From the moment her child was diagnosed with autism and intellectual developmental delay, Asmaa Ali, 28, was treated less as a mother navigating a difficult situation than as the person to blame. Relatives and others framed the diagnosis as evidence of negligence, ignorance, behaviour during pregnancy or supposedly defective genes.
Such narratives reproduce patriarchal ideas that assign responsibility and fault to women’s bodies while shielding fathers. Developmental disabilities have varied causes, including genetic and other factors, and many cannot be traced to a single cause. A diagnosis does not establish maternal wrongdoing.
Asmaa says her husband withdrew from financial support and care while she was expected to be endlessly patient and self-sacrificing. The imbalance reduced her role to unpaid caregiving and gave him social room to disengage.
Her mother-in-law hid the child from relatives to protect the family’s reputation, Asmaa recounts. She feared a world that excluded her son and treated her as the source of shame.
One day her husband suggested leaving the boy with her mother. He used insulting labels for the child, she says. Poor and without employment at the time, Asmaa initially endured the situation, but exhaustion and distress led her to seek divorce on grounds of harm. Courts awarded maintenance for her and the child and a separate, very small sum toward therapeutic-centre expenses.
Her former husband then resigned from his private-sector job and presented himself to the court as unemployed, she says. Payments almost stopped. She relied on Nasser Social Bank’s Family Insurance Fund, with its reported maximum provisional payment of EGP 500 monthly, and family assistance while continuing legal proceedings.
People blamed her for screen exposure or medication during pregnancy without evidence. Those accusations made her feel isolated and overwhelmed. They are examples of stigma in her testimony, not medical explanations of autism.
Asmaa does not regret choosing divorce and a calmer life with her son. She now works during the hours he spends at nursery, trying to create a safer world for him. Her experience echoes other mothers facing disability, stigma and inadequate family and legal support.
Radwa: Raising Her Son While Chasing Maintenance
Radwa Ahmed, 32, says her husband divorced her seven days after the birth of their first child, who has Down syndrome. He angrily asserted a right to a child without a disability, expressing a view of fatherhood conditional on physical and intellectual conformity.
Doctors at Egypt’s National Research Centre told them the case was not inherited and neither parent was at fault, Radwa recounts. Nevertheless, her husband left and pressured her to waive claims over marital property, deferred dowry and her own maintenance. He provided no financial support despite being comfortably placed at the time, she says.
The divorce occurred amid the upheaval after the January 25, 2011, revolution. Still a university student, Radwa lacked money for a lawyer. She decided not to remarry and completed a psychology degree to better understand her son’s emotional and behavioural needs.
She tutored children while her son was at school, directing earnings to speech, skills-development and physiotherapy sessions. Rising costs and absent regular support made financial crises constant.
Seeking better education, she moved from Cairo to Alexandria. In Cairo, she found special-education classrooms crowded with around twenty children with different needs. In Alexandria she found a new school with better supervision and classes of no more than seven, and moved into her mother’s flat.
In 2022, after more than a decade, Radwa sought family-court legal assistance and sued for child maintenance. The court awarded EGP 1,500 monthly, but payments were irregular. Arrears accumulated for eight or nine months; each recovery took around four months in court and another two for enforcement, she says.
Travel and waiting costs to obtain provisional Nasser Social Bank support nearly equalled the payment, she found. She therefore let arrears accumulate and sued to collect them together. Legal rights became another costly burden alongside daily care.
Her son is now fourteen. He can walk, speak, express himself and use the bathroom independently, though speech remains difficult. These are major achievements for Radwa. She wants him recognised as a person rather than a burden and disability understood as a shared family responsibility.
Hoda: From Expulsion to Rebuilding a Life
Hoda al-Sayed, 36, describes a different combination of domestic and community pressures. Her baby rarely slept and cried constantly. Living in her husband’s family home, she faced blame over housework and her mother-in-law’s intrusive involvement of neighbours.
After differing initial medical assessments, her daughter was diagnosed with severe autism. Her husband’s relatives first dismissed the doctors, then her mother-in-law publicly shamed her and expelled her and the child, Hoda says. She found herself outside with a baby whose medicine and nappy care had been interrupted, unsure where to go.
Her siblings intervened. Her mother-in-law eventually allowed her a few minutes to collect medicine and basic clothing. With only a blanket to keep the baby warm, she stayed with her sister, then moved to her late mother’s home when the persistent crying became difficult for that household.
Neighbours complained and some threatened to call police, accusing her of mistreating the child. Hoda turned to online research, support groups and training to understand distress, teach self-care and help her daughter use the bathroom.
About ten years later, her daughter could speak and attend an inclusive school. Stigma persisted: relatives concealed news of births and excluded them from celebrations, Hoda says. After repeated hurt, she chose to centre her life around her daughter.
These accounts reveal more than medical or developmental differences. Unequal gender roles assign mothers care, guilt and stigma while allowing fathers to withdraw. The women’s choices—divorce, rebuilding life or limiting hostile relationships—are efforts to resist a system treating disability as shame and maternal fault.
Mothers become a social shield absorbing blame and institutional failures. Disability intersects with patriarchal structures that demand complete care without recognition or protection.
Caregiving and Society’s Blame
Blame can start inside the family and extend into public life, ending in divorce, abandonment or refusal to support a child. Mothers are held responsible for both reproduction and care while fathers escape scrutiny.
Yasmin Matar, an expert at the National Council for Persons with Disabilities, says autism often leads to accusations of poor parenting, while Down syndrome or inherited conditions are framed as maternal “genetic guilt”. There is no basis for assigning moral responsibility to one parent. Preference for boys can make the birth of a girl with a disability perceived as a double failure for the mother.
Matar cites fragile X syndrome as an example of an inherited condition that can intensify pressure and fears about future children. She argues that families need accurate genetic assessment rather than moral condemnation. Inheritance patterns differ by condition; disability does not automatically recur in every male birth, and the report should not be read as establishing a universal inheritance rule.
Genetic testing and specialist interpretation, rather than social judgments, are necessary to understand causes and recurrence risks in a particular family, she stresses.
Families commonly move through shock, denial, blame and decisions about acceptance and support, Matar says. Some remain fixed on blaming the mother, harming both her psychological wellbeing and the child.
Children with intellectual disabilities may receive less spending, poorer food or clothing than siblings, she notes. This reflects selective assumptions about children’s social value, leaving mothers to manage unequal treatment.
Stigma extends to community reactions to children’s behaviour in play and public spaces. Mothers may withdraw to avoid hostility, excluding both themselves and children from public life.
Matar describes depression and burnout among mothers facing constant comparison and unequal responsibility. She calls for early, structured family guidance from diagnosis, redistributing care and helping families confront stigma rather than merely offering consolation.
Families should receive accurate genetic results so they can make informed reproductive decisions, she says. Mothers often carry practical responsibility for therapy because they spend the most time with children, again revealing unequal care distribution.
Mothers Carrying the Daily Responsibility
Amal Mobdi, president of the Egyptian sports federation for intellectual disabilities, says longstanding stigma has eased somewhat in recent years through greater public awareness and state engagement.
She credits public participation, including “Differently Abled” events, with challenging stereotypes and giving mothers more space to take pride in children’s abilities, particularly in sport.
The federation primarily provides sports programmes, with occasional parent-awareness activities, Mobdi told Zawia3. Those complementary efforts do not replace broader support systems.
Mothers manage daily care, medical follow-up, rehabilitation, sports training and household arrangements, she says. She estimates fathers’ involvement in these responsibilities at no more than around 5%. This is her assessment in the interview, not a nationally representative survey result.
Family Withdrawal and Gaps in Support
Ahmed Hanafi, a child-protection consultant at the NCCM, says some fathers withdraw when a child is diagnosed, through divorce or practical disengagement while retaining the formal role of father. Economic and social pressures interact with unequal gender expectations.
Withdrawal can mean leaving the family without support, remarrying or paying only token sums that do not meet a child’s needs. Some fathers perceive disability as an obstacle to an idea of masculinity centred on achievement rather than care, especially after a first birth, Hanafi says.
He also recognises fathers who continue full responsibility. The broader problem is that society sometimes excuses disengagement while automatically assigning mothers sole care, regardless of financial or emotional readiness or employment.
Even employed mothers may face care costs exceeding income, including therapy and medical follow-up alongside invisible domestic work, Hanafi told Zawia3. A father’s absence therefore affects the services available to the child, not only emotions.
Inclusive and special-education places are limited, enrolment is demanding, government centres are overcrowded and private centres unaffordable for many households, especially those headed by women, he says. Short or irregular public rehabilitation sessions can widen class differences in outcomes and independence.
Rehabilitation centres concentrate in major cities, leaving rural mothers with travel burdens or children without support at home. Institutional absence may lead to dangerous practices such as restraint or lack of supervision, increasing risks of sexual or economic exploitation where children have difficulty recognising or reporting harm, Hanafi warns.
Without comprehensive safeguarding and psychosocial support, risks can increase as children grow more mobile. Some families seek residential care for basic safety despite limited means. Separation and absent income or networks intensify pressures, reflecting structural gaps that cannot be blamed on individuals alone.
Gendered Stigma and Psychological Pressure
Dr Hagar Ramadan, a psychiatrist and addiction-treatment specialist, says genetic and inherited factors can contribute to intellectual and developmental conditions, but causes vary and no parent should be blamed without evidence. Patriarchal expectations nevertheless place responsibility on mothers, intensifying distress.
Mothers arrange healthcare, education, appointments and housework while being judged for behaviour from diagnosis through adolescence, she says. Delayed speech, continued nappy use or aggression are interpreted as parenting failures without recognising developmental needs.
Stigma can also intensify during adolescence when sexuality and specialised support needs arise, with mothers blamed amid limited institutional recognition of children’s rights to understanding and protection.
Accumulated pressure may lead to isolation, persistent guilt, depression and anxiety, Ramadan warns. Caregiver exhaustion affects children’s sense of security and can create mutual distress. In extreme cases, serious thoughts of self-harm or harm to others require support; this is her warning about risk, not an inevitable outcome of disability or caregiving.
She calls for a multidisciplinary response: challenge gendered stigma, expand affordable specialist services and provide systematic psychological support for caregivers, especially mothers, to protect children and family stability.
Every step toward a child’s communication or independence is also a mother’s effort to reclaim a role beyond compulsory self-sacrifice. Without stronger family and institutional support, many will remain alone with stigma, exhaustion and inadequate protection.
This report was produced as part of a Free Press Unlimited fellowship, with editorial supervision by Ruba al-Helo.
