Concerned that her little boy might have a hearing defect, an Eastern Cape educationist took the child to be examined by a pediatrician.
The reason for the concern of the mother – University of Fort Hare lecturer Dr Noncedo Khewu – was that her child seemed to ignore her and did not make eye contact when she called out to him.
Imagine the shock when the doctor informed her that the toddler was autistic.
That diagnosis was as much of a shock as it was puzzling to her.
“My son was, according to me, “normal” – whatever normal is,” said Khewu, who admitted she was not too familiar with autism.
“As much as I’m an avid reader and an educationist by profession, the word autism was new to me.
“Even if I had once came across it, it’s a subject I’d never given much thought to.”
And even more shocking to her was the definition of autism which the doctor outlined to her.
The condition is, according to Autism South Africa, a lifelong, complex, developmental disorder that affects a person’s social and communication behaviour.
The disorder occurs on a spectrum, ranging from severe and highly debilitating in some people to mild in others.
In Khewu’s son’s case, his developmental challenges might require that he attend a special school, the doctor said.
Like the wise mother she is, the lecturer sought the opinion of another doctor.
“We went for a second opinion and got the same diagnosis – the only difference was the second doctor was more sensitive and empathetic.”
When the doctor confirmed to her that her son had autism, Khewu said it was as though something inside of her died.
“I’d be lying if I said after the diagnosis I started reading about it. I did not. I was too distraught to talk about it, let alone read about it.
“Actually, I hated the word autism. But because the second doctor took time to educate us I started noticing the symptoms my son was presenting: obsessively jumping, very little eye contact, intolerance of certain sounds, colours and tastes, anxiety and irritability.”
And so began a journey that only one or two percent of South African mothers take. The academic said all she saw was a child who had a speech defect, who was hyperactive and who preferred solitary play.
Khewu said after consulting an autism specialist, she learnt that her son was “high functioning” – meaning he was capable of being trained.
Despite being high functioning, he still struggled to stand in long queues, would start screaming and crying for no reason, and also suffered from anxiety.
The behavioural issues were traumatic for both mother and child.
Khewu said she attended numerous counseling sessions and autism workshops, but struggled to learn much as she tended to break down and weep during the sessions.
“I was struggling to accept my son’s diagnosis – so was everyone around me.
“Some family members saw it as a passing thing. They found comfort in believing that some of the symptoms my son presented could be traced to a great grandfather who ultimately “‘snapped” out of it.”
Others close to her felt it was something that could be “prayed away”.
“There was a time when I also believed that I could pray autism away. I prayed, cried and fasted, but the autism did not budge,” Khewu said.
“I perpetually lived between hope and disappointment.”
But, with strong support from her family, a psychologist friend and caring friends and acquaintances, the academic said she gradually developed the courage to “embrace my son’s reality”.
On the recommendation of a therapist, Khewu took her son to a preschool in an effort to improve his speech.
Although his speech eventually did improve, Khewu nonetheless faced other unexpected challenges.
There were her son’s “tantrums” in the classroom.
“As much as teachers were very supportive, and still are, what [remains] unsettling are the constant calls I receive when my son has an episode.”
There have been times when he became so enraged he was impossible to manage.
“On a few occasions, I have taken time to visit homes to apologise in person.”
Then there were other challenges – the cost of supplements, caregivers, therapists and the limited facilities for children who are autistic.
Some schools made false claims about having teachers on their staff trained to work with autistic children, she said.
“Some schools make empty promises – or ridiculous promises like assuring parents that their children will start speaking as soon as possible. In most cases there wouldn’t even be an assessment report to support these claims.”
Khewu said over the years she has increased her knowledge on autism and many parents now come to her for help after their children have been diagnosed.
“In most cases it is parents who have just received the diagnosis who find it hard to accept.
“And those with children who have learning barriers.
“I duly share my experience and I always emphasise that the best place to start is to have the child assessed so that parents know what they are faced with.
“Ignorance about the extent to which the child is affected results in unreasonable expectations.”
But life is not all uphill for those affected by autism.
There are times of special wonder. Autistic children are often highly gifted numerically.
“On a few occasions I have taken my son to my lectures and from that experience my students have observed multiple intelligences at play.
“My son’s capacity to know all the numbers in my phone contact list, his extensive knowledge of soccer (teams, players and scores), as well as his knowledge of flags from different countries, baffled them.
“The students also had a feel of how a photographic mind functions – that is one of the strengths that people with autism possess.
“I told them that when my phone’s battery has died, I don’t struggle to get my family’s contact numbers, I just ask my “mobile database”.
Some students were shouting, “Doc, please take your son to South Africa’s Got Talent”.
“These are some of the beautiful and proud moments I’ve had with my son,” Khewu said — – email@example.com