PETALING JAYA: Caring for a child with autism often means reshaping every aspect of family life but many parents say every milestone makes the journey worthwhile.
For Nur Aisyah Mohd Rahman, the signs first appeared when her son, Adam, was about two years old.
“He rarely responded when we called his name and preferred playing alone.
“At first, we thought he was just a quiet child,” said the 37-year-old housewife from Shah Alam.
After months of uncertainty, Adam was diagnosed with autism spectrum disorder (ASD) at the age of three following assessments at a government hospital.
However, getting help proved far more difficult than getting a diagnosis.
“We waited almost eight months before therapy sessions could begin. Those months felt incredibly long because you keep wondering if you’re losing precious time,” she said.
To ensure Adam received additional speech and occupational therapy, the family now spends about RM1,500 a month at a private centre.
Aisyah, who left her administrative job to care for him full-time, said the family has gradually adapted over the past four years.
“Our whole routine revolves around him now. We celebrate things other parents may take for granted, like making eye contact, saying a new word or joining a group activity,” she said.
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While caring for her son can be physically and emotionally exhausting, she said it had also taught the family patience.
“He has shown us that progress isn’t about speed. It’s about moving forward, one small step at a time,” Aisyah said.
Meanwhile, sales executive K. Ravindran, 45, from Penang, said his daughter Meera was diagnosed with autism shortly before her fourth birthday after teachers noticed she struggled to communicate and became overwhelmed in noisy environments.
“I remember feeling shocked. My wife and I spent nights reading everything we could to understand how best to help her.”
Ravindran said the diagnosis prompted major lifestyle changes, with both parents adjusting their work schedules to accommodate therapy appointments.
“Every week revolves around therapy sessions, school, sensory activities and making sure one of us is always available,” he said.
The family also learnt to adapt to unexpected situations, including public meltdowns.
“In the beginning, we worried about people staring or making comments. Eventually, we realised our focus should only be on helping our daughter feel safe,” he said.
Now nine, Meera, has become more confident and independent, though the family continues to face challenges securing therapy appointments.
“There are still long waiting lists, so we’ve had to combine government services with private therapy whenever we can afford it.”
Ravindran believes greater public understanding is just as important as expanding healthcare services.
“Autistic children don’t need pity. They need acceptance, opportunities and support.
“When society becomes more understanding, it also makes life easier for families like ours,” he said.
“We waited almost eight months before therapy sessions could begin. Those months felt incredibly long.”
Nur Aisyah Mohd Rahman
