Introduction
The study of autism has undergone a paradigm shift, moving from a deficit-based model to a more nuanced and inclusive framework informed by Disability Studies. However, a significant gap exists in integrating feminist perspectives into autism research, particularly concerning the experiences of mothers. This research addresses this gap by employing a critical feminist lens to examine the experiences of mothers raising autistic children in Iran. Raising an autistic child presents numerous challenges, including specific autistic characteristics, relationship difficulties, emotional stress, financial constraints, healthcare access limitations, social stigma, and traditional gender roles. Caregiving responsibilities disproportionately affect women, and existing research often overlooks the impact of patriarchy, cultural norms, gender roles, sociocultural factors, and intersectionality on these mothers' experiences in Iran. This study aims to fill this void by using Critical Feminist Analysis, which examines the interplay of gender, oppression/patriarchy, social institutions, and systemic change in shaping these mothers' lives.
Literature Review
While the field of autism studies has grown significantly, integrating feminist and critical perspectives remains limited. Studies have documented challenges faced by parents of autistic children, including emotional stress, mental health issues, and social isolation. Research highlights the disproportionate burden on mothers due to traditional gender roles. However, existing research on Iranian mothers of autistic children often lacks a feminist or gender-focused approach, neglecting the impact of patriarchy, cultural norms, and intersectionality. This study addresses this gap by employing a critical feminist approach to understand the experiences of these mothers more comprehensively.
Methodology
This qualitative study employed purposive sampling to recruit 10 mothers of autistic children in Tehran, Iran, who were primarily responsible for their children's care and met DSM-V criteria for autism. Data were collected through semi-structured interviews, guided by a pre-tested interview protocol. The interviews were audio-recorded, transcribed, and analyzed using Reflexive Thematic Analysis (RTA). RTA emphasizes researcher reflexivity, acknowledging the researchers' positionality and potential biases. The researchers, two Iranian women with an interest in feminist theory and a man from a minority ethnic group with expertise in disability studies, engaged in a collaborative and reflexive process to interpret the data. The researchers' awareness of their own backgrounds and potential influences on the interpretation process were crucial. The data analysis process involved familiarizing with the data, coding the data, generating themes and subthemes, and writing the final report. The criteria of credibility, transferability, dependability, and confirmability (Lincoln and Guba) were used to enhance trustworthiness. The data linked to this paper is accessible upon request.
Key Findings
Two main themes emerged from the data analysis: 'In Interaction with the World Outside' and 'In Interaction with the Self'.
**In Interaction with the World Outside:** This theme highlighted the mothers' experiences with societal reactions to their children's autism. Subthemes included narratives from society and becoming an activist. Mothers reported significant lack of public understanding and awareness of autism, leading to judgment, blame, and stigmatization. They described instances of being blamed for their children's condition, facing hurtful comments, and experiencing social isolation. Despite these challenges, mothers actively engaged in advocacy, educating others about autism, and demanding their rights (e.g., access to services, disability license plates). They often limited their outdoor activities due to fear of judgment and their children's sensory sensitivities.
**In Interaction with the Self:** This theme explored the mothers' personal transformations and experiences. Subthemes included changes and sacrifices, and fears and hopes. Mothers reported significant sacrifices, including career and educational disruptions, social isolation, and emotional toll. Many mothers described feelings of exhaustion, stress, and mental health challenges. However, amidst challenges, some mothers reported positive changes, such as increased patience, empathy, and resilience. They also found new passions and talents. Despite the challenges, mothers also expressed hope for their children's futures, but also fear about their well-being after their own deaths. Three mothers reported losing their faith, a noteworthy finding given the importance of religion in Iranian culture. The study also revealed that some mothers adjusted their expectations for their children's achievements based on their individual needs and limitations, demonstrating their adaptability and resilience.
Discussion
The findings reveal the significant impact of societal stigma, lack of awareness, and traditional gender roles on the experiences of mothers raising autistic children in Iran. The pervasive mother-blaming reflects a patriarchal system that unfairly burdens women. The mothers' transformation into activists highlights the intersection of the personal and political, as they challenge societal norms and advocate for systemic change. The study also demonstrates that the expectation of mothers to be completely dedicated to their autistic children can lead to significant sacrifices and mental health challenges. Socioeconomic disparities further exacerbate these challenges. The study acknowledges that while previous research has highlighted the positive role of religion, some mothers in this study reported losing their faith. The findings underscore the need for societal and governmental support, increased awareness, and inclusive policies to empower mothers and improve the lives of autistic individuals and their families. It challenges the dominant narratives of autism that place blame on mothers and instead centers their agency and resilience.
Conclusion
This study, using a critical feminist lens, unveils the unique challenges and advocacy efforts of Iranian mothers raising autistic children. Their resilience in the face of stigma, societal expectations, and systemic limitations highlights the urgent need for inclusive societal changes and supportive systems that prioritize gender equality and recognize the agency of these mothers. Future research should include the perspectives of autistic individuals themselves and broaden the sample to include diverse ethnicities and socioeconomic backgrounds across Iran.
Limitations
The study primarily focuses on mothers' perspectives, excluding those of autistic individuals. The sample was limited to mothers in Tehran, Iran, potentially limiting generalizability to other regions or ethnic groups. Future research should incorporate the perspectives of autistic individuals and broaden the sample to include diverse ethnic and socioeconomic backgrounds.
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