Stories from the ground: mother shares the complex journey of raising a child with autism

My name is Sarah Mautjana, a single mother of two beautiful children. I reside in Johannesburg. 

It was in 2021 when I discovered that my first born son Kian, who was born in December 2019, is on the autism spectrum. 

When he was born he developed normally like all the other toddlers, she was babbling and crawling, I did not notice anything unusual. Kian was around one year old when I started noticing that he was very anti-social.

I thought that was because he was born just before the COVID-19 era, three months after he was born the country went into lockdown. Obviously that time we were not going out and we spent most of our time indoors. He did not interact with a lot of people. I am a single parent so it was just me, him and his granny.

I spoke to Kian’s paediatrician about his anti-social behaviour and he brushed it off. I told him that I was also worried as it looked like Kian’s lower mouth was weak and his tongue was always hanging out. That too was brushed off and the paediatrician said maybe it must be the dummy use. I had stopped him from using the dummy by November 2020. 

Getting to know about autism

Autism month is commemorated every year in April. In 2022,  I remember I was scrolling through Instagram and I kept seeing these posts about autism popping up. 

Moja Love [the TV channel] also had a show on autism and they were speaking about kids with autism and some of the characteristics that they have. That time, I had never even heard about autism, I didn’t know what it was until that point. 

That was when I realised that some of the things Kian was doing fell within what was mentioned. He had a pram, he would sit for hours and just spin the wheels. If you gave him a car to play with, he would play with the wheels instead of doing the ‘vroom vroom’ part. 

He would sit in front of the washing machine and just watch it. Kian was scared of  new environments, and new people, and didn’t like loud noises. 

Kian wasn’t making eye contact or responding to his name. His speech was gibberish, he was making sounds but not forming any sentences. At that point I decided to change the paediatricians because some of these things were raised and the paediatrician  brushed them off. 

The first time I walked into the new paediatrician’s office, he looked at me and said, your child is on the spectrum, we just don’t know where. 

I asked what the next step was, and what I should do. He referred me to an occupational therapist. Luckily I live in a place where there is a therapy centre just down the road. I took him there, he started occupational therapy and this is where it got tricky because, at this point, I did not have a formal diagnosis. 

I was confused as to what to do in terms of his feelings and social behaviour. He was two and would soon turn three. My worry was, how do I get him integrated into the social environment. I was told to take him to a preschool that deals with children with autism for a bit and see what happens. 

I put him in a normal pre-school, but it did not work out. It was a mess as he was scared of noises, scared of the sounds. At the end of that year, I found a special school that deals with children with autism. He has been happy there and speech therapists are incorporated into the curriculum. Obviously the fees are very high, you end up paying more than R9000 a month which is a bit steep when you are a single parent.

Financial impact 

It has not been an easy journey, at first when I saw the signs, I was in denial. I thought maybe it is something that would just go away with time. People were saying boys are always slower but I knew something was not ok. The biggest problem is that there are no resources for children with autism spectrum. I am paying R9450 for Kian’s school fees and he is just four years old. This has greatly impacted my finances.  

Even though he loves school, he catches the flu very easily. They took out his tonsils last time hoping it would work. Between April and now Kian has only been to school seven times because of his health and I have been paying the full amount. So I had to come to the decision to pull him out for now. 

He is going to carry on with occupation and speech therapy on the outside. This will cost me about R7000 and I will get a helper to look after him during the day. I am suffering and currently he is not even verbal. We had to go and see a neurologist which is about R3500 that you have to pay for cash.  By the way, the medical aid does not cover any of these as autism is not seen as a chronic disease. If you go via state resources you find yourself only getting one therapy session a month.