Support for autism caregivers takes centre stage at awareness gala

The Keakgona Kefentse Autism Resource Centre recently hosted a heartfelt gala dinner themed ‘Caring for the Carer’.

The event shone a spotlight on the often-overlooked needs of those who support individuals with autism and other cerebral conditions.

Held at Munro Viewpoint Gallery & Coffee Shop, the event created a warm and engaging space for caregivers, parents, and advocates to connect and reflect.

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The programme featured insightful presentations from experts, including Dr Phindile Mteshana, an acting clinical head of paediatric neurology, and Khutso Melematja, a behaviour specialist and founder of Jigsaw Puzzle Academy.

They shared practical guidance and personal perspectives on caregiving.

Guests, including parents of children with special needs, were treated to an evening of meaningful discussion, support, and inspiration.

Pastor Lindiwe Ndlovu, founder of Keakgona Kefentse Autism Resource Centre, autism mother and breast cancer navigator, brought the night to a memorable close when she delivered her humorous story of caring for three boys on the spectrum.

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The event successfully fostered a sense of unity, reinforcing the importance of supporting caregivers while building a stronger, more informed community around autism care.

Ndlovu, an Edenvale resident and clinician, said the event also served to raise awareness in recognition of Autism Awareness Month.

The organisation was established in 2020 during the Covid-19 lockdown, a period that deeply impacted families, particularly those with children on the autism spectrum.

With her children out of their routine while she continued frontline clinical work, Ndlovu was inspired to create a support structure for families facing similar challenges.

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Ndlovu is the mother of two autistic boys and a grandson on the spectrum.

Her journey began when her first boy child was diagnosed with autism in 2010.

Years later, in 2016, the two younger boys were also diagnosed, further shaping her commitment to advocacy and support for autism care.

Through her work, Ndlovu continues to champion awareness, education, and community support for families navigating life on the spectrum.

Ndlovu admits that when her first son was diagnosed with autism, she had no understanding of the condition.

“Even in the medical field, there is not much about autism, so we learned through our children,” said Ndlovu.

She described the early signs as non-verbal communication challenges, which became evident through her own child.

“He would be a picky eater, close his ears in noisy areas, and tiptoe, not walking with his feet fully touching the floor. He would have difficulty regulating his temperature. Because he is non-verbal, it would be difficult for him to say what he wants.

“I did take him to a centre, but he was disruptive because he would not sleep. While the other children are sleeping, he would wander around the room waking everyone up,” said Ndlovu.

Ndlovu highlighted that potty training is a key challenge, as some children are unable to go to the bathroom independently.

“My boy needed assistance until he was six years old; he was still in nappies. I had to train him to use the bathroom. Due to age, you also have to buy nappies that are not the normal kind, and they are expensive.

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“He has autism requiring high-level support; he needs constant support and supervision. He has no sense of danger; if we open the gate, he would run into the streets, and oncoming cars would not trouble him.

“When he became a teenager, hormones affected him. His aggression heightened, and he would break all the windows in the house. One day, he went onto the roof and stood at the edge of it. We had to call the fire brigade to bring him down,” said Ndlovu, adding that the experience was nerve-wracking.

“That’s the life of a carer of someone who is autistic. At night, he would wake up and laugh, and cry at the same time. If you don’t find humour or time to decompress, you will sign yourself into a mental institution,” said Ndlovu.

Ndlovu expressed that the journey of raising a child with autism is more expensive than raising a neurotypical child.

She explained that families need extra savings for emergencies, as well as ongoing costs related to medical care, clothing, and schooling, excluding specialised care centres, depending on a child’s needs.

“I had to wait a year to find space for one of my boys at school. They also don’t have grades, and after turning 18 years old, they are called school leavers. The government also has little or limited resources to assist children with autism,” said Ndlovu.

“In 2022, I was interviewed by eNCA as a mother raising children with autism who did not have schooling, which helped me secure a school placement. Most children are homeschooled or placed according to their level of functioning.

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“There are only care centres for children with autism, and they are very expensive.”

Ndlovu differentiates the mannerisms of her boys, explaining that her second born boy is moderate; he listens to instructions, and he’s potty trained.

She explained that her second son has developed a love for smartphones and music.

“He goes to school and loves the phone. He’s smart, and no one taught him how to use it. He goes to YouTube and downloads music and games.

“He dances, and we’re all like, ‘Hey, when did he learn this?’ They’re not all bad; they’re good at some things that a normal, typical child would not be. His brother is a self-taught swimmer.”

Ndlovu admits that not all parents can handle the reality of raising a child with autism, stressing the need for greater awareness of the condition.

Inspired by her own experiences, she founded the Keakgona Kefentse Autism Resource Centre, which aims to shine a spotlight on autism and emphasise the importance of community support for families navigating the spectrum.

“The organisation stands to create a community of caregivers to children living with autism. Parents have little information about the spectrum; they need advice and guidance,” said Ndlovu.

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“We take parents step by step on how to train their children on certain things. We also teach parents and caregivers how to communicate with them.

“We raise awareness in my clinic, schools, ECD centres, and more. There is a need for a network of psychologists, speech therapists, and psychiatrists. There is too much stigma around the spectrum, even more in black communities,” said Ndlovu.

As a breast cancer survivor, Ndlovu lives with her own health challenges.

She explained that although she is still undergoing chemotherapy treatment, she recently had to pause due to heart-related complications.

“When I returned to work recently, I couldn’t breathe. The doctors discovered that due to the treatment I was taking, I had too much water around my heart.

“This is why we hosted the gala, for parents with children living on the spectrum to take a moment and care for themselves. As parents, we are always on high alert, focused on our children and not ourselves.“That’s why we need to find a balance in taking care of ourselves so we can be there for our children.

Having a child with special needs is a lifelong journey. No one is there to walk it with you. Sometimes, even fathers run away and start new families elsewhere.

“I have been admitted to a mental health centre when I tapped out,” said Ndlovu.

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She added that the gala dinner was held to honour caregivers who often go unnoticed.

“The gala dinner was to celebrate our unseen heroes who face these realities every day,” said Ndlovu.

Ndlovu added that society often does not understand children on the spectrum.

“Even in churches, when you are a Christian like myself, you get told, ‘Why don’t you pray the demon in your child away?’

“I am a pastor, that is why we had people from the churches at the gala dinner to make them see, and hear these real-life stories, educate them on how to care for autistic children at faith houses.”

Ndlovu has also stood firm in calling for greater government investment in resources for children with autism.

“As a government worker, I can admit that the government has not done enough to support these children.

“There are long waiting lists to get our children into schools. There are schools for children with disabilities, but none specifically for autistic children.

“We don’t have ECD centres catering for autistic children, and there are no expected work programmes after they turn 18. Now that the government has undertaken ECDs, it must consider including centres for children with autism.

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“Bertha Gxowa Hospital has a good centre for children with autism, one should visit.”

Ndlovu has encouraged the community to step in and assist in supporting the NPO (Keakgona Kefentse Autism Resource Centre) by reaching out to her, as they currently self-fund for everything.

To contact her, call or WhatsApp at 081 741 0088.

“The last gala event was sponsored by the venue owners. They supported our mission by sponsoring the event.

“We also call in private companies to be creative, and get involved with organisations helping children on the spectrum.

“Tiger Wheel & Tyre recently highlighted a dedicated “super fan” named Nkazi, full name Nkazimulo Mngomezulu, who we also had as a guest at the gala, showcasing his passion for the brand during Autism Awareness Month.

“Recognised for his enthusiasm, Nkazi has become a standout supporter, with the company backing both him and his mother in their community-driven initiatives. As part of raising awareness, Nkazi, alongside his friend Joel and Curamus School, organised a 5km walk/run.

“The initiative was supported by Tiger Wheel & Tyre, aimed to raise both funds and awareness for autism,” said Ndlovu.