Not disabled, just different

27 April 2018 | People

April is Autism Awareness Month.

I recently attended an event where I found myself surrounded by children laughing, screaming and running around.

The majority of these children were autistic. I looked at the one boy, running and screaming, waving his hands in the air, lost in his own world, when I heard a lady behind me saying: “Why won't this child keep quiet?” She sounded annoyed. When the man standing next to her calmly told her that the boy was autistic it downed on me that not many know what autism is. Autistic people see, hear and feel the world differently than other people. Usually autism begins in the early childhood years. It is not an illness or disease and cannot be 'cured'. Often people feel being autistic is a fundamental aspect of their identity.

Autism is regarded as a spectrum condition. All autistic people share certain difficulties, but being autistic affects people in different ways. Some autistic people also have learning disabilities, mental health issues or other conditions, meaning people need different levels of support. All people on the autism spectrum learn and develop, and with the right sort of support, they can be helped to live a more fulfilling life of their own choosing.

Instead of looking at the perceived 'deficits', society should use the strengths and fixations of autistic people to teach coping techniques and skills. Many people with autism strive on routine and structure, visual presentation of materials and small groups. Often they have sensory difficulties too. Zanet Pieterse, mother of eight-year-old EJ, says that it's a blessing and also challenging to raise an autistic child.

“Every morning depends on how he slept the previous night, and he usually doesn't sleep that well. I sometimes struggle myself to get up in the morning, due to lack of sleep. After getting up I change his clothes while he's sleeping. Aside from this I prepare his meals and that of his older sister. He spends half the day at Stepping Stone School. After school he spends time on his own and prefers to watch YouTube videos or play internet games.

“EJ has food aversions and doesn't just eat anything. It has nothing to do with the taste of food, but simply the smell. He's currently still on baby formula, and he needs to drink about two bottles a day. The formula contains certain vitamins and minerals that he doesn't get through the food he eats. Every morning and evening he drinks a concoction of medicines, mostly herbal supplements, to help settle him. ”

Pieterse explains that EJ was a normal boy up until two years old.

“He stopped eating. We took him to numerous doctors in South Africa, but no one could diagnose him. It's been a challenging journey with EJ. It requires a lot of effort, but our efforts are always awarded. Autism isn't a time game, where you can measure certain development at a specific age.

“The general autism community doesn't want us to label children or people with autism. But personally, I'd like a label that says:'I'm autistic, be patient'. People aren't always aware of autism, and when they see how EJ behaves, they usually think he's misbehaving, but when I tell them he's autistic, they immediately change their tone.”

EJ has high functioning autism.

“He's verbal, and behaves like an ordinary boy, but he has trouble dealing with his emotions. He reads, and writes, and everything he hears and sees he soaks up like a sponge and can easily recite it again. Someone can have autism, but can be affected in a different way, and may need more support”

Pieterse says the main role of parents of autistic children is to sculpt their gifts and talents.

“These children have been sent to contribute to society. They are not disabled but simply just different. ”

Contact the Autism Association of Namibia via [email protected] or visit the social media pages Petra Autnam Dillmann, Ask me, I'm Autistic, Karla's ASD page and the Autism Discussion Page to find out more about autism.

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