With April being Autism
Month, Karen Venter* (47) from the Breede River Valley wants to draw attention
to the fact not all people with autism are the same – each is a “unique and
daughter, Christelle*, believes in a magical realm where she transforms into
“I wish I could join
her in that world. As a mom I want to experience parts of it the way she feels
it,” Karen says.
But don’t refer to her
child as “special”.
“It’s a plastic word,” she says. “A mom from Pretoria who
moved here recently views her daughter as a little princess and my child as
“Of course your child
wants to be special to you, but Christelle does things differently. There’s no
need to pity her.
“When their child
accomplishes something I don’t want to beat around the bush about my daughter.
I don’t want to stick frills and bows to it and sugar-coat it. Sometimes
everything in life is just sour.
“People need to be
careful with empathy. Don’t pretend she doesn’t exist. Talk to her and not
about her. She wants to know what you have to say about her.”
There’s an 11-year-old
autistic boy in the neighbourhood too. “He had a meltdown. He struggles to
communicate and bit his mother until she bled. Once he calmed down he could
explain, and said, ‘I’m so tired of not being able to use my voice to be
“I’m grateful that my
child can talk. I know what’s in her heart and I can give her the help she
needs. The child needs to feel safe. She gets angry if she can’t read a
situation. The good Lord gave her the talent of being able to discern who’s
true and who’s not. She knows when someone’s false. She can read emotions and
knows what you’re thinking about her. If you’re astounded by her, she knows
When Christelle was
born, on 23 May 2005, everything was “fine” even though she was three weeks
premature. “She didn’t even have colic or allergies,” Karen recalls.
“At six weeks she
needed an emergency operation to fix a hernia.
“My pregnancy was
normal. There were never any alarm bells. My appetite was normal and I
developed a sweet tooth. I never felt nauseous or was overcome with heartburn.
“Three months in I
became swollen because of water retention. I was on antidepressants at the time
but my psychiatrist assured me it was safe. But my gynaecologist said he was
uncertain about side effects and suggested I don’t take them in the first
trimester. I had to wean myself off them to ensure I didn’t suffer withdrawal
During her pregnancy
she visited Rio de Janeiro, Brazil, and Buenos Aires, Argentina, with her
husband and they had to get yellow fever vaccinations. “I did everything by the
book. No alcohol and no seafood. I also didn’t sleep on my back.”
Karen says she never
imagined that someday she’d be able to parent a child with unique needs. “I didn’t
know anything about autism. Characters on TV like Mr Bean freaked me out.
Something about him scared me. I also avoided children with Down syndrome. But
that was long before I got married in my thirties.”
Before becoming a mom
she was a personnel officer. “I studied psychology at a time when I didn’t know
what I wanted to do with my life,” she says, adding it’s not a career choice
she was keen on.
They live in a small
town in the Breede River Valley which is why she’d prefer not to use her real
name. People and children in small communities can sometimes be cruel, pointing
fingers at parents as if they were somehow at fault for their kids’ condition.
“Abnormal psychology –
that the human brain and ostensibly the soul could be ill – also made me
uncomfortable,” she recalls.
At birth everything was
perfect. Christelle’s Apgar score was 10/10. This test is used to measure
heartbeat and muscle tone among other things.
“She was a tall baby
and grew almost too quickly. If the book said she was meant to be crawling at
six months, she was. She developed exactly as she was supposed to. At a year
old she could say five words.
“But by her first
birthday I started noticing that she was saying and doing what to me were weird
things. She’d always been fascinated with books. She never held them
upside-down, even before she could read.
“By one year old she’d
put books in a row on the coffee table, open each book to a page and walk down
the row of books, turning a page at a time in each, over and over. We thought
it was amazing that she loved books so much. She also lined her toys up in neat
Karen says Christelle
has always been a moderate person and never got hysterical over anything.
She did, however, at
four months old start flapping her hands like a bird’s wings – one of the early
signs of autism. As Christelle grew, there were increasingly signs that
everything was 100%.
At the age of two she
started to be overwhelmed by fear of strangers and separation anxiety. By the
time she was three-and-a-half years old, her parents took her to a
psychologist. Visits to a paediatric neurologist followed. At first they were
told Christelle tended to over-focus and so struggled to perform one task at a
time. Karen says Christelle was also “double-jointed”.
She couldn’t understand
what was wrong with her child. The little girl could feed herself, talk, recognise
emotions and make eye contact. Eventually a doctor at the University of Cape
Town saw video footage of Christelle and said she had autism.
An autism test was
performed which checks for damaged protein in her blood and urine.
When Christelle was
diagnosed with autism Karen took it very hard.
consciousness could only register the moment, the here and now. I didn’t know
how to go forward. But if the doctor believes it, who am I as a mother not to
“I wandered around the
Tyger Valley shopping centre in Cape Town like a zombie. I happened to run into
a cousin who’d just had a brain operation. What should I tell her? My own mom
and dad are dead. I’m an orphan with an autistic child.
“The only thing I could
tell her – and my husband – was, ‘I’ve had some bad news.’
“My husband and I were
a formidable team from the get-go. We didn’t blame each other. He wasn’t
present when she was diagnosed, but he did come along for every visit to a
specialist after that.
“It was a tough
discussion with Christelle to try to explain why she does things differently.
We talked about it with her so she could understand why she struggles to make
friends and why she talks so much without listening.”
During school holidays
Christelle and her parents attend developmental intervention programmes in
Durbanville, Cape Town. Each session is hard work and a lot of effort for
Christelle. The programmes usually run from 9am to 4pm for at least a week and
Karen is tired of
people always trying to fix “what’s wrong” with Christelle. At the age of four and
a half the little girl already had to explain to people why she struggles and
how she needs to learn something to make it easier for her.
They initially enrolled
her in a mainstream school in their town but now she’s home-schooled.
“If some or other task
isn’t stimulating to her, she’ll be on the carpet within 10 minutes, flapping
her hands and becoming fixated on a single subject.
“She constantly has to
be kept meaningfully occupied. You need to keep your eye on her all the time.
If she starts drifting off like that, she loses interest in her schoolwork.
She’s constantly aware that the world is beautiful and interesting, but that there
are also dangers.”
Her joints have to be
massaged to keep them supple. If, for example, she jumps on a trampoline her
sensory system is either over- or under-stimulated. Her eyes are light-sensitive
and she’s also hearing- and touch-sensitive. If, for example, a feather falls
from a duster she can’t deal with it.
“She likes going for a
drive in the car because she enjoys the vibrations of the tires on the tar
going through her whole body. She’ll sit with her cheek against the window.
She’s been wanting to do this more and more recently.
“She doesn’t get
hysterical or angry.
“She like moving around
in the pool. And horse-riding. She enjoys movement. She wants to know about
other kids and how to make friends.
“She wants to learn to
dance because it’ll teach her body discipline. And if she’s dancing with other
people it’s a form of socialising where she doesn’t have to talk. She yearns
for socialising and fears rejection. She wants to organise events and make
everything a celebration.
“There are overnight
parties. The other day 12 kids came for a swim. She’s good at getting people
together. Because she loves horse-riding she wants to make it her career one
day to save animals. She wants to establish havens for insects, cats, dogs and
horses where they can live safely and happily.
“She can’t understand
cruelty. She once saw a father and son playing soccer and reckoned the dad was
being too rough with his son. She asked him, ‘Why do you keep on hitting him?
What kind of parent are you?’ Luckily the people here know her and know not to
“She also wants to act
and write stories, especially about horses. All her friendships are forged
around horse-riding. She wants to save all horses from abuse and believes
horses can change people. I once found her in a paddock with three horses
circling her while she sang to them . . .
“We’re happy and have a
lot to be thankful for.”
*Names have been changed.