No child left behind: How mothers' love is tearing down autism barriers

Queen of Africa 2022 Sylvia Moraa Mochabo (center) with Andy speaks partners during the world autism awareness day at city primary, Nairobi on 2nd April 2022. [David Gichuru, Standard] When Alice Mundia cradled her newborn son for the very first time, the surge of love was beyond words. But what should have been a journey filled with the typical joys of parenthood soon became one marked by questions, delays, and an unwavering search for answers. Her son's development did not follow the usual path-but instead of despair, Mundia found purpose. That purpose led her into the heart of autism advocacy. Today, Mundia is the Chairperson of the Differently Talented Society of Kenya (DTSK), an organisation devoted to supporting autistic individuals and their caregivers. Autism, she explains, is a spectrum disorder that manifests differently in every individual, with a wide range of characteristics and abilities. Recognising the signs early is critical. Mundia recalls some of the first red flags: lack of eye contact during breastfeeding, delayed speech, and difficulty with social interaction. Now a mother to a 21-year-old autistic son, she notes that repetitive behaviours-such as clapping, jumping, or rocking-are also common. Disruption of routine can trigger distress, making everyday life a delicate balancing act. Mundia's advocacy began with small steps-quiet conversations, shared stories with other mothers. Today, her voice carries across policy rooms, awareness campaigns, and community forums, pushing for meaningful inclusion. "I realised my son had a special condition because he wasn't reaching developmental milestones as expected. That's when I began seeking answers," she shares. In those early days, she connected with other mothers and caregivers of children with autism, creating informal support networks and opening doors to shared learning, understanding, and solidarity. One of the most pressing challenges, she says, is the lack of schools adequately equipped to accommodate children with autism. While inclusive education has become a buzzword in many discussions, its implementation remains patchy. Many schools lack trained staff, appropriate infrastructure, or even the basic awareness required to support neurodivergent children. Notable signs Children with autism often play differently-sometimes preferring solitary activities or using toys in unconventional ways, like spinning wheels instead of pushing toy cars. According to the National Council for Persons with Disabilities (NCPWD), autism is characterised by challenges in social communication and interaction, such as difficulty interpreting body language, tone of voice, or facial expressions. They may also display intense focus on specific interests, strict adherence to routines, and hypersensitivity to certain sounds, lights, or textures. They may also exhibit variability in skills and abilities, including uneven development of cognitive skills, strengths in some areas, and challenges in others, with some individuals experiencing significant intellectual or mental difficulties and co-occurring conditions such as attention-deficit/hyperactivity disorder (ADHD), anxiety, depression, or learning disabilities. Mundia recommends that caregivers expose children to diverse social environments to help them build interaction and communication skills. "It starts with a formal assessment by a paediatrician or occupational therapist. From there, structured schedules and targeted therapies can be introduced," she advises. Although a reliable diagnosis can be made as early as age two, NCPWD notes that many children in Kenya receive theirs much later, delaying access to therapies that could significantly improve their quality of life. Children may require specialiSed therapists for different needs, such as speech therapists for communication difficulties and occupational therapists for social interaction challenges and essential life skills. They may also require dietary interventions and behaviour therapy. Early intervention within the school system is essential to mitigate social and communication challenges and build essential life skills. "When parents don't know why their child isn't meeting milestones, struggles to communicate, or has sleeping problems, it causes stress for the whole family," Mundia says. She underscores the importance of all adults-especially teachers-being alert to early signs of autism. "Teachers must develop individualised education plans and use play-based methods to teach life skills in school, helping children adapt and thrive." Cost burden But therapy comes at a steep cost because specialised professionals are often unavailable in lower-level healthcare facilities.. Speech therapy can cost around Sh4,000 per session, with occupational therapy ranging between Sh2,000 and Sh3,000-figures far beyond the reach of many families, especially when combined with the cost of a specialised diet and other support needs. "The government has acknowledged that disability inclusion is essential to achieving the Sustainable Development Goals and has committed to the principle of 'Leave No One Behind'," she adds. One key recommendation is to include caregivers in data collection efforts to inform the design of inclusive social protection schemes. This need was highlighted by research from the State Department for Social Protection and the Kenya Bureau of Statistics, which revealed that 92 percent of caregivers require financial support to properly care for persons with disabilities, including those with autism. Dr Sylvia Mochabo Akinsiku, Founder of Andy Speaks for Special Needs Persons Africa, is another leading light in Kenya's autism advocacy movement. She organises "Ride for Autism Africa", an awareness initiative encouraging mothers to register their children with the NCPWD. Riding for autism Held on April 1, this year's ride combined awareness-raising with medical camps. The NCPWD conducted assessments and registrations, giving families access to essential government services and social protection. "This is our sixth ride and we have several projects to create awareness and early intervention. We're also working with Nexus Therapy Centres across the country to improve access to quality habilitation services," said Dr Sylvia. Dr Akinsiku said funds raised this year will help equip schools in Naivasha and Nakuru with specialised learning materials and set up therapy centres to help children with sensory processing and behavioural challenges. "We raise awareness to combat stigma-not just among caregivers, but in the wider community. By bringing our children into the public eye, we normalise their presence," says Dr Sylvia, a mother to two children with autism. Her advocacy roots lie in the Rotary Club of Muthaiga, where she first became active through the annual Sunshine Rally. Started in 1979 by the Manu Chandaria Foundation, the Rotary Sunshine Rally remains a symbol of joy and inclusion for children with physical and mental challenges. Rotary International District 9212-which includes Kenya, Ethiopia, Eritrea, and South Sudan-has continued to champion disability inclusion through this initiative. Originally conceived as a day of fun, food, and entertainment for children with disabilities, the rally has grown into a beacon of hope and friendship. For Dr Sylvia and Alice Mundia, every child's milestone-no matter how small-is a victory worth celebrating. Their advocacy, born from personal journeys, is now a collective movement shaping a more inclusive future for Kenya's differently talented.

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