Implications or Recommendations

Culturally responsive, systemic, and couple-focused support services are needed for families in Türkiye to strengthen marital and family functioning.

1 Introduction

Autism is a neurodevelopmental condition characterized by differences in social interaction, communication, and repetitive or restrictive behaviors (American Psychiatric Association 2022). Over recent decades, the prevalence of autism has increased significantly, highlighting the importance of understanding its impact not only on individuals but also on families and communities. In the early 2000s, autism was diagnosed in approximately 1 in 150 children in the United States. Today, this number has risen to 1 in 36, reflecting greater diagnostic awareness and improved screening practices (Dufault et al. 2023). Globally, the World Health Organization estimates that 1 in 100 children are autistic (WHO 2023). While precise prevalence data for Türkiye is limited, estimates suggest that approximately 1.5 million individuals are autistic, with nearly 6 million people, including family members, affected directly or indirectly by this condition (Tohum Autism Foundation 2023).

Families raising autistic children face a wide range of challenges that extend beyond caregiving responsibilities. These include emotional, financial, and relational strains that disrupt family routines and dynamics, often reshaping marital relationships. Research consistently highlights that parents of autistic children experience significantly higher stress levels than parents of neurotypical children or those with other developmental conditions (Blacher and McIntyre 2006; Bonis 2016). This heightened stress is linked to the unique and often intensive demands of caregiving, including managing behavioral differences, coordinating specialized education and therapy, and addressing societal stigma. These demands are not isolated to individual experiences; they ripple throughout the family system, impacting relationships, roles, and overall well-being (Weaver et al. 2013).

1.1 Structural Family Theory and Autism

Structural Family Theory, developed by Salvador Minuchin (2018), offers a useful framework for understanding how autism shapes family dynamics. This theory conceptualizes families as interconnected systems in which individual behaviors and challenges are deeply influenced by relational patterns, boundaries, and roles (Gladding 2012). Minuchin's work emphasizes that family functioning is contingent upon the balance of roles and boundaries within the system. When a family member, particularly a child, faces challenges such as those associated with autism, these issues often influence the entire family structure. For example, caregiving demands can shift parental roles, leading to imbalances in spousal relationships and altering sibling dynamics. Applying this framework allows researchers to explore not only the challenges families face but also the adaptations they make in response.

Families raising autistic children often experience shifts in their relational patterns that stem from caregiving demands and emotional stress. Research supports the idea that the mental and behavioral challenges of one family member are closely tied to the dynamics of the entire family (Weaver et al. 2013). For example, the need for constant caregiving may lead to emotional exhaustion for one parent while creating feelings of disengagement or helplessness for the other. These dynamics often challenge the family's cohesion and functioning, requiring systemic adaptations to maintain stability.

1.2 Cultural Context in Türkiye

In Türkiye, cultural norms and traditional family roles add a unique layer of complexity to the experiences of parents raising autistic children. Mothers are often expected to take on the primary caregiving responsibilities, while fathers are seen as financial providers (Gürmen and Kılıç 2022). This division of labor can create inequities and tension within marriages, particularly when caregiving demands become overwhelming. Mothers frequently report emotional and physical exhaustion due to their dual roles as caregivers and household managers, while fathers, who may feel disconnected from day-to-day caregiving, often experience difficulties in emotionally engaging with the child (Duru and Duyan 2017). This gendered dynamic can lead to feelings of resentment and frustration, further straining marital relationships.

Additionally, societal stigma surrounding autism in Türkiye exacerbates these challenges. Families of autistic children often face social exclusion and judgment, with autism sometimes being viewed as a “family failure” or a source of shame (Tümlü and Akdoğan 2019). This stigma not only isolates families but also discourages them from seeking professional support, limiting access to vital resources and services (Uz and Kaya 2018). Financial strain further compounds these difficulties, as many families struggle to afford specialized care, therapies, and education (Ardic 2020). These intersecting challenges often result in higher stress levels, reduced marital satisfaction, and, in some cases, divorce.

However, despite these difficulties, some families demonstrate resilience. Research suggests that navigating the challenges of raising an autistic child can strengthen partnerships for some couples, fostering a sense of unity and purpose (Baeza-Velasco et al. 2013). These positive outcomes are often associated with strong communication, shared responsibilities, and access to support systems. Exploring these dynamics within the cultural and social context of Türkiye can provide valuable insights into how families adapt to caregiving demands and societal pressures.

While global research has extensively examined the impact of autism on family dynamics, there is limited exploration of these experiences in Türkiye. Most existing studies on autism and family dynamics focus on Western contexts, where cultural norms, gender roles, and societal attitudes differ significantly from those in Türkiye. Understanding how families in Türkiye navigate the challenges of raising autistic children requires attention to the unique sociocultural and systemic factors that shape their experiences. For example, the traditional emphasis on extended family networks in Türkiye can provide both support and additional pressure. While extended family members may offer practical assistance, they may also perpetuate stigma or hold differing expectations about caregiving responsibilities. These dynamics are further complicated by limited access to specialized services in many parts of Türkiye, which forces families to rely heavily on personal resources or informal networks. Examining these cultural nuances is essential for developing tailored interventions and support systems that meet the specific needs of Turkish families.

In this study, we use identity-first language (e.g., “autistic children”) to reflect perspectives commonly used within the autism community and in contemporary scholarship, while recognizing that preferences for person-first or identity-first language may vary across individuals and contexts. Furthermore, this study seeks to address this gap by exploring the lived marital experiences of parents raising autistic children in Türkiye. Guided by Structural Family Theory, the study examines how parents experience and make sense of changes in their spousal relationships, caregiving roles, and family dynamics within a cultural context shaped by traditional gender expectations and societal norms. Through an open-ended, exploratory approach, this research aims to understand how parents navigate the relational and emotional challenges that emerge in the context of autism parenting. The research question guiding this study is: “What are the lived marital experiences of parents in Türkiye raising an autistic child, and how do they navigate and make sense of the relational, emotional, and societal challenges they encounter within their marriages?”

2 Method

This study employed a phenomenological approach to explore the marital experiences of parents of autistic children. To facilitate in-depth discussion and the sharing of diverse perspectives, focus groups were utilized, allowing participants to express their ideas, perceptions, and experiences, as well as to compare and contrast their points of view (Krueger 2014). Data from these focus group interviews were then analyzed using thematic analysis to identify and interpret key themes related to the participants' experiences.

2.1 Participants and Recruitment

This study received ethical approval from the Institutional Review Board (IRB) at Hacettepe University. All participants provided written informed consent after a thorough orientation that explained the study's purpose and procedures. They were assured that their information would remain confidential and were informed of their right to withdraw from the study at any time if they experienced any discomfort during the survey.

Participants were recruited through resources provided by the university family center, with all individuals recruited from Ankara, the capital of Türkiye. To ensure the inclusion of key stakeholder groups, we employed purposeful sampling. Purposeful sampling was particularly important for this phenomenological study, as it allowed us to focus on participants who had direct experience with the phenomenon under investigation (Creswell and Creswell 2017). As Creswell (2007) suggests, in phenomenological research, criteria-based selection is crucial when a large number of individuals experience the phenomenon. Consequently, this study used the criterion sampling method, a specific type of purposeful sampling, to select participants. Criterion sampling ensures that the sample consists of individuals who meet specific qualifications directly related to the research objectives (Marshall and Rossman 2014). For this study, the criteria for selecting participants were as follows: (a) being a parent of autistic children, (b) having a child without a secondary disability, and (c) living together as a couple without being divorced. In this study, secondary disability refers to any co-occurring diagnosed condition. Participants whose children had additional diagnoses were excluded to maintain a more homogeneous sample and to focus specifically on marital experiences related to autism, as additional conditions may introduce more complex caregiving demands that could confound the phenomenon under investigation. These criteria were chosen to ensure a focused exploration of the marital experiences of parents specifically dealing with the impact of autism without the confounding factors of additional disabilities or the dynamics of single parenting or post-divorce relationships.

A total of 22 participants (females = 8, males = 14) met these criteria and participated in the study. The majority of participants were middle-income (n = 12), followed by low-income (n = 8) and high-income (n = 2), based on participants' self-reported socioeconomic status relative to the Turkish context. Participants ranged in age from 27 to 52, with most between 35 and 45 (M = 39.3, SD = 6) years old. The majority had completed high school or university, with four participants holding a master's degree. They represented various occupational groups, including teachers, nurses, managers, and self-employed individuals. Most participants resided in urban areas, with only four living in rural settings. The majority had one or two children, while three participants had three or more. None of the participating families had more than one autistic child. The children of the participants ranged in age from 5 to 13 years, reflecting variation across developmental stages. All participants represented distinct families, and no couples participated together in the focus groups. Please refer to Table 1 for complete demographic information of the participants.

2.2 Procedure

First, a semi-structured interview form was developed for the focus group interviews in this study. The development process started with an extensive review of the relevant literature to identify key themes and concepts pertinent to the study's objectives. This review helped to ensure that the interview questions would be aligned with existing research and focused on the most critical aspects of the participants' experiences. An initial draft of the interview form was created based on this literature review and established guidelines for focus group research. This draft was then reviewed by four experts: two specializing in marriage and family counseling, and two additional experts in autism. The experts evaluated the interview questions for clarity, comprehensibility, and their alignment with the study's goals. Their feedback was crucial in refining the questionnaire, with particular emphasis on improving the clarity of the questions and eliminating any elements that could potentially cause distress to participants.

Before conducting the main study, a pilot focus group interview was held with six parents to test the effectiveness of the interview form. The data from this pilot session were not included in the main analysis. Instead, the insights gained from the pilot study were used to further refine the interview form, focusing on enhancing the clarity and comprehensibility of the questions. The revisions made based on the pilot study were incorporated into the final version of the interview form used in the main study.

For the main study, three separate focus group interviews were conducted, each lasting approximately 60 min. The first and second groups consisted of seven parents each, while the third group included eight parents. Consistent with recommendations for focus group size, these groups were kept small to facilitate open and easy sharing of experiences and opinions (Krueger 2014). The fourth author served as the moderator for all focus groups, while the first author acted as the co-facilitator and note-taker. Given the mixed-gender composition of the focus groups, attention was paid to creating a supportive and non-judgmental environment to encourage open sharing. The moderator facilitated discussions in a way that allowed all participants to express their perspectives comfortably, particularly when discussing potentially sensitive topics. Both facilitators have counseling backgrounds with expertise in family counseling and autism. The focus groups were held in a conference room, and all sessions were audio-recorded and transcribed verbatim by a professional transcription service. All focus group interviews were conducted in Turkish. The interview data were translated into English by the research team, and quotations were carefully reviewed to ensure accuracy and consistency in meaning. Participants were provided with a $25 gift card as a token of appreciation for their participation in the study.

2.3 Data Analysis

In this study, we used reflexive thematic analysis (Braun and Clarke 2021) to move from the interview data to conceptual themes that elucidate patterns identified in the focus groups. This method is well-suited for developing an inductive, critical analysis, grounded in the understanding that data reflect the socially constructed nature of reality. The analysis began with a thorough familiarization with the dataset. The first and third authors systematically read through all transcripts, engaging deeply with the data. We followed a systematic approach developed by Research Talk, which involved selecting segments of data and writing extensive analytic memos (Saldaña 2021). This process allowed us to identify key ideas and patterns emerging from the participants' discussions. Frequent meetings were held to discuss observations and to develop a quote inventory (Maietta et al. 2016), which informed the subsequent coding process. During coding, we used a specific technique called versus coding (Saldaña 2021) to highlight tensions both between participants and within participants in relation to the imagined other. This approach is particularly effective for focus group data, where multiple voices and perspectives are present. The quotation inventories created during familiarization were used to generate initial codes for each stakeholder group. The first three authors then reviewed the consistency of these codes, discussed them in detail, and refined them to establish a coherent coding framework. The generated codes were grouped into categories, which were further organized into themes. This process involved iterative discussions between the three authors to ensure that the themes accurately captured the underlying patterns in the data. These discussions, coupled with a review of relevant literature and similar research, helped ensure that the themes were both relevant and robust. Once the themes were finalized, they were carefully defined and named to reflect their essence. This involved ongoing debriefing with all authors and considering feedback to ensure that the themes were clearly articulated and well-defined. Throughout the writing process, the themes, names, and definitions continued to be refined as the analysis was translated into the final report. This reflexive and collaborative process ensured that the data analysis was both rigorous and reflective of the participants' experiences.

2.4 Credibility and Trustworthiness: Indicators of Qualitative Research Quality

Ensuring credibility and trustworthiness is important in qualitative research (Wiersma and Jurs 2005). According to Daymon and Holloway (2002), establishing these criteria is essential for providing confidence in the quality and accuracy of a study's findings. Various methods can be used to enhance credibility and trustworthiness, and it is recommended to use at least two of three methods in qualitative research (Creswell 2007). An expert review process was implemented, where feedback was obtained from experts during the stages of developing the research questions, selecting the methodology, and analyzing and reporting the data. This input helped refine the study's approach and ensured methodological rigor. Additionally, short interview intervals were maintained, with interviews conducted by both researchers three times a week, each session lasting approximately 1 h. This frequent interaction helped maintain consistency and depth in data collection (Patton 2015; Shipman et al. 2016).

Further measures to ensure credibility and trustworthiness included providing detailed descriptions of the research process, data collection tools, and data analysis procedures, which contributed to transparency and allowed for replication. Purposeful sampling was used to select participants who met specific criteria relevant to the research objectives, enhancing the study's relevance and depth. Direct quotations from participants were also included, allowing their voices to be clearly heard and ensuring that the findings accurately reflect their experiences (Roberts and Priest 2006).

3 Findings

In the exploration of the lived marital experiences of parents raising autistic children in Türkiye, our analysis revealed five overarching themes that illuminate the complexities of navigating spousal relationships, parenting roles, and societal expectations. These themes provide a nuanced understanding of how parents experience and make sense of their marital trajectories, the emotional and psychological adjustments they undergo, and the challenges they face in balancing individual agency within a collective family dynamic. From disruptions in intimacy to reconciling shattered expectations, and from differing parenting approaches to the pursuit of resilience and meaning-making, each theme offers a unique perspective on the evolving nature of marital relationships in autism parenting. The five key themes include: (1) Intimate Disruptions: Marital Trajectories in Autism Parenting, (2) Shattered Dreams and New Realities: Confronting Expectations in Autism Parenting, (3) Divergent Paths: Negotiating Parenting Approaches in Autism Families, (4) Navigating Personal Agency: Individual Choices in Collective Family Contexts, and (5) Transformative Meaning-Making: Emotional Resilience and Psychological Adaptation.

3.1 Intimate Disruptions: Marital Trajectories in Autism Parenting

This theme examines the evolution of intimate relationships between partners as they navigate the journey of autism parenting, focusing specifically on the transformation of emotional connections and relationship quality over distinct life phases. It captures how the quality and nature of marital intimacy shifts through key transitional periods, with particular attention to the impact of an autism diagnosis on couple relationships.

The temporal progression of marital relationships emerges as a central narrative, with participants describing distinct phases of change in their intimate connections. Many couples experienced a marked contrast between their pre-diagnosis relationship quality and post-diagnosis dynamics. One participant articulated this transformation:

The first year we met, when we were still dating, everything was fine, my husband used to love me. But as we approached marriage, it became a little more reckless. After he got married, he became an even more classic Turkish man. I mean, I'm already at home, okay, we got married, everything changed, then there is no interest or anything. (female, 33, mother)

This narrative captures the gradual erosion of emotional intimacy, highlighting how relationship quality often deteriorates even before the additional challenges of autism parenting emerge. The autism diagnosis frequently accelerates these existing patterns of emotional distance, as illustrated by another participant:

My husband also treated me like this. After we learned about autism, my husband officially disappeared. I mean, I didn't know whether I should understand his situation with that shock or start treatment and education. And doctors told us that the earlier you start, the better the training will be. (female, 36, mother)

The impact on physical and emotional intimacy represents another significant dimension of relationship transformation. Couples often describe a profound shift in their intimate connection, as exemplified by one participant's experience: “My husband started to run away from me and the child. We kind of turned into two strangers like that. I mean, it's like I've lived with someone else for so many years” (female, 35, mother). This account illustrates how emotional distance manifests in physical separation, creating a sense of living parallel lives rather than maintaining an intimate partnership. The metaphor of becoming “strangers” powerfully captures the depth of disconnection that can develop over time, suggesting a complete transformation in the nature of marital intimacy.

This theme ultimately reveals how the trajectory of intimate relationships in families who have autistic children often follows a pattern of gradual emotional and physical distancing, marked by distinct phases of change. Understanding these relationship trajectories provides crucial insight into potential intervention points for supporting couple relationships throughout their autism parenting journey, particularly in maintaining and rebuilding intimate connections during critical transition periods.

3.2 Shattered Dreams and New Realities: Confronting Expectations in Autism Parenting

This theme explores the profound psychological journey parents undergo as they confront the disparity between their pre-diagnosis dreams and post-diagnosis realities. It examines how parents process the loss of anticipated experiences and navigate the reconstruction of new family narratives and expectations.

Parents often experience a profound sense of loss as they confront the gap between their imagined future and their new reality. This psychological adjustment process frequently begins with an acute awareness of specific dreams that must be modified or abandoned. One parent described this realization:

We had a lot of dreams, let's go to the camps, stay in the tent, etc. But it was all a lie. My wife also forgot everything, as if we hadn't talked that much, and gave up everything. So, it is not even clear whether we are married or not. If I had known that in the face of such difficulty, she would give up and withdraw into herself, I really would not have married. (male, 41, father)

This narrative reveals how the shattering of anticipated experiences extends beyond simply adjusting plans, profoundly affecting parents' fundamental understanding of their family identity. The characterization of these dreams becoming “a lie” suggests a deep psychological rupture in how parents view their family's future.

The process of confronting and grieving these lost expectations often manifests differently between partners, creating additional relationship strain. This becomes particularly evident in how parents process their child's developmental trajectory, as illustrated by one participant's observation: “I know why she is doing this, her problem is to compete with other children or with mothers and fathers, to compete with herself, to make the child race. So, she wants our child to be like other children. But our child will not be like them, she could not accept it” (male, 32, father). This account highlights the psychological challenge of accepting a different developmental path for their child. The contrast between accepting new realities and holding onto previous expectations creates internal cognitive dissonance that each parent must navigate individually.

The psychological process of adjusting expectations extends to parents' fundamental understanding of their role and identity as parents. Many describe a complete reconceptualization of what it means to be a parent and what constitutes family success. This reconstruction of parental identity and family narratives emerges as a critical component of psychological adaptation to their new reality.

This theme illuminates the complex psychological journey parents undergo as they reconstruct their understanding of family life and parental identity. The process of accepting and integrating new realities into their psychological framework emerges as a critical factor in determining individual adjustment and family adaptation.

3.3 Divergent Paths: Negotiating Parenting Approaches in Autism Families

This theme focuses on how differences in parenting perspectives, rooted in societal expectations and traditional gender roles, create tension and shape caregiving dynamics within families raising children on the autism spectrum. It also highlights how parents negotiate these differences through conflict resolution strategies and shared responsibilities, emphasizing the transformative impact of rejecting rigid roles in favor of mutual support.

Differences in parenting perspectives emerge as a significant source of tension within couples. These divergent viewpoints often reflect broader societal pressures and internalized gender roles. For example, one mother described the contrast between her long-term concerns for her child's well-being and her husband's struggle with societal expectations of masculinity:

We couldn't believe it, so I was devastated, my husband was also devastated, but I think his problem was different. In other words, he couldn't say I am a man who has a boy, he couldn't go to the football match by holding his hand, it was his problem because people would say that this boy had a disability. But I always thought about this child's life and future, who will care for him after us, how my child will earn money, what he will eat and drink and how he will grow up. (female, 38, mother)

This passage highlights the mother's focus on practical and long-term considerations for her child's future, while the father's concerns center on societal perceptions and his identity as a father. These differing priorities often lead to emotional dissonance, creating tension within the relationship.

Gender roles in caregiving further exacerbate these challenges. Traditional societal expectations often place a disproportionate burden on mothers, leaving fathers struggling to redefine their roles. One participant shared how these dynamics led to significant marital strain:

How many times have we talked about divorce? Divorce is already in our mouths. After the fight, we stop and talk about divorce. Then we say, it is bad for our child, let's not get divorce. So, it's like we're not married anyway. We don't even sleep in the same bed, just rarely, so I don't know when was the last time we slept together. My husband sometimes hates me as if I was the only one who brought this situation. We don't really talk or share anything. (female, 36, mother)

In contrast, some couples adopt effective conflict resolution strategies by consciously rejecting traditional gender roles and fostering egalitarian approaches to parenting. For instance, one father emphasized his commitment to shared responsibilities:

I love my wife too much and I care about gender equality. I also work in the field of human rights. That's why I never acted like she was a woman, and I was like a man. We do many things together in our marriage. I try to be very sensitive about it. Even my wife surprises me. For example, she did not want to work after the child, I said absolutely not, you should definitely work. Housework, cooking, kitchen we act together in everything. (male, 36, father)

This narrative demonstrates how some couples proactively address potential conflicts by fostering mutual respect and shared responsibilities. By challenging societal norms and traditional gender roles, these parents create a more balanced and supportive family dynamic.

Ultimately, this theme highlights the significance of shared responsibilities and open communication in managing the unique challenges of caregiving. While traditional gender expectations and divergent priorities can create significant strain, families that adopt flexible approaches demonstrate the potential for relational harmony and resilience.

3.4 Navigating Personal Agency: Individual Choices in Collective Family Contexts

This theme explores the tension between individual agency and familial or societal expectations in Türkiye and examines how personal decisions, particularly about marriage, childbearing, and social life, are shaped by cultural norms and collective pressures.

Participants often described marriage as a critical juncture where personal autonomy collided with family expectations. For some, marriage was less a personal choice and more an obligation to fulfill familial and societal norms. One participant shared: “Frankly, I got married because of my family. I mean, all my older siblings got married. I was 30 years old, too, and I got married when my family put a lot of pressure on me. Ours was a little arranged” (male, 32, father).

This account reveals how individual hesitations are overridden by collective expectations, emphasizing marriage as a social obligation rather than a personal milestone. Similarly, decisions about childbearing reflect a complex interplay between personal ambivalence and external pressures. One mother reflected:

[…] neither of us were that child-loving. But we suppose that our marriage gets a little colorful and everyone was asking when you're going to have a child or something. My husband's family was also putting a lot of pressure on us because they wanted grandchildren. We did it and that's how it happened. So now they blame me and I blame them. Maybe we wouldn't have had children if they hadn't put so much pressure on us. (female, 36, mother)

This narrative highlight how externally driven decisions can lead to blame and resentment, especially when compounded by the challenges of raising an autistic children.

The theme extends beyond marriage and childbearing to social interactions, revealing how external judgments drive families toward isolation. For instance, one father shared how societal pressures influenced their social dynamics:

Our friends also left us very lonely. So for example, they would come home, many questions, what happened, why did it happen, etc. Always looking with such shameful eyes or pitying eyes. Or that's how our parents behaved. Then I said to my wife that your mother, father or your friends should not come to us again, she said so to mine, we looked at it and we were the only ones left. (male, 36, father)

This narrative highlight how social isolation becomes a coping mechanism, a way of protecting oneself from judgmental external perspectives. The participant's choice to limit social interactions represents a form of reclaiming autonomy in response to overwhelming social pressures.

The complexity intensifies when spouses develop divergent approaches to social engagement.

Frankly, I live like a single person, so we go out of work from time to time and sit with my friends, etc. We do not spend much time with my wife. We go out once a month or something. Anyway, she doesn't want it too much because of the child's situation. And I looked, there's no point in forcing it when she doesn't want to, I'm just hanging out without her. (male, 35, father)

This account reveals how individual autonomy can create further relational strain, with each spouse making independent choices that potentially distanced them from each other.

In summary, this theme describes the ongoing negotiation between individual desires and collective expectations. Participants described how personal choices related to marriage, childbearing, and social life were shaped by family expectations and broader social pressures.

3.5 Transformative Meaning-Making: Emotional Resilience and Psychological Adaptation

The process of adaptation and acceptance for parents raising children on the autism spectrum unfolds as a deeply personal, non-linear journey. It is marked by an interplay of emotional transformation, coping mechanisms, and meaning-making strategies that parents employ as they confront and navigate the challenges of their child's neurodevelopmental condition.

The initial phase following a diagnosis is often characterized by shock, disbelief, and an overwhelming quest for answers. One father described this process:

It's been very difficult. So we haven't understood for a long time what that is. Then we tried everything. We went to other doctors, because our doctor looked wrong. We went to the teachers or something, that is, we went everywhere. Then you just accept it after a while. Because the child grows and as the child grows, you see that there is a difference. (male, 36, father)

This narrative highlights how the diagnostic process often triggers a relentless search for validation, reflecting a parental struggle to reconcile professional assessments with personal perceptions of their child.

Emotional transformation is another critical dimension of this journey. Parents described the intense emotional toll of grappling with the reality of their child's condition. One father shared:

My wife did not accept the situation at first, neither did I. So we were shocked when they first told us. In fact, my wife almost attacked the doctor or something. Then we researched and looked and finally accepted the situation. I can not say it was easy for us, the acceptance process. How can I say, I do not know but it was tough, desperate. (male, 35, father)

This passage highlights the profound challenges of moving from denial and frustration to eventual acceptance, revealing the depth of emotional labor required in coming to terms with their new reality.

Blame dynamics often complicate this adaptation process, with parents struggling to assign or deflect responsibility for their child's condition. A father expressed lingering resentment and self-doubt:

I blamed [wife] thoroughly. So it was very difficult for me to accept. And then, what will happen to this child, we started to worry for the child. So how far is autism until death. It's not something that changes. For years, my anger did not end with my wife. I still think the same sometimes. […] So it's genetic, after all. Of course, maybe it's because of me, I don't know, but it's unlikely. (male, 41, father)

This narrative reveals how blame, often gendered and rooted in cultural expectations, creates additional layers of emotional strain within families.

With these challenges, strategies for resilience and meaning-making emerge as pivotal in fostering psychological adaptation. For many, peer support became an essential lifeline. A mother described the transformative power of these connections:

Finding them felt so much better to me. I mean, we became like family with them, we all went through the same things, we went through the same roads. Here, when one of us needed help, the other helped immediately. When one of us cried and felt bad, we consoled others, so we created a support group ourselves. (female, 38, mother)

This quote captures how collective solidarity and shared experiences foster resilience and provide a sense of belonging, mitigating feelings of isolation.

In addition to peer support, religious and spiritual frameworks offered significant emotional solace for many participants. Reflecting on his coping mechanisms, one father shared: “As I mentioned before, belief in Allah is our biggest supporter. I mean, sometimes you question why it happened to us, but even in such cases, I call it God's test for us, frankly, we feel more relaxed. Other than that, there isn't much support” (male, 39, father). This narrative highlights the centrality of faith as a source of strength and meaning, providing participants with a framework to process their experiences and find a sense of peace amidst uncertainty.

The journey of adaptation and meaning-making for these parents is not linear but marked by cycles of grief, acceptance, and resilience. By drawing on diverse coping mechanisms such as peer support, emotional processing, and reframing their experiences, parents construct new narratives that help them navigate the complexities of raising an autistic children. The experiences reflected in this theme highlight the profound emotional transformations that occur as parents reconcile the realities of their child's condition with their hopes and expectations, illustrating the central role of resilience and meaning-making in this journey.

4 Discussion

This study explored how parental experiences, marital dynamics, and gender roles influence the process of adapting to an autism diagnosis within the cultural context of Türkiye. Grounded in Structural Family Theory, our findings offer a nuanced understanding of the emotional, psychological, and relational adjustments couples undergo. The five emergent themes illuminate how disruptions in intimacy, evolving parental roles, and meaning-making efforts are shaped by culturally specific expectations, particularly related to gender norms, family honor, and collective obligation. While some patterns reflect universal challenges faced by parents of autistic children, their expression in Türkiye reveals distinct pressures and relational dynamics often underrepresented in Western-centric literature.

4.1 Universal Patterns Amplified by Cultural Context

Our findings reveal that while certain adaptation patterns appear across cultures, Turkish cultural norms serve as powerful amplifiers that intensify these universal experiences, creating distinct challenges for families navigating autism. While some of the patterns identified in this study are framed within the Turkish context, it is important to note that similar dynamics may also be observed in other collectivist or Muslim-majority societies. Therefore, rather than viewing these findings as uniquely Turkish, they may be better understood as culturally amplified expressions of broader family processes shaped by collectivist norms, gender expectations, and social structures.

4.1.1 Intimate Disruptions: Cultural Magnification of Universal Patterns

The deterioration of marital intimacy following an autism diagnosis represents a well-documented global phenomenon (Hayes and Watson 2013; Hartley et al. 2017). However, our study reveals how Turkish gender norms significantly amplify this pattern. Previous research in Türkiye has found that men tend to show less emotional engagement after marriage, reflecting traditional masculine norms that deprioritize emotional intimacy (Akyazı et al. 2022). Our findings extend this understanding by demonstrating how these pre-existing relational dynamics become further entrenched following an autism diagnosis.

Specifically, Turkish research has documented emotional distancing between spouses following autism diagnosis (Tümlü and Akdoğan 2019), confirming that this global pattern manifests distinctly within Turkish cultural contexts. The metaphor of becoming “strangers” used by participants reflects more than typical marital strain and represents a culturally specific withdrawal pattern in which Turkish masculinity norms discourage emotional vulnerability and make recovery from the initial shock particularly difficult. While fathers globally may struggle with autism acceptance, Turkish fathers face the additional burden of maintaining social face within communities where disability can be viewed as family failure (Çopuroğlu and Mengi 2014). This cultural overlay transforms what might be temporary adjustment difficulties into more persistent patterns of emotional distancing.

4.1.2 Shattered Expectations: Cultural Ideals of Perfect Parenthood

The process of adjusting parental expectations also reflects deeply embedded cultural gender ideals. In Türkiye, having a son is often regarded as a source of pride and considered a reflection of masculine success (Tugrul 2019). Fathers in our study struggled to reconcile these cultural expectations with their child's diagnosis, sometimes avoiding being seen with their children in public to preserve social standing. This represents a culturally specific manifestation of the universal challenge of accepting developmental differences.

Similarly, mothers grappled with the disruption of the “perfect mother” ideal prevalent in Turkish society, where motherhood is closely monitored and judged. Research has documented how Turkish mothers often engage in competitive mothering dynamics, creating environments where being a “perfect mother” and raising the “best child” becomes a core measure of success (Özkan and Özer 2022). When a child receives an autism diagnosis, this idealized image of motherhood is disrupted, with mothers often internalizing the diagnosis as a personal failure and viewing it as a shortcoming in relation to societal ideals of womanhood (Ceylan 2023). The intensity of maternal self-blame observed in our study reflects not only personal disappointment but also fear of social judgment within communities where maternal responsibility for child outcomes is heavily emphasized. These cultural ideals of parenthood significantly shape how Turkish mothers and fathers process and respond to an autism diagnosis, creating additional layers of grief beyond the universal experience of lost expectations.

4.2 Culturally-Specific Amplifying Factors

Several distinct cultural dynamics emerged as primary intensifiers of universal adaptation challenges, creating unique barriers and resources for Turkish families.

4.2.1 Marriage and Childbearing as Collective Obligation

A particularly striking finding was how male participants often blamed both their wives and their own parents for their child's autism, viewing it as a consequence of being pressured into marriage and parenthood. This reflects the collectivist Turkish culture where marriage and childbearing are viewed as family obligations rather than personal choices (Yıldız and Poyraz 2020). Unlike Western contexts where couples typically choose each other and decide on children independently, the family and community involvement in these decisions in Türkiye creates additional targets for blame and resentment when outcomes differ from expectations.

This cultural pattern of collective decision-making paradoxically led to increased isolation when challenges arose. Despite eventually accepting their child, some fathers' resentment toward their wives persisted, highlighting how cultural pressure around marriage and childbearing complicates family adaptation in ways rarely addressed in Western literature on autism families.

4.2.2 Social Isolation and Community Withdrawal

Social isolation emerged as another culturally specific challenge, with parents describing how friends and extended family gradually withdrew support, often preventing their children from interacting with the autistic child. This isolation reflects the broader stigma surrounding autism in Türkiye, where developmental differences are sometimes viewed as contagious or shameful (Çopuroğlu and Mengi 2014; Güran 2020).

While social isolation among autism families is documented globally (Ault et al. 2021; Marsack and Perry 2018; Mazumder and Thompson-Hodgetts 2019), the Turkish experience appears particularly pronounced. Research shows that many parents view autism as something contagious and actively prevent their children from associating with autistic children (Chan et al. 2023). Importantly, this contradicts the typical assumption that collectivist cultures provide stronger family support networks (Ben et al. 2021; Triandis 1995). Previous research has documented how collectivist societies can provide robust family support systems during times of crisis (Hansford and Jobson 2022), yet our findings reveal a more complex reality. When autism challenges cultural notions of family honor and social acceptability, even traditionally supportive extended networks may become sources of additional stress rather than comfort (Çetin et al. 2020; Yang et al. 2007).

4.2.3 Religious Coping as Cultural Resource

In response to these challenges, parents developed distinctive coping mechanisms shaped by Islamic frameworks. Religious interpretation of autism as a divine test provided significant comfort for many participants, offering a meaning-making system that preserved parental dignity while accepting their child's differences. This finding aligns with extensive research on religious coping among Turkish families, where faith-based support is commonly sought during difficult times (Duran 2024; Küçükdereli and Akgül 2023). This represents a culturally specific resilience resource that differs markedly from secular coping strategies emphasized in Western literature. The integration of religious beliefs with practical caregiving approaches highlights the importance of culturally embedded coping mechanisms in family adaptation, supporting broader research on the protective effects of religious coping in Muslim populations (Bantali and Athar 2025; Mohamad et al. 2019; Tiliouine and Belgoumidi 2009).

4.3 Gendered Subsystem Dynamics Through Structural Family Theory

Our analysis through Structural Family Theory reveals how cultural gender expectations create distinct relational subsystems within Turkish autism families, fundamentally altering family functioning patterns.

4.3.1 Formation of Rigid Gender-Based Subsystems

The gendered responses to autism diagnosis created what Minuchin (2018) would describe as rigid subsystem boundaries (Gladding 2012). Mothers operated within an emotional caregiving subsystem characterized by intensive daily management, therapeutic coordination, and emotional labor. Meanwhile, fathers retreated into a detached provider subsystem focused on financial responsibilities while maintaining emotional distance from both child and spouse. These subsystems functioned with minimal communication across boundaries, creating parallel rather than integrated family functioning.

This subsystem rigidity was intensified by Turkish cultural norms that assign distinct gender roles within families (Duru and Duyan 2017; Gürmen and Kılıç 2022). Unlike more egalitarian contexts where parents might gradually negotiate shared responsibilities, the cultural prescription of gender roles in Türkiye created expectations that mothers would naturally assume caregiving burdens while fathers maintained breadwinner status. When autism caregiving demands exceeded traditional role boundaries, families struggled to reorganize effectively.

4.3.2 Disrupted Spousal Subsystem Functioning

The spousal subsystem, which is critical for overall family stability according to Structural Family Theory, became particularly vulnerable under these conditions. Cultural expectations that spouses would fulfill traditional complementary roles were disrupted by autism's demands, but without cultural scripts for alternative arrangements. Fathers' emotional withdrawal and mothers' caregiving intensity created what participants described as “living like strangers,” representing a fundamental breakdown in spousal connection. This finding aligns with research showing that marital satisfaction often declines when couples cannot adequately negotiate caregiving responsibilities for children with disabilities (Brown et al. 2020; Hartley et al. 2010). The pattern of maternal role overload and paternal disengagement has been documented across cultures but appears particularly pronounced in traditional gender role contexts (Flippin and Crais 2011; Lomazzi et al. 2018).

Importantly, couples who challenged traditional gender expectations demonstrated more successful spousal subsystem maintenance. These families actively negotiated new role arrangements, with fathers increasing emotional engagement and mothers maintaining some independence from total caregiving responsibility. This suggests that subsystem flexibility, rather than adherence to cultural gender norms, predicts better family adaptation outcomes.

4.3.3 System-Wide Adaptation Patterns

The interaction between cultural pressures and gendered subsystems created distinct family system adaptation patterns. Families maintaining rigid gender roles showed persistent dysfunction characterized by emotional distance, blame dynamics, and parallel rather than integrated functioning. In contrast, families that developed flexible subsystem boundaries, often in direct contradiction to cultural expectations, demonstrated greater resilience and marital satisfaction.

This finding has important theoretical implications for Structural Family Theory application in non-Western contexts. While the theory's emphasis on clear boundaries and appropriate hierarchy remains relevant, our study suggests that cultural definitions of “appropriate” family structure may sometimes impede rather than support healthy functioning when families face significant stressors like autism. This extends previous critiques of family therapy theories for potential cultural bias and supports calls for culturally adapted applications of structural approaches (Kumpfer et al. 2017).

5 Implications for Culturally Responsive Practice

Our findings highlight the need for intervention approaches that acknowledge both universal family adaptation challenges and culturally specific amplifying factors. For Turkish families specifically, interventions must address how cultural gender role expectations intensify universal challenges of autism family adaptation. Rather than requiring families to abandon cultural values, therapeutic approaches should help families develop flexible adaptations within their cultural framework–maintaining valued traditions while modifying specific practices that may hinder autism support (Doyumğaç et al. 2026).

Practically, this suggests that couples counseling should address not only emotional distancing but also how rigid gender roles contribute to family stress (Lebow and Snyder 2022). Community-based programs should work within Islamic frameworks to reduce autism stigma and promote acceptance, while family therapy interventions should help parents negotiate new role arrangements while preserving cultural identity (Ellen Selman et al. 2018). Social support systems should leverage the success of peer networks among autism parents, which our findings show can be particularly effective in collectivist contexts.

The therapeutic goal becomes helping families achieve what might be termed “selective cultural adaptation,” maintaining valued cultural connections while developing the flexibility needed to support their autistic child effectively. This approach recognizes that successful family adaptation does not require cultural abandonment, but rather thoughtful negotiation between cultural values and adaptive family functioning.

6 Limitations and Future Directions

This study's focus on intact couples in Türkiye may not represent experiences of divorced parents, single parents, or families in rural areas where cultural pressures and support systems may differ significantly. Future research should explore how these dynamics manifest across diverse family structures and geographic contexts within Türkiye. Additionally, while our findings highlight the importance of cultural context in family adaptation, longitudinal research is needed to understand how these dynamics evolve over time and what factors predict successful long-term adjustment. Although the age range of the children in this study varied, we did not specifically examine how differences across developmental stages may shape parental and marital experiences. Given that prior research suggests that family stress and dynamics can differ significantly depending on the child's age, future research should explore these developmental differences more explicitly. Furthermore, although participants represented a range of socioeconomic and educational backgrounds, the present study was not designed to systematically examine differences across these characteristics. Future research should investigate how socioeconomic status, educational attainment, and related structural factors intersect with cultural and gendered expectations to shape parental involvement, family adaptation, and couple relationships.

7 Conclusion

This study reveals how universal challenges of autism family adaptation are profoundly shaped by cultural context, creating distinct patterns of stress and resilience within Turkish families. While intimate disruptions, expectation adjustments, and basic adaptation processes occur globally, their expression in Türkiye is intensified by gender role rigidity, family honor concerns, and collective obligation pressures. Through Structural Family Theory, we see how these cultural factors create gendered subsystems that can either impede or support family functioning, depending on their flexibility in adapting to support their autistic family member's needs. The capacity to maintain cultural identity while adapting family structures emerges as crucial for successful adjustment. Families who developed flexible approaches to gender roles and parenting responsibilities demonstrated greater resilience, suggesting that culturally responsive interventions should focus on supporting adaptive flexibility rather than cultural abandonment. These findings contribute to a more comprehensive understanding of autism family dynamics beyond Western contexts and highlight the importance of cultural considerations in both research and clinical practice with diverse populations.