Teenager Amanda Khoo begs her mother to take her outdoors, but refuses to wear a mask when she steps out despite her family’s best efforts.

This is not because she lacks social responsibility. Rather, the 18-year-old has severe autism and cannot understand why she needs to stay at home or wear a mask.

Autism, clinically referred to as autism spectrum disorder (ASD), is a lifelong neurodevelopmental disorder and is characterised, in varying degrees, by difficulties in social interaction, verbal and non-verbal communication and repetitive behaviour.

The circuit breaker period in Singapore to curb and contain the coronavirus pandemic has taken a toll on Amanda’s family as her meltdowns have become a daily occurrence.

Like many autistic children, Amanda, who is non-verbal, gets frustrated when familiar routines are disrupted. She stomps her feet, screams in frustration and hits her head, including at night.

“I wake up every day with a heavy heart, wondering if it’s going to be a more difficult day. But we take it one day at a time,” says her mother, who works in education and wants to be known only as Madam K. Ooi.

She adds: “You can’t reason with a severely autistic child.”

Before the circuit breaker period, the teenager’s routine included school and going to a student care centre for special needs children on weekdays. There were also outings every Sunday to a mall, the supermarket or Changi Airport.

Senior psychologist Cindy Kua, who founded mental health therapy centre SkillBuilders, says routine helps to give people with autism spectrum disorder a sense of stability and security.

“Even for adults with typical functioning, staying at home for one month can be challenging, all the more for people with special needs who tend to have lower tolerance,” says Ms Kua, 39, whose special needs clients comprise children and young adults.

She says most of her clients were coping relatively well last month. However, in recent weeks, parents told her their children have become more irritable and are insisting on going back to school.

RESOURCES

Caregivers can access a range of resources online to help them tide through the pandemic.

1 Inclusive arts movement Superhero Me has produced a learning package to help children and people with disabilities understand routine changes due to the pandemic.

The package includes a photo slideshow with videos and a comic strip. It was created with the support of Dr Lim Hong Huay, an epidemiologist and paediatrician; Dr Leong Hoe Nam, an infectious diseases expert; Eden School and the Lien Foundation. Go to superherome.sg/covid19

2 Dear Doctor, a series of weekly discussions from May 14 to June 4, aims to give parents of special needs children practical tips to cope with common challenges.

Helmed by the Lien Foundation and the National University Hospital’s child development unit, the sessions are held over Zoom and livestreamed every Thursday night.

Go to facebook.com/JourneywithGeorge

3 The Enabling Guide is an online resource by SG Enable, an agency set up by the Ministry of Social and Family Development to support people with disabilities. The website has information on disability schemes and services, and educational resources for caregivers to use.

Go to enablingguide.sg

The return of students to special education schools will be staggered from June 2. All students will be back in school by June 8.

Mrs Florence Choy says her son Julian, 16, who has moderate autism, misses going to school, working out at the gym and having play dates with his friends.

The 54-year-old business operations director recalls an incident in late April when he put on his uniform and insisted on going to school. She drove him there and he ate lunch during the 20-minute drive, as he usually did.

“I had to slowly drive past the school gates six times to show him the school was temporarily closed. We did a video call with his teachers, who showed him they were at home and reminded him there was no school,” says Mrs Choy. She also has a daughter, 13, who attends a mainstream school.

Julian, she adds, has been more frustrated in recent weeks and sometimes hits other members at home when he has a meltdown.

Frustration aside, the circuit breaker has also triggered anxiety among some who are autistic.

Mr Sean Bay, 25, who has mild to moderate autism, makes it a point every year to watch the National Day Parade with his friends, who are fellow Pathlight School alumni, either at the parade venue or from a vantage point.

Anxious about how the parade will be scaled down due to the pandemic, the part-time digital animation student at the Institute of Technical Education expressed his feelings by drawing parade participants donning masks and practising safe distancing.

His mother, content producer Koh Joh Ting, says: “He watches the parade religiously every year. It’s a huge event in his personal calendar.”

CAREGIVER BURNOUT

Dr Koh Hwan Cui, principal psychologist at the KK Women’s and Children’s Hospital’s (KKH) department of child development, says children with developmental needs and their parents have to cope with the new normal of staying home like everyone else.

However, these children may face more difficulty managing anxiety, changes in routines and stress, due to their communication, socio-emotional and behavioural needs.

Having to be teacher and therapist to their children during this period of home-based learning can be challenging for some parents as they may also be balancing work or household responsibilities, says Dr Koh.

When everyone else in the family has gone to bed, Mrs Choy stays up to spend some time alone. She realises she has been sleeping late, sometimes as late as 2am, since the circuit breaker period started as there are more responsibilities to tend to during the day.

Enter their world to discover what they like

“When everyone goes to bed, I just want to cling on to the quiet moment. Sometimes, I have the television on and I’m mindlessly watching it. It’s important to have that personal space,” she says, adding that she also does yoga to unwind.

For Madam Ooi, it is difficult to take a breather by taking Amanda out for even a quick walk in the neighbourhood when her daughter has a meltdown. The teenager yanks off her mask immediately after her mother puts it on.

“Her teachers have put together a nice story about mask-wearing. But Amanda has not worn a mask before and it is tough for her to understand, ‘why now?’. She doesn’t even allow us to put a plaster on her wound,” says Madam Ooi.

Dr Koh from KKH says: “Wearing a mask can be difficult for children aged two and older and those with developmental needs. For example, some children with autism or those with sensory issues may find it even more uncomfortable having something covering their mouth and nose.”

Second Minister for Education Indranee Rajah said in Parliament on May 5 that children with special needs, accompanied by their parents, also need to go outdoors for some fresh air during the circuit breaker period.

She said children with ASD and attention deficit hyperactivity disorder, in particular, need this for self-regulation, and called on everyone to be more understanding when they see a parent with a special needs child outdoors.

“Sometimes, the children – and they could be adult children – will not be wearing a mask. The Government understands and has stated that enforcement will be flexible for such persons,” she said.

FINDING WAYS TO COPE

For some people with special needs, it helps to tap outlets such as the arts and cooking to keep themselves engaged at home.

Mr Bay – whose art has been featured on public transport and merchandise by The Art Faculty, which promotes the works of students with autism – has been honing his artistic skills on various software platforms.

Meanwhile, Ms Magdalene Ong has kept her son Chalmers Wong, 15, who has moderate to severe autism, occupied with cooking and his other hobbies, such as painting, sand art and playing the piano.

She has taught him to prepare more than 10 dishes, such as hor fun (fried flat rice noodles) and chicken wings, since the circuit breaker period started.

“To engage special needs children, you need to enter their world to discover what they like and develop their interests,” says Ms Ong, who has also experienced more challenges in caring for her son during this time.

His tantrums in recent weeks involve kicking and screaming, especially when he struggles to understand new concepts introduced in home-based learning.

Ms Ong, 49, who declines to give her occupation, says: “In the first or second week of the circuit breaker, he started screaming in the middle of the night and this went on for at least half an hour.”

Chalmers, who was a bowling champion in competitions such as last year’s Singapore Sports School Para Games, also misses his favourite activities.

He has written down a list of places he wants to visit when it is possible to do so again, such as church, Jurong Point and Marina Square. “He shows the list to me and puts it beside his bed like a teddy bear, although he seems to understand now that he has to stay at home,” says Ms Ong.

Despite these struggles, she says one silver lining of the pandemic is that she has learnt new things about Chalmers, such as how he is able to empathise with her. She recalls an incident when, overwhelmed, she screamed and told him she was stressed by his tantrums. This prompted an unexpected reaction from Chalmers.

“He said he doesn’t want me to die. He associates stress with death because a few relatives died recently, mostly due to heart attacks. The next day, he did not throw any tantrums and I rewarded him with his favourite KFC meal.”

Caring for people with special needs

Parents can find safe ways to organise physical activities at home if their children with developmental needs enjoy going outdoors, says Dr Koh Hwan Cui, principal psychologist at KK Women’s and Children’s Hospital’s department of child development.

She encourages parents to consider their children’s interests and strengths when planning activities for them.

For example, they can have obstacle races or get the children to dance to music, she says.

If the children do not want to take part in a new activity, parents can take the lead by doing it first and showing them it can be enjoyable, says Dr Koh.

For example, if the kids do not want to exercise, parents can go ahead with the exercise and continue doing it for a week. This shows the children they are also committed to exercising in the stay-at-home schedule.

“Parents are encouraged to provide their children with a variety of activities at home that includes physical exercises, learning and play activities,” she says.

She also cautions against allowing unlimited screen time to keep the children occupied, as research shows excessive screen time is associated with an increased risk of obesity and sleep problems. Poor sleep is also linked to depression, anxiety, hyperactivity and inattention.

She encourages parents to stop all screen activities at least an hour before the children’s bedtime.

Screen time can also be spent watching meaningful and developmentally appropriate programmes and engaging the children in discussions or activities related to these programmes, she adds.

On wearing masks when leaving the house, Dr Koh says parents can consider using games or their children’s favourite activities to have practice sessions at home. They can designate the area near the main door as the “mask-on area” and mark it with a picture of a person wearing a mask.

“They can provide labelled praises, for example, ‘Jay, good job keeping your mask on’ and lots of positive attention such as smiles and high-fives, or tangible rewards like a favourite sticker when the child wears the mask for a specific amount of time,” says Dr Koh.

Meanwhile, epidemiologist and paediatrician Lim Hong Huay says caregivers can try to stick to their children’s usual routines. “Try to get a sense of the child’s routine in school or at the early intervention centre and think of what it looks like in the family setting.”

Activities like a school-bus ride can be replaced with a car ride or a walk to the bus stop and back home. Visual and verbal cues, such as saying “school time”, can also help the child transit to home-based learning, says Dr Lim, who is a mother of three, two of whom have autism.

She led the development of Echo, a framework for early childhood intervention in Singapore.

She says: “See what the child is used to, what you can replace and see what the family is typically doing and who can help with responsibilities.”

She adds that parents and caregivers should also take time to practise self-care, for example, by getting their exercise fix.

“Carve out time for yourself and know what tops up your emotional tank. I think that is the most important thing to help us survive.”

Prisca Ang

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