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| Autism Awareness Wall at Enjabulweni School, Swaziland |
April is World
Autism Awareness Month. Despite this being the ninth commemoration, precious few
people are aware of the condition. Sadly, some of them are actually parents
living with affected children but have no idea why their children display
certain challenging behaviours. Autism comes with poor communication and social
skills, behavioural problems, and cognitive disabilities, all in varying
degrees since it is a spectrum disorder. Think of it as tape measure; the level
of severity could run anywhere from 1 to 100, so no two autistic people will
exhibit exactly the same challenges. Some will struggle to speak while very
sharp with certain tasks considered difficult; others will speak very well
while failing to perform simple tasks like doing their buttons or tying their
shoe laces.
When a child does
not develop in the expected way in terms of speech, motor skills, and other
milestones, people always find way to explain the challenges away. This happened
to Tenkhosi*, a single mother from Mbabane. When her son, Siviwe*, was 18-months-old,
he started babbling. At 2 years he could
rote-count and identify numbers. That suddenly stopped, and Tenkhosi hardly
noticed it.
The first time
the red flag went up was when the boy’s father took him to his home for the
weekend. On his return, he stated that his relatives had said the child was not
well. Tenkhosi did not pay much attention to it. Apparently his father’s relatives had been
excited to see him and were fussing over him, but he seemed to be in his own
bubble and never paid any attention to them in an unusual way.
Eventually Siviwe’s
behaviour deteriorated. He started breaking things and making loud noises, and
people just dismissed it with, “Oh that one is a real Simelane! Simelanes like
breaking and pushing.” At the age of 4,
he got more aggressive, beating his mother all the time. He would only sleep
for about three hours and wake up to scream. He even lifted the TV and broke
it. Tenkhosi was terrified of her little boy. Some people advised her to go to
Maputo and get coconuts to cure him of his speech problems. Others advised her to beat him up. She did to
no avail. “His father wanted him to enrol at the school for the deaf, and I was
against the idea because I could tell he was not deaf. He made so much noise at
night and neighbours were beginning to complain,” said Tenkhosi.
The strain of
looking after Siviwe took its toll on Tenkhosi, until she contemplated killing
herself and her son. “I thought of weevil tablets but could not do that to us
because I’d seen a relative die an agonising death after taking it,” she said.
She then settled on gas. In no time, there was a knock on the door. It was her
neighbour who said she had forgotten her keys at her house and had come back
for them. “She didn’t even tell me why she came to my house, because as soon as
I opened the door, the smell of gas hit her. She said, “Hey, Make the gas is smelling. You can’t have
this around your child. He might play with the gas and kill you!” With that,
the neighbour took the gas cylinder with her, and the suicide plot was foiled.
“I did not know
anything about autism. I just thought my boy was slow and violent. I had no
idea where his anger came from. I couldn’t take him to school because I was
afraid he would get lost. I even took him to a specialist to check if he had a
brain tumour causing the strange behaviour. My first time to hear the term was
when the Occupational Therapist said he must have it, and referred me to a
paediatrician. Siviwe was finally diagnosed with autism at the age of 5.
Many
children are leading less than ideal lives because they never got diagnosed and
cannot get the necessary help, such as therapy or medication, to improve their
lives. Early
treatment has been proven to improve outcomes, often dramatically. Experts say early intensive
behavioural intervention improves learning, communication and social skills in
young children with autism. Unfortunately most parents, like Tenkhosi, have
never heard of autism and just don’t understand what happened to their child.
Siviwe still has
occasions when he has meltdowns. “Sometimes I just beg him on my knees, Siviwe,
please don’t kill your mom because no one is going to take care of you when I’m
dead, but of course he doesn’t understand all that,” said Tenkhosi. “I rarely
have conversations with him as other parents do with their kids. All I do is
shout, “Stop that! Do this! Don’t do that!” My life just stopped after I had
that boy. I’m always looking after him, afraid that he will get lost. I don’t
have much support from anyone. This is my problem alone.”
Tenkhosi’s
biggest fear is for her son to grow older while remaining non-verbal, and her
own aging. “Now I have to control him all the time. What if I can’t do it
anymore and it’s just me and him?”
The following "red flags" may
indicate your child is at risk for an autism spectrum disorder. If your child
exhibits any of the following, please don’t delay in asking your pediatrician
or family doctor for an evaluation:
- No big smiles or other warm, joyful expressions by six months or thereafter
- No back-and-forth sharing of sounds, smiles or other facial expressions by nine months
- No babbling by 12 months
- No back-and-forth gestures such as pointing, showing, reaching or waving by 12 months
- No words by 16 months
- No meaningful, two-word phrases (not including imitating or repeating) by 24 months
- Lack of response to name
- Repetitive movements with objects
- Repetitive movements or posturing of body, arms, hands, or fingers
- Any loss of speech, babbling or social skills at any age
*Names changed on request
Additional information from firstsigns.org
and Autism Speaks website
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