GET 2). This lifelong role and unique paradoxical relationship ultimately compels them to constantly engage in a difficult process of identity negotiation and reconstruction between the sense of worth from “fulfilling others” and the sense of loss from “losing the self” (GET 3). These three themes are interlinked, and together they depict a profound picture of meaning-making within a cultural context, one that is far more complex than the “risk” or “resilience” dualism.

Discussion

The findings of this study engage in a multilayered dialogue with the existing literature, particularly concerning the three core research questions of role definition, life path negotiation, and meaning-making. First, regarding how IWASD’s adult NT siblings in China perceive their roles and responsibilities, this study found that the role of a “keeper” is experienced as an innate “Mandate of Heaven”, a reality that profoundly reflects the relational nature of Confucian culture (Ho, 1994). While this resonates with the general concerns about future caregiving found in existing literature (Iannuzzi et al., 2022; Morris et al., 2024), it fundamentally reframes the issue. This responsibility is not primarily experienced as a psychological burden to be managed, as is often framed in the “risk-vulnerability” model, but as a foundational ethical positioning. Crucially, our findings indicate that while the practical weight of this responsibility may differ based on the sibling’s ASD symptoms, ranging from direct caregiving for severe ASD to “safety net” guardianship for mild ASD, the underlying moral imperative remains absolute for all. This finding provides a culturally specific parallel to the “familism” observed by Baena et al. (2025) in Spain, revealing that in the Chinese context, the sense of kinship obligation constitutes the core framework of the sibling experience, one that precedes and shapes personal psychological adjustment.

This ethics-first positioning of responsibility, in turn, profoundly influences how IWASD’s adult NT siblings in China navigate their personal life paths. The study found that this navigation process is consistently characterised by the “ceding of personal aspirations”, which provides qualitative evidence for the manifestation of risks (Orsmond & Seltzer, 2007) in adulthood and aligns with findings on altered life plans (Baena et al., 2025) and the experience of “sibling over self” (Morris et al., 2024). This study’s key contribution, however, is revealing that this “ceding” of ideals is not simply a negative outcome. Instead, it is the very process through which the positive identity of being the family “stabiliser” is forged. This dialectical process, in which risk is reframed as a meaningful sacrifice, provides a crucial bridge to understanding how participants construct their identity.

Finally, regarding how meaning and identity are constructed, this study reveals that the NT sibling’s sense of self is forged in the tension between “fulfilling others” and “losing the self”. This internal identity conflict echoes the “relational ebb and flow” described by Edery and Harvey (2025). The most significant theoretical contribution of this study lies in reconciling the dichotomy between “risk-vulnerability” and “adaptation-resilience”. Within the Chinese collectivist framework, “risk” (the postponed life) and “resilience” (the pride from being a stabiliser) are not opposing outcomes but two sides of the same coin, both originating from the core experience of “contributing to the family”. Therefore, resilience is a positive meaning assigned to the costs of risk. This reframes the NT sibling experience as a complex, culturally mediated process of continuous identity negotiation through sacrifice, offering a more integrated and dynamic analytical framework to the field.

While this study is deeply rooted in the Chinese context, its central finding, that risk and resilience are dialectically unified by the cultural script of familial sacrifice, may offer a valuable analytical lens for understanding the experiences of sibling caregivers in other collectivist or familistic societies (e.g., in East and Southeast Asia or parts of Latin America) where similar values are prominent. The resonance of our findings with studies on “familism” in Spain further supports this potential for cross-cultural transferability.

Practical implications

This study’s findings call for a multi-level approach to support IWASD’s adult NT siblings in China. At the practice level, interventions should adopt a family-systems perspective that helps renegotiate, rather than remove, the culturally-ingrained sense of responsibility. Concurrently, creating sibling-specific peer support groups can directly address their profound loneliness arising from a paradoxical relationship, while individualised counselling is crucial for helping them navigate the identity struggles and life-path compromises identified in this study. Furthermore, these individual and familial supports must be bolstered by concrete social policies. To mitigate the immense, lifelong pressure on these families, government action is needed to establish respite care services, provide direct financial and housing assistance to formally recognise the sibling-caregiver role, and launch public awareness campaigns. Such campaigns can foster a more understanding community environment, thereby reducing the implicit social pressures that reinforce the siblings’ sacrifices.

Limitations

First, the study employed a small, purposive sample (n = 8); thus, its findings aim for in-depth interpretation rather than statistical generalisability. Second, the recruitment methods may have introduced a self-selection bias, as individuals who volunteered may possess a stronger willingness to reflect on their experiences. Third, a limitation exists regarding the transferability of the symptom-specific patterns. While this study identified powerful shared themes and noted qualitative distinctions based on sibling characteristics (e.g., the different manifestations of loneliness between mild and severe ASD cases), the small sample size limits the transferability of these specific variations. Future research with a larger sample could systematically verify how these variables might specifically mediate the core experiences. Finally, the study relied on participants’ retrospective accounts, which are inevitably subject to the biases of memory and present-day interpretation.

Conclusion

This study aimed to provide an in-depth exploration of the lived experiences of IWASD’s adult NT siblings in the Chinese cultural context. The core finding of this study is that the participants’ experience is dominated by an inescapable role of responsibility defined by cultural ethics. This role profoundly shapes their sibling relationship, causing it to exhibit a paradox of co-existing intimacy and distance. Ultimately, their identity is forged through a trade-off between personal sacrifice and familial contribution in the process of fulfilling this role and managing this special relationship. Therefore, the conclusion of this study is that for participants situated in the Chinese cultural context, the question “Am I my sibling’s keeper?” already presupposes an affirmative answer. The real enquiry they face is: “On the premise of having to accept this keeper role, how can I live out my own life meaningfully?” Understanding this process not only provides a new theoretical perspective for cross-cultural research in this field, but also offers an empirical and humanistic foundation for developing targeted support services and policies to assist this unique population.

Supplementary Material

Supplementary Information.docx

Supplementary Information.docx

Supplemental material

Supplemental data for this article can be accessed at https://doi.org/10.1080/17482631.2026.2625293.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Funding

This research received no specific grants from any funding agency in the public, commercial, or not-for-profit sectors.

Data availability statement

With the consent of all participants in this study, all data generated and/or analysed during this study may be requested from the corresponding author, with reasonable requests.

Ethical statements

The study followed the Measures for Ethical Review of Biomedical Research Involving Human Beings issued by the National Health Commission of the People’s Republic of China and the 1964 Helsinki Declaration and its later amendments; Ethical approval for this study was obtained from the Academic Committee of School of Philosophy and Sociology, Northwest Normal University, ethical approval number: 202408-SS, date of approval: 1 August 2024.

Informed consent

All participants were informed about the purpose, procedures, and voluntary nature of the study. Written informed consent was obtained from each participant prior to data collection.