Popular shows like The Good Doctor and Love on the Spectrum have made some strides in breaking the stigma attached to Autism Spectrum Disorder (ASD).
But according to parents and officials, it remains largely misunderstood and individuals on the spectrum remain stigmatised.
Autism has a wide spectrum from high-functioning individuals to those with more serious cognitive impairments.
The accepted categories are Asperger’s syndrome, autistic disorder and pervasive developmental disorder.
In other parts of the world, the Rett syndrome, childhood disintegrative disorder and Kanner’s syndrome are also considered.
April is Autism Awareness Month, with Monday 3 April, being Global Autism Awareness Day.
Provincial minister for social development Sharna Fernandez says: “This is a day in which we raise awareness about autism and celebrate individuals who are on the autism spectrum. Autism spectrum disorder is a neurological condition that affects communication and behaviour. The autism spectrum refers to the variety of potential differences, skills and levels of ability that are present in people on the spectrum. There is no cure, but there are steps that can be taken to reduce symptoms and improve thinking abilities and daily living skills.
“There is still a significant cloud of stigma around autism spectrum disorder, with many people still not fully understanding what it means, or even how it may present in an individual. I urge parents to be aware of signs that their child may be on the spectrum, as there are non-invasive interventions that can be implemented from an early age. This can provide children with the necessary tools to become fully integrated members of society when they are older,” says Fernandez in a statement.
Jasmine Williams, whose son has been diagnosed with Asperger’s syndrome, says she and her family lived in denial due to the huge stigma around the disorder.
“We saw small signs when he was younger. He did not do well with loud sounds and was easily overstimulated. I remember one occasion where we had family over and my aunt was getting frustrated that he was not responding to her and called him stupid,” says Williams.
This is one such incident that kept the family from getting a diagnosis.
“This was so many years ago. At that time, there was so little information about autism. People were so quick to label any learning disability as retarded and I admit this kept me in denial. I did not want people to look at us as if we were raising a retard. I hate that word. Looking back, I realise now that I could have gotten him more help sooner to help him navigate this disorder in his younger life,” she says.
Her son, who is now 15 and in a mainstream high school, had developed communication skills later in his life but showed signs of extreme intelligence for his age.
“One of the common aspects of ASD is communication problems. But this does not make them unintelligent. In fact, my son was reading and drawing and performing well with educational toys and games well above his peer group by the age of five,” she says.
Another parent, Adeline October, says her 10-year-old daughter, who attends a special needs school, is receiving the best attention, able to assist her with the skills she will need later in life.
“It was a big adjustment for us to learn how to communicate with her. Everything was fine and her development seemed normal up until three years old. We were referred to several specialists and finally, a diagnosis was received. We immediately did as much reading as we could to learn what we could, but there is still so much we need to learn to help her,” she says.
“She is doing better socially now, but there are still instances when she can become overwhelmed. We are learning how to see the signs of this and react quicker. It is challenging, yes, but she is not a burden. Autistic children are awesome. They just need a bit of patience and understanding.”
October says her goal is to ensure her daughter becomes a functioning member of society and that she follows her dreams no matter what.
“Watching shows like The Good Doctor, we can see that they can do anything and I tell her that every day. Not all autistic people are the same. There are varying levels of the disorder, but there are treatment options for all of them,” she says.
There is no cure or known cause for these disorders.
In a 2020 study conducted among one million Western Cape children by Pillay Duncan and de Vries of the University of Cape Town, “from a population of 1 154 353 children attending schools in the province, a total of 940 children with a diagnosis of autism spectrum disorder were identified, representing a rate of 0,08%.”
The authors continue: “The prevalence of autism spectrum disorder in South Africa is unknown and, to date, very little research has been performed within school systems that could inform the rates, distribution and profile of needs of children with an autism spectrum disorder in education.”
The Western Cape Department of Social Development has allocated R61 million in 2023-’2024 to 62 social service organisations that provide support to people and children with disabilities and their families.
These include organisations supporting those with autism and their families, like Autism Western Cape, Education and Training Hub for Autism Needs, based in Mossel Bay, and Iris House Children’s Hospice in Bellville.
The department subsidises special care centres for children with disabilities, which includes those providing for the needs of individuals with the ASD, like Autism Connect in Mitchell’s Plain and Leolan Academy in Mossel Bay.
The department also spends R30 million on funding four child and youth care centres for children with profound disabilities in alternative care.
It also manages the Sivuyile Residential Facility, which accommodates children and adults with severe and profound, physical, and intellectual disabilities.
