‘Can I have a cup of tea?’ At the age of eight, these were Joshua Keshi’s first spoken words, to the immense delight of his father. With a smile on his face the soft spoken Keshi tells Health-e News that, on that day, his father proudly exclaimed, ‘My son has just spoken!’

The now 25-year-old’s father had every reason to be excited. Keshi was diagnosed with autism at the age of three, and was non-verbal.

Autism is related to development of the brain. According to the World Health Organisation (WHO) autism spectrum disorders are characterised by difficulty with social interaction and communications. The organisation estimates that, globally, one in 100 children have autism.   

It’s estimated that around 1.2 million South Africans have been diagnosed with autism. Exact numbers are hard to come by but experts agree that autism prevalence is increasing.

Unpacking autism

Dr Lebohang Mokhesi, a general practitioner who sees children with autism says signs of the condition can start from six months to three years and sometimes a diagnosis can be missed. These signs include a child avoiding eye contact, and not responding to their name by nine months of age. 

“Some toddlers develop speech and all of a sudden the speech disappears at the age of three years which is a reason for concern. A toddler should be able to mimic your smile and start babbling at least from six months. They should be able to make a sentence or two at the age of one and half years. If a parent sees delays in these, they should get their child assessed,”  Mokhesi says. 

The cause of autism is not well understood, although studies suggest that environmental and genetic factors may increase the risk of autism. Mokhesi explains that people with autism experience different challenges which sometimes involve communication problems and repetitive behaviours. 

But the condition does not affect everyone in the same way.  

“Autism spectrum disorder as it is called is just that, a spectrum. No two individuals with autism will ever be exactly the same. They have different characteristics, presentation and potential,” says Dr Sibongile Mbatha, a developmental paediatrician. 

Mbatha says the intellectual capacity of individuals with autism spectrum disorder ranges from highly intelligent to profoundly impaired. At one end of the spectrum are people severely affected by autism, who may need around the clock care and have limited social and communication ability. Other individuals with autism are able to function relatively well in society and go to school and hold down a job. 

Keshi now works as an assistant teacher at the Learning to Learn Centre, a special school in Randburg. His journey as someone who has autism was not easy. 

“I was bothered by the fact that in my early years, I was unable to talk. Growing up I was bullied and teased by my peers especially at the mainstream school where I did my primary levels,” he says. 

But things got better when his parents took him to a school for children with special needs. 

“It was only at my new school where I learned about autism. I started enjoying myself and being at school because I was among the people who understood me,” he says. 

Samuel Oluwafemi Oluwawunmi, a specialist teacher at Learning 2 Learn Centre adds that learners with autism can still progress at school. 

“You need to understand each learner and how they respond. Some may not use words to respond to you so I use audio books. Some cannot write but they can type. Also the first thing to do is to pull a routine structure as this makes life easier for them,” he says. 

The most important part is getting a proper diagnosis. But there are major hurdles. 

Barriers to diagnosis and care 

Mbatha is the head of the neurodevelopmental clinic at Chris Hani Baragwanath Academic Hospital. 

The clinic offers services to most of Soweto and some neighbouring provinces. She tells Health-e News that only about 30% of families have an idea about autism when they come for their first consultation. 

“Most families have inadequate knowledge on autism and the symptoms it presents with. Cultural beliefs like associating autism with witchcraft as one of the causes of the developmental delay in the child,” she says.

Mbatha says the clinic sees about 3000 patients a year of which about 1050 have autism spectrum disorder as a primary diagnosis. The clinic also sees children who have learning difficulties, genetic conditions, metabolic conditions, developmental delay, hearing and visual problems and those diagnosed with attention deficit hyperactivity disorder (ADHD). 

Another problem is how long families have to wait to get their children assessed. 

“The long waiting times for formal diagnosis is a problem. We have a one year waiting list for new patients to be seen. The waiting list for a first consultation ranges anywhere from nine to 18 months,” she says.

These waiting times can be attributed to the limited resources, especially in the public sector. 

“Meanwhile, we have a shortage of staff trained in diagnosis of autism spectrum disorder. There are very few hospitals that have neurodevelopmental services. There is also limited access to both speech and occupational therapy.” 

Left behind 

“Individuals with autism can live fulfilling lives and have the capacity to reach their potential if intervention is started early,” says Mbatha.

But many people get left behind because they don’t have access to education and support services after an autism diagnosis. 

This was the case for Daphne Koza’s nephew who had to drop out of school when he was only 15 years old.

“My nephew was diagnosed with autism when he was four years old in 2000. His parents took him to Chris Hani Baragwanath Hospital. He was a very hyperactive child and could also be very violent. At the hospital they were given tablets just to calm him,” Koza says.

Koza says her nephew’s situation got worse when he started school. 

“The teachers were always complaining that he was disruptive and hyperactive in class. They would send him home every now and then,” she says. 

Koza says at home her nephew would be very violent but his parents did not understand his condition.

“They did not know anything about autism and they thought that their child was bewitched. My nephew eventually got tired of the teachers who were always complaining about his behaviour and he dropped out of school just before he started his high school. He has never looked back. Now, at the age of 28, he stays at home and still depends on the treatment to calm him down,” she says.

Koza is deeply concerned about her nephew’s future prospects. She believes that if he had access to special education he too would be independent. – Health-e News