New social norms, disruption to routines: Trying times for autistic community as Malaysia enters COVID-19 recovery phase
KUALA LUMPUR: These days, mornings start at 7am for Mohd Adli Yahya, 56, and his son, Luqman Shariff Mohd Adli, 21.
The two of them then head to the supermarket at 8am to purchase ingredients such as chicken, onions and spices for their ayam percik catering business, under Mohd Adli's food establishment Autism Cafe Project.
To accommodate senior citizens and people with disabilities, several supermarkets and hypermarkets are opening earlier than their usual hours shortly after Malaysia's movement control order (MCO) was put in place on Mar 18.
This allows Luqman, who is on the autism spectrum, to shop at ease before the rest of the customers arrive and form a long queue at the entrance.
“There aren't many people during this time, so social distancing isn't an issue. And even if we were to enter a crowded place, he’s been slowly learning," Mohd Adli told CNA.
Once the shopping is done, the father and son go home and start preparing the chicken. Although Luqman's parents do not let him handle a knife, he helps with other tasks, including washing up, which he enjoys.
After that, they head out again to deliver their orders, which usually ends by lunchtime.
Having to tweak the business model of Autism Cafe Project, a food and beverage outlet staffed by persons with autism in Shah Alam, Selangor, to adhere to the restrictions imposed by the MCO, is one problem.
The other is helping Luqman to adjust in the long-term to the new normal - social distancing, reduced interaction as well as new social cues and restrictions - which he might not fully understand.
There is no official data on the total number of individuals with autism in Malaysia, as the Malaysian government maintains a voluntary registry of people with special needs and disabilities.
Back in late 2018, then-deputy women minister Hannah Yeoh was quoted by the New Straits Times as stating there were an estimated 300,000 people on the spectrum, but only 20,000 or so had registered with the ministry and received their Persons with Disabilities (PWD) cards.
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The COVID-19 pandemic and the lockdown measures have resulted in trying times for both autistic individuals who crave routine and their caretakers who have to deal with their meltdowns.
Some families have reported disruptive or self-injurious behaviour, said Feillina SY Muhammad Feisol, chairman of National Autism Society of Malaysia (NASOM). There have also been cases of broken furniture as a result of a huge frustration.
Even as certain social restrictions are eased with Malaysia entering the recovery phase of MCO from Jun 10 until Aug 31, challenges remain in their post-MCO life as they adjust to the new norm moving forward. Some parents also reported financial difficulties as the pandemic has rendered them jobless.
MCO DISRUPTED THERAPY FOR INDIVIDUALS WITH AUTISM
Approximately 9,000 children in Malaysia are born with autism annually, according to NASOM website.
A policy paper published by the Institute for Democracy and Economic Affairs in 2015 noted that the number of children enrolled in special needs programmes had doubled from 2006 to 2013. It quoted a small-scale Ministry of Health survey that showed the prevalence of autism at 1.6 per 1,000 children.
This subsequently resulted in an increased demand for autism and early intervention programmes as the individuals grow up. However, NASOM noted that all autism-related non-government organisations combined do not handle more than 1,500 children today.
NASOM runs 17 centres throughout Malaysia offering early intervention and vocational programmes, along with early assessment and other programmes at its one-stop centre in Setia Alam. A total of 550 people aged between three and 40 receive special education and therapy at NASOM.
Depending on the nature of the condition, a large number of autistic individuals receive various types of intensive therapeutic support, such as Applied Behavioural Analysis Therapy, Occupational Therapy, Speech Therapy and Physiotherapy, said psychologist Katyana Azman from Pantai Hospital Kuala Lumpur.
However, the sudden and strict enforcement of MCO in March has disrupted the continuity of care, she added.
The abrupt halt to these interventions left many parents struggling to cope with the impact on their child’s development. They have to assist with adapting to the change in routine, and also balance the stress of being cooped up at home.
Although the government eventually opened up daily activity with the conditional MCO on May 4, which allowed centres to open with specific standard operating procedures, Katyana said many parents then questioned if the long break in care had affected their child’s progress.
For NASOM's Feillina, the worry is that with the new normal, social distancing comes with new challenges, especially for autism therapy.
“If the new normal means things such as a rigorous hygiene routine, like washing your hands and masks, the community can certainly be trained and they would adhere strictly to this routine,” she said.
However, it was the uncertainty that individuals with autism cannot handle, and how long until this new normal is not needed, she explained.
“Change is very difficult and different for a person with autism, but it can be taught and learnt. But for how long?
"For some kids, we had to teach them to be sociable, to make eye contact, to salam (greet) and to communicate. These kids would prefer to isolate themselves and live in their bubble ... And that's why social distancing would create havoc in their therapy and undo all they have learnt."
"If it was just masks and hygiene issues, that could be easily tackled," Feillina explained.
ONLINE ORDERS KEEP CAFE EMPLOYEES OCCUPIED
Mohd Adli, father of Luqman and founder of the Autism Cafe Project, noted that the pandemic has affected the autistic employees emotionally when the restaurant had to be closed in mid-March.
The outlet was started back in 2017 as a means to provide a living to Luqman, who was diagnosed with autism at two years old. Mohd Adli had quit his job as an executive director with a multinational bank’s corporate social responsibility arm to take care of the business.
Autism Cafe Project currently employs 16 autistic individuals aged between 18 and 40, as well as 16 full-timers and part-timers.
During the MCO, many of the staff members with autism were restless due to their disrupted routine.
"There is no sense of purpose, their normal routine has been disrupted and they were disturbed emotionally. Even Luqman was agitated during the first few days back in March," said Mohd Adli.
Other parents also shared similar experiences in their chat group. Some of their children, Mohd Adli said, had tantrums or meltdowns.
While Autism Cafe Project remains closed for dine-in, it is now promoting products and dishes made by the boys online.
Orders are channelled to them and they make the food at home. For instance, one boy, Haziq, sold 10 batches of cookies and is now baking 20 more.
"Now, post-MCO, they can go out, their time is being filled up and they can cook again, they're happy, and when you make a sale, you earn money," Mohd Adli said.
The cafe was supposed to expand in 2020, but the pandemic and the subsequent dampened economy have derailed the plan. Mohd Adli is now working with fundraising platform SimplyGiving to expand the kitchen and bring more people with autism back to work.
"I think the boys are adapting very well to this new normal. Actually they're particular about their safety and their hygiene, and I'm pretty positive about reopening up the cafe," he added.
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ADJUSTING TO THE NEW NORMAL
As things stand, the new normal and the social distancing rules will remain in place for a fair while, Katyana, the psychologist, noted.
“One of the biggest challenges thus far has been with communicating and implementing that in the special needs community,” she explained.
Although many possess the cognitive skills needed for comprehension, or at least to respond to the new environmental rules, others found this change fundamentally distressing, Katyana shared.
“And given that things are changing rapidly, it makes the task of caring for these individuals additionally challenging, as guardians are unable to make long-term plans,” she said.
One way to help and prepare their children though, said Katyana, was to first determine their awareness over the events around them, as each individual presented different skills and challenges.
“This assessment would allow carers to gauge how best to navigate the ‘new normal’ topic.
“Don’t be afraid to use therapeutic tools or seek professional advice on how to communicate effectively with your child, and to ensure that as much normalcy is maintained as possible despite the circumstances,” Katyana said.
Katyana also noted that there are parents who were concerned about their ability to pay for the care support for their children with autism due to the MCO’s impact on their income.
This is a challenge for NASOM too, said Feillina, as some parents could not afford to pay for their children's special education after losing their jobs.
"It's back to the grind, as with everything, it's back to fundraising. It's difficult, but you'd be surprised, there are still kind souls out there who still help out," she said.
For some families in need, NASOM has waived the fees or offered a 50 per cent discount, she added.
For Mohd Adli, he is working hard to keep Autism Cafe Project afloat amid the pandemic, as the cafe is his way of ensuring that Luqman and his buddies have a future and a safe space somewhere.
Like other parents of autistic children, he hopes he can protect and care for Luqman for as long as possible.
"I hope to be able to outlive him, or even go into the next life with him. You want it so much, and parents in the group say very much the same," he said.
"But just in case," he said, "it's better to prepare for the event that I might leave earlier, rather than worrying. That's why the cafe is so important, so that they have a place where they can be safe, be as normal as we are, and earn a living."