---
title: "Between Neuroaffirmation and Access: Parents’ Experiences of Autism Caregiving in England"
id: "plos-one-12-between-neuroaffirmation-and-access-parents-experiences-of-autism-caregiving-in"
canonical_url: "https://medichelpline.com/clinical-feed/plos-one-12-between-neuroaffirmation-and-access-parents-experiences-of-autism-caregiving-in"
content_type: "clinical_feed_article"
specialty: "General"
source_name: "PLOS ONE (Medicine)"
source_url: "https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0353994"
published_at: "2026-07-17T14:00:00.000Z"
evidence_level: "Journal Feed"
license: "CC-BY-NC-4.0 / Informational Use"
---
# Between Neuroaffirmation and Access: Parents’ Experiences of Autism Caregiving in England
## Provenance & Clinical Metadata
- **Canonical URL:** https://medichelpline.com/clinical-feed/plos-one-12-between-neuroaffirmation-and-access-parents-experiences-of-autism-caregiving-in
- **Specialty:** [General](https://medichelpline.com/clinical-feed/general.md)
- **Primary Source:** PLOS ONE (Medicine)
- **Source URL:** [Original Journal Publication](https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0353994)
- **Published At:** 2026-07-17T14:00:00.000Z
- **Evidence Rating:** Journal Feed
## Executive GIST (TL;DR)
- This qualitative study explored lived experiences of 12 caregivers of autistic children in England, using semi-structured interviews and reflexive thematic analysis. - Participants were primarily biological parents (10 female, 2 male), aged 30–46; nine children had formal diagnoses; seven caregivers identified as from ethnic minority backgrounds. - Six interrelated themes were identified: **The 24/7 Care Ecology**, **Culture, Religion, and Gender as Contextual Amplifiers**, **Building (and Lacking) the Social Support Architecture**, **Fighting the System(s)**, **Adaptive Resilience and Neuroaffirmation**, and **Family Quality-of-Life Consequences**. - Caregiving was described as intensive, ongoing, and shaping identity, routines, and family trajectories. Practical, emotional, and administrative burdens were prominent. - Cultural, religious, and gender norms influenced help-seeking, caregiving roles, and experiences of stigma; ethnic minority families reported additional access and representation challenges. - Social support from family, peers, and charities was protective but uneven; some families experienced withdrawn support after diagnosis. - Families reported difficulties navigating fragmented health, education, and social care systems, often requiring advocacy and sustained effort to secure resources. - **Neuroaffirmation** emerged for some caregivers as a strengths-based, identity-affirming approach that supported resilience and reframed caregiving beyond deficit narratives. - Family quality of life was affected across finances, employment, health, relationships, and social participation. Socioeconomic disadvantage and child support needs were linked to lower family outcomes. - The authors call for more accessible, coordinated, family-centred autism services that account for diverse sociocultural contexts and reduce structural barriers to support. - Data are deposited under restricted access in the University of Lincoln Repository; ethical approval and participant involvement processes were reported. - The study emphasises coexistence of burden and adaptation, arguing for research and services that recognise positive dimensions as well as systemic constraints.
## Clinical Analysis & Structured Key Points
SKIP TO MAIN CONTENT Advertisement plos.org Create account Sign in About Browse Publish advanced search 0 Save 0 Citation 48 View 0 Share OPEN ACCESS PEER-REVIEWED RESEARCH ARTICLE Between neuroaffirmation and access: Parents’ experiences of autism caregiving in England Anum Farooq, Rachael Mason, Valentina Sclafani, Niko Kargas Published: July 17, 2026 https://doi.org/10.1371/journal.pone.0353994 Article Authors Metrics Comments Media Coverage Abstract Introduction Methods Findings Discussion Conclusion Acknowledgments References Reader Comments Figures Abstract Despite growing recognition of the challenges faced by families of autistic children in the United Kingdom, existing research has largely focused on parental stress and individual burden, with comparatively limited qualitative attention to how caregiving demands, service systems, and sociocultural contexts interact to shape family quality of life. Addressing this gap, the present study explored caregivers lived experiences of raising autistic children in England, examining how caregiving demands, access to support, and adaptive responses operate within broader family and systemic contexts to influence family quality of life. Semi-structured interviews were conducted with 12 caregivers of autistic children from diverse ethnic backgrounds, including both White British and ethnic minority backgrounds families, and analysed using reflexive thematic analysis. Six interrelated themes were identified that characterised families’ experiences: (1) The 24/7 Care Ecology; (2) Culture, Religion, and Gender as Contextual Amplifiers (3) Building (and lacking) the Social Support Architecture; (4) Fighting the System(s); (5) Adaptive Resilience and Neuroaffirmation; and (6) Family Quality of Life Consequences. Findings illustrate how intensive and ongoing caregiving demands intersect with fragmented service systems and sociocultural expectations, particularly where cultural, religious, and gendered norms shaped caregiving roles and help-seeking. Notably, neuroaffirmation emerged as a protective and identity-affirming response for some families, reframing caregiving beyond deficit-oriented narratives and contributing to resilience within structurally constrained environments. These findings highlight the need for more accessible, coordinated, and family-centred autism support services that recognise the diverse contexts in which caregiving takes place. Figures Citation: Farooq A, Mason R, Sclafani V, Kargas N (2026) Between neuroaffirmation and access: Parents’ experiences of autism caregiving in England. PLoS One 21(7): e0353994. https://doi.org/10.1371/journal.pone.0353994 Editor: Ramandeep Kaur, Father Muller Charitable Institutions, INDIA Received: March 15, 2026; Accepted: July 1, 2026; Published: July 17, 2026 Copyright: © 2026 Farooq et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Data Availability: The data underlying this study consist of anonymised interview transcripts collected from caregivers of autistic children. In line with the University of Lincoln data management policy, the data have been deposited in the University of Lincoln Repository under restricted access to protect participant confidentiality (DOI: https://doi.org/10.24385/lincoln.32685486). Data were collected under ethical approval granted by the University of Lincoln Research Ethics Committee (ref: UoL2024_17776). Requests for access to the data may be submitted via the repository link above and will be reviewed on a case-by-case basis in accordance with the conditions of ethical approval. Alternatively, data access enquiries can be directed to the University of Lincoln Research Governance Office at ethics@lincoln.ac.uk, which serves as an independent point of contact for such requests. Funding: The author(s) received no specific funding for this work. Competing interests: The authors have declared that no competing interests exist. Introduction In the United Kingdom, an estimated 700,000 individuals are autistic, with approximately 3 million family members involved in providing care and support [1]. For many caregivers, most commonly parents, caregiving is an all-encompassing and enduring responsibility that shapes daily routines, family dynamics, and long-term life trajectories. Caregivers play a central role in coordinating support, advocating within health and education systems, and managing children’s diverse needs. However, fulfilling these responsibilities is frequently associated with substantial strain. Research consistently documents elevated levels of stress, anxiety, and depression among caregivers of autistic children compared to parents of non-autistic children [2,3], alongside reduced overall wellbeing [4]. Caregiving has also been linked with social isolation [5], increased physical health concerns [6], relationship strain [7], and significant financial pressures [8] among caregivers of autistic children. Similar challenges including elevated parental stress, social isolation, financial strain and difficulties navigating fragmented health and education systems – have also been documented among caregivers of children with long terms conditions, including cerebral palsy, cancer, diabetes and epilepsy [9,10], as well as among caregivers of individuals with intellectual disabilities across the life course [11]. This suggests that while autism-specific factors shape caregiving in distinctive ways, many of the systemic and relational pressures families face are not unique to autism, pointing to a need for coordinated support structures that address shared caregiving burdens across neurodevelopmental and childhood health conditions. Although this literature has been instrumental in highlighting caregiver burden, it has frequently adopted deficit-oriented frameworks that foreground burden while overlooking positive dimensions such as joy, pride, resilience, strengthened family bonds, and meaning-making [12,13]. Increasingly, caregiving is recognised as a multifaceted experience shaped by both adversity and adaptation; however, these dimensions are rarely examined together. Family quality of life (FQoL) refers to the overall wellbeing and functioning of the family unit and reflects the dynamic interplay between individual, relational, and contextual influences [14]. Empirical evidence indicates that lower FQoL is associated with younger children with higher support needs [15], co-occurring conditions [16], behavioural challenges [17], and reduced adaptive functioning [18]. Socioeconomic disadvantage including employment disruption, income loss [19], and parental education disparities [20] further compounds vulnerability. In addition, stigma, social judgement, and persistent misconceptions surrounding autism constitute significant external stressors that negatively affect parental wellbeing and broader family functioning [21,22]. Conversely, social support consistently emerges as a critical protective factor in promoting FQoL. Both informal support from friends and extended family and formal support from health, education, and social care professionals can buffer caregiving-related stress and enhance family resilience [16,23]. However, access to such support is uneven, and some families report reduced or withdrawn assistance from extended family networks following an autism diagnosis. Professional support plays a particularly important role in facilitating service navigation, advocacy, and access to appropriate interventions [24,25]. Furthermore, parents who are supported to develop adaptive coping strategies demonstrate more positive psychological and family outcomes [26]. Problem-focused coping, especially when combined with social support–seeking strategies, has been associated with reduced stress and improved quality of life among parents of autistic children [27]. Emerging research has begun to acknowledge that caregiving experiences are not culturally neutral. Sociocultural norms regarding parenting [28], disability [29], gender caregiving roles [30], religion [31,32], and help-seeking shape how families interpret autism, access support, and distribute caregiving responsibilities [33]. In the UK context, ethnic minority backgrounds families may encounter additional barriers, including stigma, linguistic challenges, and systemic inequities in service access [34–36]. However, much of the existing evidence is focused on the perspective of one ethnic group, with limited qualitative insight into how diverse families construct meaning around caregiving, negotiate support systems, and sustain family wellbeing in everyday life. There remains a need for in-depth accounts that centre caregivers lived experiences across diverse backgrounds without reducing them to deficit-based comparisons. Moreover, dominant narratives of autism caregiving often oscillate between burden-focused discourses [37] and resilience-focused accounts [38], with insufficient attention to how these coexist. Families frequently describe both exhaustion and growth, frustration with services and profound relational meaning. Recent scholarships have also highlighted the role of neuroaffirmative perspectives in reshaping parental understanding of autism, moving away from deficit-oriented framings towards identity-affirming and strengths-based interpretations [39,40]. Yet little is known about how such reframing processes influence family adaptation and overall quality of life. To address these gaps, the present qualitative study explored caregivers’ lived experiences of raising autistic children in England, with particular attention to how caregiving demands, access to support, and sociocultural contexts interact to shape family quality of life. Its objectives were to explore how families navigate ongoing caregiving ecologies, negotiate formal and informal support systems, and construct adaptive responses within broader structural constraints. While the focus of this study is the experiences of UK caregivers, it is possible that many of the findings, and implications of these, may be transferable to other countries worldwide. Methods Design Qualitative design was employed for this component of the study, with the data reported in this paper collected as part of a larger mixed-methods project examining the caregiving experiences of families of autistic children in England. Participants initially took part in a survey study in which they completed demographic questions and standardised questionnaires related to caregiving experiences, social support, coping strategies, and family quality of life. At the end of the survey, participants were invited to indicate their interest in taking part in a follow-up qualitative interview by providing their email address. A mixed-methods approach was employed to capture the complexity and nuance of caregiving experiences, social support, coping strategies, and their impact on family quality of life among caregivers of autistic children. The qualitative component was intended to complement and enrich the quantitative findings by providing deeper insight into the lived experiences behind questionnaire responses, while also allowing exploration of intersectional influences such as ethnicity, culture, gender, and religion on caregiving experiences. Ethics Ethical approval was provided by University of Lincoln Research Ethics Committee (ref: UoL2024_17776). Formal opt-in consent was obtained electronically (via tick-box at the beginning of the survey). Community involvement The research team engaged in consultation with autistic adults, parents/carers of autistic children, and charities/organizations supporting autistic Children and Young People (CYP). They were involved in each stage of research, from design to data collection and analysis, to reporting our findings. This is reported according to the GRIPP-2 short-form in Table 1. Download: PNG larger image TIFF original image Table 1. GRIPP-2 short form for reporting public and patient involvement (PPI) [41]. https://doi.org/10.1371/journal.pone.0353994.t001 Participants All participants were the informal caregivers of autistic children who were either diagnosed, self-diagnosed, or on the diagnostic assessment pathway. Twelve caregivers were interviewed (n = 12), comprising ten female and two male caregivers, all of whom were biological parents living in England. Participants ranged in age from 30 to 46 years, and nine reported that their child had received a formal diagnosis. Seven caregivers identified as belonging to ethnic minority backgrounds; three from African communities and three from Asian communities, one participant self-described their ethnicity broadly as “BAME” while five identified as White. Ethnicity of the children was not collected, as the study focused specifically on caregivers’ experiences. Most participants were married (n = 10). At the time of interview, five caregivers were official carers, four were employed, two were homemakers and one was unemployed. Seven participants reported caring for a male autistic child, and one caregiver had two autistic children. Table 2 provides further details. Download: PNG larger image TIFF original image Table 2. Participant demographic details. https://doi.org/10.1371/journal.pone.0353994.t002 Procedure Following institutional ethical approval, informal caregivers of autistic children were recruited through social media platforms, autism support groups, and community organisations (e.g., schools, libraries, charities, and community centres) using purposive and snowball sampling strategies across England. Participants initially completed an online survey as part of a broader mixed-methods study. The survey was hosted on QuestionPro (https://unioflincoln.questionpro.eu/t/AB3u17lZB3v2ea) and has been available from 30 June 2024 to the present. The survey could be completed at a time and location convenient for participants. It commenced with a detailed participant information sheet, after which written digital informed consent was obtained. Participants then completed demographic questions and standardized questionnaires. A total of 150 caregivers of autistic children in England completed the survey study. Of these, 15 participants expressed interest in participating in the qualitative interviews. All 15 were contacted and invited to take part in an online or in-person semi-structured interview depending on their availability and preference. Ultimately, 12 participants completed the interviews and were included in the qualitative analysis. Ethnicity was assessed through self-identification. Participants were asked to select one of two broad categories: “White British” or “Ethnic Minority backgrounds.” This binary categorisation reflects common practice in UK public health and social policy reporting, where disparities are frequently examined across majority and ethnic minority groupings to identify structural inequalities [42]. To mitigate concerns regarding over-simplification and forced categorization [43], participants were additionally provided with an open-ended response option to describe their ethnic background in their own words. At the conclusion of the survey, participants were invited to indicate their interest in a follow-up qualitative interview by providing contact details. Interviews were subsequently arranged at times convenient to participants, including evenings and weekends, and were conducted either online or in person according to participant preference. Online interviews were conducted via Microsoft Teams, using available accessibility options (e.g., camera and caption settings, chat). Participants received £10 in recognition of their time, in line with ethical guidance on valuing autistic participants’ expertise and reducing power imbalances [44,45]. Semi‑structured interviews were guided by ten open‑ended questions on caregiving experiences, social support, coping strategies, and broader contextual factors influencing family quality of life and access to services, while allowing participants to shape the discussion. Interviews lasted 60–90 minutes; eleven were conducted online and one in person. All interviews were undertaken by the Principal Investigator, a female PhD researcher. Interviews were audio‑recorded, transcribed verbatim in NVivo, checked for accuracy, and de‑identified before analysis. Analysis. We conducted a reflexive thematic analysis from a constructionist perspective, attending to semantic and latent meanings. After familiarisation, initial codes were developed through an iterative, interpretive process rather than reliability-oriented; accordingly, inter-coder agreement was not calculated, consistent with the principles of reflexive thematic analysis [46]. To ensure transparency and rigor, the research team maintained a reflexive audit trail, including analytic memos and documented discussions during team meetings, to capture and justify interpretive decisions throughout the analytic process. Through iterative reflexive discussion, we consolidated overlapping ideas and produced six overarching themes and accompanying subthemes that captured the shared meanings across all transcripts. Research Team Positionality. Given the team’s differing positionalities and disciplinary backgrounds, continuous reflexive practice was embedded throughout analysis. The primary researcher drew on both academic expertise and lived experience as a parent-carer of an autistic child, with her ethnic minority backgrounds informing sensitivity to power, privilege, and cultural nuance; each interview began with a positionality statement acknowledging the limits of cultural understanding and affirming a respectful research space. The wider team contributed complementary neurodivergent, qualitative, social care, and cross-cultural developmental perspectives, with authors identifying as Asian (n = 1) and White (n = 3). Findings Six interlocking themes characterised families’ experiences: (1) The 24/7 Care Ecology (practical, emotional, and administrative burden plus identity change); (2) Culture, Religion, and Gender as Contextual Amplifiers (gendered caregiving norms, stigma and stereotypes, voice, representation & framing in autism); (3) Building (and Lacking) the Social Support Architecture (family/peer/charity help vs support gaps); (4) Fighting the System(s) (healthcare and education navigation, professional attitudes, resource constraints, advocacy); (5) Adaptive Resilience and Neuroaffirmation (relational bonds, growth, wellbeing practices, coping); and (6) Family Quality-of-Life Consequences (finances, work, health, relationships, social participation). We present each theme with a brief analytic synopsis followed by varied, contrasting extracts. Quotations are attributed by participant ID (P1–P12) to ensure anonymity (Fig 1). Download: PNG larger image TIFF original image Fig 1. Thematic map showing identified themes and subthemes. The thematic map illustrating caregivers’ experiences of raising autistic children in the England showing six overarching themes (ovals) and associated subthemes (rectangles). https://doi.org/10.1371/journal.pone.0353994.g001 For some families, cultural, religious, and gendered contexts shaped how caregiving responsibilities were understood and enacted, influencing experiences of stigma, support-seeking, and interactions with services. These factors intersected with structural barriers such as language challenges, limited-service accessibility, and underrepresentation within advocacy spaces, contributing to variability in caregiving experiences across the sample. These experiences are captured in the six main themes and differences reported to demonstrate these distinct challenge
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