They shake their heads, some sympathetically but many with disdain, and comment in hushed tones about your shoddy parenting skills.
“People always think that it must be the parents’ fault,” Ilana Gershlowitz says with a wry smile.
This scenario is one that Gershlowitz had to become accustomed to. Her son David was diagnosed with autism when he was a toddler.
“We couldn’t go to synagogue in case he started screaming or hitting his head against things,” she recalls. “Autism is an extremely hard journey.”
David was Gershlowitz’s first child. He was given a normal Apgar score at birth and was seen as a healthy baby boy. Apgar tests rate a baby’s reactions and strength using the five criteria – appearance, pulse rate, grimace, activity and respiration – which make up the acronym.
However, as he grew older, Gershlowitz started to notice that he was not developing in the way that an average baby should.
“When he was two, he would line up his toys instead of playing with them. Imaginative play is very important for language development. A child with autism won’t engage in imaginative play, so they won’t learn from their environment,” she says.
According to version five of the Diagnostic Standards Measure, more commonly known as the DSM-5, people with autism are diagnosed according to where they fall on an “autism spectrum”. This is determined by the severity of their condition.
“A doctor observed him for 20 minutes and then it was the old story of ‘good bye and good luck’. You walk out of the doctor’s office and you think, here is this perfect child, what am I going to do with him?” she says. “I knew David wasn’t stupid. I’d go to look at special schools and institutions and I’d go home and vomit and cry.”
However, the tenacious mother, who was pregnant with her second child at the time, refused to accept that this would be her son’s fate. Her background as a lawyer kicked in and she threw herself into finding possible treatment methods. Years of research and discovery led her to establishing The Star Academy, a school for children with autism.
“This is a message of hope – autism is a treatable medical condition!” she says emphatically.
The academy provides tailor-made treatment for children depending on where they are on the autism spectrum. They make use of Applied Behaviour Analysis (ABA) to alter a child’s behaviour. ABA is designed to address each child’s specific skills deficit. For example, if communication is an issue, they are given iPads to help them to get their message across.
Another essential component of treating autistic children is biomedical intervention. Children usually present with inflammation and immune dysregulation. This means that they have problems with their digestive systems, and are constantly falling ill due to their weakened immune systems. These children often can’t communicate their discomfort, which is what leads to self-destructive behaviour.
“South African doctors often prescribe psychiatric drugs. So many of these children have gut inflammation but can’t express their pain. They need anti-inflammatories and a special diet,” Gershlowitz says. “It’s only after medical protocols that psychiatric drugs should be given.”
David is almost 12 years old now. While he hasn’t fully recovered, he is doing well and Gershlowitz says that he is now quite independent. He’s also a hero in his younger brother’s eyes because he has a cool iPad.
“Because of the effort that we poured into him, David is now a functional boy leading a happy life. He can speak but uses the iPad to augment his communication,” she says proudly. “Our second son thinks he’s so clever and wants to take him to school.”
Gershlowitz sees herself as an advocate for change, and wants to help other parents to see that children with autism can have bright futures.
“We have suffered a lot. I want it to be worth something,” she says.