World Autism Awareness Month is celebrated worldwide, in April by individuals and organisations alike. The entire month is dedicated  to raising awareness, sharing understanding, and shedding light on a health crisis not only in South Africa but globally. 

A recent study by the Centre for Disease Control and Prevention (CDC) reported that approximately 1 out of 44 children (2 percent) in the United States of America (USA) are diagnosed with Autism Spectrum Disorder (ASD). Although there aren’t any organisations that gather this information and report on the prevalence of Autism in South Africa, local experts have, however, noted that this figure in comparison to children who have been diagnosed with Autism, to be about 1 in 58 children (1,72 percent).

Social Autism Transformer and Founder of Knowing Autism, Wendy Bowley, has dedicated her life to the cause and this lifelong condition in more ways than one. Only diagnosed at the age of 44, two years after receiving news of her 11-year-old’s son diagnosis, Wendy has chosen to embrace the challenges, and superpowers that come with the condition while celebrating her and her son’s life, from a different perspective. 

Wendy is passionate about changing the narrative towards Autism and people who are on the Autism Spectrum by sharing her views, tips and advice on navigating the schooling system with Autism.

“For the most part the educational system in South Africa does not really cater for Autism,” Wendy shares. “The few schools that do are limited and come with 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. 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. The sad reality is that these children don’t fall out of the education system due to a lack of potential, but rather due to a lack of well-trained and experienced educators and staff.

“As the prevalence of Autism is far greater than most realise, this means that 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/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.”

Bowley adds, “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, in some of the rural areas or locations, these children are believed to be cursed or possessed by evil spirits. There is a dire need to not only raise awareness, 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 he or she needs to achieve their full potential.”

Ben Truter, Clinical Psychologist and Director at the Neurodiversity Centre, describes that, “researchers at the London School of Economics in 2014 identified that the 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, and yet most South African children will have limited (if any) access to suitable supports.  Professor Christopher Gillberg – an international authority on autisms suggests indeed that some children with autism may only get support for their autism if they also have an intellectual disability, which is not the same as their ‘autism’. These and many other factors complicate both awareness of, and access to, all the different autism-related supports that many of our children require.”

How to recognise general signs of autism that may indicate the need for a formal assessment::

• make eye contact

• respond to their name or the sound of a familiar voice

• follow objects visually

• point or wave goodbye, or use other gestures to communicate

• ask for help or make other basic requests

• 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 important factors and a clear indicator of some neurodevelopmental underlying issues that need to be assessed, is when, by the age of two years old, a child is still not speaking any form of language.

Knowing Autism is an organisation (soon the be registered as an NPO) that aims to educate and raise awareness about Autism in South Africa. Specifically passionate about educating at grassroots level in schools by conveying and empowering children, teachers and parents about Autism and the Autism Spectrum. The earlier the intervention, the better for the child. If we can foster a society that understands Autism, the Autism Spectrum, and shows more compassion while accepting others, we can create an environment for Autistic children to flourish. 

Knowing Autism currently offer:

• Informative Short Talks on Knowing Autism for learners, teachers, and parents

• Autism Training for a group of teachers & parents

• One-on-one parent & Teacher Advisory as well as coaching sessions

• A practical guide: “My Knowing Autism Workbook”

• Event Speaker on Autism and the Autistic Spectrum Disorder (ASD)

With many exciting partnerships in the pipeline, potential collaborations along with help and support of the public, Knowing Autism hopes to raise enough funds to start a mobile clinic offering Autism and Autism Spectrum assessments at schools across the country. 

For more information on Knowing Autism please contact Heike Kannemeyer on behalf of Wendy Bowley on 084 307 2132 or email heike@seasonseven.co.za 

Notes To Editor:

Autism Spectrum Disorder (ASD) is a lifelong developmental disability that first displays itself in infancy and early childhood, causing setbacks in many basic areas of development, such as learning to talk, play, and social interaction with others. Although Autism is a developmental condition it remains with a person for their whole life. People that have been diagnosed with Autism experience challenges in four (4) key areas, including social interaction, verbal and non-verbal communication, repetitive behaviors, and differences in sensory perception.

Visit www.wendybowley.co.za