When "Integration" fails to address loneliness: interventional challenges of parent-led organizations for autistic children’s social/emotional loneliness and health equity in China

Abstract

Background

Loneliness is a key driver of health inequities faced by autistic children. However, research on how parent-led organizations align their goals to address loneliness remains scarce.

Methods

Between 2021 and 2024, a qualitative study was conducted in three Chinese cities, utilizing semi-structured interviews with 37 stakeholders and participatory observations.

Results

Parent-led organizational interventions exhibited three interrelated goals: shifting from individual family-based strategies (exemplified by but not limited to ‘having a second child for companionship’) to collective ‘outings for social interaction outside the home’ (with peer companionship programs as organizational alternatives); avoiding the stigma of loneliness by framing interventions as social integration, which obscures links between loneliness and health; and prioritizing parents’ social reintegration over autistic children’s loneliness needs. Limitations of these intervention goals, potentially weakening intervention efficacy and failing to create conditions conducive to reducing loneliness-related health disparities, are shaped by China’s social transformation: collectivist values emphasize interdependence, driving demand for integration; limited formal welfare pushes parents to organize; and stigma around autism discourages explicit discussion of loneliness.

Conclusions

This study highlights the uniqueness of China’s parent-led intervention model—characterized by cultural adaptation, stigma mitigation, and dual support for both autistic children and parents—compared to Western models that focus more on professionalized services. While parent-led organizations fill essential gaps through culturally grounded, peer-supported pathways that formal services often cannot reach, distinguishing between social and emotional loneliness and centering autistic children’s heterogeneous needs are critical to refining these interventions and fostering meaningful belonging.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12889-026-28429-3.

Introduction

Public health interventions addressing loneliness-related health equity—defined as the systematic reduction of health disparities caused by social structural factors [1]—must prioritize marginalized or vulnerable groups, where people with disabilities are increasingly recognized [2]. Increasing evidence confirms that people with disabilities report higher loneliness levels than their non-disabled peers [3–5], and such health inequities persist without evidence of mitigation over time [6]. In this exploratory study, we examine how parent-led organizational practices may relate to conditions for reducing disparities in autistic children’s mental health and emotional well-being that could arise from unaddressed loneliness, without directly measuring health outcomes.

While the broader disability literature establishes elevated loneliness risk [7–10], autism-specific research confirms that autistic children and adolescents report significantly higher loneliness than their non-autistic peers [11–15], with social motivation and communication differences contributing to distinct loneliness trajectories. These autism-specific findings underscore the need for interventions that account for the unique ways loneliness manifests in this population. Social factors, such as community integration and interpersonal connection, are increasingly emphasized [16], which include fewer friends, limited social networks, insufficient social support, and heightened social isolation [17, 18]. The mechanisms involved in how social networks affect personal health or buffer or promote health inequality are complex and multifaceted [19]. Notably, loneliness is tied to the quality of social relationships instead of mere quantity [20]. To avoid conceptual conflation, this study explicitly distinguishes two dimensions of loneliness [21] and connects them to intervention scenarios: (1) Social loneliness: A subjective sense of deprivation stemming from the lack of meaningful social connections, networks, and group affiliations [22, 23] and/or group memberships (targeted by addressing “staying at home” or “lack of interaction”). For example, a special education teacher further observed: “In group hiking activities, autistic children stand apart from other kids; they are physically present but have no real interaction—this is why parents worry about their ‘loneliness’ in social settings” (Special Education Teacher, Changchun); and (2) Emotional loneliness: A sense of loss or emptiness emerging from missing out on deep, emotional connection with others [24] and intimate relationships (e.g., close family or peer bonds, targeted by fostering companion bonds). For example, a parent of an autistic child explained the motivation for “having a second child for companionship”: “I won’t live forever. My autistic child doesn’t connect with strangers—only a sibling can stay with them long-term, comforting them when they’re upset” (Parent, Xi’an).

Extensive literature documents parents of autistic children as primary interveners in safeguarding their children’s health and well-being [25–27]—a dynamic that is particularly pronounced in China, where formal welfare services for autistic children remain limited, and families bear the principal responsibility for care and intervention. Social interventions for autistic children’s loneliness are therefore chiefly initiated and led by parents. However, parents do not act in isolation. Across China, parents have established grassroots, non-profit organizations—referred to in this study as parent-led organizations—that serve as coordinators, disseminators, and activity designers. These organizations form an ‘organization-led, parent-implemented’ intervention model: parent-led organizations formulate goals, design strategies, and organize activities, while individual parents act as the primary implementers of these interventions in their children’s daily lives. The core functions of parent-led organizations include providing direct support for autistic children (e.g., social activities, educational guidance) and empowering parents (e.g., emotional mutual aid, resource sharing). This dual-agent structure means that the intervention goals pursued by parent-led organizations—shaped by both parental priorities and organizational dynamics—are critical to understanding how loneliness is addressed in practice.

In this study, interventions by parent-led organizations are defined as an ‘organization-led, parent-implemented’ dual-agent model. In this model, grassroots non-profit organizations founded by parents of autistic children formulate intervention goals, design strategies, and coordinate collective activities (e.g., peer companionship programs, collective outings for social interaction outside the home, and educational integration initiatives), while individual parents serve as the primary implementers who execute these interventions in their children’s daily lives. These interventions encompass dual functions: (1) direct support for autistic children, including structured social activities and educational guidance, and (2) empowerment for parents, including emotional mutual aid, resource sharing, and opportunities for parental social reintegration. Operating within China’s limited formal welfare context, this model reflects an adaptive response.

The intervention goals of Chinese parent-led organizations are deeply shaped by collectivist cultural values. Chinese parents characteristically prioritize fostering their children’s interdependent relationships with others [28], a socialization goal rooted in the broader collectivist emphasis on individual-group interdependence [29, 30]. Within the context of autism intervention, this cultural orientation typically translates into a dominant focus on social integration—defined here as enabling autistic children to participate in extra-familial social and educational settings (e.g., mainstream schools, community activities, and collective autonomous living) and to interact with non-disabled peers and adults. Parent-led organizations consequently design their interventions around this integration goal, organizing activities intended to bring autistic children into shared social spaces and reduce the physical isolation of ‘staying at home.’ However, this focus on social integration as the primary intervention framework carries an important, unexamined assumption: that increasing autistic children’s physical presence in social settings will, in itself, alleviate their loneliness. This assumption is problematic because it conflates two distinct dimensions of loneliness that require fundamentally different intervention approaches. As established earlier, social loneliness arises from a subjective sense of deprivation in meaningful social connections, networks, and group memberships [22, 23], while emotional loneliness stems from the absence of deep, intimate emotional bonds [24]. Social integration activities—such as group outings or mainstream classroom placement—may, if well designed, create opportunities for addressing social loneliness by expanding an autistic child’s social network and reducing objective isolation. However, they do not, in themselves, generate the intimate, trusting relationships required to alleviate emotional loneliness. Parent-led organizations, our subsequent analysis will show, tend to treat ‘social integration’ and ‘loneliness alleviation’ as interchangeable goals, without systematically attending to this distinction. It is essential to recognize that autistic children are heterogeneous in their social motivations, sensory profiles, and preferences for social participation. This conflation is further complicated by the heterogeneity of autistic experiences: historically, autistic individuals were described as having a strong desire for aloneness [31], yet recent longitudinal research demonstrates that while many autistic people report high loneliness, a significant subset do not [11, 32, 33]. This heterogeneity reinforces the importance of distinguishing not only between the two dimensions of loneliness, but also between loneliness (a negative subjective experience) and solitude (a potentially neutral or positive chosen state)—a distinction that integration-focused interventions rarely make. To date, no formal evaluation has examined whether integration-focused interventions delivered by parent-led organizations in China address either dimension of loneliness.

A qualitative design was adopted to address these gaps. This choice was not merely a preference but a methodological necessity, grounded in two key limitations of existing quantitative approaches. First, standard loneliness measures—such as the Berkman–Syme Social Network Index [34]—prioritize clinical/functional outcomes [35]—are heavily reliant on self-report and require respondents to engage in abstract introspection about their emotional states and social relationships. For many autistic children, who may communicate differently, have co-occurring intellectual disabilities, these instruments may neither be accessible nor valid [12, 36]. Second, quantitative approaches cannot capture the culturally specific, stigma-driven framing strategies that our preliminary fieldwork identified as central to how parent-led organizations operate—for instance, the deliberate avoidance of the term loneliness in favor of integration. Understanding these framing practices requires the depth and flexibility of qualitative inquiry, which allows participants to express their experiences and rationales in their own terms. Given that autistic children’s social interaction and communication patterns are heterogeneous, and that the link between intervention practices and conditions for health equity is complex and unmeasured, a qualitative descriptive design was the most appropriate choice for this exploratory investigation.

A critical conceptual distinction underlies this investigation: physical presence in social settings does not necessarily constitute meaningful social connection or belonging. Recent theoretical work has formalized this distinction through the Presence Without Belonging (PWB) framework [37], which identifies three conditions required for belonging: recognition (being understood and taken seriously as a social subject), access (participation without extraordinary communicative, sensory, or temporal effort), and sustainability (participation that can be maintained over time without disproportionate cumulative cost). When one or more of these conditions is absent, individuals may be socially present yet experience persistent loneliness. This framework provides a lens for examining why parent-led organizations’ integration-focused interventions may not effectively address autistic children’s loneliness despite increasing their social exposure. This framework provides an interpretive lens—applied retrospectively in our analysis rather than prospectively embedded within our data collection and coding procedures—for examining why parent-led organizations’ integration-focused interventions may not effectively address autistic children’s loneliness despite increasing their social exposure.

This study aims to fill three core research gaps by addressing the following research questions: (1) What are the core goals and specific implementation strategies of parent-led organizations’ interventions to alleviate autistic children’s loneliness in China—particularly those centered on social integration? (2) How do these goals and strategies differentially influence autistic children’s social and emotional loneliness within a collectivist cultural context? (3) What key challenges may hinder these interventions from creating conditions conducive to loneliness-related health equity (i.e., reducing health disparities potentially caused by unaddressed loneliness) in autistic children? Importantly, this study is exploratory in nature: it does not directly measure health outcomes but rather examines stakeholder perceptions, organizational practices, and the conceptual alignment between intervention goals and the multidimensional nature of loneliness. For the purposes of this study, intervention effectiveness is operationalized as the perceived capacity of activities to: (1) transform objective ‘lack of interaction’ into instances of meaningful, reciprocal social engagement (addressing social loneliness, defined as the subjective deprivation of meaningful social connections and group membership); and (2) foster observable signs of deepening interpersonal bonds indicative of intimate relationships (addressing emotional loneliness, defined as the sense of loss emerging from the absence of close emotional connections). These criteria are assessed through stakeholder reports and observational data, not through standardized outcome measures.

Methods

Study design

A qualitative descriptive design was adopted in this study. Qualitative descriptive design, as formalized by Sandelowski [38, 39], is a distinct methodological approach within naturalistic inquiry that aims to produce rich, ‘straight’ descriptions of phenomena from the perspective of those experiencing them. It is particularly suitable for exploring understudied social phenomena [40] where the goal is to provide a comprehensive descriptive summary of events, practices, and perceptions in their everyday context, including support needs for autism [41–43]. Qualitative descriptive design has been widely used in health services research to investigate organizational practices, stakeholder perspectives, and implementation processes [44].

This design was selected for three specific reasons aligned with our research aims. First, the role of parent-led organizations in addressing autistic children’s loneliness is an understudied phenomenon in China; a descriptive account of organizational goals, strategies, and perceived impacts was a necessary foundation before more theoretically ambitious or explanatory research could be conducted. Second, qualitative descriptive design is explicitly oriented toward capturing the manifest content of participants’ accounts—what they say about what they do and why—rather than imposing a pre-existing theoretical framework on the data. This was critical given our interest in understanding how parent-led organizations themselves frame their goals (e.g., as ‘integration’ rather than ‘loneliness alleviation’). Third, the design accommodates the use of multiple data sources (interviews, observations, and documents) and diverse stakeholder perspectives, which are essential for triangulating findings in complex organizational settings.

Guided by the three core research questions, this design centered on analyzing the dynamic interaction among three key components: the intervention goals of parent-led organizations, two dimensions of autistic children’s loneliness (social/emotional), and conditions for health equity. The design explicitly integrated the ‘organization-led, parent-implemented’ dual-agent logic (i.e., parent-led organizations formulate goals and design strategies, while parents act as the primary implementers of interventions) to address the previously underemphasized interdependence between organizational and individual practices. Additionally, the exploratory nature of this design avoided predefined hypotheses, enabling the capture of subjective experiences from multiple stakeholders—critical for understanding the context-specific intervention practices in China’s collectivist culture.

To ensure conceptual consistency, the design strictly aligned with the “term-function-scenario” mapping system established in the Introduction: (1) social loneliness was operationalized as observations of autistic children’s participation in group interactions and stakeholder reports about the social status of autistic children; and (2) emotional loneliness was measured through observations of parent–child interaction quality, reports of autistic children’s emotional states, and peer attachment from stakeholders. A terminology operationalization table (Table 1) was added to clarify the operational definitions of core terms in data collection and analysis.

Table 1.

Terminology and their operational definitions

Term	Revised Definition	Role in Parent-Led Organizational Interventions
Loneliness	A subjective negative emotional experience (the core intervention target of parent-led organizations), divided into two dimensions (Buecker et al., [21]): • Social loneliness: A subjective sense of deprivation stemming from the lack of meaningful social connections, networks, and group affiliations (Margelisch et al., [23]) and/or group memberships (targeted by addressing “staying at home” or “lack of interaction”); • Emotional loneliness: A sense of loss or emptiness emerging from missing out on deep emotional connection with others (Landmann & Rohmann, [24]) and intimate relationships (e.g., close family or peer bonds, targeted by fostering companion bonds).	Parent-led organizations’ goal is to alleviate this experience—though they frame it as “integration” to avoid stigma.
Being alone	An objective physical state (no immediate social contact). For example, a child playing alone at home.	Not an intervention target, but a baseline state that parent-led organizations monitor to identify potential loneliness risks.
Staying at home	An objective behavioral pattern (prolonged physical isolation within the home, e.g., a child not leaving home for weeks), often associated with increased loneliness risk.	The trigger for organizational intervention—parent-led organizations design “collective outings” to break this pattern.
Solitude	A subjective neutral/positive state (choosing to be alone, e.g., some autistic children prefer quiet, non-interactive environments).	A boundary for organizational intervention—parent-led organizations should avoid forcing “social interaction” on autistic children who prefer solitude (to prevent exacerbating distress).
Lack of interaction	An objective behavioral indicator (no verbal/nonverbal communication with peers/adults during activities, e.g., a child not responding to peers’ greetings).	A measure of intervention effectiveness—parent-led organizations use this to adjust activities (e.g., switching from large-group hiking to small-group art therapy).

Data collection

Site selection

Purposive sampling was employed to select research sites, considering three key criteria [45]: (1) regional economic diversity (including high-income Guangzhou, middle-income Xi’an, and low-to-middle-income Changchun cities in China; (2) maturity of parent-led organizations (including well-established organizations with over 5 years of experience and emerging organizations with 1–3 years of operation); and (3) accessibility of stakeholder groups (ensuring access to parents, parent-led organizational leaders, non-parent-led non-profit organizations (NPOs), volunteers, and special education teachers). These three cities were confirmed to possess active parent-led interventions for autistic children’s loneliness, facilitating cross-site comparison and data triangulation. The details of stakeholder groups, along with the number of participants, organizational affiliation, and background details, are outlined in Table 2.

Table 2.

Stakeholder groups and their characteristics

Stakeholder Group	Number of Participants	Organizational Affiliation	Background
Parent-led organizations	18	6 parent-initiated organizations	All are parents of autistic children; All are organization leaders
Non-parent-led non-profit organizations	5	5 service-providing non-profit organizations	Specialized in autism service provision; Included two program directors
Community volunteers	7	3 community volunteer teams from college	Include college students; Participated in social integration activities, art therapy activities, home integration activities for autonomous living, and education integration activities
Other stakeholders	7	Special education schools/rehabilitation centers	Belong to government-run special education schools and rehabilitation centers; Specialized in autism education and rehabilitation

Semi-structured interviews

From 2021 to 2024, a total of 37 semi-structured interviews were conducted with four stakeholder groups using maximum variation sampling [46] to ensure diverse perspectives (see Supplemental Table 1), each lasting between 60 and 120 min. The interview guide was developed by a multidisciplinary team with expertise in sociology, management science, and qualitative research methods. A “role–goal–logic” framework was developed, with tailored interview guidelines for each group aligned to their professional backgrounds and informational value. We drew lessons from Smith and Caddick [47] and put forward a series of open-ended questions, including “Can you tell me about autistic children’s lives at home?“; “Can you describe autistic children’s feelings at home?“; “Can you describe autistic children’s state in social integration activities and other people’s state?“; “Does autistic children’s loneliness affect health?“; “What is the goal of parent-led organizations providing intervention?“; “How can parent-led organizations provide intervention?” etc. Interviews continued until data saturation was achieved. Saturation was operationalized as the point at which no new themes or substantive codes emerged from the final three consecutive interviews and two participant observation sessions conducted across all three research sites (Guangzhou, Xi’an, and Changchun). The multidisciplinary team collectively assessed saturation by comparing the themes generated from the final data collection wave with those from earlier waves. The interview guide was iteratively refined during the first round of data collection in Changchun. Two questions were revised for clarity, and one follow-up question was added to probe more deeply into the relationship between parental social needs and autistic child participation. Verbal informed consent was obtained from all participants before data collection. Anonymity was strictly maintained, and no identifying information was recorded throughout the study.

Participant observation

Participant observation focused on parent-led organizations’ core intervention activity: “social interaction outside the home.” This included outdoor hiking, educational integration activities, cultivation of collective autonomous living, parent-led organizations of activities in WeChat groups to observe the status, dialog, and communication between autistic children and their parents, other mentally handicapped children, volunteers, and activity organizers. Fieldwork includes more than 100 h of observation and informal dialog with stakeholders. Data are shown in Table 3.

Table 3.

Participation in observation details

Observation Round	Overall Observation Purpose	Specific Observation Objectives	Specific Activities	Observation Location
1st Round	Preliminary clarify the implementation process of parent-led organizations’ loneliness intervention and initially identify key intervention scenarios	1. Master the types and frequency of intervention activities; 2. Identify core stakeholders in activities; 3. Record typical activity links (e.g., activity initiation, on-site organization, post-activity communication)	Outdoor hiking, educational integration activities, social integration activities, art therapy activities, WeChat group daily exchanges, and collective autonomous living	Changchun
2nd Round	1. Capture in-depth the interaction between intervention goals and autistic children’s responses and verify the alignment between activity goals and autistic children’s needs 2. Focus on parent-led organizations’ ‘outings for social interaction outside the home’	1. Interaction frequency between autistic children and others; children’s passivity in parent-driven activities 2. Record autistic children’s social/emotional responses to different activities; 3. Instances of peer interaction or friendship formation among autistic children; reported or witnessed bullying events; and teacher support measures as described by school staff 4. Parent–child communication patterns; Patterns of autistic children’s sustained engagement during ‘Outings for Social Interaction’ activities 5. Track whether intervention activities achieve preset goals (e.g., social integration); 6. Observe parents’ guidance behaviors during activities; 7. Dissemination of the “having a second child for companionship” concept	(1) Pre-outing training: Parents received guidance in a WeChat group on how to prepare their children for interaction (e.g., practicing simple greetings); (2) In-outing support: Volunteers were assigned to each small group (2–3 autistic children) to model positive interaction; (3) Post-outing reflection: Organizations held brief discussions with parents and volunteers to discuss progress in reducing ‘lack of interaction.’	Changchun and Xi’an
3rd Round	Supplement cross-scene comparison data and confirm the consistency of intervention effects across regions	1. Compare activity implementation differences across three cities; 2. Verify the repeatability of autistic children’s responses; 3. Record the impact of the policy environment on intervention activities	All types of intervention activities (focus on cross-city replication activities)	Changchun, Xi’an, and Guangzhou
Summary	Systematically track the whole process of parent-led intervention, verify the implementation of intervention goals, and capture the subjective experience of autistic children/parents in natural scenarios	Integrate three rounds of objectives to form a “process-impact-consistency” observation chain	All types of intervention activities	Three representative cities in China

Data analysis

We adopted the practical thematic analysis method developed by Saunders et al. [48]. This method is organized around three core stages—reading, coding, and theming—and is specifically designed for multidisciplinary health services research teams. No data software was used for analysis; all coding and theme development were conducted manually to maintain closeness to the raw data. The analysis proceeded through the following three stages.

Stage 1: Familiarization and memo writing

All authors independently read the complete dataset, which comprised interview transcripts, participant observation fieldnotes (produced as described above), and relevant organizational documents collected during fieldwork. Following the guidance of the practical thematic analysis method, each author wrote individual summary memos capturing their initial, unstructured impressions. These memos focused on three key aspects specified in advance to orient the team’s attention: (1) initial perceptions of participants’ core expressions—for example, we noted that parents repeatedly used phrases like taking children out instead of alleviating loneliness, a pattern we tentatively linked to stigma avoidance; (2) preliminary coding ideas derived from particularly striking or recurrent statements—for instance, we associated the phrase having a second child for companionship with the concept of emotional loneliness alleviation; and (3) identification of ambiguous or seemingly contradictory points in the data requiring further exploration—such as discrepancies between how parent-led NPO staff and non-parent NPO staff defined intervention effectiveness.

After individual familiarization was complete, the research team held a preliminary meeting to share and compare memos. This collaborative discussion served to surface the range of initial impressions across team members, identify convergent observations (which strengthened confidence in their salience), and generate a list of initial high-frequency topics that would serve as concepts for the coding stage. Key topics identified at this stage included taking children out, the stigma of loneliness, parents’ social needs, and physical presence versus real interaction.

Stage 2: Initial coding

Using the three core research questions as conceptual anchors and the high-frequency topics from Stage 1 as concepts, the first author performed systematic initial coding of the entire dataset. Consistent with the guidance of the practical thematic analysis method, each code comprised a complete thought or sentence (s) rather than a single category label, preserving the contextual meaning of participants’ expressions. For example, the volunteer’s observation that children often walk slowly behind while parents chat happily in front was coded as Children’s passivity in parent-driven intervention—a code that retained the relational dynamic described in the original expression rather than reducing it to a decontextualized category such as passivity.

Through this systematic coding process, eight initial codes were identified across the dataset. These included ‘organizational goal translation’ (capturing the shift from family-based strategies like having a second child to organizational alternatives like peer companionship programs), loneliness dimension misalignment (capturing instances where integration activities appeared to target social loneliness but did not address emotional loneliness), stigma-driven framing (capturing the deliberate avoidance of loneliness language in organizational communications), parent social needs (capturing references to parents’ own desires for social interaction and reintegration), children’s passivity in parent-driven intervention (as described above), peer companionship as an alternative (capturing the organizational response to the limited feasibility of the second-child strategy), educational integration controversy (capturing disagreements about mainstream school inclusion), and dual-sustainability logic (capturing the interconnection between free integration activities and paid services promotion).

Stage 3: Theme development and refinement

Three follow-up analytical meetings were held to refine the initial codes and develop them into coherent themes. During these meetings, the team iteratively compared codes, discussed their interrelationships, and grouped them into preliminary thematic clusters. Discrepancies in interpretation were resolved by returning to the raw data: team members would re-read the relevant interview passages or fieldnote excerpts, and the interpretation that best accounted for the full context of the data was retained. A substantive example of this process involved the initial code parent social needs. Through team discussion and re-examination of interview and observational data, we verified that parent-led organizations explicitly designed activities to simultaneously meet children’s integration needs and parents’ social reintegration needs—for instance, by structuring activities so that parents could socialize with each other while children participated in parallel activities. This led us to merge parent social needs with related codes into a broader dual-sustainability mechanism theme, which captured the interdependence between organizational sustainability (attracting parents through free services) and parental well-being.

Following code refinement, sub-themes were identified and collated into three final themes, each corresponding to a distinct pattern in the data: (1) From Individual Family Adjustment “Having a Second Child for Companionship” to Collective “Outings for Social Interaction Outside the Home,” (2) Avoiding the Stigma and Shame Caused by the Use of the “Loneliness” Narrative, and (3) The Goal of Parents’ Reintegration into Society. The final themes were explicitly mapped to the study’s three key conceptual components (intervention goals → loneliness dimensions → conditions for health equity) to ensure direct alignment with the research questions. Theme 1 primarily addressed the first research question (goals and strategies); Theme 2 addressed the mechanisms by which stigma shapes intervention framing; and Theme 3 addressed the tension between parental and child-centered goals, informing the second and third research questions. The first author drafted initial theme descriptions, which were then reviewed, discussed, and refined through consensus among all authors. Additional insights and adjustments were incorporated as needed, and final consensus was achieved on all themes, sub-codes, and supporting quotes (see Table 4).

Table 4.

Core themes, sub-codes, and supporting quotes

Core Theme	Sub-Code	Supporting Quote
From Individual Family Adjustment “Having a Second Child for Companionship” to Collective “Outings for Social Interaction Outside the Home”	1.1 Cultural roots of “having a second child for companionship”	“As parents of autistic children, we worry about who will take care of them after we pass away. Having a second child to accompany them is our last hope—this is what we learned from the organization’s experience-sharing sessions.” (Parent-led organization leader, Xi’an)
From Individual Family Adjustment “Having a Second Child for Companionship” to Collective “Outings for Social Interaction Outside the Home”	1.2 Organizational goal translation	“Many low-income families can’t have a second child, so we launched peer companionship programs—matching autistic children with typical peers, which is cost-free and effective.” (Parent-led organization founder, Xi’an)
Avoid the Stigma and Shame Caused by the Use of the “Loneliness” Narrative	2.1 Integration narrative as stigma avoidance	“We never mention ‘loneliness’ in promotional activities—parents are afraid of being labeled ‘mentally problematic’ for their children. Using ‘integration’ makes them more willing to participate.” (Parent-led organization leader, Changchun)
Avoid the Stigma and Shame Caused by the Use of the “Loneliness” Narrative	2.2 Educational integration (a way of social integration) affects controversy	“Autistic children in mainstream schools have very low friendship opportunities and are often bullied—this makes them more lonely instead of alleviating it.” (Special education teacher, Changchun)
The Goal of Parents’ Reintegration into Society	3.1 Dual-sustainability mechanism of organizations	“Free hiking activities attract parents who have quit jobs to care for their children—they need social interaction, and when they trust us, they will buy our core training services for their children.” (Volunteer team leader, Changchun)
The Goal of Parents’ Reintegration into Society	3.2 Misalignment of the loneliness dimension	“Parents bring their children when participating in social integration activities, even if the children strongly resist collective social activities.” (Volunteer team leader, Xi’an)

Participant observation fieldnotes were recorded in two complementary forms. During each observation session, the fieldworker took contemporaneous jottings capturing key events, interactions, and verbatim quotes where possible. Within 24 h of each session, these jottings were expanded into detailed narrative fieldnotes following the observation protocols outlined in Table 3. The expanded fieldnotes included: (a) descriptive accounts of the physical setting, activity structure, and participant composition; (b) chronological narratives of key interactions, including who initiated contact, the nature of the exchange, and its duration and outcome; (c) the fieldworker’s reflexive impressions and preliminary analytic memos; and (d) any informal conversations with stakeholders that occurred during the observation. These fieldnotes were then treated as qualitative data and subjected to the same iterative thematic coding process as the interview transcripts, following the three stages described below. This ensured that observational findings contributed systematically to theme development rather than serving merely as illustrations. Specifically, observational passages were coded line by line alongside interview excerpts; codes derived from observations (e.g., children trailing behind parents, parent-to-parent conversation dominance) were compared with codes derived from interviews (e.g., parents need social interaction, children are brought along); and discrepancies or convergences between observed behavior and reported accounts were explicitly noted and used to refine our interpretations. No quantitative metrics, counts, or rates were calculated from the observational data.

Methodological rigor

To ensure trustworthiness, several strategies were employed. First, triangulation was achieved by cross-validating data from semi-structured interviews, participant observation fieldnotes, and relevant policy documents. Second, member checking was conducted by sharing key findings with five participants (two parents, two NPO staff, one volunteer). Their feedback confirmed the resonance of our interpretations, and two minor clarifications regarding the dual-sustainability mechanism were incorporated. Third, the research team comprised expertise in sociology, management science, and qualitative research methods. This interdisciplinary composition brought diverse analytical perspectives to the study but also introduced the potential for discipline-specific assumptions to influence data interpretation. To mitigate this, the team held regular reflective discussions at each stage of the analysis in which members explicitly articulated and challenged their own interpretive assumptions. For example, team members with a management science background initially tended to frame the dual-sustainability mechanism in terms of organizational strategy and resource mobilization, while those with a sociology background emphasized structural constraints and cultural norms. Through reflective dialogue, these perspectives were integrated to produce a more comprehensive interpretation that acknowledged both organizational agency and structural context. Additionally, the first author maintained a reflexive journal throughout the fieldwork period, recording personal reactions, potential biases, and evolving interpretations, which was consulted during team discussions to ensure transparency about the researcher’s influence on the data collection and analysis process.

Results

Three themes were obtained from the analysis: from Individual Family Adjustment “Having a Second Child for Companionship” to Collective ‘Outings for Social Interaction Outside the Home”; Avoid the Stigma and Shame Caused by the Use of the “Loneliness” Narrative; and The Goal of Parents’ Reintegration into Society. The interaction of these three further intensifies parents’ attention to the possible negative effects of loneliness in autistic children and the effectiveness of intervention in reducing health inequality. Throughout this section, key terms are used in accordance with the operational definitions provided in Table 1, which distinguishes between subjective experiences (loneliness, solitude) and objective states (being alone, staying at home, lack of interaction).

From individual family adjustment “having a second child for companionship” to collective “outings for social interaction outside the home”

From individual family adjustment to collective outings

Parent-led organizations pursue two interrelated core goals: (1) shifting from intra-family strategies (exemplified by but not limited to ‘having a second child for companionship’) to accessible organizational alternatives such as peer companionship programs, and (2) organizing structured collective outings that bring autistic children into social settings. The following details how these goals are implemented.

Four parents from the parent-led organizations reported that the idea of having a second child for companionship was inspired by the organizational social integration activities—where families with two children shared how siblings alleviate autistic children’s emotional loneliness, and this individual family adjustment idea has been promoted within the organizations. This strategy targets ‘emotional loneliness’ (defined as a lack of intimate bonds) instead of just ‘staying at home’ (prolonged physical isolation).

Unfortunately, divorced mothers constrained by economic conditions and mothers who lack access to kin support perceive this intra-family adjustment as difficult to achieve. A leader of a parent-led organization, who is also the mother of an autistic child, explained, “Many parents who participate in our activities believe that the family strategy of having a second child as a companion only applies to families with good circumstances. Considering the prevalence of this reality, we have adjusted our service content. If parents of autistic children believe that their children need companionship from peers to alleviate loneliness, companionship from non-biological peers is also a cost-free option. Our primary goal is to have parents take their children outside.”

The head of a parent-led organization expanded his views on the parent-led organization’s intervention goal: “The parent-led organization’s intervention goal of ‘outings for social interaction outside the home’ is implemented through two layers: first, guiding parents to adjust family ideas (e.g., replacing the companionship strategy of having a second child with peer companionship) to reduce children’s emotional loneliness; second, organizing structured collective activities (e.g., volunteer-guided group hiking) to help parents and autistic children transition from ‘unstructured individual outings’ to ‘purposeful social integration’—a key goal of parent-led organizations.”

Parent-led organizations guide parents to prioritize ‘breaking children’s prolonged stay at home’—a key precursor to loneliness—by organizing collective outings that increase autistic children’s physical presence in social scenes (to reduce lack of interaction). To a certain extent, a parent-led organization’s goal caters to the needs of parents who are willing to take their children outside. A parent who participates in the organization’s activities stated, “At home, our children are slow to respond and often lose their temper with us. This long-term situation is detrimental to both our children and us—they have to get out of the house, but I’m afraid of the strange looks from others. The social integration activities organized by the parent-led organization have solved this problem.”

We note that ‘having a second child for companionship is deeply tied to China’s collectivist cultural value of ‘intergenerational mutual support.’ For parents of autistic children who face lifelong caregiving pressures, the strategy reflects a desire to ensure their child has emotional support after their passing. Parent-led organizations recognize this cultural context but also address its limitations: they organize ‘peer companionship programs’ (matching autistic children with typically developing peers) for families unable to have a second child, ensuring the strategy is inclusive.

Systematic comparison across the three rounds of participant observation revealed consistent patterns across different activity types. Whether in outdoor hiking (Changchun, Round 1) or collective autonomous living practice (Xi’an, Round 2), a recurring dynamic was observed: parents and volunteers typically engaged in animated conversation with each other at the front of the activity group, while autistic children trailed behind, often silent and minimally interactive. In large-group hiking (6–10 families), children’s passivity was most pronounced; in small-group art therapy (2–4 families), marginally more child-to-child interaction was observed, though still limited primarily to parallel rather than reciprocal engagement. This cross-activity consistency suggests that the pattern of ‘parent-focused social interaction with children physically present but emotionally peripheral’ was not an artifact of any single activity type but rather a structural feature of how integration activities were designed and facilitated.

However, it is important to note exceptions that illuminate the conditions under which activities can succeed. One volunteer in Xi’an described a counterexample involving a small group: an autistic child who initially resisted participation and cried at the activity’s outset later became actively engaged when the volunteer introduced a therapy dog. The child began smiling, initiated physical contact with the dog, and even briefly acknowledged another child who approached to also pet the animal. This negative case is instructive: it suggests that when an activity incidentally aligns with a child’s specific interests and sensory preferences—and is conducted in a small, low-pressure setting—meaningful engagement can emerge. However, the current ‘integration-first’ model, driven by organizational goals of mass participation and parental social needs, does not systematically create such conditions. The dog interaction case was an exception, not the rule, precisely because parent-led organizations do not routinely design activities around individual children’s interests, sensory profiles, or communication styles.

Regarding the “outings for social interaction outside the home,” the data indicate that strategies differentially influence the two loneliness dimensions. Peer companionship programs and sibling bonds were perceived as targeting emotional loneliness by fostering intimate, long-term relationships. In contrast, large-group outings and educational integration were primarily directed at social loneliness, aiming to expand social networks and reduce physical isolation. However, these assessments rely on adult proxy reports and observations. Whether autistic children themselves experienced reduced emotional loneliness through these strategies could not be directly verified. This limitation underscores the need for cautious interpretation of findings concerning emotional states.

Avoiding the stigma and shame caused by the use of the “Loneliness” narrative

As a strategy, parent-led organizations seek to attract parents to accompany their autistic children in participating in their activities by launching collective programs such as social integration or life integration, instead of using loneliness alleviation as a promotional focus. Three leaders of parent-led organizations—who are also parents of autistic children—emphasized that many parents and children refuse to disclose their identities owing to the fear of facing discrimination; they perceive acting alone as being rendered vulnerable. Compared to acting alone, collective action eliminates the risk of parents being discriminated against when addressing the psychological issues of their autistic children caused by loneliness. A majority of founders of parent-led organizations believe this is the reason why various programs nationwide that promote “collective integration” have become increasingly popular. These “integration” programs accurately capture the fear of helplessness and isolation that parents anticipate facing when they and their autistic children are in the process of alleviating loneliness.

The stigmatization potentially resulting from replacing loneliness narratives with integration narratives undermines the possibility of linking loneliness to health issues. In interviews discussing the relationship between loneliness and the health of autistic children, parent-led organizations focused more on the short-term “physical presence” goals of educational integration and social integration, instead of on alleviating loneliness through participation in integration activities to improve health. Almost all interviewees from parent-led organizations mentioned that they have always been committed to enabling autistic children to study alongside typically developing children, instead of enrolling them in special education schools. The parent-led organizations frame educational integration as a strategy to address social loneliness (by reducing lack of interaction with non-autistic peers). A leader of a parent-led organization that launched an educational integration program specifically emphasized: “When autistic children stay at home and only interact with their parents, the parents want their children to engage with the outside world, but they are unwilling to send their children to special schools for autistic children. When all children are autistic children, what kind of interaction can they possibly have? This environment may not be very different from the one where autistic children stay at home alone. All parents in our organization are striving to get their autistic children into regular educational settings.” However, two other teachers from government-run special schools for children with disabilities pointed out that in “regular educational settings for typically developing children, autistic children have an extremely low opportunity of making friends and are often bullied by classmates, which may lead to more psychological problems.“Qualified special education teachers noted that while promoting the physical and social integration of autistic children into educational settings with typically developing children is regarded by parent-led organizations as the most important goal for addressing these children’s loneliness (lack of interaction with non-disabled peers), this goal may cause more psychological distress to autistic children instead of alleviating ‘emotional loneliness’ (which requires intimate bonds).

In general, to a certain extent, narratives of integration alleviate the stigmatization and sense of shame that parents—acting on a family basis—may face while addressing the loneliness of autistic children on their own. However, the “physical presence” objective behind the range of interventions offered by parent-led organizations did not stem primarily from the fact that “integration” can improve the health issues of autistic children caused by loneliness. These narratives of integration encompass collective social interaction, educational integration, and collective daily life focused on “physical presence,” instead of using narratives of overcoming loneliness.

The goal of parents' Reintegration into society

Certain special education teachers and leaders of NPOs founded by non-parents have pointed out that the free “social integration” programs launched by parent-led organizations aim to attract parents who are willing to reintegrate into society, instead of attracting autistic children. A special education teacher who organizes weekend group hiking activities explained: “Social integration programs are usually provided for free to parents who are likely to purchase their core programs for autistic children or have already purchased their services. These free programs are highly appealing to parents. Most parents spend years at home caring for their autistic children—many mothers have quit their jobs to stay home and care for their children. These parents feel lonely and need an outlet, as well as social interaction. In many cases, autistic children participate in our integration activities due to their parents’ wishes, not their own. Some autistic children, as observed by me and volunteers, even appeared to strongly resist participating in social integration activities—just like the crying male autistic child you just saw during fieldwork. Parent-led organizations pursue multiple goals in providing social integration activities, but these goals are not necessarily aimed at actually meeting the needs of autistic children.”

Synthesizing across the three themes, stakeholders identified three perceived challenges that may hinder conditions for loneliness-related health equity: (1) interventions that prioritize physical presence in social settings rarely cultivate meaningful belonging, leaving emotional loneliness unaddressed; (2) the deliberate avoidance of the term ‘loneliness ' in organizational discourse sever the conceptual link between loneliness and health, shifting focus to short-term participation metrics; and (3) the entanglement of parents ' social reintegration goals with children ‘s interventions often subordinates children ‘s loneliness needs to parental needs, risking forced participation. These challenges, while not directly measuring health outcomes, indicate potential barriers to creating the conditions necessary for health equity.

Discussion

This exploratory study analyzes how parent-led organizational practices may relate to conditions potentially relevant to loneliness-related health disparities without directly measuring health outcomes or equity indicators. Autistic children often experience prolonged loneliness, and their families may lack support from relatives and friends [49]. In this context, parents serve as primary interveners and caregivers [50], while parent-led organizations act as key coordinators—forming an “organization-led, parent-implemented” dual-agent intervention model that underscores their interdependence. This study focuses on how parent-led organizations shape intervention practices through goal-setting, strategy design, and behavioral guidance, and analyzes how these practices are perceived to relate to conditions for health equity. It specifically addresses three pre-specified research questions: (1) What are the core goals and specific implementation strategies of parent-led organizations’ interventions to alleviate autistic children’s loneliness in China—particularly those centered on social integration? (2) How do these goals and strategies differentially influence autistic children’s social and emotional loneliness within a collectivist cultural context? (3) What key challenges may hinder these interventions from creating conditions conducive to loneliness-related health equity (i.e., reducing health disparities potentially caused by unaddressed loneliness) in autistic children?

This study’s findings suggest three interrelated patterns in how parent-led organizations design and implement interventions, which we describe as the goal translation pattern, the behavior coordination pattern, and the dual-sustainability pattern. While these patterns were consistently observed across our three study sites, we present them as stakeholder-described and observationally documented regularities rather than as universally applicable causal mechanisms. This exploratory study analyzes how parent-led organizational practices may relate to conditions for health equity. First, the goal translation pattern and the dual-sustainability pattern are not independent: organizations’ shift from family-based to collective strategies (Theme 1) is closely tied to their need to attract and retain parents through services that meet parental social needs (Theme 3). This interdependence means that interventions are designed to serve dual—and sometimes conflicting—purposes from the outset. Second, the behavior coordination pattern (Theme 2) functions as a crucial enabler of both other patterns: by framing all activities under the destigmatized umbrella of ‘integration,’ organizations can simultaneously pursue children’s social exposure and parents’ social reintegration without explicitly confronting the uncomfortable question of whether either goal is being meaningfully achieved.

A critical finding, which can be powerfully interpreted through the lens of the Presence Without Belonging (PWB) framework [37], is that parent-led organizations insufficiently distinguish between physical presence and meaningful social connection. The PWB framework posits that belonging requires three conditions: recognition (being understood and taken seriously as a social subject), access (participation without extraordinary communicative, sensory, or temporal effort), and sustainability (participation that can be maintained over time without disproportionate cumulative cost). When one or more of these conditions is absent, individuals may be socially present yet experience persistent loneliness. This framework resonates with and extends the earlier distinction between objective and subjective social isolation drawn by Masi et al. [20], who demonstrated in their analysis that interventions targeting maladaptive social cognition are significantly more effective at reducing loneliness than those merely increasing social contact. The autistic children observed in this study were often physically ‘integrated’ into social settings—present at hiking activities, seated in mainstream classrooms, participating in art therapy sessions—yet they remained fundamentally without belonging.

Our observational data can be interpreted through the lens of the three PWB conditions, suggesting that all three conditions appeared unmet in the integration activities we documented. When one or more of these conditions is absent, individuals may be socially present yet experience persistent loneliness [37]. Specifically, our fieldwork suggests the following patterns: First, recognition was often absent: autistic children’s modes of communication—whether non-speaking, echolalic, or differently timed—were not adequately understood or accommodated by peers, volunteers, or even the activity structures themselves. Children were present in social spaces, but their ways of being social were not recognized as valid forms of participation. Second, access frequently required extraordinary effort: the sensory environments of group outings (noise, unpredictable movement, unfamiliar settings) imposed demands that the activity designs did not mitigate, meaning that mere presence came at a high cost to the child. Third, sustainability was undermined: because activities were experienced as draining rather than intrinsically rewarding, continued participation depended on parental insistence rather than the child’s own motivation, making long-term engagement unlikely to yield cumulative benefits. For example, during observed hiking activities, autistic children often walked passively behind parents and volunteers, with minimal meaningful interaction—they were present, but they did not belong. When volunteers noted this inefficacy, organizational leaders emphasized ‘companionship’ as sufficient, overlooking that loneliness alleviation requires more than proximity.

Critically, Hymas et al. also highlighted the near-total absence of evidence on effective loneliness interventions for autistic populations [12]—a gap that our study helps to illuminate by identifying why the most common intervention approach (integration-focused activities) may be structurally misaligned with the conditions necessary for belonging.

The conflation of observable behavior with subjective experience is another dimension of this problem. Parent-led organizations in our study frequently treated ‘lack of interaction’ as synonymous with loneliness, and therefore treated increased physical presence in social settings as synonymous with loneliness alleviation. However, as Buecker et al. [21] and Landmann and Rohmann [24] clarify, social loneliness (deprivation of meaningful group connections) and emotional loneliness (absence of intimate bonds) are distinct dimensions with different antecedents and consequences. Our findings suggest that integration activities almost target the behavioral precursor to social loneliness—staying at home or lack of interaction—while leaving emotional loneliness unaddressed, because the latter requires intimate relationships that cannot be generated through group exposure alone. While the ICF defines participation as engagement in life situations [51], Borg and Willoughby [52] note that negative outcomes of solitude stem from poor sociability, not solitude itself. Some autistic children may genuinely prefer low-social-contact environments, and the distress we observed during integration activities may, in some cases, reflect a mismatch between the autistic child’s preferences and the activity’s demands rather than a loneliness-related need. This gap may weaken intervention efficacy: while social integration activities appear to target ‘lack of interaction,’ educational integration in mainstream schools (framed by parent-led organizations as a social loneliness solution) was reported by special education teachers to potentially exacerbate psychological distress due to low friendship opportunities and bullying. This conflation of observable behavior with subjective experience is further complicated by the heterogeneity of autistic social preferences: while some autistic children may desire more social connection, others may genuinely prefer low-social-contact environments [11, 52]. It is important that we respect neurodiversity rather than assuming that all autistic children require—or benefit from—increased social exposure.

These conceptual considerations have direct implications for intervention design. Existing loneliness interventions highlight the need for specificity: financial support [53] and skill-building approaches [54] demonstrate that effective interventions are those that target the specific mechanism producing loneliness rather than applying a generic social contact solution. However, any such strategies must be evaluated against the PWB conditions: Does the activity provide recognition of autistic modes of sociality? Does it ensure access without disproportionate effort? Is it sustainable over time without cumulative cost to the child?

Our observations documented several instances where autistic children appeared to resist or become distressed during integration activities organized primarily to meet parental social needs. These observations raise important ethical questions regarding assent, autonomy, and the potential for well-intentioned interventions to cause inadvertent harm. When children are brought to activities primarily to serve parental social reintegration goals, and when those children actively resist participation, the ethical justification for their presence becomes tenuous. This tension is particularly acute given that autistic children may have limited capacity to formally decline participation or may express dissent through behaviors that are not recognized as valid refusal. While we do not suggest that parent-led organizations acted unethically—indeed, they operate with limited resources and genuine care—our findings highlight the need for intervention designs that systematically prioritize autistic children’s own preferences, including, for some, a legitimate preference for solitude over forced social participation. Future research and practice should develop protocols for assessing child assent and for offering alternative, lower-demand engagement options when children signal discomfort.

Our findings suggest that, to enhance the likelihood of addressing both dimensions of loneliness, parent-led organizations may benefit from explicitly distinguishing between social and emotional loneliness and between ‘loneliness’ (negative experience) and ‘solitude’ (a potentially chosen and neutral state)—a distinction operationalized in Table 1. This study has several strengths. To the best of our knowledge, it is the first to explore the role of parent-led organizations in autistic children’s loneliness-related health equity, with improved rigor via differentiated interview questions—volunteers focus on group observations, non-parent NPOs on industry evaluation, and teachers on mechanism analysis. Second, this study pays attention to the influence of collectivist culture on the objectives and implementation strategies of parent-led organizations. It unpacks the role of collectivism as not only an intervention goal but also a stigma buffer. Finally, we are more concerned about conceptual clarity pertaining to loneliness, solitude, and health. This study challenges one-size-fits-all integration strategies, emphasizing the need to distinguish loneliness dimensions when parent-led organizations provide social integration services as intervention strategies and adapt to autistic children’s heterogeneity.

This study has a few limitations: (1) Sample limitation and selection bias: The sample underrepresents home-bound or hospitalized autistic children and, critically, families who are not engaged with parent-led organizations—potentially including those who are more socially isolated, face greater structural barriers, or have chosen to disengage from such groups. Consequently, our findings primarily reflect experiences within a relatively engaged subpopulation and should not be generalized to all families of autistic children in China. The outings for social interaction model we describe may be entirely inaccessible to families facing the most severe forms of marginalization. However, considering the growing trend of parent-led organizations organizing ‘outings for social interaction outside the home,’ this exploratory research provides important insights into an emerging phenomenon. Any claims about intervention effectiveness (or lack thereof) should be understood as applying specifically to the subpopulation we were able to observe. (2) Absence of autistic perspectives and risk of proxy inference. All data derive from proxy informants—parents, organization leaders, volunteers, and professionals—rather than from autistic children themselves. Consequently, all claims regarding autistic children’s subjective experiences—including loneliness, emotional responses to activities, and preferences for participation—represent inferences drawn from observed behavior and stakeholder reports, not direct accounts of children’s internal states. This limitation is particularly important given documented discrepancies between external observations and autistic individuals’ internal experiences [55]. Adults in our study frequently interpreted observable behaviors such as a lack of interaction, not responding to peers, or staying at home as indicators of loneliness. However, these behaviors may equally reflect being alone without subjective distress, a legitimate preference for solitude, engagement in a different mode of social relating not recognized by observers, or a response to an overstimulating environment rather than a lack of desired social contact. As Borg and Willoughby [52] caution, negative outcomes associated with solitude often stem from poor sociability rather than from solitude itself. Our interpretations of children’s emotional states should therefore be understood as adult stakeholder perceptions of children’s experiences, not as verified accounts of those experiences. The study’s primary aim was to understand organizational and parental goal-setting processes accessible through adult informants. Throughout this manuscript, we have recalibrated our language to attribute observations to the relevant stakeholders (e.g., volunteers observed that children appeared passive) rather than making unqualified claims about autistic children’s internal states. Future research should prioritize participatory and inclusive designs that center autistic voices, using adapted communication methods to ensure authentic representation of autistic children’s own perspectives on loneliness, social participation, and the interventions designed to support them. (3) Although data collection spanned 2021 to 2024, our analysis was primarily cross-sectional and did not systematically examine how children’s responses, parental strategies, or organizational practices evolved over time. Notably, the dual-sustainability mechanism we identified—where free integration activities serve as a pipeline for paid services—implies a temporal sequence in organizational engagement that warrants dedicated longitudinal investigation. Future research should employ longitudinal qualitative designs to track how the dynamics we have identified may shift over time.

Conclusion

The core findings of this research underscore three interwoven realities of parent-led organizations’ interventions. Together, these dynamics help explain why parent-led interventions, despite increasing autistic children’s social exposure, may not consistently create the conditions necessary for meaningful belonging and loneliness reduction that could, in turn, underpin future health equity efforts. Collectively, these dynamics suggest that while parent-led interventions meaningfully expand autistic children’s social exposure, further refinement may be needed to foster the conditions for deep belonging and lasting loneliness reduction that could support future health equity efforts. Nevertheless, these complexities should not overshadow the invaluable role of parent-led organizations. Positioned at the intersection of family lived experience and community care, these groups fill essential gaps that formal service systems often cannot reach, offering culturally grounded, peer-supported pathways to connection. Their adaptive strategies reflect profound experiential wisdom and an unwavering dedication to improving the lives of autistic children and their families.

Authors’ contributions

XW and XG wrote the main manuscript text. All authors reviewed the manuscript.

Funding

No funding to declare.

Data availability

The datasets generated and/or analysed during the current study are not publicly available due the data contain potentially sensitive participant information but are available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

The ethics approval was approved by the ethics committee of the School of Economics and Management, Changchun University of Technology. The study adhered to the Declaration of Helsinki. Verbal informed consent was obtained from all participants.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.