How to relate to autism in a meaningful way

Professionals, facilities and knowledge are lacking when it comes to autism, resulting in children such as Sboniso Hlophe missing schooling for much of their formative years.

Sboniso Hlophe, a 13-year-old with autism, left his home in Kwanyuswa in Bothas Hill in January to go to school for the first time in six years.

Sboniso, who has been non-verbal since birth because of his autism, has always been eager to go to school, explained his father, Syaphila Hlophe.

When Sboniso was seven, he went to UkusaKwabasha Primary School, which is across the road from his house, to start grade one. On his first day, he was sent home.

“Before the day ended, the principal of the school called us to discuss Sboniso’s behaviour,” said Hlophe, sitting on the porch of his two-room house. “He was very troublesome … the principal said he can’t cope, he doesn’t take orders, and he doesn’t listen to his teacher.”

Autism South Africa defines autism spectrum disorder (ASD) as “a lifelong condition that affects the way a person communicates and relates to people around them. People with an ASD have difficulty in relating to others in a meaningful way.”

According to autism advocacy organisation Autism Speaks, there are many autism subtypes that are mostly influenced by a combination of environmental and genetic factors. Not all autistic people have the same strengths and weaknesses. Some are severely challenged, while others require little or no help.

Autism South Africa explained the extensive signs exhibited by autistic children, which include difficulty in communicating (some children don’t talk at all), making friends, relating to others and a lack of awareness of danger.

23 March 2019: Sboniso Hlophe, who is autistic, plays with his soft toys at home in Kwanyuswa.

‘Children like him’

After a week of schooling, Sboniso was taken out of school. Hlophe said the principal at UkusaKwabasha Primary helped them look for schools in the province that would accommodate Sboniso.

When he was eight and nine, they tried to get him into several schools but failed as the schools were either unaffordable or couldn’t accommodate autistic children. “We tried another school in [town]. Then we realised that it is not the right school for children like him.”

Hlophe said they eventually gave up, and when Sboniso realised they were no longer talking about finding a school for him, he decided to teach himself. Every morning, Sboniso would wake up, put on his school uniform, walk up the hill and sit under a tree facing the school. Hlophe said he would write notes and pretend to learn. “He will [sit under the tree] until school is out. That showed how he wanted to go to school.”.

Bonisiwe Hlophe, 35, said of her son: “I just thought he was going to talk, but he didn’t. And time went by, then I realised that he will never talk.”

She said she went to a clinic to get medication for him and the nurses gave her hope that her son would be able to talk. Sboniso has been attending speech therapy at RK Khan Hospital in Chatsworth, KwaZulu-Natal.

Outside help

When Hlophe’s employer, Dawn Harrison, heard that Sboniso was not going to school, she sought help on Facebook. A non-profit organisation called The Angel Network saw Sboniso’s story and decided to help. The organisation, which has received 3 000 donations and helped 10 000 people to date, raised R12 000 for him.

Angel Network founder Glynne Wolman told New Frame that after several media platforms ran the story, more people wanted to help. “Two businessmen in Durban called me. One has an autistic child and said I cannot give you time, I can give you money. Here is R50 000.”

The organisation managed to raise more than R70 000 for Sboniso’s education. Harrison administers the account on behalf of the family and uses the donations to pay for Sboniso’s school fees and transportation.

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Autism South Africa national education facilitator Vicky Lamb said that the big challenges autistic people face range from diagnosis and insufficient schools to a lack of knowledge about the disorder.

“There are not enough schools for our children. Even our children who can cope in a mainstream environment, there are not enough schools willing to take those kids on and work with them and support them. Where our children are taken into schools, [they] often don’t get the support that they need within the schooling environment,” she said.

“There is not enough knowledge about autism out there, so a lot of our children go undiagnosed or, if they are diagnosed, they get diagnosed later on and get support later on.”

Lamb said Autism South Africa is working with the government to ensure that knowledge about autism infiltrates different universities and make sure that it is taught thoroughly.

23 March 2019: Sboniso filling a bucket with water at his home in Kwanyuswa.

Not enough professionals

Lamb pointed out that there are not enough professionals in South Africa with experience in autism. However, she acknowledged that there is some progress being made in dealing with the challenges.

“Within Gauteng, the MEC for education is very passionate about autism. He has opened seven autistic schools in the province.” Panyaza Lesufi is Gauteng’s member of the executive council for education.

During the launch of Autism Month in Pretoria, Lesufi said there are 13 autism units at different schools in Gauteng.

Lamb highlighted the ineffective implementation of policies designed to help integrate autistic people into work and society. “We’ve got the most incredible policies and if they were being used properly, we would see a very different country. People on the ground and the government are not using them [the policies] as they should be used.”

Autism knowledge skewed

In his presentation at the 2017 Regional International Meeting for Autism Research in Africa, child and adolescent psychiatry academic Petrus de Vries said there were 25 000 papers written on autism globally.

“The majority, 11 000 or so, were written from North America. The second-largest continent [Africa] had the fewest papers on autism. [There are] 53 papers ever written about autism in subSaharan Africa, [with most from South Africa],” he said.

He said that although the majority of autistic people live in developing countries, there is insufficient literature produced there. He said that “90% of what we know about autism comes from 10% of the world’s population. Even though 90% of people with autism live in low to middle-income countries, only about 10% of the literature comes from the low to middle-income countries.”

Meanwhile, Hlophe said he can see some improvement in his son in the few months that he has been at school and on the pills he is taking.

“The pills calm him down. He listens and understands. When you tell him to do something, he does it. But if he doesn’t want to, he won’t do it,” he said, looking at Sboniso who was leaning against the wall of the porch.

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