World Autism Awareness month is celebrated in April worldwide by people and organisations alike. This entire month is dedicated to raising awareness, sharing understanding, and shedding light on a health crisis in South Africa and globally.
This is because approximately 1 out of 44 children (2 per cent) in the United States of America (USA) are diagnosed with Autism Spectrum Disorder (ASD), according to the Centre for Disease Control and Prevention (CDC).
Based on research on autism, there aren’t many organisations that reports on the prevalence of Autism in South Africa.
But local experts have noted that this figure compared to children diagnosed with Autism internationally is about 1 in 58 children (1,72 per cent).
There are also local experts, such as Wendy Bowley, a Social Autism Transformer and Founder of Knowing Autism, who have dedicated their lives to the cause and this lifelong condition in more ways than one.
Bowley was only diagnosed with autism at 44, two years after receiving news of her 11-year-old’s diagnosis. She decided to embrace the challenges and superpowers of the condition while celebrating her and her son’s life from a different perspective.
This mom is passionate about changing the narrative about Autism and people. She shares her views, tips and advice on navigating the schooling system with Autism – helping other mothers and autistic children out there.
Schools for autistic children
Bowley notes that, for the most part, the educational system in South Africa does not cater for Autism. The few schools that do are limited and have many requirements.
“Autism is a developmental disorder which means that as a child grows and develops, their needs change, and they may have more complex learning difficulties than other kids on the spectrum,” says Bowley.
“Many parents in South Africa live with the fear of knowing their child’s placement isn’t secure, and in many cases, the child may even fall out of the education system,” notes Bowley.
Untrained teachers and staff members
The sad reality is that these children don’t fall out of the education system due to a lack of potential but rather a lack of well-trained and experienced educators and staff.
“As the prevalence of Autism is far greater than most realise, many children are going undiagnosed and suffering within the schooling system. What is not known is that our jails and psychiatric hospitals are full of children and adults that have undiagnosed Autism. I believe if these children were catered for, we would be able to provide them with greater opportunities and improved quality of life,” says Bowley.
Bullied for being different
“Kids are often bullied at school for being different and not fitting into the mould set out for them. Due to the lack of awareness of what Autism is, these children are believed to be cursed or possessed by evil spirits in some rural areas or locations,” Bowley adds.
“There is a dire need not only to raise awareness to provide education and understanding but to train our teachers and parents and to make the ASD assessments available to all those who need them, resulting in early diagnosis, proper care and an environment that provides the child with the foundation they need to achieve their full potential.”
Support autistic children
Ben Truter, Clinical Psychologist and Director at the Neurodiversity Centre, says that “researchers at the London School of Economics in 2014 identified that autism cost the UK and US economies more than any other medical condition to intervene with, primarily because this set of conditions are life-long, and people with Autism may require support throughout their lives.”
“The clinical and intervention support required for any child to flourish will differ from child to child. Yet most South African children will have limited (if any) access to suitable supports.”
Professor Christopher Gillberg – an international authority on Autism, suggests that some children may only get support if they also have an intellectual disability, which is not the same as their ‘Autism’.
These and many other factors complicates awareness of and access to all the different autism-related support required by many of our children.
How to recognise general signs of autism that may indicate the need for a formal assessment:
- Disliking making eye contact
- Does not respond to their name or the sound of a familiar voice
- Cannot follow objects visually
- Points or waves goodbye, or uses other gestures to communicate
- Children on the Autism Spectrum do not respond with animated facial expressions
- They also struggle to read and understand facial expressions
One of the most critical factors and a clear indicator of some underlying neurodevelopmental issues that need to be assessed is when a child is still not speaking any form of language by two years old.