A mother’s fight to break autism stigma
A Joburg mother, who is learning to cope after one of her three children was diagnosed with autism, is campaigning to break the stigma associated with the disorder.
After discovering that her son, who had taken to behaving strangely, was actually suffering from autism, Nomsa Masoka has started a support group for parents to share their learnings and experiences.
“Having a child with autism can be a very daunting experience if you are not aware or properly trained. All parents expect their children to be normal and the same. But when one of them turns out to be different, it’s a reality that no one can run away from,” Masoka said.
Masoka is a married mother, based in Johannesburg. She is working hard to raise awareness about autism through sharing her experience with other parents. She has three children, and one of them is living with autism.
“My son was normal until the age of two. Then all of a sudden he started losing his speech and battled with language. He became clumsy when feeding himself, and would not respond to his name. He started isolating himself and refused to be hugged.”
“He stopped playing with his toys and he would wake up around 2am and start making noises or sing. He became extremely aggressive, sometimes biting me. I was terrified and noticed that something was not right. I felt like he was losing his mind,” she said. She said she could easily have been convinced he was bewitched or cursed as these are common misconceptions in many African communities.
My advice to parents who think the behavior of their child is abnormal is that they should immediately take them to their nearest clinic for a check.
“Lucky enough, because I’m a speech therapist by profession, I knew this was not the case,” she said.
Masoka recognised the symptoms as those of autism and consulted with a neurodevelopmental paeditrician who diagnosed her child with autism. When her son turned three she put him in a creche for children with special needs.
Masoka said children with autism don’t like crowded and noisy places. She said her son likes routine and order. He plays games on her cell phone and gets very high scores. He suffers from anxiety and mood swings, so he has been placed on medication that helps him cope with this.
“The most important lesson I’ve learnt was to love my son unconditionally and be patient all the time. Autistic children can really test your patience as they like to break things. My advice to parents who think the behavior of their child is abnormal is that they should immediately take them to their nearest clinic for a check,” she said, adding that she had started a support group for mothers of children with autism.
“My intention is to bring families together and break the stigma around autism,” Masoka said.
An edited version of this story appeared in The Star.