Children with autism: They will change your world

2011-07-14 00:00

I WALKED beside him, not sure what to do. Unexpectedly, I felt his cold, soft hand slip around my fingers. He squeezed gently, as if it were a reflex, then lifted my hand and pressed it against his nose. I wondered if there was a way to understand him and the way he saw the world when he suddenly ran off into a neighbour’s garden. My friend seemed unperturbed. This was routine.

My friends, usually when they are unattached, joke about what they would do if they pop out an ugly baby. One is adamant that she will give her child away should this happen, while another would consider swopping him or her at the hospital when no one is looking.

But what if you give birth to a child with a disability?

Autism is a developmental disorder that affects communication and social skills. According to Autismsouthafrica. org a child with autism is born in South Africa every hour.

Recently, I tagged along with my friend to work. She tutors a seven-year-old boy who was diagnosed with autism at age two and a half. She’s been working with him for five years and, in that time, he showed only a small improvement until this last year when he progressed in what the world of autism would consider leaps and bounds.

I walked into his house with no idea of what to expect. My experience of autism has always been through a secondary source and here I was walking into a family’s daily experience.

My friend busied herself setting up and talking to the child’s mother. I could hear what sounded like muffled groans coming from somewhere in the house. No one took any notice. I followed my friend and found the noise coming from a little boy, who was sitting on a couch watching TV.

“He really likes television,” said my friend.

He looks like one of those kids you would have to warn your daughters about when they grow up. He took my friend’s hand and walked to his classroom. Unable to speak, he communicates by pulling you or pushing you, sometimes making sounds but not to any great extent.

I watched my friend go through a schedule of exercises with him which teaches him skills, from being able to understand simple two-word instructions to reading facial expressions. The aim is to generate communication and so my friend is careful not always to call him by his name or say the same thing. Trying a few exercises with him, I soon realised that it was not an easy task. There’s a huge amount of patience required and you have to be constantly aware of what you say. She did some of the exercises over and over until his responses were right, correcting him only through positive reinforcement, never saying the word “no”.

In the movies, people with disabilities have at least one skill that they excel at. In Rain Man, for example, Dustin Hoffman’s character was a genius with numbers, but he was emotionally disconnected. In I Am Sam, Sean Penn has a developmental disorder but an amazing ability to love and take care of his daughter. However, in real life, they don’t always have splinter skills. This young boy doesn’t.

“He’s a runner,” said my friend, “but he has low muscle tone,” She turns to the boy and teases him, pulling his nose, “and he’s lazy.” He giggles and wraps his arms around himself.

“Most kids aren’t this affectionate but he lives in a house where people are constantly asking him for hugs and kisses, so he is unusually affectionate.” She asks him for a kiss, and he looks at me while he touches her cheek with his lips.

On the second day that I visited the family, the boy sounded the word “no” twice. Once to my friend, while she was trying to toilet-train him, and once in front of me, while he was playing with a puzzle. It was strange. Because he is non-verbal you almost doubt that you heard it.

My friend excitedly told his mother, but there was a glint of restraint in her eyes as she grabbed her son in a hug and praised him. Five years of hoping for things to change can do that and I imagined how hard it must be for her to see her son slowly progress, hoping for a breakthrough — but fearing to hope too much.

His little sister, aged four, walks around trying to get attention, not understanding her brother or the reason everyone fusses over every­thing that he does.

Will things get better? Will they just stay the same? Or is it too much to think about it?

“You should see him with an iPad,” says my friend. “He just whizzes through it, finding a game he likes. It’s a new way of teaching children with disabilities. They respond to it really well.”

All over the world, children with disabilities like autism are indeed more than just special. They change your world, test you to your very core and it is through them that you learn what it truly means to love unconditionally.

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