Introduction

In recent years, the field of autism studies has experienced considerable growth and undergone a remarkable transformation. While autism was once primarily viewed as a deficit or disorder characterized by social and communication impairments, a paradigm shift is currently in progress1. The emergence of alternative perspectives has shifted the prevailing model of autism towards a more nuanced and inclusive framework2,3,4,5,6.

Central to this evolution is the emergence of Disability Studies, which offers a critical lens through which to examine the experiences of individuals within the autism spectrum and their caregivers. Disability Studies not only challenges traditional medical models of autism but also provides a broader understanding of disability as a social construct shaped by cultural, political, and historical contexts.

Despite this growth and transformation, there remains a noticeable gap in the literature concerning the unique intersection of feminism, critical studies, and disability studies. As dominant discourses simultaneously impose limits and controls on gender7, strengthening critical autism research would involve a deeper and more active integration of feminist theoretical perspectives into its conceptual framework8.

This intersection between Disability Studies and feminist perspectives offers a rich terrain for exploration, illuminating how gendered norms and power dynamics shape the experiences of caregivers and individuals within the autism spectrum.

That is why this research aims to combine a critical studies approach and feminist theories to examine the experiences of mothers raising a child on the autism spectrum in Iran.

Raising a child on the autism spectrum can be challenging for parents and caregivers due to various factors. These include specific autistic characteristics, challenges in partner relationships, emotional stress and strain, mental health issues, financial constraints, limited access to healthcare, difficulties in maintaining social relationships, stigma, and normative expectations9,10,11,12,13,14,15,16,17.

Considering that caregiving is still mainly in the domain of women’s roles18, a significant portion of responsibilities disproportionately affects women19,20,21. A study investigated gender differences in long-term caregiving for family members with Autism. The results indicated that women took on a central role in coordinating care and overseeing daily routines. Furthermore, women reported a heightened sense of caregiving responsibilities compared to men22. In fact, the perception of caregiving as a self-affirming role is likely more prevalent among women than men. Women therefore contribute a very large proportion of society’s caregiving23, but may be harmfully confined and disadvantaged by this role24.

A study in The United States employed a narrative approach to investigate the challenges faced by black single female caregivers and the factors influencing their disparities. The results indicate that a complex interplay of race, gender, and social class come together to establish obstacles in accessing adequate care25.

A study conducted in Nepal examined the challenges faced by mothers raising children with autism. The findings revealed that these mothers encountered various difficulties in their lives. They experienced physical exhaustion from continuously supervising their child, and also dealt with emotional issues like denial, sadness, and worry. Social problems, including blame, isolation, and ignorance from relatives and society, arose19.

In a longitudinal study conducted in San Francisco involving 90 mothers of children with autism, the findings showed that caregivers who experienced increasing levels of self-blame and despair about the diagnosis over an 18-month period had a deterioration in their mental health and life satisfaction during that time26.

In Iran, it is expected that, due to prevailing gender roles, cultural norms, the acceptance of a well-established patriarchal system, as well as factors related to religion, economic pressures, and other relevant considerations, women raising a child on the autism spectrum may experience unique challenges distinct from those in other countries.

Findings from a study conducted in Iran indicated that the prevalence of autism spectrum disorder was 0.96% among boys and 0.13% among girls27. In 2018, a qualitative study was conducted with 18 Iranian mothers raising disabled children. The findings revealed four main themes: “Emotions, Negative Reactions, and Helplessness of Mothers,” “Concerns about the Child’s Future,” “Societal Stigma,” and “Mothers’ Suffering and Anxiety Due to Lack of Specialized and Financial Support.”28

Research in Iran indicates that mothers of autistic children experience significantly lower levels of quality and enjoyment in their daily activities29. Additionally, there is a high prevalence of perceived needs and unmet needs among these mothers30.

None of these studies were conducted with a feminist and gender-focused perspective. The studies that have been conducted on mothers are frequently quantitative and rely on prevailing medical paradigms, often overlooking the examination of the subject through the lens of patriarchy, cultural norms, gender roles, socio-cultural factors, and intersectionality.

Consequently, the experiences, needs, and challenges faced by these mothers have not been adequately addressed or understood. The complexities of autism caregiving often compound the demands of traditional gender roles and societal expectations, placing these mothers in a unique and challenging position.

In order to provide a more accurate depiction of the challenges faced by mothers of children on the autism spectrum in Iran, research should adopt a feminist critical perspective. Taking a critical feminist lens will offer a more comprehensive understanding of the challenges and needs experienced by these mothers in Iran. By acknowledging and analyzing these concepts, Researchers can ultimately explore the unique struggles these women face and advocate for more inclusive policies and support systems.

In this study, in order to explore the experiences of mothers raising a child on the autism spectrum, a feminist theoretical lens was necessary. While feminist theories manifest in various forms, they all share two overarching objectives. Firstly, they endeavor to unearth both blatant and subtle gender inequality. Secondly, their orientation is towards catalyzing change, with the aim of reducing or eradicating these imbalances31.

Feminist research, by analyzing gender discrepancies, examines the unique hurdles and discrimination faced by women across various aspects of life. This method not only increases knowledge of women’s concerns but also aids in the creation of policies and initiatives to address and correct these inequalities, fostering social change and promoting a more just and inclusive society for all people.

However, a more comprehensive approach was essential to achieve a complete understanding of the experiences of mothers raising a child on the autism spectrum. We aimed to probe deeply not only into gender dynamics but also to explore how intersecting factors, including systematic issues, class, and social structure, interact to shape the challenges and experiences of these women. Critical feminist theory provides this comprehensive lens. It is a synthesis of both Critical theory and feminist theory, with a central emphasis on gender analysis. Additionally, it strives to challenge the established distributions of power within society or social structures32.

While feminist theory aligns with critical social theory in some ways, it primarily focuses on addressing the unequal conditions experienced by women and gender inequities33. On the other hand, critical theory takes a broader perspective, analyzing the unequal power dynamics within society that result in the oppression of various marginalized groups beyond just women34.

Critical feminist analysis explores four primary threads, gender, oppression/patriarchy, social institutions, and systemic change35, as we employ these concepts to discuss the experiences of mothers raising children on the autism spectrum.

Critical feminist ontology emphasizes the complex interplay of personal, social, and structural factors that shape people’s experiences. These dimensions can intersect and create oppression, marginalization, stigmatization, and health inequities36. Concerning health, critical theory aims to empower individuals to take control of factors that jeopardize their well-being and overall health34.

The majority of research conducted by feminists draws heavily from lived experiences, particularly those of women. This research does not originate from a singular, cohesive ideology or standpoint. Nevertheless, feminist perspectives do converge on shared notions. These shared notions suggest that feminist research explore the marginalization of women in social and political spheres37.

While some research has employed critical feminist theory to gain insights into women’s experiences38,39, the existing research on the experiences of parents of children with disabilities in Iran has mostly not utilized theoretical frameworks, or the frameworks used have neglected to consider gender.

This research sets its course through the lens of Critical Feminist Analysis, embracing a multifaceted approach that uncovers the intricate dynamics between gender, caregiving roles, disability, and societal structures. Through this lens, the experiences of these women emerge as powerful narratives, challenging conventional norms and contributing to a more inclusive and empathetic understanding of autism parenting.

Results

Sample Demographics

In this study, 10 mothers with an average age of 36.6 years participated. Three of them were single and seven were married. The demographic characteristics of the participants are shown in Table 1.

Table 1 Demographic details of participants

Themes from Interviews

After analyzing the results, two distinct themes were constructed:

The first theme, entitled “In Interaction with the World Outside,” focuses on the experiences and issues of mothers as they engage with others and society.

The second theme, named “In Interaction with the Self,” probes the personal journeys and introspective experiences of mothers in relation to themselves (Fig. 1).

Fig. 1: Themes and subthemes.
figure 1

The first level of the pie chart shows themes, while the second level shows subthemes. The size of each slice represents the frequency of codes in the interviews.

Interactions with the World Outside

The theme ‘In Interaction with the World Outside’ explores the impacts of autism on mothers’ social interaction. Its sub-themes include narratives from society, and becoming an activist.

The mothers interviewed expressed a consensus that there is insufficient public understanding and awareness surrounding the autism spectrum. Due to this widespread lack of knowledge, members of the community often form misguided judgments about mothers. These judgments result in hurtful actions like teasing or bullying the child. They also involve blaming mothers by suggesting their mistakes have led God to give them a child on the autism spectrum. Additionally, these judgments entail criticizing mothers’ approaches to raising their children. The interviewees agreed these judgmental attitudes stem directly from poor public awareness and knowledge of autism. Kimia explains,

“Some people told me it was my fault and that I must have done something wrong and that God is punishing me and some others also say that you did not fulfill your motherly duty properly and did not raise the child well.”

Ariana relates that in public places, when his child screams, those who do not know about autism ask her to teach child how to behave.

These aggressive and uninformed reactions elevate the fear of stigma and can isolate parents further. Homa reports,

“Since no one understands our situation, we limit our outdoor activities. My child is hyperactive, and he has no control over his actions. When we tell people that he is a child on the autism spectrum, they become judgmental and call him ‘retarded.’”

Sara expresses concern that the label of “autism” could ruin her daughter’s future. This label could influence her relationships, including marriage, and she worries that her classmates might unfairly label her as “crazy,” leading to a loss of confidence.

Because of this fear, self-stigma may arise. The stigma experienced by Fariba is so intense that she even said it would be her death day if her child did not go to a mainstream school. She inquires,

“Why cannot my child attend school? He needs caring and patience. Why should he attend a special school? He is better than them. That would kill me.”

Mothers share that they are often confused by the reasons behind some of their children’s behaviors, and these behaviors often lead to blaming. For instance, Maria describes her son’s behavior, saying,

“He loves to watch LG watches. Whenever we visit LG sale centers, he collects their catalogs and wears their watches. He collects over 50 catalogs. Although we bought him a real watch, he loves those watches.”

Kimia reveals,

“He likes razors. Whenever he goes to other people’s bathrooms, he takes their razors.”

Shiva states about her son,

“I believe that my child is an alien. He has a completely different perspective about the earth.”

Shiva’s comment about her child being an alien is a way of expressing her child’s neurodiversity, which is remarkable considering that she lacks any prior knowledge of this concept. It’s fascinating how Shiva can so intuitively grasp the essence of her child’s unique perspective without the benefit of external understanding, highlighting her deep connection and sensitivity towards her child.

Stigma can significantly limit a family’s social interactions. They may not venture outside unless it is an emergency, as crowded places such as hospitals can exacerbate the child’s sensory sensitivities. Mina explained,

“He does not like bustle; if we take him somewhere crowded, he starts yelling. He cannot stay.”

Similarly, Ariana stated,

“He cannot tolerate the crowd, and it’s challenging to take him to the hospital.”

Despite facing these challenges and considering the sensitivities of their children, mothers actively engage in advocating for their children and finding alternative paths.

Bita says,

“I try to explain my girl’s situation calmly and inform people that she has autism and may cry. I inform sellers, his barber, and others.”

Shiva expressed frustration at having to constantly explain her child’s behaviors and not wanting others to stare or question her about her child’s differences. She said,

“When we go to the park, he starts running, and everyone asks what is wrong with your child. It’s difficult to respond to them, at least for me.”

Perhaps this is why she preferred to utilize a badge to signify her child’s autism. She said,

“My son has a shirt on the back with ‘autism’ written on it, but people still inquire. Some cannot even read it. We use pixels as well. It would be great if more people knew about it.”

Sara says,

“We are perpetually engaged in a struggle. It’s as though we can’t conduct tasks calmly and normally. We have had to gather multiple times to demand our rights, such as insurance and government services, and exhibit our protests. How much energy do we have left? We should be channeling our energy towards our children, not these kinds of things.”

Zahra also validates this and says:

“I think you know how much we struggle financially and with access to medical services, medication, school, and such things. We have to fight for even fundamental necessities. You might not believe it, but they used to not issue disability license plate to us. They only provided them to fathers, and those who were separated couldn’t get these plates. Later on, with a lot of protest and effort, they also issued plates to mothers.”

Interactions with the Self

The theme ‘In Interaction with the Self’ explores the changes, fears, and hopes of mothers who have undergone transformations and emerged as different individuals. This theme consists of two subthemes: ‘Changes and Sacrifices’ and ‘Fears and Hopes.’

Autism can have a significant impact on mothers’ lives, leading them to make significant sacrifices and experience feelings of isolation. Mothers frequently make notable sacrifices to ensure the well-being of their children. For instance, Fariba stated,

“I used to enjoy studying, but now I cannot even leave the house to go shopping. I have to watch my son.”

Similarly, Bita claimed,

“I have devoted my life to my girl and have been taking care of her for 8 years. I will continue to do so because my child is my top priority. Although I used to spend a lot of time hanging out, that’s no longer a priority for me.”

Some mothers become so engrossed in their child that it becomes their sole focus. Shiva’s experience is a case in point. She said,

“Believe it or not, I cannot understand neurotypical children anymore. I saw my three-year-old nephew playing computer games and using cell phones, and I wondered how and why he was playing with them. A child who plays computer games! It is unbelievable.”

Years of raising a child on the autism spectrum and experiencing social isolation have made it challenging for Shiva to fully embrace the realities of life. Kimia expresses that this situation has intensified her sense of loneliness. She describes it as,

“Autism has made me feel isolated. I often feel like I have autism too.”

Career and educational disruptions are also common challenges, and some mothers may even face the difficult decision of relocating to access specialized support services. Additionally, divorce can be a significant challenge for mothers of children with autism, as it can add to the stress and uncertainty already present in their lives. Bita expressed her situation, saying,

“I have faced many challenges in my life, and some of them have been quite difficult. However, nothing has affected me as profoundly as autism. Autism is an entirely different story.”

Mothers often find it challenging to find time for leisure activities and relaxation.

Maria similarly stated,

“Going to the park, cinema, and shopping becomes a dream in a family.”

Most of the mothers interviewed talked about their exhaustion and mental health issues. Shiva expressed her feelings, saying,

“This kind of pain is exhausting. You are in your 30 s but feel like you are forty.”

Sara says,

“I am always under stress. I do not sleep well, and I always want to watch her. They reduced her medications, and I am afraid her seizures will return. There’s no point in being stressed, but I cannot manage it.”

Maria also shared her experience,

“I am going through emotional trauma. I am getting treatment, but I am exhausted and depressed. Other issues worsen my mental state. We face lots of problems.”

These psychological issues lead to feelings of isolation and loneliness.

Homa had to protect her three children, one of whom has autism, while living far from her city and without much support.

“I need real support at this age, but I am supporting three children, one of whom is on the autism spectrum.”

However, amidst these challenges, there are many hidden strengths and positive changes that can emerge from raising a child on the autism spectrum. Mothers often find themselves developing enhanced patience, empathy, and resilience as they navigate the unique needs of their children. They may also discover new passions and talents, as they seek to understand and support their children’s unique perspectives and abilities.

Maria explained how autism changed her,

“First of all, it had a positive impact on me. I have learned a lot. I am now more grown-up than I was six years ago. I have read many books and have searched for possible problems. Sometimes I even think that maybe I should apply for child psychology.”

Shiva believes that living with his son has made her more patient. She no longer thinks of money and has more empathy for others.

Zahra also thinks that autism has made him less judgmental, and she tries to be more sympathetic.

Bita mentions that her child has been learning an instrument for a while, prompting her to take up the instrument herself and practice alongside her child. This has, to some extent, contributed to an improvement in her mood.

She expresses,

“I believe this has helped me to connect better with my child. When we are together, time flies by, and I feel like we enjoy each other more.”

However, some mothers have lost their faith as well. Kimia said,

“Autism has changed me in a way that I do not believe in God anymore. I do not say my prayers. It has modified my points of view, and I have changed my expectations for my child.”

Many mothers of children with autism express concerns about their children’s long-term care, future, and well-being. They worry about who will care for their child when they are gone and what will happen to them. Kimia expressed her fear, saying,

“I am always scared and worried about his safety. What will happen to him when I am gone? Will he be able to lead a life?”

Similarly, Shiva prays that they will die together because she believes his son’s life after her would be filled with challenges, saying,

“No one can take care of him like I do.”

Some mothers have concerns about their child’s puberty and choose to postpone using medication. Some mothers adjust their expectations for their children’s achievements based on their individual needs and limitations. For example. Homa expressed a desire for her child to reach milestones such as completing school.

Kimia expresses hopes for her child to engage in age-appropriate activities, including sports like football, while also understanding and following basic rules. However, Zahra remains hopeful for her child’s future, believing in the potential of advancements in services and support to help them reach their full potential. She approaches her parenting with positivity and inclusivity, treating her child with the same expectations and opportunities as any other child.

Discussion

The results of this study unveil distinctive experiences encountered by mothers who are raising children on the autism spectrum. Whether a woman is a mother of a child on the autism spectrum or has autism themselves, they are impacted by gender. These effects begin even before the diagnosis of autism, as studies have shown that the male-to-female ratio for autism diagnosis is 6.5 to 127. This disparity is not unique to Iran; it is similar in other countries16.

The theme “In Interaction with the World Outside” probes the complex dynamics surrounding mothers of children on the autism spectrum and their engagement with society. This discussion will critically analyze the identified sub-themes of narratives from society and becoming an activist.

The experiences shared by the mothers of children with autism reveal the pervasive challenges they face due to a lack of awareness and understanding in their communities. This often leads to judgmental attitudes and mistreatment. As primary caregivers, these mothers also grapple with societal expectations that intersect with their roles, amplifying the stigma when their children’s behaviors differ from societal norms.

Social stigma is one of the most unpleasant phenomena affecting these mothers. These mothers often face stereotypes and blame, which can add to their daily challenges40. Stigma significantly impacts mothers’ mental health, and up to 70% of changes in their mental well-being can be predicted using the type of stigma, and it also predicts mothers’ challenges41. A study conducted by Chimeh et al. in Iran revealed that social stigma profoundly affects mothers of children on the autism spectrum. They suggested some programs to raise awareness about autism and improve the public’s understanding of a child on the autism spectrum42. However, many years later, our study shows that these problems persist, and there is no governmental will to increase public awareness of autism in Iran.

Individuals facing stigma, considering factors such as race, gender, or socioeconomic status, might also undergo self-stigmatization and child-stigmatization43. Self-stigmatization is the internalization of public stigma and stereotypes, leading individuals to endorse these negative perceptions. As a result, some mothers reported a belief that sending their child to a mainstream school is preferable to an exceptional children’s school. They had internalized societal stigma and stereotypes associated with autism, leading them to believe that their child would benefit more from attending a mainstream school than an exceptional children’s school.

The self-stigmatizing process can be described through a three-phase model. First, negative beliefs and stereotypes about a particular condition exist. Second, the person with that condition accepts and internalizes those beliefs and stereotypes. Finally, they act in ways that can be harmful and lead to health problems44. Societal attitudes towards individuals with disabilities, including autism, can be occasionally negative and stigmatizing45. Therefore, a child attending an exceptional children’s school may be affected by this attitude. Individuals, such as Fariba, had internalized this public attitude and tried to prevent it and relating this issue to life and death can result in mental health problems.

Research shows that autism-related stigma affects mothers more than fathers46. Societal expectations and stereotypes surrounding women, as well as traditional gender roles, can contribute to the experience of self-stigma. When women diverge from the expected roles of caregivers, homemakers, or nurturers, they may encounter criticism and judgment, ultimately resulting in self-stigmatization.

In addition, the tendency to blame mothers for their child’s autism is rooted in the prevailing societal perception that mothers are responsible for giving birth to and raising their children. Therefore, if something goes wrong, it is often attributed to the mother, reminiscent of the early 20th century when mothers were held accountable for high rates of children’s death47. Notably, mothers’ blame can be intertwined with systemic issues and social institutions. These criticisms often lead to feelings of guilt, which, in turn, prompt mothers to excessively focus on their own behaviors and parenting practices rather than addressing the oppressive circumstances they may be facing48.

The stories of mothers being blamed for their child’s condition and subjected to hurtful comments highlight the gendered dimension of stigma. This reflects a patriarchal construct that places undue burden on women’s shoulders. Patriarchy has indeed played a significant role in shaping and perpetuating gender roles49. However, individuals also possess the capacity to exert influence on power dynamics, much like social institutions50. The prevailing expectation of fully committing to being a “professional” autism parent is deeply influenced by a long-standing discourse of unfairly placing blame on mothers, which has been consistently intertwined throughout the history of autism, even prior to the formal recognition and definition of the autism51. Autism is a complex and multifaceted phenomenon that cannot be understood without taking into account cultural context52.

Mother-blaming is a recognized and widespread issue characterized by the unfair attribution of responsibility to mothers for the actions, behavior, health, and well-being of their children, even in adulthood. this phenomenon has been emphasized and confirmed in other studies as well53. It also encompasses situations where women are unfairly held responsible for certain circumstances. For instance, individuals often tend to assign blame to mothers in cases involving child sexual abuse54. Other studies have also reported stigma towards mothers with a child on the autism spectrum. In Kenya, for instance, mothers were blamed for their children’s behavior and accused of being careless55.

The sub-theme of becoming an activist among these mothers is a testament to their resilience and determination to create change. The transformation of mothers into activists underscores the convergence of the personal and the systemic, echoing the feminist concept of ‘ the personal is political'56. This phrase coined during the feminist movement of the late 1960s and early 1970s. It encapsulates a central idea in feminist theory, emphasizing that personal experiences and individual struggles are interconnected with larger societal and political structures. In this context, Nancy Hartsock suggests that personal experiences, such as the struggles faced by mothers, are intertwined with larger socio-political structures57.

Mothers are not only advocating for their individual children but also striving for broader changes in societal attitudes and policies. Their actions challenge the gendered expectation that mothers should remain silent and submissive in the face of adversity. Instead, they are reclaiming their voices and asserting their rights as mothers and as women.

Blum perceives social systems (such as institutions, bureaucracy, or societal norms) as drivers that prompt mothers to embark on this path. Although these systems are designed to support families dealing with disabilities, they are portrayed as obstacles that mothers must overcome to ensure a better life for their children58. It shows governments and social welfare systems have a significant impact on the lives of autistic people and examining the impacts of state provision and the economics of support/welfare is key in critical studies59. Most of the study participants were from middle- or lower-income backgrounds. From a systematic perspective, it is observed that socioeconomic marginalization, stemming from the intersection of gender, class, and disability, leads to compounded forms of discrimination and disadvantage among these women. Intersectionality is important for understanding the experiences of autistic people, as they may also experience other forms of oppression such as racism and sexism5.

Mothers of individuals with disabilities frequently engage in the public sphere, taking on roles such as interpreters, translators, advocates, and activists for their loved ones60. Interview with twenty-one women showed that these women were enthusiastically involved in creating educational initiatives, establishing support groups for parents, and providing training to professionals in healthcare, education, and social services. These seemingly ordinary caregiving duties took on a political dimension as the women sought help and services for their children with disabilities and their families61.

Amy C. Sousa mentions a study in her article in which the mothers who were battling societal forces and systemic issues that presented barriers to their every effort were primarily upper middle class, with some even being affluent. Most of the mothers held highly respected social positions and occupied professions such as professors, deans, attorneys, cardiac nurses, and authors62. However, in this case, we are dealing with mothers who were neither part of a privileged class nor did they have any special advantages, which makes their accomplishments all the more remarkable.

On the other hand, the journey of becoming an activist has not liberated mothers from unreasonable expectations and the expectation of being held accountable for their disabled children’s outcomes. Sousa asserts that this new role, known as the “warrior-hero,” has shifted the historical burden on mothers from attributing disabilities of their children to them, to expecting mothers to provide all support and services. This shift has the potential to place significant strain on mothers of children with intellectual disabilities and may be detrimental to their overall well-being62.

These expectations drive them to a deeper and more profound concentration and dedication. Some parents become so engrossed in caring for their child that it becomes their sole focus, as evidenced by the experiences of Kimia and Shiva. Kimia once made a notable comment about her situation, saying, “I have autism too.” This statement illustrates how deeply immersed she is in this situation, to the point where she identifies with the symptoms of autism herself. Similarly, several years of living with a child on the autism spectrum and being isolated from society made it so that when Shiva saw a child working with a mobile phone, it seemed strange and unbelievable to her.

This high level of commitment, concentration, and dedication required for caring for a child with autism can lead to significant sacrifices for mothers, including quitting jobs, relinquishing their academic pursuits and relocating to provide specialized care.

It is crucial to acknowledge that autism, in itself, does not inherently preclude mothers from pursuing their aspirations or compel them to abandon their educational or professional pursuits.

Gender roles can inadvertently perpetuate the expectation that women should shoulder the primary responsibility for caregiving tasks, including managing a child’s autism-related needs. This division of labor can pose significant obstacles to women’s pursuit of personal interests, professional aspirations, and self-care. In such situations, it is often the mother who finds herself in the position of having to make the difficult decision to step back from both her job and her university education. A mother who does not show unwavering dedication to their children may find themselves unfairly labeled as selfish and subjected to significant social criticism63.

On the other hand, the absence of adequate support, access to quality care, facilities, and societal accommodations that erect unfair barriers and impede their capacity to strike a balance between nurturing their child and pursuing their personal goals. It causes them to migrate to destinations that offer better support systems for autistic children and their families.

These factors manifest their impact on issues, including heightening disagreements between couples, which may even result in divorce. Three participants in our study cited autism-related troubles that ultimately led to their separation. According to Hartley et al.64 divorces in families with children on the autism spectrum are twice as prevalent as in other families. Research indicates that parents of children on the autism spectrum had a higher divorce rate compared to the comparison group (23.5% vs. 13.8%). However, highlighting the study’s small sample size, the authors of an editorial maintain the belief that the divorce rate among these parents is still significantly lower than the national average in the US65.

As has been previously stated, here too, a complex interplay of factors, including a potential lack of social support, guidance, and equitable community access, can contribute to increased strain in the relationships of parents raising children with autism. Families often lack adequate support services and resources, leading parents to be ill-equipped to navigate the challenges of caring for a child with autism while sustaining healthy relationships. Additionally, caregiving responsibilities and gender roles may demand a significant investment of time, energy, and emotional support, potentially fostering resentment and conflict between partners. A study has shown that female partners are six times more likely to face separation or divorce shortly after their male partners’ diagnoses of cancer or multiple sclerosis. This underscores how the emotional and practical burdens of caregiving, coupled with a lack of support, can strain relationships, even in cases where the child’s diagnosis is autism66.

Although previous research has confirmed the positive role of religion in promoting parents’ empathy and compassion towards their children67,68,69, our study found that some parents did not mention religion’s positive influence and three parents even reported losing their faith. Given that religion plays a substantial role in Iranian culture, we expected similar results to previous studies.

As evident in these experiences, certain changes are intricately tied to one’s identity. In fact, the stress of caregiving can unsettle core facets of a woman’s identity, exposing the vulnerability of entrenched norms when confronted by exceptional sources of stress. The changes in their identities and aspirations resonate with Butler’s idea that identities are not fixed but shaped through ongoing actions and performances. Over a considerable period, critical feminists have argued that self-identity is shaped by the influence of diverse modes of power, encompassing elements like race, ethnicity, class, gender, power, and sexuality63,70.

In addition to challenges, most mothers expressed positive aspects. Some parents have become more resilient, empathetic and less judgmental. American parents, according to a study conducted in the US, also mentioned positive changes71 A study on 75 mother–father found that positive aspects of the parent-child relationship were more common than challenging ones. Mothers expressed more love, tenderness, and sensitivity, as well as a higher involvement in their children’s care, compared to fathers72.

Mothers worldwide frequently adjust their expectations for their children with autism, but they also cultivate patience and hope. Even minor advancements can bring mothers fulfillment. They begin to value even the subtle changes, something they may not have experienced with their other children71. A research study revealed that parents of children with developmental disabilities typically do not envision their children pursuing vocational opportunities. Instead, these parents expect their children to achieve independence, self-care, and the capacity to make their own decisions73. The mothers’ adjustment of expectations, as seen in Homa’s desire for her child to finish school or Kimia’s hope for her child to engage in sports, reflects the resilience and adaptability often expected of women in caregiving roles.

Normative expectations about what constitutes “normal” behavior can lead to the oppression and exclusion of autistic individuals and families from full societal participation74. Mothers often face the challenge of navigating societal norms and expectations around parenting and child development. These normative expectations often center on a narrow definition of success and well-being, aligning with neurotypical standards. However, mothers often prioritize alternative factors rather than traditional markers of success. This shift reflects a growing understanding within the autism community that children have unique strengths and abilities that may not align with traditional norms. The mothers’ adjustment of expectations, exemplified by Homa’s desire for her child to graduate from school and Kimia’s hope for her child to participate in sports, demonstrates their willingness to support their children’s aspirations, even if they deviate from societal expectations. Nevertheless, the need to adjust expectations can also be a source of stress and anxiety for mothers.

Empowering mothers who are facing fear and still maintaining hope can be highly effective, as previous studies have shown that empowerment and support through peer groups can be tremendously beneficial75. According to Lisa Cooney and Steve Rogowski, the critical feminist approach emphasizes collaboration with women to nurture their resilience, recognize their strengths, potential for growth, and individual capacity, rather than viewing them through a lens of individual deficits and pathology76.

The respondents in the study have many concerns about their children, but their primary worry is their child’s well-being and future without them. Similar concerns have been expressed by mothers in other studies. Turkish77 and Australian mothers78 also reported being concerned about their children’s wellbeing after their own passing. This fear and worry reflect the traditional gendered role of mothers as the primary nurturers and caregivers for their children and their deep love for them.

In conclusion, we explored the experiences of mothers raising a child on the autism spectrum through the lens of Critical Feminist Theory, unveiling the unique challenges and advocacy efforts of these mothers. By centering women’s narratives, the research aimed to illuminate the varying degrees of agency and empowerment they wield, as well as the constraints imposed by societal expectations. In the experience of these mothers, we observed the presence and impact of four key dimensions: gender, oppression/patriarchy, social institutions, and systemic issues.

We believe, power relations cannot be overlooked when examining the impact of autism on mothers. We must acknowledge these dynamics and how they shape the experiences of mothers, while simultaneously advocating for new, empowering narratives of autism that challenge these power structures and prevalent perceptions.

We found experiences of mothers who challenge systems, institutions, and stigmas, showcasing their determination to provide the best possible future for their children. Viewing these experiences through the lens of Critical Feminist Theory provided us with comprehensive insight into the multifaceted lives of these mothers. This underscores the pressing need for a more inclusive society and supportive governance that strive for gender equality. Furthermore, it recognizes the agency of mothers and empowers them to navigate the complexities of raising a child on the autism spectrum.

Regarding the limitation, the study primarily concentrates on the viewpoints of mothers of children on the autism spectrum, excluding the perspectives of autistic individuals themselves. To address this limitation, future research should incorporate the perspectives of autistic individuals.

While we endeavored to highlight the strengths and meaningful moments of families alongside their challenges and deficits, future research should delve deeper into exploring the strengths and contributions of autistic children. This includes an examination of their unique perspectives, specific characteristics, and creativity. Shifting the focus can help dispel negative stereotypes and foster a more positive and inclusive view of autism.

Besides, the ethnic and class backgrounds of participants were confined to a single language and individuals residing in the capital of Iran. However, Iran is characterized by diverse ethnicities with varying socioeconomic statuses, especially in more deprived cities where access to healthcare and services may be limited. To foster a more comprehensive understanding of the experiences of mothers raising autistic children in Iran, future research should broaden the sample to include participants from diverse ethnic backgrounds and socioeconomic statuses, particularly those hailing from more deprived cities with restricted access to healthcare and services.

Future research can consider adopting other theoretical frameworks, such as a rights-based approach. Finally, we recommend that upcoming studies specifically concentrate on autistic women, integrating the perspectives of critical feminist and critical autism studies.

Methods

This study employed a qualitative research design to deeply investigate the experiences of mothers of children with autism in the Iranian context. The reason why qualitative methods are attractive is that they offer the ability to investigate aspects of women’s experiences that have not been previously understood or tackled in traditional social science research. Quantitative research has been useful for identifying patterns and trends, as well as the impact of various factors on women79. However, qualitative research provides valuable insights into women’s experiences, how they experience discrimination, and how they resist it80. Furthermore, qualitative research has the potential to offer a valuable understanding of the experiences of caregivers of autistic children. In addition, it can also be used to generate hypotheses for further quantitative research31.

Sampling

The participants for this study were selected from the client base of the Tehran Institute of Psychiatry, employing a purposive sampling approach. “The research team included a Master’s degree student from the Tehran Institute of Psychiatry (first author). However, the team composition ensured a diversity of perspectives, and all participants were chosen based on the predetermined criteria to maintain an unbiased sample. The children of the participating mothers were either receiving treatment at the Tehran Institute of Psychiatry or had received services there in the past. The research team initially generated a list of 13 individuals who were receiving autism services at the center. Subsequently, the mothers of these individuals were then contacted via phone call and those who met the predetermined criteria were invited to express their interest in participating in the research. Among the 13 mothers initially approached, three chose not to participate. As a result, the final participant group comprised 10 mothers who willingly took part in this study. Pseudonyms were utilized to ensure the confidentiality and anonymity of the respondents.

The eligibility criteria for participation were as follows: Mothers residing in Tehran province who had a child with an official diagnosis of autism according to the DSM-V criteria and were primarily responsible for the child’s care. Table 1 provides an overview of the mothers’ information and relevant statistics.

In qualitative studies, the point at which sampling is considered sufficient is typically determined by reaching theoretical saturation81. In reflexive thematic analysis, it has been asserted that the concept of data saturation is not considered a reliable criterion for determining sample size81.

Considering various factors, including the research question, data collection methods, population diversity, project scope, and the goals of reflexive thematic analysis, we decided on the sample size. This estimate was considered sufficient to gather data that effectively captures the richness, complexity, and multifaceted nature of the patterns related to the phenomena of interest.

Data collection procedure

To facilitate our data collection process, we developed a semi-structured interview guide with probing questions82 (Table 2). The creation of this guide was influenced by an extensive review of relevant literature, involving mothers of autistic children, and through intensive deliberations within our research team. Furthermore, to ensure the effectiveness and appropriateness of the questions in the protocol, they underwent a pre-testing phase. Data collection involved conducting semi-structured and in-depth interviews with study participants. These interviews were chosen as the primary method due to their ability to elicit rich, context-specific information from participants. To capture the nuanced responses of participants accurately, semi-structured and in-depth interviews were recorded. The interviews were held in a private room at the Tehran Institute of Psychiatry to ensure participant comfort and minimize distractions. While the children were receiving services in another room, the mothers participated in the interviews. The interviewing team consisted of a mental health researcher and a pharmacist specializing in women’s research.

Table 2 Interview guide

Reflexivity and positionality

Our team’s positionality, consisting of two Iranian women with an interest in feminist theory and women’s issues, alongside one man from a minority ethnic group with expertise in disability studies, provided a unique lens for examining the experiences of mothers in this context. This collaborative perspective involved a reflexive awareness of our backgrounds and experiences, acknowledging the potential impact of our personal histories on the research process.

As women researchers who have encountered gender inequalities in the Iranian context, including obstacles to acquiring education and obtaining employment, we were particularly attuned to how societal expectations and power dynamics shaped the mothers’ experiences. For instance, during one interview, a mother hesitated to discuss the responsibilities of motherhood. As women who have also faced gender expectations in Iran, we were able to build rapport and encourage her to share her concerns more openly.

Mothers from minority backgrounds who experienced marginalization shared specific concerns about systemic issues which complied with our researcher. The minority researcher’s expertise in disability studies and his experience navigating social structures as part of a minority group enriched our understanding of the intersectionality of power, disability, and autism within the Iranian context. This reflexivity ensured a more comprehensive and balanced exploration of the diverse challenges and perspectives of mothers raising children on the autism spectrum in Iran. For example, mothers from minority backgrounds who experienced marginalization shared specific concerns about systemic issues.

Data analysis

Reflexive thematic analysis (RTA), was used to analyze the collected data83. RTA is a qualitative research method that involves identifying, analyzing, and reporting patterns (themes) within qualitative data. What sets RTA apart from other thematic analysis methods is its strong emphasis on the researcher’s reflexivity throughout the analytical process84. Reflexivity in RTA refers to the researcher’s awareness of their position, role, and assumptions in shaping the research process and findings. By acknowledging the researcher’s subjectivity and actively engaging in self-reflection, RTA aims to produce more nuanced, credible, and valid interpretations of qualitative data85. This approach respects and conveys the subjectivity of participants’ attitudes86.

The data analysis process started with the first interview using MAXQDA software. We thoroughly familiarized ourselves with the collected data. This involved careful examination, including transcribing audio interviews, reading through the text, and making initial notes. This initial immersion allowed us to gain a comprehensive overview of the data.

After thoroughly engaging in reading and re-reading the data, we proceeded to code the data. The most fundamental level of categorization involved coding, which encompassed the process of pinpointing particular phrases or sentences within the text and generating succinct labels or “codes” to summarize their content.

In terms of epistemological orientation, we adopted a constructionist stance, acknowledging the dynamic nature of knowledge construction within the sociocultural context of mothers raising a child on the autism spectrum in Iran87. The study adopted a critical approach to data, surpassing experiential description to explore power dynamics, societal structures, and gendered influences through a feminist lens88. While the analysis predominantly took an inductive path, allowing themes to organically emerge from participants’ narratives and providing a nuanced understanding of diverse experiences, there was also some employment of deductive analysis87,88.

By explicitly addressing these theoretical assumptions, our study aimed to provide transparency and reflexivity in the analytical process, acknowledging the theoretical underpinnings shaping our interpretation of the narratives presented by mothers in the context of raising a child on the autism spectrum in Iran.

Once all data had been coded, we organized it into groups based on these codes. This process facilitated a condensed summary of recurring themes and common meanings throughout the data.

Then, we transitioned to the task of generating themes and subthemes. Themes represent common, recurring ideas or patterns across the dataset. A theme encapsulates multiple related codes and provides a higher-level interpretation of the data. Subthemes offer a more comprehensive and nuanced examination of a specific facet within the theme. They are employed when there is a requirement to emphasize and delve more profoundly into a particular element or dimension of the overarching theme89.

This stage involved reviewing the codes we had created and identifying patterns among them. We began to combine several codes into broader themes that captured the essence of the data. Subsequently, we revisited the themes to ensure their accuracy and relevance to the data. This review process involved a thorough examination of the dataset to verify the presence and alignment of the themes. Themes that didn’t fully align or were too vague were refined, merged, or discarded, while others were further developed into their distinct themes.

With a final list of well-defined themes in hand, we assigned succinct and comprehensible names to each theme. This step involved precise articulation of the essence of each theme and how it contributed to our understanding of the data. It also resulted in easily understandable labels for each theme. Then we started the process of writing.

To promote the trustworthiness of the research, Lincoln and Guba’s criteria were used, including credibility, transferability, dependability, and confirmability90. These criteria helped ensure that the research was reliable, accurate, and consistent.