Reconceptualising independence in autistic adulthood: Comparing Chinese parents’ perspectives on autistic adults with and without intellectual disabilities

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.Lay AbstractIndependence 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.

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Publication Details

Journal
Autism
Published
2025-10-14
DOI
https://doi.org/10.1177/13623613251374905
Primary Topic
Family and Disability Support Research
Type
article
Field-Weighted Citation Impact
0.00
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article

Reconceptualising independence in autistic adulthood: Comparing Chinese parents’ perspectives on autistic adults with and without intellectual disabilities

Yupei Ye, Xiaoming Han, Anqi Huang, GU Ji-qing
Autism
Family and Disability Support Research
article

Reconceptualising independence in autistic adulthood: Comparing Chinese parents’ perspectives on autistic adults with and without intellectual disabilities

Yupei Ye, Xiaoming Han, Anqi Huang, GU Ji-qing
article en

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.Lay AbstractIndependence 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.

AutismVol. 30(1)
Nanjing Brain Hospital (CN), Nanjing Medical University (CN), Nanjing University (CN)
Openalex Percentile: Top 59%
Family and Disability Support Research
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