JULY & AUGUST 2019 | 87Illustration: Rebecca Burgess (the-art-of-autism.com)
Autism spectrum disorder is
characterised, in varying degrees, by:- Difficulties in social interaction and
verbal and nonverbal communication - Repetitive behaviour (also known
as stimming) - Differences in sensory perception
However, Autism South Africa (ASA)
urges parents not to self-diagnose, as
many toddlers show signs in one or
more of these categories but aren’t
necessarily autistic. But, a parent’s gut
is seldom wrong. If you suspect your
child may be on the spectrum, do not
hesitate to contact ASA for support.
aut2know.co.za.INCREASING AWARENESS
Worldwide, there’s a movement toward
neurodiversity and accepting autistic
people as a community, rather than an
anomaly. “We need to embrace different
thinking patterns the way we’ve
embraced different genders, races and
cultures,” Vicky says.
Louise Royan’s five-year-old son,
Ethan, has moderate to severe high-
support autism. She says that, while
autism awareness is gaining traction,
her ignorance kept her from recognising
the signs in Ethan as early as 11 months.
“It would be small things such as
missing milestones like pointing,
clapping or waving goodbye. I’d think
to myself, ‘Don’t worry, every child
progresses differently.’
“At around 18 months he’d do things
other kids weren’t, such as running
past a wall really quickly and watching
out the side of his eyes, and again I’d
just chalk it off as ‘Ethan quirks’,” she
recalls.
But, says Louise, by age two Ethan
was still not talking or offering any
unspoken cues of communication.
“A paediatrician said he was simply
delayed as he didn’t attend crèche.
Things still did not change, even when
he started crèche. At this stage, he
was seeing occupational and speech
therapists, neither of whom picked up
his disorder. With guidance from his
OT, we changed schools.
“One teacher there called me in on
day two and said Ethan was severely
autistic and that he was traumatising
the other children and staff. This was
extremely traumatic for me, but it was
the push I needed to finally open my
eyes,” recalls Louise.TRUST YOUR GUT
Louise had a nagging feeling that
something wasn’t right with Ethan, but
she ignored her motherly instincts –
which had been right.
Natalie van Eeden’s gut also told her
something was up with Ruben, her nowseven-year-old son. Their family paed
put Ruben’s language delays down to
growing up in a bilingual home, but she
kept researching and joining support
groups on Facebook to get as much info
as possible. “I made notes, took videos,
and took all my evidence to a specialist,”
she says.
For instance, besides his language
delays, Ruben also had strange
obsessions with objects, such as Natalie’s
hairdryer. “He slept with it, wanted
to bath with it, and went to the shops
with it. He also loved spray bottles and
spinning items,” she recalls, adding on
a more serious note that, “He wouldn’t
sleep and had crazy scary tantrums.”
Eventually, Ruben was diagnosed,
at three, by a neurodevelopmental
paediatrician.THE ROAD IS LONG
Ethan and Ruben are still in nappies,
have limited vocabulary and are
sensitive to different foods, smells and
textures. Both boys are at remedial
schools, which costs their parents
upwards of R8 000 a month, outside of
therapy, of which there are a minimum
of four sessions a week.
“I would love to stay home with Ethan
and carry on therapy at home, but we
can’t afford to only have one parent
working,” Louise says. She highlights
isolation as one of the biggest struggles
facing moms of autistic children.
“We can’t go out and do all the
‘normal’ things parents do, like theme
parks or arcade games or even a
restaurant or shopping. It’s too much
for Ethan, and if he doesn’t have a
meltdown in the store, then he will as
soon as we try to leave. So we stay at
home. All day. Every day,” she says.
Natalie adds that her family has had
to learn to ignore judgmental stares
from people who think that Ruben is
being naughty. “I would love for people
to be more open and ask questions when
we are out in public. Don’t just assume
he is a brat.” YBLanguageMotor skillsSensory Executive
functionPerceptionThe areas where an autistic person does
not have a trait will function no differently
to a neurotypical brain, but may be
affected by circumstances, Autism South
Africa explains. For example, they may
be good at making conversation, but
they get sensory overload in crowded
spaces, which then makes conversation
very hard for them. For autistic people,
the circular spectrum more accurately
characterises their condition than the
traditional linear spectrum.