NPO founder calls for autism awareness and support
Autism is a neurodevelopmental condition characterised by difficulties with social interaction and communication, as well as restricted or repetitive behaviours.
April marks World Autism Awareness Month and Sibongile Bodibe (34), founder of Queen Madonsela Stimulation Centre, a local NPO in Emaphupheni, Etwatwa, is calling on the public to debunk the misconceptions and stigma surrounding autism.
Autism is a neurodevelopmental condition characterised by difficulties with social interaction and communication, as well as restricted or repetitive behaviours.
Bodibe, who runs a sleep-in centre for children with autism and cerebral palsy, said the lack of education and understanding remains one of the biggest barriers to acceptance – for both parents and the general public.
Some of the common misconceptions include beliefs that children with autism are violent, aggressive, naughty, or that autistic individuals are intellectually challenged.
“People assume all children with autism behave the same way, and that’s not true. They communicate in their own unique way. Those who have no speech may cry, and people think they’re sad, whereas they’re actually happy. They have emotions, even if they don’t always express them the way you’d expect. Children with autism are clever and intelligent. If they don’t like something, they simply don’t want it.”
While autism does not affect everyone in the same way, Bodibe said some of the symptoms may include, but are not limited to poor or little eye contact, not speaking or delayed speech, retreating into their own world, repeating words or phrases without understanding their use, and having a specific interest in something – for example, round shapes.
Bodibe said autism is not curable, but specific medications are available to treat severe behavioral issues, such as hyperactivity.
She emphasised that education is key. “There needs to be more awareness about what autism is so that people can be better informed through support groups.”
Some parents, she added, lock their children indoors, while others live in denial and go as far as believing their children are bewitched.
“Parents of autistic children also need counselling because when you’re expecting a child, you’re not expecting one with a disorder. They tend to feel overwhelmed.”
Bodibe started the centre in 2015 after graduating from the University of Johannesburg with a diploma in marketing. She said her goal was to ease the burden on parents, as there are no autism-specific schools in Etwatwa.
She also aimed to create an inclusive environment where children on the spectrum could thrive through tailored programs that support learning at their own pace and provide proper structure in a safe space.
She initially opened the centre for children with cerebral palsy after witnessing the struggle to find proper and caring support for her sister, Thandazo, who had cerebral palsy and was wheelchair-bound. Later, she expanded the centre to include autistic children.
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The centre has 11 residents, five of whom have autism and are between the ages of seven and 16, while the others have cerebral palsy.
The autistic children at the centre are classified as having severe (Level 3) autism. They are non-verbal and require significant help and support in their daily activities.
“We have to think for them, like with babies. If they’re hungry or need the bathroom, they can’t tell us. They tend to live in their own world, so we use signs to communicate.”
The centre has faced numerous challenges, but with the help of Eskom, Bidvest, and support from the Bonamelo Melisizwe Foundation and 100% Foundation, they were able to renovate and bring the facility up to certain standards.
“Currently, we are trying to raise R1m to buy land for a permanent centre. Right now, we’re operating from my mother’s house, which is not big enough. I’ve already identified a site in another section called Emandela. My vision is to build a fully developed stimulation centre for children living with autism and cerebral palsy in Etwatwa.”
The 34-year-old mother of three said she wants every child in her care to feel loved, regardless of their condition.
“They get frustrated because they don’t understand why they can’t speak or do certain things. I want them to enjoy life and be like other children.”
How you can help
“As a self-funded NPO, we need funding assistance to cover our day-to-day expenses, including food and caregiver salaries.
“We also need kitchen equipment, ceiling repairs, a gas stove, plates and cups, gas cylinders, office equipment, kids’ tables and chairs, stimulation toys, physiotherapy equipment, blankets, duvet covers, a washing machine, a medication cabinet, first aid kit, yard paving, a security system, Wi-Fi, a month’s worth of nutritional food (vegetables, fruits, and meat), toiletries, and cleaning supplies.”
To donate or for more information, contact Bodibe on 074 354 6966 or Mosime on 065 365 7959.
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