Parent tells of life with a child with autism

MBOMBELA – Imagine waking up one morning and finding your three-year-old child speechless, unable to communicate his needs to you. Imagine him suddenly becoming hyperactive and delving into a number of somewhat strange behavioural patterns. Imagine that you struggle for months to find the cause of his condition.

This is what happened to Skhumbuzo Shongwe who had to visit doctors and schedule numerous tests to find out that his then four-and-a-half-year-old son, Lwandile, was autistic.

“We ran a number of tests on Lwandile, but the doctors here in Mpumalanga told me that nothing was wrong. I then went to a neurologist in Sandton. He then performed a test and explained that my child had autism,” says Skhumbuzo.

Lwandile (7) has still not regained his speech but is improving each day and enjoys life to the full, even though he might not be lead the life of an average boy his age.

“Lwandile is a unique case, as is each child who has autism. Everyone responds differently. My child loves big crowds and that is something that normally does not fit with the personality of an autistic kid,” explains Skhumbuzo.

In the beginning it was quite difficult for this father, but through thorough research and a lot of care and attention, he knows how to handle Lwandile’s behaviour. This includes uncontrollable screaming, hugging strangers and taking food from someone’s plate at a restaurant.

“It is a blessing to have Lwandile as he is extremely intelligent, but he is not aware on how to react in certain social situations or contexts. He is also not afraid of danger, which in itself can be very harmful to a child,” he adds.

Lwandile cannot communicate verbally and will bring objects to his family or tug at a person’s shirt to attract attention.

“He will grab me and take me to the kitchen and point at the box of cornflakes to show that he is hungry. In the beginning he only ate specific things and we would never know what he wanted to eat,” remembers Skhumbuzo.

Like any child, Lwandile also has his ways of showing his displeasure or excitement, something that his father knows all too well.

“He would scream and wave or bite his wrist to show displeasure. To put him at ease I would play him a Joyous Celebration Gospel DVD. He loves mimicking the melodies.

“He has his own safe spot where he likes to go to. Every autistic child is different but they all like a certain place where they feel comfortable. This could even be at the neighbour’s house, in which case it would be best to explain the situation to those in close proximity to one’s home,” explains Skhumbuzo.

Autism is misunderstood and a lack of knowledge is derailing progress on understanding this condition.

“One of the biggest problems is that many communities do not know that autism exists and they believe that the kid is mad. Sometimes they will even chain the child like a dog, to keep the extreme hyperactivity at bay. It’s really sad.”

A very interesting aspect of autistic individuals is that they do not respond well to any changes in their lives.

“Lwandile was having a number of problems at school and at home as he was very frustrated. I then took him to the doctor for his routine check-up and the doctor asked me if anything had changed. I then told him that my son had a new teacher and then the problem was pinpointed. Comfort and routine are extremely important,” he reiterated.

“Lwandile shines in swimming, horse riding and puzzle building. Those are his three most-favourite activities as they keep his mind stimulated. He sometimes rides on my back and then I mimic being a horse. He loves it.”

Speech normally returns from the age of 16 and from there on Lwandile will be able to live a more normal life.

There are also numerous challenges that Skhumbuzo faces each day. Firstly there is no medication in public clinics or hospitals which means that parents need to pay an arm and a leg it. “What do single mothers in rural areas do then?” he expresses.

Secondly there are no general doctors in the public-health sector who understand autism.

Thirdly, there is a definite and serious lack of special-needs schools in the province.

“Mpumalanga has 13 000 autistic children but only 38 go to school. It is absolutely shocking. The government needs to stand up and aid in community awareness and provide social grants. It is crucial,” Skhumbuzo appeals.

“I was on air at Ligwalagwala FM to give a talk on autism and you would not believe how many calls we had in that hour of struggling parents who did not know how to cope with their autistic child,” he says.

*World Autism Awareness Day is on April 2.