Autism is a complex and often misunderstood condition that affects millions of people worldwide. It’s a neurological disorder that impacts how individuals interact with the world around them, making social communication difficult.

Autism is a spectrum disorder, meaning that each person with autism experiences it differently. Some individuals may have difficulty with verbal and nonverbal communication, while others may have repetitive behaviours or intense interests in specific topics. It’s important to understand that these differences make each person on the spectrum unique and special.

By sharing personal stories and experiences, we can increase understanding and acceptance of those with autism. We can work to create a world that is more inclusive and supportive of individuals on the spectrum and celebrates their differences rather than stigmatising them. So, on World Autism Day, let’s take a moment to reflect on the unique experiences of those on the spectrum and work towards creating a more accepting and supportive world for all.

In this article, we hear from Kitty Viljoen, a mother of an autistic child, who shares her personal experiences and reflections. She sheds light on the challenges of raising a child with autism and highlights the joy and love that comes with it.

“I imagine that to be autistic must feel like arriving in a city in China or somewhere where one doesn’t understand the language or culture or any of the body language and trying to make sense of every single thing, feeling lost and scared and alone a lot of the time. The senses are jumbled, there is too much information, and things that seem normal to neurotypical people, like a baby crying, or cutting one’s nails, are painful and very frightening. This can bring on anxiety or a total meltdown. 

My son Danny was diagnosed with autism at 2 years and attended The Quest school in Port Elizabeth as a boarder from the ages of 6 to 18.

He is on medication for epilepsy that he developed when he was 18. He also suffers from anxiety. He works as a labourer on the farm where we live and being busy and stimulated in nature calms him. He is the only adult from his school that works and is part of a team this had a huge impact on his mental state.

He loves goats, Toyotas, chocolates, sweets and chips, salt and vinegar if possible. He does not like busy people or children, loud noises, haircuts, changes of plans, mushrooms, peppers, chillies or avos.

He is quite unaware of danger and needs supervision with showering, brushing teeth and general care. We also give him his medication and prepare meals for him. His fine motor co-ordination skills are not good. He also finds articulating his needs quite difficult – sometimes he takes long to answer or won’t answer at all. I have learnt to slow down and really listen and try to figure out what is meant.

So he really needs daily supervision and assistance as things can go wrong fast. I do worry about what will happen when we die but know his brothers will step up to care for him. This does make me feel guilty.

There is no support for parents of autistic children in SA. One can get the disability grant after jumping through quite a few hoops.

Medication is expensive and sometimes unavailable for months at the clinics One can often not replace medication with a generic as these individuals react differently to medication.

Most of the children at Danny’s school were looked after by a grandmother and most had absent fathers. These children/adults can be extremely difficult to manage when anxiety take over – they are very strong. I imagine they feel like they are drowning when they have a panic attack.

Quite  a few children at Danny’s school were arrested after going into people’s houses and helping themselves to food. 

There is very little information given to communities to deal with children or adults with autism. I think there should be more information about autism available at clinics and schools, and support groups for parents and siblings.

The saying “If you know one person with autism you know one person with autism” is so true. Each person is completely different and will react differently .

I think we should all try to be kind patient and understanding of everyone around us.

Danny has given us immense joy and made us laugh a lot, and to appreciate the silly things in life. He has made us all as a family non judgemental and empathetic .We work at  seeing  the funny side of things.”

How does reading about Kitty Viljoen’s experience make you feel about autism?