Reconceptualising Independence in Autistic Adulthood: Comparing Chinese Parents' Perspectives on Autistic Adults with and without Intellectual Disabilities
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| Title: | Reconceptualising Independence in Autistic Adulthood: Comparing Chinese Parents' Perspectives on Autistic Adults with and without Intellectual Disabilities |
|---|---|
| Language: | English |
| Authors: | Anqi Huang (ORCID |
| Source: | Autism: The International Journal of Research and Practice. 2026 30(1):150-162. |
| Availability: | SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: https://sagepub.com |
| Peer Reviewed: | Y |
| Page Count: | 13 |
| Publication Date: | 2026 |
| Document Type: | Journal Articles Reports - Research |
| Descriptors: | Parent Attitudes, Autism Spectrum Disorders, Adults, Intellectual Disability, Daily Living Skills, Aspiration, Needs, Competence, Family Role, Parent Role, Cultural Influences, Expectation, Barriers, Coping |
| DOI: | 10.1177/13623613251374905 |
| ISSN: | 1362-3613 1461-7005 |
| Abstract: | Achieving independence in adulthood remains a widely held developmental aspiration. However, prevailing frameworks often equate independence with functional proficiency and physical separation from the family, rarely capturing the lived realities and priorities of autistic individuals and their families. This qualitative study represents the first exploration of how families of autistic adults in mainland China understand, support and engage with the concept of independence. Semi-structured interviews were conducted with 20 parents of autistic adults, including individuals both with and without intellectual disabilities. Through reflexive thematic analysis, four interrelated themes were identified: (1) Doing Independence Versus Being Independent; (2) From Aspirations to Reconceptualisations; (3) Invisible Needs and Misrecognised Competence; and (4) Independence as a Relational Process. These findings challenge reductive definitions of independence as mere task completion or detachment from familial support. Instead, they foreground the emotional, relational and cultural dimensions that shape independence across the lifespan. The study highlights how families actively recalibrate expectations, navigate structural constraints and advocate for contextually attuned support. In doing so, it underscores the need to reconceptualise independence as a dynamic, co-constructed process that honours both the individuality of autistic adults and the ecological contexts within which their lives unfold. |
| Abstractor: | As Provided |
| Entry Date: | 2026 |
| Accession Number: | EJ1494108 |
| Database: | ERIC |
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| FullText | Links: – Type: pdflink Url: https://content.ebscohost.com/cds/retrieve?content=AQICAHj0k_4E0hTGH8RJwT4gCJyBsGNe_WN95AvKlDbXJGqwxwEhZwBuByyILEQleH5JJn6hAAAA4TCB3gYJKoZIhvcNAQcGoIHQMIHNAgEAMIHHBgkqhkiG9w0BBwEwHgYJYIZIAWUDBAEuMBEEDLP1Oed1OT1Auu5zGgIBEICBmeI1Og86SyS8AlcQFsVTMra3-KPkPTRxRMTPex793meGn8dFOJzI-EtufoKrAufBJZtOucLmu2uZmJcfVQAY8dy-6JrG4d0N74j5cDDbmXt2OBCdWnV0mpP6RdkWOfP-Lt-c0YY2mMGGGqWDwUNC0RwxzkCpMVU3c88az_NFHqI1ldo5_AbDJ2YLDy_2BgGbKEULSJ8CVTiE6Q== Text: Availability: 1 Value: <anid>AN0190387823;f9d01jan.26;2025Dec23.05:52;v2.2.500</anid> <title id="AN0190387823-1">Reconceptualising independence in autistic adulthood: Comparing Chinese parents' perspectives on autistic adults with and without intellectual disabilities </title> <p>Achieving independence in adulthood remains a widely held developmental aspiration. However, prevailing frameworks often equate independence with functional proficiency and physical separation from the family, rarely capturing the lived realities and priorities of autistic individuals and their families. This qualitative study represents the first exploration of how families of autistic adults in mainland China understand, support and engage with the concept of independence. Semi-structured interviews were conducted with 20 parents of autistic adults, including individuals both with and without intellectual disabilities. Through reflexive thematic analysis, four interrelated themes were identified: (<reflink idref="bib1" id="ref1">1</reflink>) Doing Independence Versus Being Independent; (<reflink idref="bib2" id="ref2">2</reflink>) From Aspirations to Reconceptualisations; (<reflink idref="bib3" id="ref3">3</reflink>) Invisible Needs and Misrecognised Competence; and (<reflink idref="bib4" id="ref4">4</reflink>) Independence as a Relational Process. These findings challenge reductive definitions of independence as mere task completion or detachment from familial support. Instead, they foreground the emotional, relational and cultural dimensions that shape independence across the lifespan. The study highlights how families actively recalibrate expectations, navigate structural constraints and advocate for contextually attuned support. In doing so, it underscores the need to reconceptualise independence as a dynamic, co-constructed process that honours both the individuality of autistic adults and the ecological contexts within which their lives unfold. Independence is often positioned as a hallmark of successful adulthood. This study explored how families in mainland China understand and support independence in autistic adults from the perspective of their parents. We talked with 20 parents of autistic adults, whose children included 11 with and 9 without intellectual disabilities, to learn how they understand and support their children's independence. Parents described independence not simply as living alone or managing daily tasks without help, but as a process that develops gradually over time, shaped by emotions, relationships and cultural values. Some autistic adults demonstrated strong practical skills but still required support with emotional regulation or unexpected situations. Parents also shared how their hopes evolved, with greater focus placed on happiness and well-being rather than traditional adult milestones. Cultural values, such as family ties and mutual support, played a significant role in shaping these perspectives. The study highlights the need for flexible and respectful support systems that honour individual differences and promote meaningful, self-defined forms of independence for autistic adults.</p> <p>Keywords: adults; autism; independence; parent; qualitative research; reflexive thematic analysis</p> <hd id="AN0190387823-2">Introduction</hd> <p>Autistic adulthood remains significantly under-explored, particularly with regard to how independence is conceptualised and supported. Traditional developmental psychology has long positioned independence as a central marker in the transition to adulthood ([<reflink idref="bib3" id="ref5">3</reflink>], [<reflink idref="bib4" id="ref6">4</reflink>]; [<reflink idref="bib36" id="ref7">36</reflink>]; [<reflink idref="bib54" id="ref8">54</reflink>]), often adopting a narrow lens that equates it with self-sufficiency, typically defined in terms of financial stability, living independently and emotional self-regulation ([<reflink idref="bib4" id="ref9">4</reflink>]; [<reflink idref="bib19" id="ref10">19</reflink>]). Indeed, independence as a construct is inherently complex ([<reflink idref="bib27" id="ref11">27</reflink>]), as scholars from diverse academic disciplines have long debated both its definition and its relevance across varied populations. The notion of independence as synonymous with self-sufficiency has come under increasing scrutiny, particularly as more young adults rely on familial and social support well into adulthood ([<reflink idref="bib47" id="ref12">47</reflink>]). In reality, individual independence is embedded within family contexts, where long-term interactions and emotionally attuned caregiving relationships shape how independence is both understood and lived ([<reflink idref="bib6" id="ref13">6</reflink>]). Although observable abilities and structural self-sufficiency offer a pragmatic basis for defining independence, such indicators often obscure the relational and developmental processes through which these capacities are formed. Parents, as key members of an autistic individual's support network ([<reflink idref="bib52" id="ref14">52</reflink>]), play a pivotal role in facilitating independence. Drawing on their long-term understanding of their child's developmental trajectory, they are uniquely positioned to anticipate potential challenges, identify evolving support needs and shape meaningful pathways towards independence ([<reflink idref="bib29" id="ref15">29</reflink>]). Their sustained involvement renders parental insights indispensable to understanding how independence is conceptualised, co-constructed and enacted in everyday life.</p> <p>Although autistic individuals navigate developmental tasks similar to those of their neurotypical peers, the existing body of research specifically addressing independence among autistic adults remains limited and overwhelmingly adheres to functionalist perspectives that prioritise externally observable behaviours and skills ([<reflink idref="bib11" id="ref16">11</reflink>]; [<reflink idref="bib13" id="ref17">13</reflink>]; [<reflink idref="bib24" id="ref18">24</reflink>]; [<reflink idref="bib51" id="ref19">51</reflink>]; [<reflink idref="bib53" id="ref20">53</reflink>]). Much of this literature continues to rely on externally imposed benchmarks of adulthood, predominantly defining independence through the ability to perform practical daily living tasks such as meal preparation, housekeeping, transportation, financial management ([<reflink idref="bib5" id="ref21">5</reflink>]; [<reflink idref="bib18" id="ref22">18</reflink>]; [<reflink idref="bib58" id="ref23">58</reflink>]), alongside securing employment ([<reflink idref="bib24" id="ref24">24</reflink>]), achieving independent living and maintaining social relationships ([<reflink idref="bib17" id="ref25">17</reflink>]; [<reflink idref="bib23" id="ref26">23</reflink>]). These conventional indicators have been argued to reflect measurement limitations in earlier studies, potentially contributing to inflated estimates of poor outcomes for autistic adults ([<reflink idref="bib34" id="ref27">34</reflink>]; [<reflink idref="bib42" id="ref28">42</reflink>]; [<reflink idref="bib44" id="ref29">44</reflink>]). In response, recent research has sought to expand the conceptualisation of autistic adulthood by incorporating subjective dimensions, such as subjective well-being ([<reflink idref="bib49" id="ref30">49</reflink>]), and autonomy ([<reflink idref="bib44" id="ref31">44</reflink>]). These methodological developments signal a promising shift, yet the dominant outcome frameworks remain heavily shaped by what [<reflink idref="bib38" id="ref32">38</reflink>] described as 'value-based decisions about what activities researchers consider to be a good outcome'. Even within these broadened frameworks, there remains a marked absence of attention to how autistic adults and their families themselves define, pursue and evaluate independence, with many studies continuing to overlook lived experience, relational interdependence and personally meaningful goals that may lie outside standardised developmental expectations ([<reflink idref="bib7" id="ref33">7</reflink>]; [<reflink idref="bib26" id="ref34">26</reflink>]).</p> <p>A small but growing body of qualitative research has begun to explore how autistic adults and their families experience independent living. [<reflink idref="bib26" id="ref35">26</reflink>] interviewed autistic adults and parents in Canada, identifying daily living skills, financial management, integrated community living, and the regulation of autistic traits as key elements of independent living, reflecting a functional emphasis that foregrounded observable competencies over experiential or relational aspects. In a further exploration of independence, [<reflink idref="bib40" id="ref36">40</reflink>] extended this line of inquiry into the domestic environment, examining how autistic individuals and their families in Canada perceived the home as a context for supporting independence, with particular emphasis on environmental factors that facilitated everyday functioning. Both Canadian studies incorporated family perspectives. At the same time, more recent work has increasingly foregrounded autistic adults' own narratives of independence, signalling a broader shift towards centring autistic voices in adulthood research. [<reflink idref="bib14" id="ref37">14</reflink>] conducted interviews with verbally fluent autistic adults in the US Midwest, exploring their experiences of driving, daily living and decision-making. A subsequent Australian study captured the independent living experiences of autistic adults, exploring how significant independence was to them and emphasising the value of being able to make choices and exercise control in their daily lives ([<reflink idref="bib1" id="ref38">1</reflink>]).</p> <p>Despite growing interest in how autistic adults conceptualise and pursue independence, considerably less is known about how families understand and support this process, particularly in the case of autistic adults with intellectual disabilities (ID), who are often reported to have fewer opportunities for independence and greater support needs across adulthood ([<reflink idref="bib11" id="ref39">11</reflink>]). Nonetheless, with appropriate and sustained support, autistic adults with ID can develop independence, especially when parents serve not only as caregivers but also as co-constructors, providing the guidance needed to navigate adult life ([<reflink idref="bib48" id="ref40">48</reflink>]). As [<reflink idref="bib55" id="ref41">55</reflink>] note, parents have been described as the 'linchpin' of service systems for individuals with ID and are therefore considered ideal collaborators for intervention. While the inclusion of autistic individuals' perspectives in research is undoubtedly essential, studies such as [<reflink idref="bib1" id="ref42">1</reflink>] also highlight the continuing significance of parents in supporting the transition to independent living, and discussions about independence in the family home are often considered key preparatory practices. Research has shown that parents' expectations and perceptions of independence can influence the opportunities and experiences available throughout the transition process ([<reflink idref="bib30" id="ref43">30</reflink>]). Moreover, prior studies have indicated that moderate agreement is often observed between parents and their children regarding visions for the future ([<reflink idref="bib29" id="ref44">29</reflink>]), further underscoring the relevance of examining parental perspectives. These findings highlight the importance of explicitly examining how parental perspectives intersect with autistic adults' experiences of independence, particularly within culturally diverse contexts.</p> <p>Yet much of the existing literature remains situated within Western cultural frameworks, with limited attention to how sociocultural values influence the meanings and practices of independence across different societies. Indeed, perspectives on independence in adulthood are deeply informed by cultural values and social contexts ([<reflink idref="bib34" id="ref45">34</reflink>]). For example, collectivist cultures often emphasise interdependence and familial responsibility, whereas individualist cultures are more likely to prioritise autonomy and self-reliance, although both orientations may coexist within the same cultural milieu ([<reflink idref="bib45" id="ref46">45</reflink>]). These dynamics are particularly relevant in the context of autism, where independence is frequently achieved through relational support and shared agency rather than through detachment or isolation ([<reflink idref="bib43" id="ref47">43</reflink>]).</p> <p>The present study explored how Chinese parents of autistic adults, both with and without ID, understand, support and reconceptualise their children's independence. Drawing on in-depth semi-structured interviews and guided by reflexive thematic analysis (RTA), the study is grounded in an inductive approach that avoids imposing a predefined model of independence and seeks to move beyond normative thresholds towards a more inclusive, culturally grounded and individually responsive understanding of what it means to be independent in autistic adulthood.</p> <hd id="AN0190387823-3">Method</hd> <p></p> <hd id="AN0190387823-4">Participants and recruitment</hd> <p>We invited parents of autistic adults through the Autism Cohort of Nanjing Brain Hospital, social media platforms and community networks. Prospective participants first completed a brief self-report form collecting demographic information about themselves and their children, including age, educational background, diagnostic history and contact details. Researchers then reviewed the responses to determine eligibility and arranged interviews with those who met the inclusion criteria. Eligible participants were biological or foster parents of autistic adults (aged 18 and above) with a formal clinical diagnosis of autism. All participants were fluent in spoken or written Chinese. Efforts were made to ensure representation across a range of cognitive profiles and support needs, including both individuals with and without ID. Interviewers had no prior relationship with participants. A total of 20 parents participated in the study, including 11 parents of autistic adults with ID and 9 parents of autistic adults without ID. The average age of parents in the ID group was 52.18 years (SD = 6.94) and 51.00 years (SD = 4.12) in the group without ID (see Table 1).</p> <p>Table 1. Demographic characteristics of parents and autistic adults (N = 20).</p> <p>Graph</p> <p> <ephtml> &lt;table&gt;&lt;colgroup&gt;&lt;col align="left" /&gt;&lt;col align="char" char="." /&gt;&lt;col align="char" char="." /&gt;&lt;/colgroup&gt;&lt;thead&gt;&lt;tr&gt;&lt;th align="left" rowspan="2"&gt;Variable&lt;/th&gt;&lt;th align="left" rowspan="2"&gt;With ID(N = 11)&lt;/th&gt;&lt;th align="left"&gt;Without ID&lt;/th&gt;&lt;/tr&gt;&lt;tr&gt;&lt;th align="left"&gt;(N = 9)&lt;/th&gt;&lt;/tr&gt;&lt;/thead&gt;&lt;tbody&gt;&lt;tr&gt;&lt;td colspan="3"&gt;&lt;bold&gt;Parent characteristics&lt;/bold&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td colspan="3"&gt;Relation to child (N, %)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt; Mother&lt;/td&gt;&lt;td&gt;8 (72.7)&lt;/td&gt;&lt;td&gt;9 (100.0)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt; Father&lt;/td&gt;&lt;td&gt;3 (27.3)&lt;/td&gt;&lt;td&gt;0 (0.0)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt;Age of parents (M (SD))&lt;/td&gt;&lt;td&gt;52.18 (6.94)&lt;/td&gt;&lt;td&gt;51.00 (4.12)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td colspan="3"&gt;Residential setting (N, %)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt; Urban&lt;/td&gt;&lt;td&gt;11 (100.0)&lt;/td&gt;&lt;td&gt;9 (100.0)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt; Rural area&lt;/td&gt;&lt;td&gt;0 (0.0)&lt;/td&gt;&lt;td&gt;0 (0.0)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt;Parental education (N, %)&lt;/td&gt;&lt;td /&gt;&lt;td /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt; Junior high school or below&lt;/td&gt;&lt;td&gt;2 (18.2)&lt;/td&gt;&lt;td&gt;0 (0.0)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt; Senior high school&lt;/td&gt;&lt;td&gt;1 (9.1)&lt;/td&gt;&lt;td&gt;1 (11.1)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt; College or above&lt;/td&gt;&lt;td&gt;8 (72.7)&lt;/td&gt;&lt;td&gt;8 (88.9)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td colspan="3"&gt;&lt;bold&gt;Autistic adult characteristics&lt;/bold&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td colspan="3"&gt;Gender of autistic adult (N, %)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt; Male&lt;/td&gt;&lt;td&gt;8 (72.7)&lt;/td&gt;&lt;td&gt;4 (44.4)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt; Female&lt;/td&gt;&lt;td&gt;3 (27.3)&lt;/td&gt;&lt;td&gt;5 (55.6)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt;Age of autistic adult (M (SD))&lt;/td&gt;&lt;td&gt;24.36 (6.12)&lt;/td&gt;&lt;td&gt;21.22 (4.27)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt;Age at diagnosis (M (SD)), years&lt;/td&gt;&lt;td&gt;4.00 (1.67)&lt;/td&gt;&lt;td&gt;14.00 (8.02)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td colspan="3"&gt;Education/Employment status (N, %)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt; Study in special school&lt;/td&gt;&lt;td&gt;3 (27.3)&lt;/td&gt;&lt;td&gt;0 (0.0)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt; Study in university&lt;/td&gt;&lt;td&gt;0 (0.0)&lt;/td&gt;&lt;td&gt;5 (55.6)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt; Suspension or withdrawal from school&lt;/td&gt;&lt;td&gt;0 (0.0)&lt;/td&gt;&lt;td&gt;2 (22.2)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt; Unemployed&lt;/td&gt;&lt;td&gt;3 (27.3)&lt;/td&gt;&lt;td&gt;0 (0.0)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt; Sheltered employment&lt;/td&gt;&lt;td&gt;2 (18.2)&lt;/td&gt;&lt;td&gt;0 (0.0)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt; Supported employment&lt;/td&gt;&lt;td&gt;3 (27.3)&lt;/td&gt;&lt;td&gt;0 (0.0)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt; Regular employment&lt;/td&gt;&lt;td&gt;0 (0.0)&lt;/td&gt;&lt;td&gt;2 (22.2)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td colspan="3"&gt;Living status (N, %)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt; Live with parents&lt;/td&gt;&lt;td&gt;10 (90.9)&lt;/td&gt;&lt;td&gt;4 (44.4)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt; Live in care institutions&lt;/td&gt;&lt;td&gt;1 (9.1)&lt;/td&gt;&lt;td&gt;0 (0.0)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt; Live with roommates&lt;/td&gt;&lt;td&gt;0 (0.0)&lt;/td&gt;&lt;td&gt;4 (44.4)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt; Live alone&lt;/td&gt;&lt;td&gt;0 (0.0)&lt;/td&gt;&lt;td&gt;1 (11.1)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td colspan="3"&gt;Relationship status (N, %)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt; Single&lt;/td&gt;&lt;td&gt;11 (100.0)&lt;/td&gt;&lt;td&gt;7 (77.8)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt; In relationship&lt;/td&gt;&lt;td&gt;0 (0.0)&lt;/td&gt;&lt;td&gt;1 (11.1)&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt; Married&lt;/td&gt;&lt;td&gt;0 (0.0)&lt;/td&gt;&lt;td&gt;1 (11.1)&lt;/td&gt;&lt;/tr&gt;&lt;/tbody&gt;&lt;/table&gt; </ephtml> </p> <p>1 ID = intellectual disabilities; M = mean; SD = standard deviation.</p> <p>All participating families resided in urban areas of Jiangsu Province, located in eastern China, a region characterised by relatively high economic development and access to public services. In order to respect participants' privacy, household income data were not collected; however, national statistics consistently rank Jiangsu among the leading provinces in terms of average earnings and service infrastructure.</p> <hd id="AN0190387823-5">Data collection</hd> <p>The interview guide was developed collaboratively by the research team to address the study's central aim of understanding how independence is conceptualised and supported in the lives of autistic adults. During the preparatory stage, field visits were conducted to medical and rehabilitation institutions in Jiangsu Province, and a review of relevant literature helped inform the study's focus. A preliminary version of the interview guide was drafted based on the research objectives and subsequently refined in collaboration with a parent advisory group comprising three parents of autistic adults (see Supplementary File 1 for details).</p> <p>From June 2023 to June 2024, semi-structured interviews were conducted in Mandarin Chinese, each lasting between 60 and 90 min. Interviews took place in locations selected by participants, such as their homes or other quiet, familiar settings, to ensure comfort and confidentiality. One interview was conducted online because the participant was temporarily travelling. Written informed consent was obtained prior to each interview.</p> <p>Eligible participants were contacted to schedule interviews conducted by a pair of trained professionals. The first author led the interview, while the second author took observational notes and provided follow-up prompts when needed. At the beginning of each interview, participants were reminded that they could skip any question or withdraw from the study at any time without providing a reason. Interviewers emphasised that there were no right or wrong answers and that all perspectives would be respected and valued. Upon completion of the interview, participants were offered a small token of appreciation (a gift worth approximately 100 RMB). Audio recordings were transcribed within 24 h, and participants were contacted by telephone for clarification if any uncertainties arose. The number of interviewees was decided during data collection by considering the richness and depth of the data ([<reflink idref="bib8" id="ref48">8</reflink>]).</p> <hd id="AN0190387823-6">Community involvement statement</hd> <p>This study adopted a participatory approach, grounded in the team's long-standing clinical relationships with autistic individuals and their families. A parent advisory group of three parents of autistic adults, each of whom had journeyed alongside their children since early diagnosis, was consulted and provided input at multiple stages of the study. The parent advisors contributed through online meetings held during the development of the interview guide and following the construction of preliminary themes. At the outset, they shared their lived experiences and reflections, offering insights into the core concerns currently faced by families, affirming the study's focus on the meaning of independence and helping to shape the interview framing to better reflect service-relevant needs. At the feedback stage, they endorsed the view that emotional and relational dimensions are integral to understanding independence and suggested that these aspects may carry particular meaning for autistic adults without ID. Moreover, in several interviews, autistic adults were present alongside their parents, their presence and occasional responses gently enriched the conversations with emotional nuance and relational depth.</p> <hd id="AN0190387823-7">Positionality</hd> <p>Our interdisciplinary team, comprising non-autistic female researchers with backgrounds in clinical practice, academic research and community engagement, developed and conducted the study collaboratively. We have long been engaged in service development, advocacy and cross-sector collaboration in the field of autism and share a sustained commitment to recognising the strengths and needs of autistic individuals across the lifespan. Our professional and practice-based experiences have consistently highlighted the central role of family involvement, service infrastructures and social adaptation in shaping the lives of autistic individuals. These varied experiences and areas of expertise informed our analysis and interpretation, as well as our commitment, a neurodiversity-affirming approach to research and practice.</p> <hd id="AN0190387823-8">Data analysis and reflexivity</hd> <p>This study employed a qualitative design grounded in RTA, following [<reflink idref="bib8" id="ref49">8</reflink>], [<reflink idref="bib9" id="ref50">9</reflink>]) six-phase framework. Guided by a contextualist, interpretivist and constructivist epistemological stance, we viewed independence not as a fixed or objective attribute, but as a socially and culturally constructed phenomenon. The analysis was primarily inductive and semantic, while remaining attentive to latent patterns embedded in participants' narratives.</p> <p>All interviews were conducted and transcribed in Chinese by A.H. and Y.Y., facilitating early familiarisation with the data. Both authors independently coded the transcripts, attending to linguistic precision as well as emergent conceptual patterns. NVivo 14 was used to manage coding and thematic mapping, while Microsoft Excel supported the organisation of coded excerpts and descriptive comparisons across groups. Initial themes were developed by A.H. and refined in collaboration with Z.Z., whose international psychology background supported theoretical framing and cross-cultural interpretation. Thematic review and refinement involved all team members. X.H. and X.K. contributed clinical insight and case-level resonance to ensure interpretive depth. Theme naming was finalised through collaborative dialogue, with contributions from A.H. and Z.Z. to ensure semantic and conceptual coherence. X.H. assisted in the translation of illustrative quotes from Chinese to English, while J.G. and X.K. supported interpretive integration and theoretical consistency throughout reporting.</p> <p>Reflexivity was maintained throughout the process through memo-writing, analytic dialogue and regular team discussions. Analytic memos were kept to document evolving interpretations and positional reflections. Our analysis captured both participants' explicit expressions and the underlying cultural and relational meanings. Although primarily inductive, our interpretation was also informed by existing theoretical work on relational autonomy (e.g. [<reflink idref="bib39" id="ref51">39</reflink>]) and culturally embedded understandings of adulthood (e.g. [<reflink idref="bib41" id="ref52">41</reflink>]), which served as interpretive lenses through which to explore how meanings of independence were socially, emotionally and culturally shaped.</p> <hd id="AN0190387823-9">Result</hd> <p>We provide a conceptual overview of the four themes and their interrelations (see Figure 1). Themes are presented in bold, and participant quotations are attributed using anonymised identifiers (e.g. A01, B07), where 'A' denotes parents of autistic adults with intellectual disabilities, and 'B' denotes parents of autistic adults without ID.</p> <p>Graph: Figure 1. Four thematic dimensions of independence reconceptualised in autistic adulthood.</p> <hd id="AN0190387823-10">Theme 1: doing independence versus being independent: parents' conceptualisations</hd> <p>When asked about independence, many parents initially referred to concrete and routine behaviours such as preparing meals, completing chores, dressing or commuting. These observable actions were often regarded as early indicators of autonomy, particularly among families of autistic adults with ID. 'He can cook for himself; even when we're not at home, he won't go hungry', one father remarked (A06). Another parent added, 'He can't cook, but he orders his meals independently through delivery' (A05). Some also described functional competence in areas such as money and mobility: 'He has a (money) concept; he'll spend what he needs' (A04), and 'He travels to and from work independently' (A10).</p> <p>Education and employment were frequently described as markers of independence, particularly among parents of autistic adults without ID. 'Getting a job is the first step towards independence', one mother explained, later adding that her son needed 'a salary that allows him to live a normal life' (B03). 'He earned a university degree – we just hope he finds work that suits him', another parent shared (B04).</p> <p>For families of autistic adults with ID, employment was often valued less for its financial return than for the structure and sense of participation it offered. 'She's responsible for sorting newspapers at the community library. She remembers exactly where each book belongs, like a photographic memory' (A11). 'He goes to work during the day, there's something to do every day', another parent expressed (A04).</p> <p>However, many parents initially equated independence with the ability to perform tasks alone; several later came to question whether these visible behaviours were sufficient. One father observed that although his son had 'no problems with daily living', he remained only 'marginally independent', as he 'struggled to handle unexpected situations and was unable to communicate deeply with others' (A03). Another commented that her son managed well 'as long as everything followed his usual rhythm', but became unsettled when routines were disrupted (A07). A third parent further commented on her son's lack of initiative, noting that 'he doesn't know how to organise his life in a reasonable way' (A04).</p> <p>Similar concerns were expressed by parents of autistic adults without ID. One mother described her son as 'unable to cope when something happens' (B04). Another remarked, 'She struggles when things go wrong; she breaks down and can't regulate her emotions' (B02). Social communication difficulties were also frequently noted. One mother described that her daughter 'believes people are trustworthy just because they are nice' and 'cannot tell what is real or fake' (B08). Another parent noted that her son 'fears interacting with others due to the risk of conflict' (B01).</p> <p>Considered in their entirety, these reflections reveal a disjunction between outward functionality and more nuanced dimensions of independence – not merely as the ability to perform tasks ('doing'), but as the capacity to navigate life with emotional regulation, adaptability, self-determination and relational competence ('being'). This distinction underscores the limitations of equating visible functionality with genuine independence and highlights the importance of recognising and supporting the less observable yet equally significant dimensions of adult independence.</p> <hd id="AN0190387823-11">Theme 2: from aspirations to reconceptualisations: redefining parental understandings of inde...</hd> <p>For many parents, early notions of independence were closely tied to basic functional abilities, such as being able to live alone or manage daily life without assistance (A03, A11, B08, B07). As one father recalled, 'Independence meant he could live on his own and take care of himself without our support' (A03). Another mother reflected, 'We thought that if she could eat, dress, and live by herself, that would already be a kind of independence' (B07). Early expectations often extended beyond functional living to include employment and marriage as normative milestones of adult life. As one mother remembered, 'We simply believed our child should get a job, get married, and start a family' (A04).</p> <p>Such aspirations were deeply embedded in societal ideals of adulthood. As one mother reflected thoughtfully, 'We used to think independence meant earning money and starting a family'. Initially, encouraged by what many saw as a good opportunity, the family supported their daughter in taking on a job, believing it would offer valuable life experience. However, these hopes quickly collided with practical difficulties: 'We thought it would be good training... but she struggled socially and called us every day to say how distressed she felt' (B09). Over time, this experience led to a more inwardly focused shift in expectations: 'Now I just hope she is healthy and able to live with a calm and steady mind' (B09). A similar pattern of gradual adaptation was described by another parent: 'We've learned to respect her pace. If she feels uncomfortable in certain social settings, we no longer push her. Her wellbeing comes first' (B07). These evolving perspectives were not a retreat from aspiration, but a meaningful reconceptualisation of what independence could entail, no longer anchored in normative milestones but grounded in emotional security, relational closeness and a sense of self-determined purpose. For example, the same parent who initially envisioned marriage and career later articulated a more grounded wish:</p> <p>Although his salary is a bit low, he is healthy, has things to do every day, uses his strengths, and can give back to society. Of course, we still hope he can grow further – like learning to plan his life and strengthen his abilities. (A04)</p> <p>As parents moved away from fixed expectations, they began to value their child's mental health, personal interests and sense of fulfilment in everyday life more deeply. One mother explained, 'Letting her work wasn't about earning money. We just wanted her to have something meaningful to do each day, so she wouldn't feel stuck at home. We just want her to feel a sense of fulfilment' (A10). Another parent highlighted the importance of following her child's passions: 'She loves to travel, so we take her to new places' (A11).</p> <p>This reconceptualisation was also part of a gradual process of reflection and adjustment for parents themselves. One mother acknowledged, 'If you had given us this kind of guidance at the beginning, we might not have been able to accept it. We needed to go through our own process of understanding', and she added, 'Now we respect our child and take our cues from them' (B02). Another mother shared, 'Independence depends on the parents' mindset. You cannot hold on to your child just because you are afraid; they need to go out and experience life' (A07). Similarly, another parent emphasised the importance of allowing space for failure and self-determination:</p> <p>We let her try. Even if she fails, it is all right. I just hope she is healthy and safe... like when she made her own decisions about her major and the university she wanted to attend. Although it's a field that is hard to find a job in, we respected her choice. As long as she is happy, that is what truly matters. (B05)</p> <hd id="AN0190387823-12">Theme 3: invisible needs and misrecognised functional independence</hd> <p>She has no issues with self-care... but emotionally, she still relies on me a lot. She hasn't yet learned to face and handle things on her own like her classmates. (B06)</p> <p>Several parents reflected on the contrast between outward signs of independence and their children's continued emotional or cognitive dependence. While some autistic adults without ID appeared functionally capable – navigating routines, managing tasks – these behaviours often masked underlying challenges with emotional regulation, flexibility or decision-making. As one mother noted, her daughter was 'not yet fully independent', citing difficulties with managing her own schedule and interpreting social cues as key reasons (B08).</p> <p>These accounts were echoed by many other parents who observed that, despite managing daily routines, their children struggled when faced with unpredictability. One father shared, 'If something doesn't go as planned, he panics and needs help to calm down or figure out what to do' (A03). Another noted, 'She breaks down when things go wrong' (B02). A mother described how her daughter found it difficult to judge others' intentions: 'If someone is very nice to her, she immediately thinks they're a good person... she can't tell whether it's real or fake – she only sees the surface' (B08). These challenges in coping, emotional regulation and self-protection often remained invisible to outsiders, yet persistently shaped how independence was both experienced and sustained.</p> <p>In contrast to the broader tendency to withdraw support once independence is presumed, many parents expressed a continued need for professional involvement, particularly in areas such as emotional regulation, social communication and adaptive functioning. One parent hoped for someone who could 'guide her daughter on how to navigate life and fit into society' (B06), while another described psychological counselling as helpful in 'clarifying direction' (B03). Several families also emphasised the value of targeted support, ranging from social communication training and behavioural guidance to assistance with relationship-building and access to inclusive employment opportunities (B03, B09).</p> <p>This need for ongoing, individualised support was not limited to families of autistic adults without ID. Parents of those with ID similarly spoke of the need for tailored interventions, including behavioural support to address persistent challenges in emotional regulation and safety awareness (A09), vocational preparation (A10) and on-site workplace guidance, such as job coaches or shadow teachers (A07). Collectively, these accounts reflect a shared understanding that independence, regardless of how it may appear externally, is not inherently self-sustaining. Rather, it is often maintained through consistent, context-sensitive scaffolding. This perspective was echoed across our sample, including families of both autistic adults with and without ID (e.g. A01, A02, A04, A06, A10, A11, B01, B02, B09).</p> <hd id="AN0190387823-13">Theme 4: independence as a relational process</hd> <p>None of the autistic adults with intellectual disabilities in our sample were living independently, and only five parents mentioned living arrangements, mostly in descriptive terms. Co-residence was not viewed as a fallback, but rather as a stable and familiar way of maintaining connection. 'He still lives with us', one father said plainly (A03). Another mother shared that her daughter, although studying away from home and 'very independent in daily life', remained 'very emotionally attached to the family' (B05). Some parents described maintaining physical closeness while gradually encouraging their children to manage more independently. 'We've always stayed close', one parent noted, 'we keep an eye on him and follow his growth' (A01).</p> <p>For many families, emotional readiness was seen as more important than physical distance. 'She can manage her own life, but when something goes wrong, she breaks down' (B02). Another parent noted, 'Her routines are smooth when she's emotionally steady, but things fall apart when her mood is unstable' (B04). Families described these reactions not as isolated incidents, but as part of broader and ongoing difficulties with emotional self-regulation. One parent referred to an 'inability to let go of negative emotions' (B04), while another described 'poor emotional control' (A02). A similar concern was expressed,</p> <p>I think that the ability to manage emotions independently is essential for coping with emergencies. Her main problem now is that she struggles to cope with unexpected events. When something unforeseen happens, she breaks down emotionally at first, and only after she calms down can she start thinking about how to deal with it. (B06)</p> <p>Parents described the family as the foundation of independence (A03, A07, A08, B02). As several parents emphasised, 'First of all, parents should understand and accept' (A08, B07). For some, this involved giving children room to grow rather than 'holding the child closely in our hand forever because of fear' (A07), and allowing room for 'trial and error' (B05). 'We let him take the subway alone – and quietly followed behind', another recalled (A03). Across both groups, families framed independence as a process of supported experimentation rather than complete withdrawal. As one mother put it, 'They're easily agitated – we can't just tolerate everything... we need to teach them what's right' (B03).</p> <p>In educational, occupational and broader social settings, parents consistently spoke of the need for 'understanding', 'inclusion' and 'following their pace' (A05, A06, B02, B06). In education, personalised support was key. 'Parents can't replace teachers – they need to understand autism', one mother said (B01). Peers, too, were seen as influential. 'A good classmate can be a better guide than a parent', she added (B01).</p> <p>The same principle applied to employment: 'She can work, but only if someone understands her rhythm and emotions' (B09). For some autistic adults with ID, parents emphasised the importance of 'relevant vocational training' (A10), followed by ongoing, tailored assistance such as 'job coaches' or 'shadow teachers' (A07). These measures ensured not just access, but continuity and well-being.</p> <p>Psychological and social services were likewise viewed as critical. 'Counselling helps clarify her direction', one parent affirmed (B03); another called for 'more training in social communication and behavioural guidance' (B09). For many families, sustaining independence required not fewer forms of support, but more responsive ones adapted to fit, rather than to fix.</p> <hd id="AN0190387823-14">Discussion</hd> <p>To our knowledge, this is the first study to meaningfully examine how the independence of autistic adults is understood and supported in China, drawing upon rich narrative accounts from parents of autistic individuals both with and without ID. By adopting a RTA approach, the study identified four interrelated themes that move beyond functionally oriented accounts of independence to foreground its subjective, emotional and relational dimensions as they are interpreted, nurtured and sustained within the fabric of family life.</p> <p>The findings of this study, articulated across four interrelated themes, illustrate a conceptual shift from viewing independence as a fixed destination to understanding it as a dynamic, relational and contextually embedded process. Such a reconceptualisation invites a fundamental reassessment of how independence is defined, interpreted and enacted in the everyday lives of autistic adults. Our analysis resonates with the work of [<reflink idref="bib7" id="ref53">7</reflink>], whose interviews with autistic adults without ID in the United Kingdom likewise challenged reductionist understandings of independence by foregrounding interconnected constructs such as autonomy, self-determination and empowerment. While much of the existing literature continues to operate within functionalist paradigms that emphasise externally observable outcomes, such as the ability to manage daily routines, maintain employment or handle financial matters ([<reflink idref="bib11" id="ref54">11</reflink>]; [<reflink idref="bib13" id="ref55">13</reflink>]; [<reflink idref="bib42" id="ref56">42</reflink>]), our findings suggest that such frameworks may be insufficient in capturing the broader realities of independence as experienced by autistic individuals and their families. Although these functional skills were frequently referenced by parents as tangible indicators of progress, many participants simultaneously articulated concerns regarding their children's capacity to respond flexibly to unexpected situations, regulate emotional states and navigate complex social relationships. These reflections point to the limitations of assessing independence solely on the basis of task completion, and instead highlight the importance of recognising the affective and relational competencies that underpin meaningful self-determination in adult life. They invite a rethinking of assessment and intervention strategies, moving towards more holistic approaches that incorporate emotional adaptability and interpersonal functioning.</p> <p>There is a growing body of evidence indicating that autistic adults experience elevated rates of psychological distress relative to the general population, particularly in relation to anxiety and mood disorders, with difficulties in emotion regulation frequently playing a central role ([<reflink idref="bib10" id="ref57">10</reflink>]; [<reflink idref="bib32" id="ref58">32</reflink>]). Cognitive flexibility, a core mechanism underpinning adaptive functioning in the face of environmental change, has been shown to be an area of pronounced difficulty for many autistic individuals, especially when navigating unfamiliar or unpredictable contexts ([<reflink idref="bib31" id="ref59">31</reflink>]; [<reflink idref="bib56" id="ref60">56</reflink>]). Rather than reflecting a lack of interest, challenges in initiating and maintaining social relationships are widely acknowledged among autistic adults, including difficulties in interpreting others' emotions, recognising social cues and navigating divergent communication styles ([<reflink idref="bib15" id="ref61">15</reflink>]; [<reflink idref="bib46" id="ref62">46</reflink>]). Longitudinal data further indicate that these challenges often persist across the lifespan, during which they have been significantly associated with decreased independence and reduced quality of life ([<reflink idref="bib32" id="ref63">32</reflink>]), underscoring the need for sustained and personalised forms of support that extend beyond functional skills training alone ([<reflink idref="bib33" id="ref64">33</reflink>]; [<reflink idref="bib37" id="ref65">37</reflink>]). Despite such complexity, institutional and societal narratives continue to privilege what individuals can be seen to 'do', frequently neglecting who they are, how they adapt and what supports they require to thrive. Taken together, our findings call for more nuanced, relationally attuned frameworks that conceptualise independence not as the absence of support, but as a dynamic and co-produced achievement emerging through the interplay of individual capacities, emotional development and responsive social environments.</p> <p>Across both groups, parents consistently described independence as unfolding not through withdrawal from familial networks, but through sustained emotional connection, mutual adjustment and ongoing support. Co-residence, shared decision-making and continued parental involvement were not interpreted as signs of developmental failure. Consistent with previous research, independence was not universally equated with living alone ([<reflink idref="bib7" id="ref66">7</reflink>]); some autistic adults expressed a desire to live on their own ([<reflink idref="bib1" id="ref67">1</reflink>]), while others reported no wish to move out of the parental home ([<reflink idref="bib2" id="ref68">2</reflink>]). Family participation remained essential, as the home continued to function as a core socio-ecological context supporting emotional development and psychological well-being throughout adulthood ([<reflink idref="bib33" id="ref69">33</reflink>]). In East Asian societies such as China, where filial piety and intergenerational reciprocity remain enduring cultural values, independence is often negotiated within the relational and culturally embedded fabric of family life ([<reflink idref="bib16" id="ref70">16</reflink>]; [<reflink idref="bib57" id="ref71">57</reflink>]). All autistic adults in this study were born during the implementation of China's one-child policy (1979–2015), which meant that many of them, particularly those without ID, were only children ([<reflink idref="bib57" id="ref72">57</reflink>]). This demographic reality appeared to shape parental expectations regarding residential independence, as co-residence was often not perceived as a failure to achieve independence, but as a mutually supportive arrangement that maintained emotional closeness and enabled adult children to provide both physical and emotional care to their ageing parents ([<reflink idref="bib16" id="ref73">16</reflink>]).</p> <p>Drawing upon the work of [<reflink idref="bib50" id="ref74">50</reflink>], we argue that no one acts entirely independently, and that independence and interdependence are intrinsically intertwined aspects of human development, relevant to both autistic and non-autistic people. Individuals display varying degrees of each across different domains of life and stages of development ([<reflink idref="bib43" id="ref75">43</reflink>]). As highlighted in Theme 4, <emph>Independence as a Relational Process</emph>, many parents resisted narratives that placed responsibility solely on the individual to overcome developmental challenges, instead advocating for more holistic, ecosystemic approaches that acknowledge how structural resources, social relationships and environmental responsiveness collectively shape the possibilities for independence. This framing aligns closely with neurodiversity-affirming perspectives that reject deficit-based constructions of adulthood and instead conceptualise independence as an emergent capacity co-produced within relational contexts, acknowledging the interdependence of biological, psychological and social domains in shaping development and emphasising the role of responsive, equitable and culturally attuned environments ([<reflink idref="bib20" id="ref76">20</reflink>]; [<reflink idref="bib28" id="ref77">28</reflink>]; [<reflink idref="bib35" id="ref78">35</reflink>]). Key components of such ecosystems involve inclusive education, supported employment, tailored mental health services and social policy frameworks that ensure consistent support across the lifespan ([<reflink idref="bib32" id="ref79">32</reflink>]; [<reflink idref="bib37" id="ref80">37</reflink>]). Ultimately, fostering sustainable independence requires reshaping environments so that autistic adults are not expected to conform to normative ideals, but are supported to thrive in alignment with their own aspirations, rhythms and relational needs.</p> <p>A distinctive contribution of this study lies in its comparative lens on the perspectives of parents of autistic adults with and without ID, illuminating both shared experiences and nuanced distinctions. While all families acknowledged the importance of fostering independence and ensuring quality of life, their definitions, priorities and approaches to support varied considerably. Parents of autistic adults without ID typically held higher expectations for education, employment and autonomy, though they also acknowledged ongoing vulnerabilities in emotional regulation and adaptive functioning. In contrast, parents of those with ID emphasised functional independence, while also recognising expressions of self-determination and value-based engagement, through which autistic individuals reflected on life's meaning, pursued personal interests, and sought spiritual or existential fulfilment ([<reflink idref="bib25" id="ref81">25</reflink>]). These comparative insights not only deepen our understanding of how independence is conceptualised across cognitive profiles but also lend theoretical support to sociocultural models of disability ([<reflink idref="bib22" id="ref82">22</reflink>]). In particular, our findings resonate with social ecological and interactionist perspectives that recognise disability as arising through dynamic interactions between individual characteristics and environmental affordances, rather than residing solely within the person ([<reflink idref="bib12" id="ref83">12</reflink>]; [<reflink idref="bib21" id="ref84">21</reflink>]). This framework supports a reorientation of intervention goals away from normative ideals and towards the championed aims of quality of life and holistic well-being for autistic adults with and without ID, a transformation that requires societies to embrace diverse expressions of independence as they strive towards greater equity and inclusion.</p> <hd id="AN0190387823-15">Implications for practice</hd> <p>Recognition of the insights offered by Chinese parents highlights their implicit alignment with neurodiversity-affirming values and underscores the need to reshape support infrastructures around relational, emotional and cultural realities. Parents, particularly those navigating high-support contexts, consistently occupied dual roles as coordinators of care and advocates for their children's independence, while also contending with emotional strain and systemic inadequacies. Service strategies should therefore establish structures of mutual collaboration that integrate parental perspectives and address caregiver well-being. Advancing more inclusive forms of independent adulthood for autistic individuals similarly demands broader societal commitments to accessibility, public awareness and structural responsiveness. Beyond accommodating individual needs, support systems must actively dismantle normative expectations that marginalise diverse developmental trajectories. Equally crucial is the need to recognise and respond to the often invisible dimensions of independence, including mental health, cognitive flexibility and problem-solving capacity, so as to foster authentic forms of 'being independent'. This calls for the development of personalised, lifespan-oriented support systems that remain attuned to the evolving and heterogeneous needs of autistic adults across different contexts and life stages.</p> <hd id="AN0190387823-16">Conclusion</hd> <p>By amplifying the voices of Chinese parents of autistic adults both with and without ID, we demonstrate that independence is not a fixed benchmark of individual capability, but a dynamic process embedded within emotional, relational and sociocultural contexts. These findings challenge dominant narratives that equate independence with functional competence or physical separation from family, and advance sociocultural models of disability by foregrounding relational, interdependent and culturally situated understandings of personhood, thereby inviting a broader societal shift in how disability and personhood are understood, positioning them not as individual deficits to be corrected but as dimensions of human diversity to be recognised and supported with dignity, equity and care. Building on these insights, we advocate for more inclusive and context-sensitive models that centre interdependence, mental health and families' evolving understandings of independence in autistic adulthood, illuminating its complex, relational and dynamic nature. Realising this vision requires sustained investment in inclusive policies, adaptive service systems and participatory research that collectively scaffold meaningful and sustainable independence across the lifespan. Crucially, this vision affirms the right of autistic individuals not merely to adapt to normative expectations, but to live in alignment with their own rhythms, needs and identities – to be supported not in becoming someone else, but in becoming themselves. Only by embracing diverse expressions of independence can societies support autistic adults in leading lives that reflect their unique needs, preferences and aspirations.</p> <hd id="AN0190387823-17">Strengths and limitations</hd> <p>This study offers one of the first in-depth qualitative investigations into how independence is understood, negotiated and supported in the lives of autistic adults in China. A key strength lies in the inclusion of parents of autistic individuals both with and without ID, allowing for rich comparison across a wide range of cognitive and support profiles. The use of RTA, informed by constructivist and neurodiversity-affirming principles, enabled a context-sensitive interpretation grounded in the lived realities of families.</p> <p>The study is further distinguished by its attention to relational and cultural dimensions of independence, which are often overlooked in functionally driven research. In addition to capturing individual variation, the findings offer insights into how familial expectations, emotional development and sociocultural values interact to shape adult outcomes. The use of community-informed methods, including parent advisors and pilot testing, enhances the study's relevance and ethical grounding.</p> <p>Nonetheless, several limitations should be acknowledged. All participants were town-dwelling, and the perspectives of families in rural or more socioeconomically disadvantaged areas may differ. The study was conducted in Jiangsu Province, a region with among the highest levels of comprehensive development in China. Jiangsu was selected partly for practical reasons, as this is where the research team is based, and also, out of a sense of mission, given that the first autistic child in China was identified and reported by our hospital. This historical legacy has underpinned our continuing commitment to documenting outcomes and advancing support for autistic individuals. However, this context does not fully represent the breadth of autistic experiences nationwide.</p> <hd id="AN0190387823-18">Supplemental Material</hd> <p>Graph: Supplemental material, sj-docx-1-aut-10.1177_13623613251374905 for Reconceptualising independence in autistic adulthood: Comparing Chinese parents' perspectives on autistic adults with and without intellectual disabilities by Anqi Huang, Yupei Ye, Xuejiao Han, Ziyi Zhang, Jianhong Gu and Xiaoyan Ke in Autism</p> <p>We are extremely grateful to the parents who participated in this study for opening up about their experiences and to Jiao Weng for enormously helpful suggestion on previous versions of this manuscript.</p> <ref id="AN0190387823-19"> <title> References </title> <blist> <bibl id="bib1" idref="ref1" type="bt">1</bibl> <bibtext> Al Ansari M., Edwards C., Gibbs V. (2024). 'Living independently means everything to me': The voice of Australian autistic adults. 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Autism in Adulthood, 5(1), 86–92. https://doi.org/10.1089/aut.2021.0095</bibtext> </blist> </ref> <ref id="AN0190387823-20"> <title> Footnotes </title> <blist> <bibtext> Anqi Huang</bibtext> </blist> <blist> <bibtext>Graph</bibtext> </blist> <blist> <bibtext>https://orcid.org/0009-0009-3797-0231 Yupei Ye</bibtext> </blist> <blist> <bibtext>Graph</bibtext> </blist> <blist> <bibtext>https://orcid.org/0009-0001-5088-9253 Xuejiao Han</bibtext> </blist> <blist> <bibtext>Graph</bibtext> </blist> <blist> <bibtext>https://orcid.org/0009-0006-8648-0915 Ziyi Zhang</bibtext> </blist> <blist> <bibtext>Graph</bibtext> </blist> <blist> <bibtext>https://orcid.org/0009-0005-9492-3192 Jianhong Gu</bibtext> </blist> <blist> <bibtext>Graph https://orcid.org/0009-0005-2081-4823</bibtext> </blist> <blist> <bibtext> This research initiative received approval from the Ethical Committee of Nanjing Brain Hospital (2023-KY109-01). Informed consent was obtained from all individual participants included in the study.</bibtext> </blist> <blist> <bibtext> Anqi Huang: Conceptualization; Data curation; Formal analysis; Investigation; Methodology; Resources; Software; Supervision; Validation; Visualization; Writing – original draft; Writing – review &amp; editing.Yupei Ye: Conceptualization; Data curation; Investigation; Methodology; Software; Writing – original draft.Xuejiao Han: Conceptualization; Methodology; Visualization; Writing – review &amp; editing Ziyi Zhang: Conceptualization; Data curation; Methodology; Visualization; Writing – review &amp; editing.Jianhong Gu: Conceptualization; Methodology; Supervision; Visualization.Xiaoyan Ke: Conceptualization; Funding acquisition; Methodology; Project administration; Resources; Supervision; Writing – review &amp; editing.</bibtext> </blist> <blist> <bibtext> The authors disclosed receipt of the following financial support for the research, authorship and/or publication of this article: The financial support was received from The 'Specific Disease Cohort Study on Autism' under the 'Specific Disease Cohort' research project at Nanjing Medical University, Grant/Award Number: NMUC2018010A and a grant from the Construction Project of Nanjing Rehabilitation Medical Center (2020).</bibtext> </blist> <blist> <bibtext> The authors declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.</bibtext> </blist> <blist> <bibtext> The data are available upon request.</bibtext> </blist> <blist> <bibtext> Supplemental material for this article is available online.</bibtext> </blist> </ref> <aug> <p>By Anqi Huang; Yupei Ye; Xuejiao Han; Ziyi Zhang; Jianhong Gu and Xiaoyan Ke</p> <p>Reported by Author; Author; Author; Author; Author; Author</p> </aug> <nolink nlid="nl1" bibid="bib36" firstref="ref7"></nolink> <nolink nlid="nl2" bibid="bib54" firstref="ref8"></nolink> <nolink nlid="nl3" bibid="bib19" firstref="ref10"></nolink> <nolink nlid="nl4" bibid="bib27" firstref="ref11"></nolink> <nolink nlid="nl5" bibid="bib47" firstref="ref12"></nolink> <nolink nlid="nl6" bibid="bib52" firstref="ref14"></nolink> <nolink nlid="nl7" bibid="bib29" firstref="ref15"></nolink> <nolink nlid="nl8" bibid="bib11" firstref="ref16"></nolink> <nolink nlid="nl9" bibid="bib13" firstref="ref17"></nolink> <nolink nlid="nl10" bibid="bib24" firstref="ref18"></nolink> <nolink nlid="nl11" bibid="bib51" firstref="ref19"></nolink> <nolink nlid="nl12" bibid="bib53" firstref="ref20"></nolink> <nolink nlid="nl13" bibid="bib18" firstref="ref22"></nolink> <nolink nlid="nl14" bibid="bib58" firstref="ref23"></nolink> <nolink nlid="nl15" bibid="bib17" firstref="ref25"></nolink> <nolink nlid="nl16" bibid="bib23" firstref="ref26"></nolink> <nolink nlid="nl17" bibid="bib34" firstref="ref27"></nolink> <nolink nlid="nl18" bibid="bib42" firstref="ref28"></nolink> <nolink nlid="nl19" bibid="bib44" firstref="ref29"></nolink> <nolink nlid="nl20" bibid="bib49" firstref="ref30"></nolink> <nolink nlid="nl21" bibid="bib38" firstref="ref32"></nolink> <nolink nlid="nl22" bibid="bib26" firstref="ref34"></nolink> <nolink nlid="nl23" bibid="bib40" firstref="ref36"></nolink> <nolink nlid="nl24" bibid="bib14" firstref="ref37"></nolink> <nolink nlid="nl25" bibid="bib48" firstref="ref40"></nolink> <nolink nlid="nl26" bibid="bib55" firstref="ref41"></nolink> <nolink nlid="nl27" bibid="bib30" firstref="ref43"></nolink> <nolink nlid="nl28" bibid="bib45" firstref="ref46"></nolink> <nolink nlid="nl29" bibid="bib43" firstref="ref47"></nolink> <nolink nlid="nl30" bibid="bib39" firstref="ref51"></nolink> <nolink nlid="nl31" bibid="bib41" firstref="ref52"></nolink> <nolink nlid="nl32" bibid="bib10" firstref="ref57"></nolink> <nolink nlid="nl33" bibid="bib32" firstref="ref58"></nolink> <nolink nlid="nl34" bibid="bib31" firstref="ref59"></nolink> <nolink nlid="nl35" bibid="bib56" firstref="ref60"></nolink> <nolink nlid="nl36" bibid="bib15" firstref="ref61"></nolink> <nolink nlid="nl37" bibid="bib46" firstref="ref62"></nolink> <nolink nlid="nl38" bibid="bib33" firstref="ref64"></nolink> <nolink nlid="nl39" bibid="bib37" firstref="ref65"></nolink> <nolink nlid="nl40" bibid="bib16" firstref="ref70"></nolink> <nolink nlid="nl41" bibid="bib57" firstref="ref71"></nolink> <nolink nlid="nl42" bibid="bib50" firstref="ref74"></nolink> <nolink nlid="nl43" bibid="bib20" firstref="ref76"></nolink> <nolink nlid="nl44" bibid="bib28" firstref="ref77"></nolink> <nolink nlid="nl45" bibid="bib35" firstref="ref78"></nolink> <nolink nlid="nl46" bibid="bib25" firstref="ref81"></nolink> <nolink nlid="nl47" bibid="bib22" firstref="ref82"></nolink> <nolink nlid="nl48" bibid="bib12" firstref="ref83"></nolink> <nolink nlid="nl49" bibid="bib21" firstref="ref84"></nolink> |
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| Items | – Name: Title Label: Title Group: Ti Data: Reconceptualising Independence in Autistic Adulthood: Comparing Chinese Parents' Perspectives on Autistic Adults with and without Intellectual Disabilities – Name: Language Label: Language Group: Lang Data: English – Name: Author Label: Authors Group: Au Data: <searchLink fieldCode="AR" term="%22Anqi+Huang%22">Anqi Huang</searchLink> (ORCID <externalLink term="https://orcid.org/0009-0009-3797-0231">0009-0009-3797-0231</externalLink>)<br /><searchLink fieldCode="AR" term="%22Yupei+Ye%22">Yupei Ye</searchLink> (ORCID <externalLink term="https://orcid.org/0009-0001-5088-9253">0009-0001-5088-9253</externalLink>)<br /><searchLink fieldCode="AR" term="%22Xuejiao+Han%22">Xuejiao Han</searchLink> (ORCID <externalLink term="https://orcid.org/0009-0006-8648-0915">0009-0006-8648-0915</externalLink>)<br /><searchLink fieldCode="AR" term="%22Ziyi+Zhang%22">Ziyi Zhang</searchLink> (ORCID <externalLink term="https://orcid.org/0009-0005-9492-3192">0009-0005-9492-3192</externalLink>)<br /><searchLink fieldCode="AR" term="%22Jianhong+Gu%22">Jianhong Gu</searchLink> (ORCID <externalLink term="https://orcid.org/0009-0005-2081-4823">0009-0005-2081-4823</externalLink>)<br /><searchLink fieldCode="AR" term="%22Xiaoyan+Ke%22">Xiaoyan Ke</searchLink> – Name: TitleSource Label: Source Group: Src Data: <searchLink fieldCode="SO" term="%22Autism%3A+The+International+Journal+of+Research+and+Practice%22"><i>Autism: The International Journal of Research and Practice</i></searchLink>. 2026 30(1):150-162. – Name: Avail Label: Availability Group: Avail Data: SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: https://sagepub.com – Name: PeerReviewed Label: Peer Reviewed Group: SrcInfo Data: Y – Name: Pages Label: Page Count Group: Src Data: 13 – Name: DatePubCY Label: Publication Date Group: Date Data: 2026 – Name: TypeDocument Label: Document Type Group: TypDoc Data: Journal Articles<br />Reports - Research – Name: Subject Label: Descriptors Group: Su Data: <searchLink fieldCode="DE" term="%22Parent+Attitudes%22">Parent Attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Autism+Spectrum+Disorders%22">Autism Spectrum Disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Adults%22">Adults</searchLink><br /><searchLink fieldCode="DE" term="%22Intellectual+Disability%22">Intellectual Disability</searchLink><br /><searchLink fieldCode="DE" term="%22Daily+Living+Skills%22">Daily Living Skills</searchLink><br /><searchLink fieldCode="DE" term="%22Aspiration%22">Aspiration</searchLink><br /><searchLink fieldCode="DE" term="%22Needs%22">Needs</searchLink><br /><searchLink fieldCode="DE" term="%22Competence%22">Competence</searchLink><br /><searchLink fieldCode="DE" term="%22Family+Role%22">Family Role</searchLink><br /><searchLink fieldCode="DE" term="%22Parent+Role%22">Parent Role</searchLink><br /><searchLink fieldCode="DE" term="%22Cultural+Influences%22">Cultural Influences</searchLink><br /><searchLink fieldCode="DE" term="%22Expectation%22">Expectation</searchLink><br /><searchLink fieldCode="DE" term="%22Barriers%22">Barriers</searchLink><br /><searchLink fieldCode="DE" term="%22Coping%22">Coping</searchLink> – Name: DOI Label: DOI Group: ID Data: 10.1177/13623613251374905 – Name: ISSN Label: ISSN Group: ISSN Data: 1362-3613<br />1461-7005 – Name: Abstract Label: Abstract Group: Ab Data: Achieving independence in adulthood remains a widely held developmental aspiration. However, prevailing frameworks often equate independence with functional proficiency and physical separation from the family, rarely capturing the lived realities and priorities of autistic individuals and their families. This qualitative study represents the first exploration of how families of autistic adults in mainland China understand, support and engage with the concept of independence. Semi-structured interviews were conducted with 20 parents of autistic adults, including individuals both with and without intellectual disabilities. Through reflexive thematic analysis, four interrelated themes were identified: (1) Doing Independence Versus Being Independent; (2) From Aspirations to Reconceptualisations; (3) Invisible Needs and Misrecognised Competence; and (4) Independence as a Relational Process. These findings challenge reductive definitions of independence as mere task completion or detachment from familial support. Instead, they foreground the emotional, relational and cultural dimensions that shape independence across the lifespan. The study highlights how families actively recalibrate expectations, navigate structural constraints and advocate for contextually attuned support. In doing so, it underscores the need to reconceptualise independence as a dynamic, co-constructed process that honours both the individuality of autistic adults and the ecological contexts within which their lives unfold. – Name: AbstractInfo Label: Abstractor Group: Ab Data: As Provided – Name: DateEntry Label: Entry Date Group: Date Data: 2026 – Name: AN Label: Accession Number Group: ID Data: EJ1494108 |
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| RecordInfo | BibRecord: BibEntity: Identifiers: – Type: doi Value: 10.1177/13623613251374905 Languages: – Text: English PhysicalDescription: Pagination: PageCount: 13 StartPage: 150 Subjects: – SubjectFull: Parent Attitudes Type: general – SubjectFull: Autism Spectrum Disorders Type: general – SubjectFull: Adults Type: general – SubjectFull: Intellectual Disability Type: general – SubjectFull: Daily Living Skills Type: general – SubjectFull: Aspiration Type: general – SubjectFull: Needs Type: general – SubjectFull: Competence Type: general – SubjectFull: Family Role Type: general – SubjectFull: Parent Role Type: general – SubjectFull: Cultural Influences Type: general – SubjectFull: Expectation Type: general – SubjectFull: Barriers Type: general – SubjectFull: Coping Type: general Titles: – TitleFull: Reconceptualising Independence in Autistic Adulthood: Comparing Chinese Parents' Perspectives on Autistic Adults with and without Intellectual Disabilities Type: main BibRelationships: HasContributorRelationships: – PersonEntity: Name: NameFull: Anqi Huang – PersonEntity: Name: NameFull: Yupei Ye – PersonEntity: Name: NameFull: Xuejiao Han – PersonEntity: Name: NameFull: Ziyi Zhang – PersonEntity: Name: NameFull: Jianhong Gu – PersonEntity: Name: NameFull: Xiaoyan Ke IsPartOfRelationships: – BibEntity: Dates: – D: 01 M: 01 Type: published Y: 2026 Identifiers: – Type: issn-print Value: 1362-3613 – Type: issn-electronic Value: 1461-7005 Numbering: – Type: volume Value: 30 – Type: issue Value: 1 Titles: – TitleFull: Autism: The International Journal of Research and Practice Type: main |
| ResultId | 1 |
