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Real life stories of living with autism

Posted  April 2, 2019

When Kitso Mosiane was 4 years old, he got lost in a crowd of about 800 people at a public function. Being autistic, he was hyperactive, and couldn’t verbalise to anyone who he was or where he was from. “I was terrified,” recalls his mother Veronica Mosiane. “Luckily, security found him near the stage as he was headed for the sound equipment.”

Kitso is 8 today. He attends a mainstream school and is able to speak normally, thanks to years of speech therapy, although he still bites his knuckles when he’s anxious and gets highly irritable in public spaces. “We minimise sensory overload because it can take days to calm him down and it’s important to ensure that he does not regress in different areas,” says Veronica.

Autistic children often wander off, she says, and if the child is non-verbal, this can have devastating consequences. “Kids are found drowned or abused. I always imagined such a thing happening to him. An autistic child is so vulnerable in an uneducated society. Any fool can take advantage of them. Yet an autistic person can be really smart but with uncommon personal traits,” she says.

What is autism?Autism, or more correctly, autism spectrum disorder (ASD), is an umbrella term for a variety of neuro-developmental phenomena that affect the way people react to and understand the world around them, explains Tania Melnyczuk, collaboration director of the Autism Strategy Network. “Autism is on a spectrum because one autistic person is very different from another autistic person. Some have very good verbal ability, for instance, and others are completely non-verbal. But what is common to them all is that they have difficulty with social interaction, communication and learning,” she says.

The prevalence of autism has not been scientifically determined in South Africa, but globally, the rates are about 1% to 2%. Autism South Africa, a research and parent support group, estimates that about a million people in South Africa have autism, based on global statistics.

The causes of ASD have also not been clearly established by the scientific community, but both genes and other influences, such as the environment, appear to affect crucial aspects of early brain development. “Autism is probably caused by lots of different things. A bit like epilepsy, we are likely to find hundreds of possible causes,” head of the Centre for Autism Research in Africa Prof Petrus de Vries told Africa Check in May last year. As there’s a shortage of trained professionals who specialise in autism, many autistic people go undiagnosed or misdiagnosed.

autism

Early diagnosisThe earlier the diagnoses, the better the prognosis for an autistic child as they become adults. Early diagnosis also enables parents to manage the condition better. In the case of Rosemary Shezi, whose son was diagnosed with autism at 3, she was initially told by doctors that she should wait for him to reach his development milestones, as boys could be delayed in reaching these.

“We noticed that his speech after the first year was slowly diminishing, that he didn’t like being cuddled or touched, refused for his hair to be combed, would climb on top of head rests of couches in the lounge, demand to be picked up by a person sitting next to a window and then would climb onto that person’s shoulder and cling on to window burglar bars. He would climb on cupboard counters, and was impossible to potty train. He would make unusual sounds, and run out of the house into the street. He would bang his head against the wall, bend cutlery and break crockery. He would mess himself with food, which he gobbled down and wouldn’t stop eating. It was very stressful, because he was also unable to ask for anything and we would have to guess what he wanted,” says Rosemary.

“Difficulty finding placement in a school was the worst torture, being told he will never learn anything and that we must just keep him at home with pets. We couldn’t attend church services or other kids’ parties because of his disruptive behaviour. We would feel totally hopeless at times,” she says.

Common to parents of autistic children is the ceaseless hunt for a “cure”. “We looked for alternative methods to ‘cure’ him, because we were in denial of this permanent condition, and also because of peer and family pressure to ‘cure’ him,” says Rosemary.

TreatmentThe autism community is divided on the question of treatment, with some subscribing to Applied Behavioural Analysis (ABA), based on the premise that desired behaviors can be taught through a system of rewards and consequences. “My second son Aaron, who was diagnosed with autism at 17 months, is now in a mainstream school and scored an average IQ, having had the benefit of the ABA programme from early on. My elder son David, also autistic, was not so lucky. Autism has not been kind to him,” says Ilana Gerschlowitz, founder of The Star Academy, affiliated to the Center for Autism and Related Disorders in California.

According to Autism South Africa, autism is not curable. “Interventions and therapies can assist with the way that an individual is able to cope with the way autism manifests in them, but it will always be a part of the individual that they will need to manage,” says Sandy Klopper, its national director.

Prof De Vries agrees: “The priority needs to be to make parents and carers know what autism looks like so they can seek help. Next, primary healthcare providers should be trained to screen for autism and related disabilities. After that, ways to improve the lives of children with autism, and their families, must be found.”

Like other children, autistic children can bring moments of great joy to their families. “A breakthrough or two would bring so much happiness. He became the glue of the family,” smiles Rosemary.

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