Autism: How to navigate it

Durbanville couple Jaco and Noeline de Goede were first told their two children had ASD when their son Come, now 17, was eight years old. 

“He’d been diagnosed with ADHD at age five, and this time psychologists at the Neurodiversity Centre diagnosed him as autistic. That’s when we realised his sister Marli, now 15, is also autistic.”  

Many parents struggle with the diagnosis, Jaco says. “They’re shocked and can see it as a life sentence. But for us it was a logical conclusion to a process, looking back at the signs… The psychologists gave us and the kids tools to deal with it, and we read everything we could and researched it online, adjusting to this new world. For instance, both children are hypersensitive to light, so we don’t turn on overhead lights, and to sound, so we keep the volume low on the TV and radio and avoid shopping malls. We also invested in noise-cancelling headphones.” 

But the two children are also different in many ways, reflecting the range of neurodiversity within the autism spectrum. Traditionally, there were three types of autism, Jaco explains: autistic disorder (classic’ autism); Asperger’s, which their son has, includes social challenges and unusual interests and behaviours, but without language or intellectual issues; and pervasive developmental disorder (PDD), which can come with social and communication challenges.  

Since 2013, doctors no longer use these classifications – they roll the diagnosis into a single category, ASD, which offers a more cohesive approach to understanding and supporting those who are autistic. The current approach is to tailor a plan to the individual’s functioning and requirements.  

“Corné can have discussions about advanced maths concepts, but struggle to get dressed in the morning, and is rigid in his habits, so we eat supper with him at the same time each night,” Jaco says. 

“Marli is the opposite — she has pathological demand avoidance (PDA), characterised by an intense need to resist everyday demands and a preference for feeling in control, and any demand — like a set mealtime — meets resistance, so we have food available for whenever she’s ready. She can take on and try anything, if that’s what she wants to do, but having a bath or eating supper is simply too much to handle. What we find works best is to make routines around these aspects.”  

Some of the differences between the children, Jaco says, seem gender-based, and gender has been found to have a role in diagnosis. “Four times as many boys are diagnosed as girls, who often mask or camouflage their autistic traits, and so are diagnosed only later. Boys tend to be loners, happy with their own company – our son noticed that we were experiencing the Covid lockdown only after four months! Girls tend to seek interaction, though they may not know how to manage it”