This blog was written by Dr Fridah Kiambati, Associate Research Scientist, and Davis Muli Musyoki, Communication Officer at the African Population and Health Research Center (APHRC). They both support the Education and Youth Empowerment Unit in the Human Development Theme.

When a child is diagnosed with Autism Spectrum Disorder (ASD), the moment often brings both clarity and uncertainty. For many parents in Kenya, it explains their child’s behaviours and developmental delays—but it also opens the door to a long, emotionally-demanding journey. Diagnosis is not the destination; it is just the beginning.

A recent study offers an intimate look into the lived realities of parents raising children with autism in Kenya. Drawing insights from a WhatsApp support group for parents, the study reveals the profound emotional burden these caregivers bear—far beyond medical consultations or therapy sessions.

The invisible load of love

Parenting is always demanding. But for parents of children with ASD, that demand is compounded by the complexity of needs, behavioural challenges and a system that often fails to understand or accommodate their children. According to the study, emotional support emerged as the most sought-after form of help, making up 45.2% of the total interactions analysed in the support group.

This statistic is more than just a number. It is a loud, collective cry from parents navigating a challenging path—one filled with anxiety, confusion, fear and too often, loneliness.

In one message shared in the study, a parent described the painful experience of watching her non-verbal child struggle to express basic needs, stating:

“You bleed inside and pretend everything is okay, not to hurt your child.”

These unseen wounds are shared by many. The emotional toll can manifest as depression, chronic stress or burnout, particularly when support is minimal and societal understanding is limited.

Empathy over expertise

What parents in the study needed most was not expert analysis—it was empathy. Many found solace in simply being heard and validated by other parents going through similar struggles. Empathetic exchanges were the most dominant type of emotional support, followed by words of encouragement and shared prayers.

One parent shared a story about how her child refused to wear clothes. Others responded not with judgment, but with understanding—recounting similar episodes and how they coped. This kind of mutual empathy builds a sense of community and belonging that is often missing in mainstream society.

As the study by Kiambati et al. (2025) explains, “Parenting and caring for a child with autism is associated with a high burden of care and impacts the well-being of the parent.” That impact, if left unaddressed, can derail the entire caregiving system, since the parent is the central pillar of support for the child.

A silent mental health crisis

The emotional burden of parenting a child with autism is not just anecdotal—it is well-documented. Social support significantly reduces stress and improves mental health outcomes for caregivers of children with ASD. Yet in Kenya, formal structures that offer such support are limited.

Many parents in the study expressed feeling overwhelmed, especially when their children failed to reach key milestones or developed new behavioural challenges. One parent posted:

“Do we have parents with testimonies of their autistic children who moved from non-verbal to verbal? Please encourage us.”

Behind this message is deep emotional fatigue and desperation—feelings that cannot be resolved by awareness campaigns alone.

The role of community and culture

Kenyan society still battles stigma around disability, and autism is no exception. Parents often face blame, rejection or unhelpful advice from extended family and the community. This social isolation only deepens their emotional struggles.

However, the study also found strength in online communities. WhatsApp groups like the one studied provided a culturally-sensitive space where parents could communicate in Kiswahili or English, vent frustrations, share spiritual encouragement and feel less alone.

What needs to change

The emotional burden of caregiving is not just a personal issue—it is a public health concern. When parents are emotionally unwell, their ability to care, advocate and support their children diminishes. As such, any intervention that seeks to improve the lives of children with autism must also prioritise the mental health and wellbeing of their caregivers.

Based on research findings, several recommendations emerge:

  • Create parent support programmes: Institutions should design programmes that include emotional counselling, peer mentorship and safe spaces for sharing.
  • Invest in respite services: Giving parents a break from caregiving responsibilities can prevent burnout and mental health decline.
  • Train community health workers and educators: Increased understanding at the local level can reduce stigma and improve early intervention.
  • Normalise conversations around caregiver mental health: Silence and shame must be replaced with compassion and open dialogue.

A plea for support

“Let’s not tire training them again and again,” one parent encouraged others. “God is faithful and will reward the work of our hands.”

This statement encapsulates the strength and vulnerability of parents raising children with autism in Kenya. Their resilience is extraordinary, but resilience should never be mistaken for lack of need.

Beyond diagnosis lies a long road of emotional labour that must be supported—not just by fellow parents, but by society, systems and state. Kenya must move from acknowledging autism to truly embracing and supporting the families who live with it every day.