Sticking to the exacting daily routine an autistic child depends on can be difficult at the best of times.
They need structure to their days and without it they can regress to troubled behaviour.
Yayasan Pendidikan Insani, or Insani Education Foundation, is a place where autistic children from low-income families can find such structure and the vital therapy necessary to give them a chance of living the same quality of life as other children.
Insani has been closed for a year, since the pandemic began.
Nur Ezlyn Farah’s son Muhammad Dayyan Farish was diagnosed with mild autism when he was three years old.
He joined Insani at the age of four, and after many months of their therapy he no longer needed too much help with his daily routine and could decide when to shower and prepare himself breakfast. He could even speak a few words, too.
Then the pandemic hit, and Farah found herself having to continue his therapy at home.
Insani helped as much as they could.
“It’s just not possible for the teachers at Insani to do online classes the same as regular schools,” Farah told MalaysiaNow. “They have tried doing online classes and it was very challenging for him to cope with most of the subjects. He just couldn’t stay calm through a whole class.”
When MCO closed Insani, Anis Mahzuz Sharudin, found giving full-time attention to her five-year-old son Muhammad Ayden Muhammad Hafiz very challenging.
The 33-year-old mother, a full-time human resources officer, told MalaysiaNow that because they live in a flat it’s not often they can do outdoor activities with Ayden.
And there were bigger problems. Without Insani’s therapy, old and new behavioral issues began to appear.
“He was having issues to the point he wouldn’t eat for two weeks. He had a sudden phobia of food, and he wouldn’t even drink water.”
He also relapsed into self-harming behaviour, she says.
“Caring for autistic children is a full-time job.”
“The MCO disrupted his emotions. All he did was throw tantrums every day. We had to ask his teachers at Insani to teach us the therapy that could ease his troubles.”
Munqiza Naqhiya, 28, is a research executive at Insani. Her role involves researching therapy methods for autistic children and finding potential funders for the foundation.
“Caring for autistic children is a full-time job. You cannot hold down a job and care adequately for an autistic child,” she told MalaysiaNow. “Autistic children need undivided attention. If they don’t get it, they can become lost and harm themselves.”
Autistic children may hit themselves when they throw tantrums, she said. During their time in therapy, the children go through activities that reduce the risk of self-injury, but the lockdown has caused many of them to relapse.
“Most of our students when they are at home and miss their therapy, they start regressing and can go back to square one.
“Some parents tell us that a year ago their children had reduced the frequency of hitting themselves but now since they can’t go back to the centre, they have regressed and started hitting themselves again.”
During the MCO parents have had to learn how to conduct the therapy for their autistic children themselves. This is far from easy for them, especially when they are working full time.
The answer to the question of who suffers most because of therapy centres closing up for lockdowns is of course the children themselves.
But their parents have a tough time of it, too.
Munqiza told MalaysiaNow that Insani are trying their best to keep in touch with parents who need extra assistance and support during the lockdown.
“Essentially, we can say we are their information source. They tell us everything, but when the MCO put our institution on hold, it became difficult for us and the parents too.
“There’s not much we can do from afar.”