Beyond Awareness: Why Autism Care Must Shift from Diagnosis to Real-Life Family Support

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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.

*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.

*This article was originally published in IOL and the Daily News on 2 April.

Photograph: Supplied

*The views and opinions expressed in this article are those of the author and do not necessarily reflect the official policy or position of the University of KwaZulu-Natal.