'My kid is brilliant. He just can't speak my language' - Autism under the spotlight

25 April 2018 - 12:30 By MADELINE HARVEY AND DAN MEYER
Professor Petrus de Vries from the psychiatry department at UCT.
Professor Petrus de Vries from the psychiatry department at UCT.
Image: Maddie Harvey

In South Africa only 10% of people with autism are correctly diagnosed. This emerged in Cape Town at the first conference held to discuss the prevalence of Autism Spectrum Disorder or ASD.

The conference took place this week at Valkenberg Hospital and was hosted by the University of Cape Town to mark Autism Month‚ which is observed globally in April each year.

ASD‚ according to a UCT statement‚ is a neuro-developmental disorder affecting at least 1% of the population of all ages worldwide. While the World Health Organisation has recognised ASD as a global public health priority‚ in South Africa there is little awareness about the disorder.

The conference brought together medical professionals‚ researchers‚ government‚ NGOs‚ and stakeholders from the country's autism community to discuss local research and available services for sufferers.

Professor Petrus de Vries from the UCT department of psychiatry noted that just 10% of people living with autism in South Africa were correctly diagnosed. As a result‚ families struggle to access the educational services needed for children and it is difficult for adults to find accommodating spaces in the wider community.

He also noted with concern that South Africa had contributed very little to the global research literature on the subject‚ with only 28 South African authors ever having published articles in academic journals.

Keri Delport‚ director of Autism Western Cape‚ said their Early Learner Booster Boxes helped parents give their autistic children the love and care they need. The organisation also introduced school readiness kits in 2014 and kits for adults in 2016.

Carmen Walker‚ who works for an NGO called Autism So What‚ has a child living with ASD. She described the difficulty of interacting with him but urged people not to give up.

“No matter what they present‚ there is so much more to them than what we see‚” she said. “My child is brilliant‚ he just doesn’t speak the language that allows us to see it.”

Bernice Daniels of the Western Cape education department said they have a programme to provide training for teachers in mainstream schools. A new requirement in the teacher training curriculum is for all educators to have basic skills in special needs education.

“The goal is an inclusive society where everyone feels valued and included‚” said Daniels. “This starts at schools.”

But Chris Breedt‚ who is autistic‚ noted that the forum itself was “a bit like being at a feminism discussion led only by men.”

Breedt stressed that it was vital for autistic people to be included in the conversation.

“It's hard for us to have our voices be heard – we have difficulty participating in the academic world. Being able to become part of the research teams is a big thing for us now‚” Breedt said.