April is commonly recognised as both Autism Awareness Month and Autism Acceptance Month.
While awareness focuses on identifying autism as a condition, acceptance dives deeper, emphasising inclusion, understanding, and celebration of the unique perspectives of those on the spectrum.
For South Africans, this month offers an opportunity to reflect on how far we’ve come in understanding autism while also identifying gaps in support systems, education, and societal perceptions.
To delve into these issues, I joined a conversation hosted by the South African Depression and Anxiety Group (SADAG) as part of their #FacebookFridays.
The guest speaker, Vicky Otle, principal of the Sisu Hub School for Autistic Children and an experienced autism educator, shared invaluable insights about the challenges and triumphs of autism in South Africa.
Understanding autism
“What is autism?” Otle began with a question many of us think we know the answer to. Yet, her explanation reminds us how complex autism truly is.
“We call it a spectrum for a reason,” she explains.
Autism isn’t a one-size-fits-all diagnosis. Every individual with autism experiences it differently. Some may require significant support in their daily lives, while others can navigate the world with minimal assistance.
In broad terms, autism involves differences in:
Socialisation: Autistic individuals may socialise differently from neurotypical people.
Communication: Some communicate verbally, while others rely on alternative methods such as sign language, AAC (Augmentative and Alternative Communication) devices, or letter boards.
Repetitive or restrictive behaviours: Often misunderstood, these behaviours, such as rocking or hand clapping, can help autistic individuals self-regulate.
Sensory experiences: Many autistic people have heightened or diminished sensory processing, which can affect how they experience their environment.
"There is no such thing as a typical autistic individual". This diversity within the spectrum makes it vital to listen to autistic voices and tailor support to their unique needs.
Awareness vs acceptance
For years, autism awareness campaigns have aimed to educate the public about autism’s signs and symptoms. While this has been crucial in reducing stigma, awareness alone isn’t enough. Acceptance is where the change happens.
Acceptance means creating environments where autistic people feel safe, valued and included. It’s about recognising autism as a part of human diversity rather than a problem to be fixed.
Challenges for families in South Africa Raising an autistic child comes with unique challenges, and in South Africa, families often face significant hurdles.
Research has shown that families with autistic children often report higher levels of stress and anxiety compared to families with children who have other disabilities. Mothers, in particular, are at risk of developing post-traumatic stress disorder (PTSD) due to the pressures of caregiving.
According to a 2023 study by the University of Cape Town, only 15% of public schools in SA have trained staff to support autistic learners.
Organisations like Autism South Africa and Autism Western Cape provide vital resources, from free counselling to workshops that equip families with practical strategies.
Practical tips for families
For parents navigating a new autism diagnosis, Otle offers two key pieces of advice:
1. Presume competence: Always believe that your child understands what’s happening around them, even if they can’t communicate verbally.
“They do understand. Speak to them as you would to any other child their age.”
2. Create predictability: Routines can help reduce anxiety for autistic individuals. Consistent schedules and clear expectations provide a sense of security. However, Otle acknowledges that life with autism isn’t always predictable.
“Just when you think you’ve got it all figured out, something changes,” she says. This unpredictability is a reminder to approach each day with patience and flexibility.
“From 18 upwards, the gaps are glaring,” Otle admits. Whether it’s accessing higher education, vocational training, or employment, autistic adults often struggle to find inclusive opportunities.
Despite these challenges, technology is opening up new possibilities. Online short courses and remote work opportunities are helping bridge some gaps.
Additionally, initiatives like Pretoria’s adult autism group are exploring ways to support non-speaking autistic adults in achieving greater independence.
For families, the autism journey is often filled with uncertainty. “Your child is still your child. Yes, their autism might mean a different pathway for your family, but they are still capable of love, growth, and connection.”
As Otle aptly puts it, “The more I learn about autism, the less I know.” This humility is a reminder to keep the conversation going, not just in April but throughout the year.
For families, educators, and society as a whole, the goal is clear: to move beyond awareness and embrace acceptance one story, one connection, and one step at a time.