Fighting autism stigma

From left: Banetsi Maphunga, Yandisa Kawulela-Mahlasela and Gabriela Wiener plead with parents at the workshop to take care of their children with autism spectrum disorder.

Your child with autism is not a problem child and autism is a disorder not a disability.

This was the message from NPO Nosh for Josh to the residents of Khayelitsha who met at the Way of Life Church for a workshop on autism on Monday June 19.

They urged the community to stop considering autism spectrum disorder (ASD) as a disease.

Nosh for Josh founder Sandy Pekeur-Sandy advised parents to highlight their children’s strengths to help them become successful in life.

Her son Josh was born with autism.

She urged people not to abandon their autistic children or keep them from getting an education.

“Mothers need to be the voice of their children. They need not to give up on them. I didn’t give up on my child. I want people to learn more about this disorder. We are here to give hope to the hopeless. We are here to say your child can still learn and get an education,” she said sobbing.

She said there are places where parents can take their autistic children for help.

Ms Pekeur-Sandy said she finally had help this year when they went to India for a stem cell operation for Josh. She said since the operation on April 16, Josh has shown signs of speaking.

“Words are coming out of him now. There is no more crying, hyper (behaviour) and spitting. Josh was hyper and was not speaking. But when we do not give up on our children we are rewarded. It shows that nothing is impossible. Your child can still get an education and be a better person,” she said.

Ms Pekeur-Sandy’s words were echoed by Nosh for Josh brand ambassador Rusell Fox who testified that at a young age he was diagnosed with epilepsy, dyslexia and seizures and doctors told his mother he would never be normal or be able to get an education.

But he said because of his mother’s patience, he is now a businessman and can drive, read and write.

“I was declared ineducate-able but look at me today. Autistic children do not have a voice so as mothers you are their voices. Besides me, Josh is living proof. You need to be their voice,” he said.

Sunkiree Veerasamy, principal at the Carbonado Energy Autism Centre in Athlone, appealed to people to change their mindset about children with autism.

She said children with autism has poor social communication.

“Parents do not understand. They have their own way of interpreting the world. All we need to do is to tap into their strength. They need support. The earlier the intervention the better,” she said.

She said parents should stop hiding autistic children or keeping them indoors like outcasts. She said if parents do not understand their children, they should seek help.

Registered counsellor Banetsi Maphunga hailed the organisation for taking the workshop to Khayelitsha.

He said children with ASD are normally labeled as mentally disturbed.

“We do not normally speak about such issues here. There is no one talking about mental health or disorders,” he said.

Nosh for Josh said it aims to establish an autism centre to assist disadvantaged parents with rehabilitation support, which is very costly, for their children.

They want to develop a Nosh for Josh training institute that will run courses, workshops through the centre via e-learning and training for caregivers of children with ASD. They also aim to expose parents to new research and developments in the field of autism and offer parents valuable tools to help with the rehabilitation of their children, including young adults, so they can have a normal life.

And lastly, they want to bring hope to the parents with autistic children, from babies to young adults.