Living with autism: ‘Every day is a challenge’

She had reached all her milestones when a child should – she could sit independently when she was meant to, and could even say a few words, as babies learning the foundation of communication skills commonly do after they reach a year old.

But just as Inam Silwanyana reached 18 months old, her parents began to notice fundamental, jarring changes. All of a sudden, she stopped talking – even the basic words she had learnt up until then, gone.

“She started babbling like a baby,” her 34-year-old mother, Vezi Silwanyana, recounted. “Then she would rock back and forth on her feeding chair … I found that weird, but didn’t think too much of it at first. When she started flapping her hands in front of her face, I started googling.”

Little Inam, who is turning seven at the end of the month, laughed heartily as she flicked through cartoon images on her iPad and playfully fell back on her colourful play mat. She is seemingly happy and healthy – and has been living with autism since her diagnosis just after her second birthday.

According to the SA Society of Psychiatrists, autism spectrum disorders (ASDs), often referred to simply using the umbrella term ‘autism’, or ‘being on the spectrum’, incorporate disorders previously diagnosed separately – “classic” autism, Asperger syndrome and pervasive developmental disorder not specified.

They are developmental disorders linked to early brain development and symptoms include impairment in social interaction and developmental language and communication skills, combined with rigid, repetitive behaviour, online health resource WebMD explained.

The disorder itself covers a large spectrum of symptoms, skills deficits and levels of impairment.

And while Inam may be classified on the milder side of the spectrum, the significant improvement she has made by today – regaining some speech, boasting three-word sentences and becoming increasingly engaged in day-to-day life even with the most menial activities – has been hard won, and one her parents have actively worked on every single day.

Pregnancy

Rewind to when Silwanyana was 19 weeks pregnant and her pregnancy encountered its first complication when she had to be hospitalised for four months and placed on bed rest due to an “incompetent cervix”. She doesn’t know whether it was her complications during pregnancy that caused it, “or the MMR vaccine against measles, mumps and rubella that Inam had just before reaching 18 months,” she says.

Silwanyana knows the vaccine-autism link is controversial and fiercely contested by scientists, and one which many have gone to lengths to disprove in recent years, after a 1998 study first suggested that such a link existed.

“All I know is all these changes started as soon as she turned 18 months. Up until then, her health had been perfect and she had reached all her milestones,” she said.

That’s the other difficulty about the disorder – the causes are not clear, although genetics is believed to play a role, as well as environmental factors.

Last month was Autism Awareness Month and, in Cape Town recently, at the first conference of its kind, to discuss the prevalence of autism spectrum disorder, it emerged that only 10% of people with autism in the country are diagnosed correctly.

Which is why the family tried to cover their bases, getting second, third and fourth opinions from medical doctors, who all said Inam’s symptoms pointed towards autism.

But first they tried other interventions, advised by her primary paediatrician at the time.

“The recommendation was that maybe she should go into a schooling environment like a preschool and that the language issue could be because she was at home and not with other kids. So we enrolled her in a school. But the school picked up that she was playing alone … at that stage there’s a thing called ‘parallel playing’ where the child can play on their own but there will be some interaction with other kids – she didn’t have that; she was in her own world,” Silwanyana said.

And nothing came of her speech development. A second paediatrician ordered a CT scan to examine the structure of the brain – but that too came out normal. They were then referred to a child psychiatrist who performed another assessment, and then to an educational psychologist who told them the crushing news.

“We were told us that it was all pointing to autism, that it was a lifelong condition and our child would always need someone looking after her and that she may or may not talk.”

At that point, Inam had also started having high-pitched vocalisations – and would randomly screech out.

“I’m sorry...” Silwanyana politely excuses herself, as tears start welling and burning in her eyes, turning them red, and her voice trails off emotionally.

“I was devastated … and also there’s a huge component of disbelief. Even when speaking to family, there’s not much understanding about this disorder and at first there was a bit of talk that maybe this is a cultural thing. What do you call it when you refuse to believe something is happening? That was me; I refused,” she continued.

But the more she read up on this little-known disorder in the country, the more she realised that in other countries overseas it was definitely prevalent and widely researched, with many advancements already in the field.

“My husband (Khulani) immediately got into action mode – I was still very emotional about it and that was a challenge on its own. We had to find a schooling environment that would take her in. Mainstream schools – our experience has been that once they hear autism, they immediately shut down. There were one or two remedial or ‘special needs’ schools that would take us, but it didn’t feel right for us,” the Johannesburg-based mother added.

“My biggest fear at that point, and still is today, was, how would she survive in this world if she could not speak? How would she function in a world where she would need to be able to communicate her needs? There was a day when she wouldn’t stop crying and she couldn’t say to me this is the pain I am feeling, you know?”

Inam has been on applied behaviour analysis (ABA) therapy through The Star Academy for just about two-and-a-half years now.

Schooling

While she attends a mainstream preschool, she also goes to classes with her facilitator from the academy, Desray Nay, who is a board-certified autism technician.

“ABA is based on two practices – skills deficit and behaviour. We try to fill the gap where there is a skills deficit, be it a language deficit or a social deficit. We also try to replace problem behaviours with alternative behaviours.

“For all our kids [at the academy] we have eight curriculums. Every child is different and so we have a tailor-made programme for the child and we try to make it as natural and fun as possible, put in a lot of play,” Nay said.

But it was in their research into the disorder and what was available locally to parents with autistic children that the Silwanyana couple, together with Verna Hlabangana and Jamila Metedad, formed the Inam Foundation Autism Advocacy Group to create awareness about the disorder and also try to support other parents in need.

“Through our interviews while setting up the group, one of the responses from parents was that they felt there weren’t enough schools that were adequately equipped to deal with the spectrum of autism. And it’s not just about the academics, Inam has had to learn how to brush her teeth, how to eat – there are some kids right now who are older and still have to learn those skills,” Silwanyana said.

And it’s not just the academic aspect parents have to consider, but a dietary one too, among a host of other changes needing to be made.

“Research has shown there is a whole biomedical treatment approach too, so what one eats is also important. Inam is now on a gluten-free, no-dairy diet and, oftentimes, I have to prepare two separate meals for dinner, one for her and the other for the rest of us. And that doesn’t come cheap,” she stated.

The family said they knew they were also in a privileged position to be able to afford supplements that they import from overseas every three months, that set them back R20 000. And they know that not everyone can access these varied interventions to help improve the quality of life and development of their child.

“During my research into schools, I found a school and a home in Midrand where children are left there – sort of like a boarding school, and their parents leave them there because they do not have the skill or ability to care for them at home. And my goodness, I just thought that if my kid could not talk or was not potty-trained ... I don’t know what’s happening in that environment. That is the reality for a lot of parents right now who have to leave their children in others’ care.”

Emotional

But there is a costly emotional aspect too.

“It’s tough, you know,” she said with a sad smile. “Every day is a challenge. She bit me recently; the only time she had done it and for me it was major – and it’s one of the things where it’s just tough.”

Silwanyana added: “Thank God we’re in a gated community, but at some point we found her sitting behind the wheel of an SUV…” her voice trailed off to a hoarse whisper as tears welled again.

“If that person had gone into reverse … and with her inability to communicate… We’ve now had to ensure everything is locked up, because if she leaves, how do we find her? She won’t be able to tell anyone our numbers.”

The disorder is isolating too. And Silwanyana has had to opt out of going to certain children’s parties or restaurants where Inam may be uncomfortable.

Her daughter’s condition has transformed Silwanyana into something of an advocate. She has quit her formal employment in the healthcare sector to be more present in the running of Inam’s day-to-day life.

“The academic component is very important for me. Inam’s learning to read some words and count a few numbers has gone a long way. For me, it’s about how we can turn around this situation and advocate inclusivity in schools; for mainstream schools not to immediately block us out.

“How do we get to a point like other countries where certain interventions are covered by medical aid? I’ve heard stories about parents who have to get a second bond on their house to be able to pay fees,” she said.

Inam is currently at Grade R level, however, according to her age, she should be at Grade 1. And so now their next hurdle is finding a mainstream school that will take her in for Grade 1. But, all the schools in their area of Fourways try giving a diplomatic answer as to why they cannot accept an autistic child.

The group’s main objectives are creating awareness and education for families, friends and communities about the disorder; advocating inclusivity in schools and raising funds to support other families in less privileged positions.

“Lastly – support. A lot of parents are struggling out there on their own, and someone who can truly empathise with me is someone who is going or has gone through it, because you don’t know what it’s like unless you live it. It’s still early days but we’re having conversations with a lot of people, galvanising resources. Even if we touch one or two families, then it would have been worth doing it.”

	Vuyo Mkize Health journalist City Press p: +27 11 713 9602 w: www.citypress.co.za  e: Vuyo.Mkize@citypress.co.za
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