A critical feminist study of mothers raising a child on the autism spectrum in Iran

Autism research has undergone a paradigm shift from deficit-oriented models to more inclusive perspectives informed by Disability Studies. Despite this evolution, a gap persists at the intersection of feminism, critical studies, and disability studies, particularly regarding caregivers' gendered experiences. Caregiving remains largely feminized, with women disproportionately coordinating care, reporting heightened responsibility, and facing confinement within traditional roles. International evidence shows compounded barriers for marginalized women caregivers (e.g., intersections of race, class, and gender). In Iran, patriarchal norms, gender roles, cultural and religious contexts, and economic pressures may create distinct challenges for mothers of autistic children. Prior Iranian studies document prevalence differences, stigma, reduced quality of daily activities, and unmet needs among mothers, but largely lack feminist or gender-focused analysis. This study aims to address that gap by examining mothers’ experiences through critical feminist theory, attending to power, patriarchy, social institutions, class, and systemic issues shaping their caregiving and lives. The purpose is to illuminate how gendered power dynamics and intersecting structures affect these mothers and to inform more inclusive policies and supports.

The paper synthesizes literature indicating a shift in autism discourse toward neurodiversity and social models. Disability Studies challenges medicalized views and emphasizes sociocultural contexts. A persistent literature gap exists where feminist and critical theories are under-integrated in autism caregiving research. Global studies report mothers’ elevated caregiving burden, stigma, mental health strain, and socio-economic constraints; qualitative work in Nepal and the U.S. highlights intersectional barriers involving race, class, and gender. Iranian research shows prevalence disparities, maternal stigma, reduced quality of daily activities, and high unmet needs, yet prior work often relies on medical paradigms and quantitative methods that overlook patriarchy and gender roles. Theoretical grounding includes critical feminist theory synthesizing feminist and critical social theory to analyze gender, oppression/patriarchy, social institutions, and systemic change. This framework emphasizes intersectionality, power relations, and lived experience as central to understanding caregivers’ realities.

Design: Qualitative study using reflexive thematic analysis (RTA) within a constructionist epistemology and a critical feminist lens to explore power dynamics, societal structures, and gendered influences in the experiences of mothers of autistic children in Iran. Setting and sampling: Purposive sampling from the client base of the Tehran Institute of Psychiatry. Eligibility: mothers living in Tehran province with a child formally diagnosed with autism per DSM-5 and who were primary caregivers. Recruitment began with 13 mothers approached; 10 consented and participated. Average maternal age was 36.6 years; three were single and seven married. Children varied by sex and autism severity (Levels 1–3). Data collection: Semi-structured, in-depth, audio-recorded interviews conducted in a private room at the Tehran Institute of Psychiatry while the children received services elsewhere. An interview guide (seven prompts) was developed from literature, stakeholder input, team deliberations, and pre-testing. Interviewers included a mental health researcher and a pharmacist specializing in women’s research. Reflexivity and positionality: The team comprised two Iranian women oriented to feminist theory and one man from a minority ethnic group with expertise in disability studies. Reflexive practice acknowledged how researchers’ identities and experiences shaped rapport, data generation, and interpretation, enhancing sensitivity to intersectionality and power. Data analysis: Transcripts were managed in MAXQDA. Analysis followed RTA steps: familiarization; inductive-dominant coding with some deductive elements; theme development and review; naming and defining themes; and writing. The analysis prioritized participants’ subjectivities while interrogating power structures. Trustworthiness was supported by Lincoln and Guba’s criteria (credibility, transferability, dependability, confirmability). Data are available upon request.

Sample: 10 mothers (mean age 36.6 years); 3 single, 7 married. Two overarching themes with subthemes emerged. Theme 1: In Interaction with the World Outside - Narratives from society: Mothers reported pervasive public ignorance about autism leading to judgment, blame (e.g., moral or religious attributions), bullying/teasing, and labeling of children and mothers. Stigma fostered fear, self-stigma, and social withdrawal. Sensory sensitivities made crowded spaces difficult, further limiting participation. Some mothers used badges/shirts indicating autism to preempt inquiries but still faced scrutiny. - Becoming an activist: Despite barriers, mothers advocated for their children, educating others (e.g., informing barbers, sellers), organizing and protesting for rights (insurance, services, disability license plates). They successfully challenged policies (e.g., ensuring disability license plates could be issued to mothers, not just fathers), demonstrating agency against systemic inequities. Theme 2: In Interaction with the Self - Changes and sacrifices: Mothers reported curtailed social lives, career and educational disruptions, relocation considerations for services, and heightened caregiving focus leading to isolation. Emotional and mental health strains included exhaustion, stress, trauma, depression, and sleep disruption. Some reported identity shifts, difficulty relating to neurotypical children, and, for a few, loss of religious faith. Divorce and relationship strain were present among participants. - Fears and hopes: Persistent concern about the child’s future and care after the mother’s death; worries about puberty, medication, and safety. Mothers adjusted expectations toward functional milestones (finishing school, participation in sports, following rules). Many also described growth in patience, empathy, resilience, and shared activities (e.g., music) that improved mood and parent–child connection. Overall: Mothers navigate intersecting pressures of patriarchy, social stigma, institutional barriers, and socioeconomic constraints while asserting agency through advocacy. Findings underscore urgent needs for public autism awareness, equitable access to services, and gender-sensitive support policies.

The analysis highlights how gendered norms and patriarchal structures intensify stigma, blame, and caregiving burdens for mothers of autistic children. Public misunderstanding fuels both enacted stigma and internalized self-stigma, with mothers sometimes prioritizing mainstreaming to avoid labels, potentially at mental health costs. Mother-blaming reflects longstanding patriarchal narratives holding women responsible for children’s outcomes. Simultaneously, mothers’ activism exemplifies the feminist maxim that the personal is political, as they confront systemic obstacles and advocate for policy changes and social recognition. Intersectionality is central: the convergence of gender, class, and disability compounds socioeconomic marginalization and access barriers. The socio-political context and inadequate supports shift disproportionate responsibility onto mothers, reinforcing unequal gendered divisions of labor and constraining educational and career trajectories. High caregiving demands connect to identity shifts, strain in partnerships (including separations), and complex relationships with religion. Yet many mothers also report positive transformations, including increased patience, empathy, and redefined expectations aligned with their children’s unique strengths. These findings address the research aim by situating mothers’ lived experiences within power relations and institutional contexts, moving beyond individual-level explanations to structural analysis. Relevance to the field includes demonstrating the value of critical feminist frameworks in autism caregiving research, informing policy for gender-equitable support, accessible services, public education to reduce stigma, and empowerment-oriented interventions (e.g., peer support).

Through a critical feminist lens, the study reveals how gender, oppression/patriarchy, social institutions, and systemic issues shape the lives of Iranian mothers raising autistic children. Despite pervasive stigma and institutional barriers, mothers act as advocates and change agents for their children. The study calls for more inclusive, gender-equitable policies, expanded public autism awareness, and supportive governance that recognizes mothers’ agency. Future research should broaden theoretical frames (e.g., rights-based approaches), include autistic individuals’ perspectives, focus on autistic women, and further explore the strengths and contributions of autistic children to counter deficit narratives.

The study centers only on mothers’ perspectives and does not include autistic individuals’ voices. Participants were limited to Farsi-speaking mothers in Tehran (the capital), constraining ethnic and socioeconomic diversity and potentially limiting transferability to more deprived regions with reduced service access. The qualitative design and small purposive sample (n=10) limit generalizability. Future work should incorporate autistic perspectives, expand sampling across diverse ethnic and socioeconomic groups and regions, and apply additional frameworks (e.g., rights-based approaches).