Bongiwe Leepiloe, a South African mother, has transformed her personal challenges with her autistic son's diagnosis into a platform for raising awareness about neurodivergence. What began as sharing her experiences online has evolved into founding a non-profit organization dedicated to support and education. Her story highlights the struggles and triumphs of parenting a child with autism in a country with limited resources.
Bongiwe Leepiloe's journey as a mother began to shift dramatically when her first child, Tlotlego Alpha Ledwaba, showed signs of developmental regression at age two. He lost most of his speech, retaining only the words 'mom' and 'dad,' and began communicating through pointing and humming instead. Initially suspecting a speech issue, Leepiloe sought therapy, which led to a referral to a developmental paediatrician. The autism diagnosis came when Tlotlego was three years old.
Unfamiliar with autism beforehand, Leepiloe entered a period of grief, questioning her pregnancy and frustrated by the lack of relatable examples among known autistic individuals. As the first in her family to face this, she felt isolated. Yet, she credits autism with teaching her profound lessons in motherhood. 'I think autism is what actually gave me the biggest lessons into motherhood – it gave me more patience, more understanding and the ability to sit and listen,' she said.
Raising Tlotlego, now six, presents ongoing challenges, including his picky eating habits that complicate introducing vitamins and the scarcity of suitable schools in South Africa. Leepiloe fought to secure his placement in a school, noting the irony in government policies. 'Our government says that education is a basic right of a child, and when a child is not going to school, they see that as a form of abuse – but where do we take them if there are not enough facilities?' she remarked.
Turning her isolation into action, Leepiloe shared her story on social media, connecting with other parents. In 2023, she founded the Not a Disability but Ability non-profit to emphasize strengths over limitations. 'I want him not to focus on the disability, but on his ability,' she explained. The organization hosts workshops for therapists and parents in townships, celebrates caregivers, and features a YouTube podcast where autistic children share their voices.
Leepiloe advocates for broader acceptance of neurodivergence as an 'invisible disability,' debunking myths like vaccine causation. She stresses that autism is a neurodevelopmental disorder, with brains wired differently, and calls for more personal stories to reduce stigma. Through her efforts, she aims to bridge gaps in awareness and support across South Africa.