Beyond autism awareness lies a family’s daily struggle with costly therapy, long diagnosis waits and fears about the future of their special needs child.
I READ about Azimah Abd Rahim last week and I had to put my phone down. She is a mother who straps her special needs daughter to her chest while she rides out on food deliveries.
Not because she wants to. Because there is no one else. Because leaving her child behind, even for an hour, is not a risk she can take. Because the world has not given her any other option and so she has made her body the solution – her arms the harness, her heartbeat the reassurance and her presence the only childcare she can afford.
I know that feeling. Not in identical circumstances – our lives are different – but in the marrow.
In that particular tightness in the chest that forms when you realise – slowly and then all at once – that your love for your child, as enormous and consuming as it is, cannot fix what needs fixing. That love, for all its ferocity, is not a therapy session – it is not a diagnosis, it is not a cheque.
My daughter is eight years old. She is autistic and non-verbal. She has never said “Amma” and may never say it. And still she is the axis around which my entire world turns. Every morning I watch her and feel two things at the same time: an almost unbearable tenderness and a very quiet terror.
Here is the truth that parents like us carry – the truth that does not fit neatly into awareness campaigns or feel-good posts about celebrating neurodiversity. Loving your child with everything you have does not pay for their therapy.
It does not fast-track them through a six-month to one-year waiting list at a government clinic just to get a diagnosis confirmed on paper – a piece of paper that unlocks services, that opens doors, that should not require nearly a year of limbo to obtain.
And if you cannot wait, if your child is struggling now and needs answers now, you go private. You spend upwards of RM5,000 for an assessment. Some families do it. Many cannot. And so they wait, watching their children, counting the months.
We speak about special needs children in this country as though the primary problem is awareness. If we just understood autism better, if we just accepted these children more openly and if we just changed our language – then everything would fall into place.
But awareness does not fund occupational therapy. Acceptance does not cover the cost of a speech therapist. And the parents navigating this terrain – the ones strapping their children to their bodies to earn enough to keep the lights on, the ones choosing between therapy and groceries, the ones making impossible calculations every single month – they are not failing their children; they are being failed.
By a system stretched too thin. By support structures that exist on paper more than in practice. By a society that applauds their love and then leaves them to figure out the rest alone.
I have sat in waiting rooms, I have filled in forms that led to other forms, I have made phone calls that went unreturned and attended meetings where I left clutching pamphlets instead of help. I have smiled, nodded and thanked people for their time while quietly calculating in my head whether we could manage one more therapy session this month or whether something else had to give.
And I am not even in the worst of it. There are parents out there holding on with far less than I have, running on fumes and ferocious love and not much else.
What Azimah’s story did was crack open something I usually keep tightly sealed – the question of the future. Not in a distant, theoretical way but in the way that ambushes you at two in the morning when the house is still and the fear finds its way in.
What happens to my daughter when my husband and I are no longer here? Who will know how she likes her food? Who will know the sounds that comfort her and the ones that overwhelm her? Who will understand her without words, the way we have learned to understand her without words? Who will love her the way only a parent can – completely, unconditionally, without needing her to be anything other than exactly what she is?
I have no answer. And that is the part I cannot write my way out of, no matter how many times I try. There is no neat ending to this story because there is no neat ending for parents like us.
There is only a mother on a motorcycle, her daughter strapped to her chest as she chases the next delivery, hoping the ride is safe and the money is enough. There is only another mother standing over her sleeping child in the stillness of the night, memorising every expression, every preference, every unspoken cue because one day someone else may have to know them too.
People often tell us to be strong. We are, we have to be but strength is not what our children need most. They need systems that work when we cannot. They need therapists they can reach before precious months slip away. They need schools, support and communities that will still be there when our arms are no longer around them.
Every parent knows their child may one day have to live without them. Parents of children with disabilities carry a different fear: that their child will be left in a world that still does not know how to care for them.
I have made peace with the fact that my daughter may never say “Amma”. What I cannot make peace with is the thought that one day she may still be looking for me, needing me, loving me in her own quiet way and I will no longer be there to answer.
That is the fear that keeps me awake. And I know I am not the only mother lying in the dark, hoping the world will love her child when she no longer can.
Hashini Kavishtri Kannan is the assistant news editor at theSun.
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