Brothers Caleb and Nathan Govender with their parents, Dian Naidoo and Argaish Govender.
Image: Supplied
A Chatsworth mother, who has had many sleepless nights not knowing what could be wrong with her first-born son, spent hours researching what the cause could be. This included familiarising herself about autism.
Dian Naidoo said the research also prepared her for when her second son was diagnosed as being on the spectrum.
She said her eldest son, Nathan, who is now six years old, was an “easy baby”.
“We didn't experience the exhaustion that came with having a newborn, or small child. He was always happy, smiling and playful, even with people he didn't recognise. He ate and slept well, and almost never cried. Now that I think about it, it was almost like the calm before the storm.”
Naidoo said everything changed when Nathan was around two years old.
“He stopped smiling. He would space out all the time and he became extremely quiet. Nathan began stimming constantly, wouldn't make eye contact, was irritable all the time, and certain sounds and surroundings scared him. He was a completely different child. Suddenly it seemed as if he couldn't understand me. He had a limited vocabulary at this point, maybe 15 words in total.
“I spent countless sleepless nights researching what could be wrong and how to help him. Everything led me back to autism and from what I had learned, early intervention was extremely important,” she said.
Naidoo said she discussed her concerns with her husband, Argaish Govender.
“However, he was adamant that Nathan needed time to develop at his own pace but he followed my lead nonetheless. We first took Nathan to an audiologist to rule out any hearing problems, which could have affected his speech. His hearing was 100% fine.
“I then made an appointment with a pediatric neurologist. However, the waiting period was a further six months but I was desperate and could not wait any longer. I found out that she also did the assessments at Action in Autism (AIA), which runs a free monthly diagnostic clinic. I got an appointment to see her within a month. There was never a time I wanted to be wrong but this was it,” she said.
At age three, Nathan was diagnosed with severe autism (level 3) and was classified as non-verbal.
“We later found out the 'spacing-out' was actually him experiencing silent seizures. I didn't know such a thing existed and I cannot explain the guilt we felt. He was also diagnosed with a sensory processing disorder, which is common in children with autism.
“When we went home on the day of his diagnosis, following our daily routine and after putting the children to bed that night, I cried hopelessly. I cried not because my child was different but because there was immense grief that came with an autism diagnosis.
“I grieved for the future I had planned out in my head. I cried because for the first time, I didn't know what to do or what to expect and at that point. I didn't know anyone from the autistic community. I was scared for Nathan's future. However, I swore to become his greatest advocate, his voice until he found his own, his protector, and to shield him against the world,” she said.
Naidoo said the next day she put on a brave face and began an epic mission to get help.
“I can laugh about it now but at the time it was an all-consuming mission where nothing else mattered. I arranged appointments with an occupational therapist, and speech and language therapist with various schools, and we continued to see where we trialed medication. While waiting and preparing for all these therapies, I started our own at home.
“I didn't know what I was doing at first but I didn't give up. I kept researching and asking questions. I reached out to strangers who were once in my position. Two months later, we enrolled him at the Colours of Bliss Autism Centre where the amazing team has been working with him ever since,” she said.
Naidoo said her second born, Caleb, now four years old, was diagnosed with being mildly autistic (level 1).
“Since he was just a few months old, he accompanied us on Nathan’s appointments to the pediatric neurologist. We were told there was a 10% chance that the sibling could also be on the spectrum. However, I was uncertain if he was also on the spectrum because he mimicked everything Nathan did.
“He only spoke at two and a half years old. His speech had not been fluent although his understanding had always been excellent. Caleb did not stim, didn't have any food aversions and not many sensory issues either.
“However, he began lining up all his toys according to colour, shape and size and had frequent emotional outbursts. He had trouble moving from one activity to the next and simply couldn't sit still or stop talking, which was exhausting him. One day, at Nathan's appointment, the pediatric neurologist observed this and he was subsequently assessed,” she said.
Naidoo said when Caleb was diagnosed they were not as greatly impacted by the news.
“We already had support from the autistic community. We also knew what to do and what to expect. We already had a strict routine and balancing act in place. I think it was more of a relief this time around because of that initial uncertainty.”
Naidoo added that autism could be unpredictable.
“We have experienced many challenges with Nathan, especially in terms of regression. Just before he turned four years old, he lost the few words he had. He is now completely non-verbal. He also often elopes when we are in public places. Another challenge is his hypersensitivity to sounds. Certain sounds trigger a meltdown. We got him headphones, which he refuses to wear but it's something we are working on.
“Caleb has no sense of danger, so we usually do social stories to show him the consequences of dangerous behaviour and what he should do instead. With both boys, we continue to persevere and provide them with the required support and tools,” she said.
Naidoo added that there have been successes.
“Nathan is now toilet-trained and eats independently. That has been a huge success for us this year. His understanding has improved and he also follows simple instructions. Caleb has started play school and has become a social butterfly. He loves school and interacting with his friends. His speech has improved tremendously.
“We have also found a good support system at Colours Of Bliss. The principal and staff have been good to us. They have a parent support group and all the parents there are at different stages of their autism journey.
“When we have a difficult day, I know I can turn to them. I look forward to the meetings because I know every person there knows exactly what we are going through or may have already gone through it and can turn to them,” she said.
She added that there should be more awareness about autism.
“Just like everyone else, the autistic community wants to be included and accepted. Like all parents, we also want our children to have a well-balanced childhood and social experiences as well as equal educational and career opportunities.
“Furthermore, autism rates are increasing due to more research being done, better diagnostic capabilities, and more awareness surrounding it. Therefore, there is a need for this awareness. There are also undiagnosed adults wondering why they are the way they are, and being misunderstood their whole lives due to a lack of awareness and information,” she said.
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