Raising a child with autistic spectrum disorder (ASD) places enormous demands on a family. No one knows this better than Shanaaz Rawoot and her husband, from Cape Town’s northern suburbs.
The family had to make sacrifices to ensure their autistic son was taken care of. Rawoot, who quit her job to look after her first child, still remembers the first symptoms of autism when her now 14-year-old son was only two.
They realised that Muhammad needed medical attention when they noticed he did not respond to communication from others.
“He never responded to talking when we played with him or when there was communication. Even though the signs were there, and we were first-time parents, we still did not know what was really wrong with him,” says Rawoot.
This month autism has been receiving attention as the world observes April as autism awareness month. World Autism Awareness Day is observed on April 1 every year. This month the focus is on the hurdles people with autism and their caregivers face every day.
Before Muhammad was finally diagnosed, Rawoot recalls the many visits to different doctors and experts who could not confirm what was wrong with him.
“We went to a speech therapist, psychologist and paediatric neurologist. All of that was done with him kicking and screaming. Despite the frustration of not knowing what was wrong with him, the tantrums brought us to a crisis point,” she says.
He also did not answer to his name when he was called, which was an immediate red flag for her father-in-law, and he wouldn’t follow instructions when they were given to him. One of the most frustrating problems was that he didn’t sleep well.
It’s now 12 years since he was diagnosed. The family has had to come to terms with the fact that Muhammad will probably never be able to speak.
“He knows how to operate a tablet. So we downloaded a communication app that he uses. But even with that, there is a lot of frustration over communication,” she says.
Apart from dedicating her life to caring for her son, Rawoot says she’s realised that having an autistic child comes with a price tag. “His daily essentials are very expensive. Muhammad has two tutors, one for the early mornings and one for the afternoon.”
Reyan Abrahams, a tutor from Action 4 Autism who specialises in working with adults and children, says there is not one answer or way to deal with people with autism.
“Like we are all different, they are different as well and should be treated individually. Mountains of patience is required.”
He said the aim should be aiding independence and building confidence by training the child to brush their teeth and get dressed, before moving on to more complex activities like working with money.
Autism SA, an organisation that creates awareness of ASD here, said early diagnosis, in the first three years of life, makes a significant difference in the foundation years of a child’s development and growth.
There are several things that can be done to help children with autism overcome their challenges.
“As the parent of a child with autism or related developmental delays, the best thing you can do is to start intervention as soon as possible,” advises Autism SA.
According to the organisation, the earlier children with autism receive help, the greater their chances for an independent life.
Here are some fast facts from Autism SA about ASD:
Developmental disabilities such as ASD are brain-based, neurological conditions that have more to do with biology than with psychology.
No two people with ASD are affected in the same way.
ASD is usually diagnosed by the time a child is three years old.
ASD is found in every country, every ethnic group and socio-economic class.
Autism is diagnosed four times as much in boys as in girls.
Children diagnosed with ASD need early intervention.