Autism, Belief, and Society: Voices of Families in Cultural and Religious Contexts

This study is grounded in Fairclough’s (2013) Critical Discourse Analysis (CDA), which views language not only as a means of communication but also as a site where social relations, ideologies, and power structures are produced and reproduced (van Dijk, 2006; Wodak & Meyer, 2015). Through the lens of CDA, medical labels such as autism are understood as socially constructed categories that carry meanings extending beyond the medical diagnosis itself (Hagan, 2018; Rogers et al., 2005). In Türkiye, autism is often legitimized within conservative social structures by being interpreted through religious discourse–such as framing the condition as a divine test or destiny–and is simultaneously shaped by gendered expectations that influence caregiving roles and parental responsibilities (Güleç Aslan, 2017; Yaylacı & Güller, 2023). Within this framework, faith-based expressions such as “Allah’s trust,” “test,” and “destiny” can be understood as discursive sites where social ideologies and personal meanings intersect. These expressions exemplify how families recontextualize biomedical discourse within culturally embedded moral and spiritual logics, thereby transforming diagnostic labels into socially acceptable and emotionally sustainable narratives. Such discursive acts align with Fairclough’s view of language as a medium of both compliance and resistance, revealing how religious narratives function as mechanisms of cultural negotiation and meaning making within conservative social contexts.

Parents’ interpretations of the diagnosis using expressions such as “God’s test,” “trust,” or “destiny” illustrate how autism is reconstructed within a social context (Bernier & McCrimmon, 2021; Hayat et al., 2024; Hays & Colaner, 2016; Gray, 2002; Güner et al., 2021; Zhang, 2023). Such discourses may reduce stigma, help cope with guilt and provide families with alternative frameworks of meaning (Fleischmann, 2004; Kleinman, 1995; Runswick-Cole, 2008). Butler’s (1990) concept of gender performativity is also relevant for explaining how mothers disproportionately bear both care work and emotional labor. In Türkiye’s conservative social structure, motherhood is reframed as a pedagogical and therapeutic role, while the lack of systemic support is internalized by women as an individual responsibility (Arat, 2005; Featherstone et al., 2014; Fine & Asch, 1988; Güleç Aslan, 2017; Kandiyoti, 1988; Landsman, 2009; Ryan & Runswick-Cole, 2008; Yassibaş & Çolak, 2019). In conservative societies, autism is often perceived not merely as an individual or medical issue but as a social disruption (Beckford, 2003; Davie, 2007). Families employ religious references such as “test,” “blessing,” or “atonement” to explain the diagnosis, thereby fostering psychological resilience and seeking social acceptance (Arslan & Wong, 2024; Hagan, 2018; Warner et al., 2020; Yaylacı & Güller, 2023). These discourses align with prevailing social norms while simultaneously constructing alternative worlds of meaning (Fleischmann, 2004; Eyuboğlu et al., 2024; Kleinman, 1995; Yıldız et al., 2019).

This study was conducted in Türkiye’s Southeastern Anatolia region, an area characterized by low educational attainment, patriarchal structures, and strong religious norms (Arat 2005; Rfat et al. 2023a, 2023b). Awareness of special education is limited, and autism diagnoses are often stigmatized, contributing to delays in seeking professional support (Yassibaş & Çolak, 2019; Yaylacı & Güller, 2023). These conditions–delayed diagnosis, limited access to special education, and frequent rejection of the diagnosis–illustrate how autism is culturally reframed in this context (Hagan, 2018; Rogers et al., 2005). Building on this, the present research investigates how families of children diagnosed with ASD in Türkiye construct understandings of autism and interpret the diagnostic process from a discursive perspective.

This study was conducted in a conservative province in southeastern Anatolia, Turkey, characterized by a diverse ethnic and religious population and regarded as a holy city where Islam is openly practiced. Most of the participants consisted of Sunni Muslims of Turkish, Arab, Zaza, and Kurdish origin. With the influx of Syrian refugees, the growing Syrian population has contributed to the city’s cultural diversity through changes in religious practices, language use, and social relations (Bal, 2020). Sunni Islam represents the dominant religious framework in the region and influences social norms and everyday practices in many communities. In this context, religious beliefs often intersect with patriarchal norms, gendered expectations, and structural inequalities in education and literacy. Consequently, illness and misfortune are frequently interpreted through religious frameworks alongside biomedical explanations.

Against this backdrop, and considering the increasing number of autism diagnoses, the present study aimed to analyze the discourse of families with autistic children. A qualitative design was adopted. Erlingsson and Brysiewicz’s (2017) four-stage content analysis method was applied: data were coded into meaning units, organized into categories, and consolidated under four overarching themes. Collaboration among researchers was maintained throughout the analytic process, and reliability was enhanced through the involvement of an external evaluator.

The study included 12 volunteer parents (eight mothers and four fathers) residing in the Southeastern Anatolia Region of Türkiye, each with a child diagnosed with autism. Participants were selected using purposive sampling (Patton, 2014), which targets individuals with rich and relevant information for qualitative research, and snowball sampling (Noy, 2008), which facilitates access to hard-to-reach groups through participant referrals. Initial participants were contacted through the Guidance and Research Center, followed by other parents with similar characteristics identified through referrals. Participation criteria required participants to be parents of children aged 4–12 years diagnosed with autism disorder by a licensed child psychiatrist or psychologist and diagnosed within the last 1–6 years. Families from both urban and rural areas of the Southeastern Anatolia Region were included to capture potential differences in service access and sociocultural context. Parents of children with developmental or intellectual disabilities were excluded from the study to maintain a focus on experiences related to autism spectrum disorder (ASD). The snowball sampling method began with three families through local special education centres and was then expanded through referrals within social, educational and religious networks. To minimize potential bias, families were sought from a variety of regions and community groups, including those not intentionally affiliated with the same organisations. Data collection continued until theoretical saturation was reached. Saturation was defined as when no new codes, sub-themes or perspectives emerged during the last two interviews, and the data became conceptually iterative and analytically complete. The demographic characteristics of the participants are presented in Table 1.

Most of the participants were mothers (n = 9), indicating that caregiving responsibilities are predominantly shouldered by women. Most children were boys (n = 10), which aligns with the literature showing that ASD is more frequently diagnosed in males (Baio et al., 2018; Loomes et al., 2017). The age at diagnosis ranged from 1.5 to 6 years, with only a few children receiving an early diagnosis (n = 4). Most children were reported to have mild ASD (n = 8). The number of siblings varied across families, with some having twins (n = 2) or more than one child diagnosed with ASD (n = 1), both of which further increase the caregiving burden.

A summary of the flowchart monitored by the researchers during the study is presented in Fig. 1. Data were collected over a three-month period through semi-structured interviews and home-based observations. The participants were 12 volunteer families (eight mothers and four fathers) with children diagnosed with autism. Interviews were conducted between March and May 2025, each lasting an average of 15–20 min. Open-ended questions were used to explore families’ experiences with the diagnostic process, the child’s development, and daily life. All interviews were audio-recorded and subsequently transcribed. A semi-structured interview format was employed, consisting of 12 open-ended questions addressing diagnostic challenges, emotional responses, coping strategies, and cultural-religious interpretations of autism. The interview guide was designed by the research team, piloted with two parents, and refined for linguistic clarity and cultural sensitivity. A full copy of the semi-structured interview form is provided in Appendix 1. All interviews were conducted in Turkish, the participants’ native language. Transcripts were translated into English by the first author and back-translated by an independent bilingual researcher to ensure semantic and conceptual accuracy. Most interviews took place in locations preferred by the participants, while some were conducted at the Disability Coordination and Living Center. Following the interviews, two unstructured observations of approximately 30 min each were carried out in the families’ homes. Observational field notes were recorded during and immediately after each session, focusing on nonverbal communication, caregiving routines, and spatial dynamics. These notes were coded alongside the interview transcripts and used to triangulate the data, enhancing contextual understanding and validating thematic consistency. These observations provided opportunities to capture natural interactions and contributed to the identification of additional themes and meanings.

After receiving approval from the ethics committee at Adıyaman University (Approval No: 19/03/2024-22; Date: 23.02.2024)., necessary permissions were obtained from the Coordination and Life Center for People with Disabilities to access families’ contact information through the relevant authorities. The researcher engaged in informal conversations with the families of children with autism, participated in the center’s activities, and collected preliminary information about the children’s diagnostic process, age, and daily life. These conversations were conducted voluntarily and were audio-recorded in natural settings.

Content analysis was employed to evaluate the experiences of families with children diagnosed with ASD in a multidimensional manner, moving beyond traditional approaches. The four-step process outlined by Erlingsson and Brysiewicz (2017) was followed. In the first stage, researchers conducted detailed analyses of the audio recordings, produced transcripts, and performed independent analyses to gain familiarity with the data. Both inductive and deductive approaches were used, and four meetings were held for preliminary discussions. In the second stage, participants’ statements were divided into meaningful units and coded with labels such as “we cannot receive state support” and “inadequacy of access to services in special education.” In the third stage, representative codes were derived from these meaning units, following Saldaña’s (2013) approach, and were transformed into conceptual themes based on similarities and patterns. Codes were reviewed in three separate sessions to achieve consensus. Consistency and reliability were strengthened in line with the principles of Lincoln and Guba (1985) and Schwandt et al. (2007). In the final stage, four main themes and corresponding subthemes were identified. Findings were shared with participants during two control sessions for validation, as recommended by Candela (2019). Interviews were coded as K1, K2, etc., while observations were coded as Family 1, Family 2, etc. Because observation data did not follow a structured protocol, they were incorporated into the analysis in a supportive manner using free-form notes.

Families’ accounts of the autism diagnosis process reveal a multi-layered struggle shaped by social norms, professional authority, and individual resistance. Limited trust in medical authority and contradictions in professional opinions created considerable uncertainty and mistrust. Suspicion toward experts in both public and private sectors often contributed to delays in diagnosis and acceptance. Families’ narratives further illustrate how perceptions of autism, relationships with professionals, and the associated traumas developed within this climate of uncertainty.

One mother explained, “The doctor watched the video. He said that based on the video I saw, it’s not autism. But he said that the child I saw has autism” (K12). This statement reflects how inconsistent opinions from professionals intensified parents’ confusion. Another remark emphasized the superficiality of some clinical assessments: “He didn’t cry when he was vaccinated… he’s not resilient, he doesn’t feel pain” (K12). Such experiences demonstrate that professional authority did not always instill confidence and, at times, exacerbated families’ uncertainty.

Although families frequently noticed atypical behaviors in their children at an early stage, this awareness was not immediately translated into a clinical diagnosis. As one mother expressed, “We understood, but we couldn’t put a name to it” (K11). Similarly, another parent stated, “We noticed that there was something strange about the child, but we couldn’t understand what it was” (K12). These accounts suggest that while parents intuitively recognized developmental differences, a lack of access to social and scientific knowledge hindered early intervention. Overall, these narratives highlight the importance of experiential knowledge– such as maternal intuition and everyday observations– while also revealing the inadequacy of professional systems in acknowledging and integrating such insights.

Another important theme related to diagnosis is the rejection or postponement of an autism diagnosis by families. This tendency is not only associated with a lack of information but also with social norms, fear of stigmatization, and threats to parental identity. One mother explained: “I am a teacher, I know. We knew a little about autism, but I didn’t want to label my child” (K12). This statement highlights the conflict between professional and parental identities and reflects the gap between professional knowledge and emotional acceptance. The same participant described seeking another opinion: “I didn’t accept it… I showed it to another doctor” (K12). These examples indicate that the diagnosis carries not only a medical but also a social burden, contributing to its postponement. Fathers, in contrast, tended to interpret the diagnosis through social responsibility and public perception. One father (K2) explained, “I believed the doctor, but I didn’t tell anyone for a while - people talk too much.” Another added, “As a father, I have to look strong; I can’t show that I’m worried” (F4). These accounts reveal that while mothers struggled with guilt and emotional burden, fathers’ concerns centered on family reputation and masculine expectations.

Delays in diagnosis result in children beginning intervention programs late, which in turn leads to developmental losses. Participant K11 described this process: “From one and a half to two years old, he started to forget what he had said… At two years old, he closed himself off. Then the diagnosis process began.” Such accounts illustrate how parents often recognize developmental regression retrospectively, which then prompts the initiation of the diagnostic process. Similarly, the statement “We accepted it when he was two and a half years old, and then we started medication” (K12) demonstrates that intervention is directly linked to diagnosis, and therefore that delays have a direct impact on developmental outcomes. The normalization of such delays in family discourse suggests that systemic shortcomings are reproduced through individual narratives, perpetuating barriers to early intervention. Families with higher socioeconomic resources reported faster access to diagnosis and rehabilitation services, while those in rural areas described prolonged uncertainty and reliance on informal support networks. This divergence underscores how class and geography intersect with diagnostic pathways and acceptance.

The diagnosis process is often less a matter of final acceptance than a journey oscillating between ongoing internal negotiation and hopeful resistance. This contradictory stance is reflected in statements such as, “We didn’t accept it, we took him to another doctor. We couldn’t be sure of the diagnosis” (K12). Families may approach the diagnosis without fully internalizing it. At the same time, this resistance also embodies hope: “We always had hope for recovery. After the supplementary medication, there was a slight improvement” (K12).

Here, hope is not merely an emotion clung to in difficult time but rather a way of life—parents continue to do everything they can for their children and refuse to give up. For instance, one parent explained, “We did not give up on him. We always tried to get him to talk” (K11). This statement demonstrates the will to transform resilience and hope into action.

During the observation period, the family members remarked: We took our child to every doctor we could find. Each one said something different and prescribed different medications. (K1) This narrative reflects persistence and a determination to seek improvement despite contradictory medical advice.

Such accounts contribute to framing autism as a “treatable” condition while simultaneously reproducing society’s pressure to conform to “normality.” The themes derived from families’ narratives indicate that an autism diagnosis is not merely medical but is instead a decision laden with social, cultural, and psychological meanings. Behind the resistance, delay, and hope-infused acceptance of autism lies a strong sense of subjectivity and struggle shaped by individual discourse.

Families often draw upon religious beliefs and social norms as strategies of defense, reframing, and meaning-making in their process of coping with autism. Such strategies provide individual relief and help families manage social judgments, avoid self-blame, and develop a more positive attitude toward the diagnosis. Participant K1 legitimized the diagnosis by associating it with a sacred value: “At first, I thought that God had given us a special gift, and then I accepted it.” Similarly, K2 described developing an internal coping mechanism through the religious concept of patience: “I told myself that I was being tested with my son, and I saw it as a test of patience.” Participant Ö3 defended against social judgment through belief in divine creation: “Neighbors say this child is different, but I say God created him that way.”

Other participants expressed similar religiously framed perspectives. K4 interpreted autism as a metaphysical affirmation: “Maybe this is a blessing, we don’t know, maybe our sins are being erased.” K5 reframed normative expectations through belief in destiny: “Everyone expects a normal child, but God gave us a different one, and he is our child.” Ö6 illustrated the transition from individual questioning to submission: “I first said, ‘Why me?’ Then I said, ‘God is great; there must be a wisdom in this.’” K8 used the concept of gratitude as a psychological balancing tool: “The child didn’t speak, but thank God he is healthy, that’s something.” K9 combined belief in fate with parental responsibility: “It’s autism, yes, we said, God has written it this way, we will do our best.” K10 interpreted developmental progress in a religious framework: “He started talking with God’s permission.” K11 combined individual effort with divine will: “We didn’t give up on him; we tried patiently. If there is improvement, it is from God.” K12 reinforced this framework by stating, “Zeynep was like a test for us, teacher, but every child is our destiny. We persevered with patience, and Allah helped us.”

Similar motifs were also found in observation data. For example, Family 2 explained: I took my autistic child to many sheikhs. We waited a long time. Still, he didn’t get better. This account illustrates how religious figures may be seen as potential sources of healing. Additionally, recurring linguistic motifs such as “Allah willed it,” “test,” “My Lord created him that way,” “we tried with patience,” and “there is wisdom in it” demonstrate that autism is understood not only as a medical condition but also as a phenomenon embedded in religious and cultural frameworks. This ambivalence reflects the dual nature of faith-based narratives, which can simultaneously offer emotional relief and moral grounding while unintentionally discouraging early professional intervention. Families often negotiated between spiritual trust (“sabr”) and pragmatic help-seeking, illustrating how belief systems both empower and constrain agency within culturally conservative settings.

The autism diagnosis process makes the caregiving responsibilities of mothers more visible and highlights their multifaceted roles. Many participants emphasized that they were not only mothers but also educators, therapists, and guides: “I became a teacher,” “I learned while teaching my son” (K3). This expanded motherhood experience is often accompanied by loneliness and emotional burden. As some participants explained: “I am the mother of five children, but I couldn’t figure this out” (K3), “Even if they are your children, you get tired” (K1). Feelings of guilt were also common, often linked to delayed diagnosis and the internalization of systemic shortcomings: “I was cowardly,” “I should have gone” (K4), “I knew about autism but couldn’t accept it for my child” (K12). While mothers frequently articulated emotional exhaustion and identity transformation, fathers, in contrast, tended to emphasize financial responsibility and societal judgment. One father (F3) noted, “My wife handles the therapies; my role is to provide for the family.” This distinction echoes findings by Grebe et al. (2022), suggesting that fathers often experience autism less through caregiving and more through moral and social responsibility.

Religious discourse emerged as both a coping mechanism and a means of making sense of the situation: “Praise be to God, things are better now” (K9), “May God spare anyone else from this” (K5). Mothers also described being deprived of systematic support and isolated from social life: “There are five of us, but our social life is zero” (K4), “We are always at home, we can’t go out, we have nowhere to go” (K5). These accounts underscore not only personal struggles but also gender inequality. Statements such as “I am both a mother and a father” (Family 6) reveal women’s invisible care work and emotional loneliness. Similarly, one mother explained: “I love my autistic child more than my other two children, but his father does nothing. I do all the care” (K11). Such narratives highlight how mothers construct emotional bonds with their autistic children in ways that are both compensatory and protective, while fathers largely withdraw from caregiving responsibilities. In this way, inequality is reproduced through internalized discourse, as women define themselves as “both mother and father.”

Families experience the autism diagnosis not only as a health issue but also as a process accompanied by labeling and stigmatization from society. In this context, discourse emerges as a functional form of resistance, helping families avoid deviation from social norms, prevent exclusion, and preserve family honor. For example, participant K3 stated: “The letter R doesn’t come out for us either,” and “Let’s say I learned it at this age.” Such expressions function as discursive tools to normalize developmental delays and reduce stigmatization. Similarly, participant K5 explained: “What I’m saying could also happen in normal children,” reflecting a defense strategy aimed at framing differences as variations within normal development. These narratives illustrate how families attempt to reframe autism as a form of diversity rather than a “flaw”. This reframing aligns with the principles of the neurodiversity movement, which views autism not as a deficit but as a natural variation in human cognition and behavior. Families’ normalization strategies thus resonate with global efforts to affirm difference as part of human diversity rather than pathology.

Another strategy of resisting stigmatization is what can be described as “emotional simplification” and legitimization through religious discourse. Participant K9 expressed gratitude by saying “Elhamdülillah,” framing the situation as meaningful and fostering resilience. Emotional transformation was also emphasized in participants’ accounts of changing emotional responses within the family. As illustrated by K10’s statement– “I was shocked when my mother said my heart hurts”– previously unexpected expressions were reframed as significant developmental achievements. This reframing supported the construction of a success narrative that fostered both familial adjustment and social acceptance. Such accounts highlight how families make their children’s developmental progress visible through emotional transformations. For example, participant K10 described: “Now he gets sad when someone cries, he expresses his feelings,” framing emotional and cognitive development as an indicator of success. These discourses not only increase families’ hope but also serve as tools to legitimize their children’s experiences to the broader community. Importantly, variations in coping and normalization strategies were observed across families depending on socioeconomic status, religiosity, and access to services—those with greater community support networks reported stronger collective resilience, while more isolated families relied primarily on faith-based interpretations.

The comparative normalization discourse employed by families toward their autistic children is also noteworthy. For example, participant K11 stated: “Zeynep is a little better than the others,” reflecting an attempt to interpret the child’s development in relation to socially accepted norms. Such comparisons, while making individual differences visible, often serve to present the child as “less different,” thereby creating a protective shield against stigmatization. Importantly, the discourse used by families-particularly mothers-extends beyond personal narrative. It functions as a coping mechanism in response to values that prioritize men, normative developmental expectations that marginalize women, and inadequate social policies. In this sense, resistance to stigmatization can be understood as a form of micro-political struggle.

The findings reveal that an autism diagnosis is not merely a clinical process but also an experience intertwined with psychosocial, cultural, and spiritual dimensions. Obtaining a timely and accurate diagnosis is often challenging for families, particularly in regions where healthcare infrastructures are under-resourced and fragmented. In such contexts, families encounter long waiting lists, limited access to specialized professionals, and insufficient dissemination of information about developmental disorders. In particular, delays in diagnosis have been linked not only to shortcomings in the healthcare system but also to parents’ fears of denial and stigmatization (Farooq & Ahmed, 2020; Sulaimani & Mursi, 2022). Beyond systemic barriers, cultural attitudes and social perceptions play a crucial role in delaying the diagnostic journey. Even when families notice developmental differences, they may hesitate to seek formal evaluation because of concerns about being socially labeled or blamed for their child’s condition. As a result, many parents rationalize observable differences by attributing them to temporary delays in growth or personality-related variations, labeling the situation as “just a phase” or “temporary” (Mitter et al., 2019; Oduyemi et al., 2021). In this way, the early signs of autism are frequently normalized, which further postpones access to professional care and intervention opportunities. Such hesitations also reflect what scholars have described as “anticipatory stigma,” where families expect negative social consequences even before receiving a formal diagnosis (Gray, 2002; Kinnear et al., 2016). This anticipatory stigma may be reinforced by relatives and community members, who sometimes discourage families from pursuing medical assessments out of fear of reputational harm. Consequently, delays in diagnosis not only stem from institutional inefficiencies but also mirror deeply rooted social anxieties about difference, disability, and parental responsibility. The cumulative effect is that the diagnostic process becomes a prolonged negotiation between professional expertise, cultural narratives, and community expectations–making it a stressful and emotionally charged journey for families.

Religious discourse emerges as both a coping mechanism and a defense strategy against the social environment. Expressions such as “Allah’s trust,” “test,” and “destiny” reinterpret the diagnosis within a metaphysical framework, fostering resilience. This pattern is consistent with faith-based acceptance models proposed by King et al. (2006) and Roberts (2022). These faith-centered expressions not only provide emotional comfort but also serve as discursive instruments through which families actively reconstruct meaning and agency within restrictive social settings. By framing autism as a divine “test” or “trust,” parents transform potentially stigmatizing experiences into moral and spiritual narratives that reaffirm dignity and purpose. In this sense, religious discourse operates as a form of cultural negotiation—simultaneously reinforcing social belonging and enabling subtle resistance to stigmatization. This dynamic aligns with Fairclough’s (2013) understanding of discourse as a site where individuals contest, reproduce, and reinterpret dominant ideologies, suggesting that faith-based narratives play a central role in families’ meaning-making processes. However, religious discourse can also delay the pursuit of professional support, thereby limiting opportunities for early intervention (Farooq & Ahmed, 2020). For example, some families may seek to address the diagnosis through religious practices such as “consulting a sheikh” or “waiting patiently.” These findings highlight that autism diagnoses in conservative regions are embedded in multi-layered social meanings and that religious-cultural representations can exert both supportive and delaying influences. Accepting the diagnosis does not follow a linear path for families; rather, it unfolds in a fluctuating and cyclical manner, moving between emotions such as guilt, anger, helplessness, and grief (Ardiansyah & Trustisari, 2024). King et al. (2006) note that families initially experience shock, denial, and guilt but gradually move toward acceptance, meaning-making, and restructuring. This emotional adaptation process significantly affects both individuals and family relationships. Benson (2018) emphasizes that while emotional distancing between spouses may initially occur after diagnosis, over time, cooperation often develops for the well-being of the child.

The diagnosis process also necessitates a redefinition of family roles. Mothers, in particular, assume multiple responsibilities–including educator, therapist, advocate, and counselor–largely due to the influence of gender norms. This situation contributes to burnout, isolation, and psychological strain, leading to identity transformations rooted in self-sacrifice (Benson, 2018; King et al., 2006; Sulaimani & Mursi, 2022). These findings illustrate that an autism diagnosis reshapes not only the child’s life but also the entire family’s dynamics, with the pressures of societal roles intensifying the need for psychosocial support, especially for mothers. In daily life, mothers often carry multiple roles as caregivers as well as educators, therapists, advocates, and providers of emotional support. These roles extend beyond traditional notions of motherhood, redefining it through pedagogical and therapeutic responsibilities and positioning mothers as active agents within social relationships (Safe et al., 2012). However, this multiplicity of roles brings emotional burdens, loneliness, and burnout. Under the influence of traditional gender norms, women frequently internalize their position as primary caregivers and perceive caregiving as an individual rather than systemic responsibility (Bozkurt et al., 2019; Çokyaman & Battal, 2020; Herrero et al., 2024; Pamuk & Muç, 2021).

Consequently, delays in diagnosis are often interpreted as personal shortcomings instead of structural deficiencies, thereby deepening feelings of guilt. Religious discourse mitigates these role conflicts by providing psychological relief and framing the diagnosis within a metaphysical context. In doing so, it offers mothers both resilience and meaning. Thus, motherhood in this context emerges not merely as an individual task but as a complex experience shaped by cultural, social, and ideological structures (Zhou & Ning, 2025).

The findings highlight themes frequently mentioned by mothers, including withdrawal from social environments, feelings of loneliness, and experiences of invisibility. Research indicates that mothers’ connections to their social environment weaken over time, and their support networks often remain inadequate, undermining their psychological resilience (Safe et al., 2012). Divorced mothers, in particular, shoulder the entire burden of care alone, performing invisible labor while becoming further isolated within patriarchal structures. This situation should be understood as the outcome of systemic gender inequality rather than an individual issue. Motherhood, as emphasized in the literature, is a socially constructed identity that can push women into silence and marginalization (Carpenter & Austin, 2007).

Nevertheless, women develop resistance to these pressures by rebuilding their social networks and strengthening their self-efficacy (Chen et al., 2020). Such strategies extend beyond individual effort, constituting forms of collective resistance against systemic inequalities. In addition, families gradually develop ways of normalizing autism in response to social stigma. Through this process, they normalize difference itself and reinforce psychological defense mechanisms (Barmak et al. 2025; Rfat et al. 2023a, 2023b; Zhou & Ning, 2025). These findings reveal both the individual resilience of mothers and their capacity to transform social norms, highlighting the silent, everyday forms of resistance that emerge within the female experience. Beyond coping, families also utilize religious-based interpretation against stigmatization. Religious expressions provide personal consolation and a strong source of legitimacy in resisting social exclusion. Such discourses enable individuals to generate internal resilience against social pressures and to reinterpret the diagnosis within a metaphysical framework. The tendency to compare the child with peers and to place them in a relatively positive position creates a protective discourse against stigma by presenting difference as “less different.” These discourses function as micro-political resistance mechanisms developed by mothers. However, this resistance emerges both at the individual level and as a collective strategy against patriarchal structures, social norms, and institutional deficiencies (Khougar et al., 2024; Luna et al., 2023).

Mothers’ coping strategies–transforming themselves into pedagogical subjects, alleviating emotional burdens, and drawing on religious references–demonstrate how they are constantly negotiating with prevailing norms (Safe et al., 2012; Zhou & Ning, 2025). This reveals that mothers of children with autism assume multidimensional roles at the intersection of care work, stigma, and gender inequality, striving for visibility both within the family and in the public sphere. As Mitter et al. (2019) emphasize in their systematic review, families experience anxiety about being labeled themselves through “proximity stigma.” Yet some families resist this process by making their children more visible in society and working actively to normalize autism. A study in the Valencia region, for example, showed that these families developed greater self-efficacy and enhanced psychological resilience (Roig-Vila et al., 2020). Similarly, Gray (2002) notes that families cope with feelings of shame and avoidance, which manifest in both internalized and external forms of stigmatization. Kinnear et al. (2016) further found that families who adopt strategies to counter stigma experience less social isolation and build stronger social bonds. In this context, an autism diagnosis should not be regarded merely as a clinical label but as part of broader processes of identity transformation, social struggle, and collective subjectivation.

The main strength of this study lies in its use of content analysis to explore in depth the experiences of families with children diagnosed with ASD in the Southeastern Anatolia Region, a context characterized by conservative cultural structures. Unlike most studies in the literature, which focus on families in large urban centers, this research contributes uniquely by highlighting geographical, cultural, and sociological dimensions. It demonstrates that autism is not only a medical condition but also has a complex nature. The multiple roles undertaken by mothers, the invisible labor performed within patriarchal structures, and the resilience strategies legitimized through religious discourse provide the study with its socio-religious distinctiveness.

Importantly, by focusing on Türkiye’s Southeastern Anatolia Region–a setting shaped by strong religious traditions, patriarchal social structures, and limited institutional accessibility—this study introduces a culturally grounded framework that expands current understandings of autism beyond Western-centric and urban perspectives. The findings reveal how local belief systems and moral economies influence family responses to diagnosis and caregiving, underscoring the importance of context-specific policy and intervention design. In doing so, the study challenges the assumption that autism-related experiences are universal, demonstrating that sociocultural and spiritual contexts significantly mediate both perception and adaptation.

The results first underscore the importance of providing culturally sensitive intervention strategies for families. Since religious and cultural discourses strongly shape how families interpret autism, interventions should acknowledge and engage with these frameworks rather than ignore or dismiss them. Professionals working in health and education sectors can be guided by reflective and culturally attuned questions adapted from Kleinmann (1980) (2003), such as: “What do you call your child’s problem?”, “What do you think caused it?”, “Why do you think it started when it did?”, and “What kind of help do you think would be most beneficial?” These open-ended questions help bridge the gap between biomedical and cultural understandings, enabling professionals to appreciate parental perspectives while maintaining clinical clarity. Incorporating such culturally sensitive communication techniques can strengthen family engagement, trust, and collaboration. Health professionals, educators, and therapists working with families in conservative regions should be trained to communicate in ways that respect cultural values while still emphasizing the importance of early intervention. Second, the invisible labor and multiple caregiving roles undertaken by mothers highlight the urgent need for psychosocial support programs. Counseling, peer support groups, and community-based initiatives can help reduce feelings of isolation, guilt, and burnout. Gender-sensitive interventions are particularly critical, as traditional norms place disproportionate responsibility on mothers. Supporting fathers’ active involvement in caregiving could also ease the burden on women and promote more balanced family dynamics.

From a policy perspective, culturally grounded intervention frameworks are beginning to take shape in Türkiye and other Muslim-majority contexts. For example, the Ministry of Family and Social Services has piloted parent training programs that integrate religious and cultural perspectives into early education and counseling services. Similarly, international community-based awareness campaigns in Jordan and Indonesia have demonstrated that collaboration with local religious leaders can effectively reduce stigma and promote social inclusion for children with ASD. Drawing on these examples, future policy initiatives should prioritize culturally embedded counseling frameworks, multidisciplinary collaboration, and localized awareness programs tailored to community needs.

Third, the findings point to broader structural issues, including inadequate healthcare systems, insufficient institutional support, and systemic gender inequalities. Policymakers should prioritize inclusive social policies that provide financial, educational, and psychological resources for families of children with ASD. Public awareness campaigns aimed at reducing stigma and proximity stigma are essential for fostering acceptance and building stronger social support networks. Finally, this study demonstrates the need for comparative research across regions and cultural contexts. Larger and mixed-method studies could deepen understanding of how religious, cultural, and social factors shape families’ experiences with autism. Future research should also pay greater attention to fathers’ roles, intergenerational caregiving dynamics, and how resilience strategies evolve over time.