April, Autism Awareness Month, brings to light the vital conversations around the lives of children with autism. According to the World Health Organization, approximately 1 in 100 children worldwide are affected by autism, but local studies in South Africa show a prevalence rate of between 0.08% to 2%. April is Autism Awareness Month, a time dedicated to raising awareness about autism, promoting understanding, and advocating for the inclusion of individuals on the spectrum. Autism is a neurodevelopmental condition that affects an individual’s ability to communicate, interact socially, and engage in typical behaviours. It is a spectrum disorder, meaning its symptoms can vary widely, from mild to severe, and each child with autism experiences it uniquely.
Despite its prevalence, autism remains widely misunderstood, and many children, especially in underprivileged communities, struggle to access the support and resources they need. Autism Awareness Month serves as an opportunity to challenge stereotypes, educate the public, and ensure that children with autism have the opportunity to thrive.
One such story is that of Nompumelelo Matshoba, a single mother and a dedicated member of Activate! Change Drivers, raising a beautiful child with autism in a community where awareness and resources are scarce. Her journey, filled with challenges and triumphs, showcases the resilience of families navigating a system that often overlooks or misinterprets the complexities of autism.
The Hidden Struggles: Autism in Marginalized Communities
In many underprivileged communities, autism is a largely taboo subject, and children on the spectrum are left often without the support they need to thrive. This is particularly evident in South Africa, where autism is still an under-discussed condition, especially among black communities. While autism is more prevalent in males, it remains an invisible condition in many parts of society, with few resources to provide adequate support.
Nompumelelo reflects on the difficulty of raising her child in a society that is uninformed or dismissive of autism. ‘’ People often see the child through a lens of the ‘misbehaving’ or ‘difficult’ stereotype, labelling them as simply ‘naughty’ or ‘unruly’ without understanding the deeper complexities of autism. ‘’This lack of knowledge often means that children with autism, especially in marginalized communities, receive minimal support from their families and communities. Moreover, the financial burden of raising a child with autism can be overwhelming, with specialized care and education often beyond the reach of many.
The Importance of Early Diagnosis and Intervention
One of the most critical aspects of autism is the importance of early diagnosis and intervention. According to the World Health Organization, early identification of autism, especially within the first two years of a child’s life, can significantly improve their development and overall well-being. However, this is not always easy to achieve, especially when there is a shortage of trained professionals to diagnose autism.
In a media statement, Minister Dlamini emphasizes that the first 1,000 days of a child’s life are crucial for cognitive and emotional development. Early childhood development services can play a pivotal role in identifying autism early on, allowing parents to access the necessary resources and treatments. However, a woman in Gugulethu Western Cape, explained, “My child was diagnosed with autism at the age of four by an American doctor who was visiting South Africa. Before, I had consulted with many doctors who could not pinpoint the problem”. Moreover, Nompumelelo’s experience does not mirror these interventions but that of many parents in South Africa: the lack of trained professionals, coupled with the scarcity of support services, means that many children with autism go undiagnosed or misdiagnosed until much later.
Challenges Faced in Schools
Autism South Africa (ASA), highlights the significant barriers faced by children with autism in the South African educational system. These include the lack of specialized training for teachers in autism spectrum disorders (ASD) and the lack of tailored learning approaches for children with autism. For many parents, the educational system presents another significant challenge and schools follow a one-size-fits-all curriculum. A child who needs an individualized learning plan tailored to their specific needs may find this challenging.
Nompumelelo shares, “Finding the right school for my child has been one of the hardest things I have done. Many autism schools are not financially accessible. The fees can go beyond R15,000 a month, which is far too much for most families, including mine. It is heartbreaking because I want the best for my child, but these financial barriers only add to the emotional and psychological stress we are already carrying. It is not just about finding a school, it is about making sure my child has the best environment.”
Furthermore, society often perpetuates the misconception that all autistic children are “high-functioning” or have extraordinary abilities. In reality, most children with autism face daily challenges, particularly in areas such as communication, social interaction, and sensory processing. These misconceptions can lead to even heightened stigmatization, further isolating children who don’t fit the media’s portrayal of autism.
The Beauty of a Super Mom: Nompumelelo’s Advocacy
Despite the obstacles, Nompumelelo has channelled her experiences into advocacy and grassroots change. In the nine years since her daughter’s diagnosis, Nompumelelo has learned invaluable lessons about patience, understanding, and the importance of seeing the world from her daughter’s perspective. “You never get the same child twice,” she reflects. “Everything can be normal one minute, and then she might be having a tantrum due to sensory overload. You are always trying to figure out what is wrong.”
Her personal journey has cultivated her commitment to creating spaces where children, particularly those from underprivileged communities, can receive the support they need. Nompumelelo’s organization, Ausome Heroes, runs various programs, Autism Awareness Month, to raise awareness and provide a supportive environment for children on the spectrum. Programs such as holiday activities, aftercare, awareness walks, talks and dialogues in churches and local schools in Soweto, have partnered with Jaggas cycles; cycling for change in support of autism, and autism awareness walk are designed to help children and their families feel seen, understood, and supported.
“Raising a child with autism is challenging,” says Nompumelelo, “but it’s also rewarding. Every step forward is worth celebrating. It is about recognizing every small achievement, whether learning a new skill, reaching a personal goal, or enhancing communication. That builds a child’s confidence and self-worth.”
The Need for Self-Care: Parents as Advocates
The emotional and physical toll of raising a child with autism is undeniable. Nompumelelo stresses the importance of self-care for parents, encouraging them to seek out support groups, professional counselling, and peer support to avoid burnout. Organizations like Autism South Africa (ASA)and the Association for Autism (AFA)offer parent support networks and workshops designed to address caregiver wellness. She furthermore stresses that raising a child with autism requires a deep reservoir of love, patience, and understanding, and parents must remember to care for themselves so that they can continue to care for their children.
Nompumelelo is making a meaningful impact by creating a supportive, holistic environment for parents in the black community who face the stigma of raising a child with autism. This stigma often leads to unfair judgment, with parents being blamed for their child’s behavior or accused of poor discipline. To address this, Nompumelelo recently hosted a vision board event that offered a safe space for parents to set their goals and create their vision for the year. The event featured a yoga session, along with experts like a financial planner and a life coach, providing practical tools for personal and professional growth, also offered valuable insights, helping parents get a strong start to the year while fostering self-love and empowerment. This approach acknowledges the importance of supporting parents’ well-being, alongside their children’s needs, and challenges the stigma surrounding autism.
A Vision for the Future: A Society of Acceptance
Nompumelelo’s vision is one where autistic children can thrive without fear of being misunderstood or ostracized. She dreams of a society where neurodiversity is celebrated and where children on the autism spectrum are accepted and given opportunities to succeed.
“Every child deserves to feel valued,” she says, “and it’s through love, understanding, and patience that we can help our children flourish.”
Conclusion: Love as the Foundation
Raising a child with autism may come with challenges, but it also brings immense joy and fulfilment. As Nompumelelo’s story illustrates, the key to navigating this journey is love – a love that is patient, understanding, and unyielding. With support, resources, and community understanding, children with autism can lead happy, meaningful lives, and their families can feel empowered to advocate for change.
Nompumelelo’s work with “Ausome Heroes” and her commitment to raising awareness is just one example of how grassroots efforts can create lasting change. By continuing to speak out, educate, and advocate for inclusion, we can build a world where all children – regardless of their differences – can thrive. Please join Ausome Heroes on the 30th of April 2025 for the Autism Awareness Walk and support them by purchasing a ribbon for only R20.00; call 083 301 7673
Sources:
- Health Commemorating World Autism Day – Government of South Africa
- Help for Children with Autism – Government of South Africa
- World Health Organization. “Autism Spectrum Disorders.” WHO
- SA News Early Childhood Development crucial to country’s goals.
- Autism South Africa
About author: Jennifer Mdluli is a passionate radio broadcaster, Head coach and Founder of Emerald Gymnastics Club, and facilitator dedicated to youth and community development. A member of Activate! Change Drivers, an organization that fosters youth leadership and inspires social change through creativity and engagement, Jennifer is committed to supporting efforts that promote equality, inclusion, and empowerment for all individuals.