Pragashnie Govender is a professor at the University of KwaZulu-Natal and a registered occupational therapist, with an interest and training in paediatric neurodevelopmental care.
Image: Supplied
Every April, the world turns blue for autism, and social media fills with symbols of solidarity, puzzle pieces, and reminders to raise awareness. It is indeed meaningful, but awareness alone cannot be enough.
Across many families, including here in South Africa, the reality is more complex. Awareness has increased, yet access has not kept pace. Services remain uneven, care is often fragmented, and the gap between what we understand about autism and what families experience daily remains significant. Many parents find themselves holding knowledge that exists in theory, but not always in practice.
Perhaps the moment calls not for more awareness, but for a shift in perspective — a move away from a narrow focus on diagnosis and deficit, toward a more grounded understanding of what it means to support an autistic child within the context of a family.
For decades, autism care has largely followed a professional-led model. Clinicians assess, diagnose, and prescribe, while parents are expected to implement. The implicit aim has often been to reduce differences and align children with typical developmental expectations. While this approach has provided structure, it has sometimes overlooked something essential: children do not develop in isolation. They develop in relationships, within the everyday rhythms of family life. A shared meal, a bedtime routine, a game on the floor — these moments are not secondary to development; they are its foundation.
When we look more closely at these everyday contexts, a different picture emerges. The family is not simply a support system around the child, but the primary environment where growth happens. Intervention is not limited to therapy sessions; it lives in daily interactions between a child and those who know them best.
This shift has important implications. It asks us to reconsider what we prioritise.
Instead of focusing only on what a child cannot do, we might ask how they experience their world. What brings comfort or distress? Where do they find joy? How do they communicate, even without words?
These questions move us closer to understanding functioning as lived experience, not just a score.
Within this perspective, play takes on renewed importance. Often underestimated, play is the primary occupation of childhood. Through play, children explore, regulate, imagine, and connect. For autistic children, access to play on their own terms can open meaningful and sustainable pathways to learning.
Connection also deserves deeper attention. Many autistic individuals express a desire for friendship and belonging — not scripted interaction, but genuine relationships. This invites us to move beyond teaching social behaviours toward creating environments where connection can emerge naturally.
At the same time, families are thinking about the future. They are not only asking whether their child will meet milestones, but whether they will be safe, understood, and able to participate in a meaningful life. Encouragingly, autism intervention has begun to shift in ways that reflect these realities.
There is growing recognition of approaches embedded in everyday life — approaches that follow the child’s lead, use play as a vehicle for learning, and build skills through natural interaction rather than rigid structure. These approaches are defined not by intensity alone, but by responsiveness. They allow shared control between adult and child, prioritise engagement over compliance, and emphasise relationship over repetition.
Importantly, many autistic individuals describe these approaches as more respectful and affirming. At the same time, it is clear there is no single pathway that suits every child. Responses to intervention vary widely. What works for one family may not work for another. This variability does not represent failure; it highlights the need for flexible, personalised care grounded in each family’s reality.
Yet, despite these advances, many families continue to encounter systems that do not reflect them. Care remains fragmented, and services often fail to communicate effectively. Parents are left navigating complex pathways, sometimes without adequate support, and are not always included as central decision-makers.
This is particularly evident in resource-constrained settings. In South Africa, where specialist services are not always accessible, families often carry a disproportionate burden. Their resilience is remarkable, but it should not be relied upon to compensate for systemic gaps.
The challenge, then, is not only clinical, but structural. It calls for better coordination across health, education, and social systems, and for recognising families and autistic individuals as active participants in shaping care.
Within this landscape, occupational therapy offers a distinctive perspective. Grounded in daily life, it focuses not only on what a person can do, but on how they live. It considers how environments can be adapted to reduce distress and increase participation, and how routines, relationships, and activities can support development.
In practice, this may involve helping families establish manageable rhythms, adjusting sensory environments, or working alongside parents as partners. It means supporting them to understand their child’s cues and respond in ways that strengthen connection. This work is often quiet and not always captured in standardised measures. Yet it speaks directly to the questions families are asking: not only “What can my child achieve?” but “What kind of life can my child have?”
As we mark Autism Awareness Day, there is value in continuing to raise visibility. But there is also a need to deepen the conversation — to move beyond awareness toward action that is thoughtful, sustained, and grounded in lived experience.
This includes recognising the central role of families, not as an adjunct to intervention, but as its core. It includes supporting caregiver wellbeing as essential to child development. It includes embracing approaches that honour the individuality of autistic children and create space for their voices.
Ultimately, the future of autism care will not be defined solely by advances in diagnosis or technique. It will be shaped by our willingness to see more fully — to recognise the child within the family, and the family within a broader social context.
Autism is not only a condition to be managed. It is part of a life to be lived, and that life unfolds, day by day, within the relationships, routines, and possibilities that surround each child.
*The opinions expressed in this article do not necessarily reflect the views of the newspaper.*
DAILY NEWS