An ongoing financial, emotional toll

SINGAPORE - It is a picture of calm - mother and son sitting quietly at the beach on a sunny Sunday, saying little but enjoying some quality time together.

Rewind a few minutes and it was a very different story.

Soon after they arrived at Changi beach, Ashwin Gopala Krishnan, 23, was stomping his feet, yelling and crying in a wild outburst that attracted shocked looks from other beachgoers.

The tantrum lasted more than 30 minutes.

And it took his mother, Madam Harjinder Kaur, 51, all her strength and patience to calm her agitated son.

Such distressing scenes have become all too familiar for her over the years.

Ashwin, the second of her three children, was diagnosed with low-functioning autism, a severe form of the disorder, at age two. He has difficulty articulating his emotions and, as a result, becomes agitated and unhappy, at times flaring up in violent outbursts.

Increasingly, the primary school teacher finds it harder to restrain her son, a strapping 1.83m-tall young man who weighs 65kg.

While he gets stronger with age, she is getting weaker. 'My husband has heart problems and I get very fearful thinking about the day he might not be around to help me anymore,' she says.

Parents with children who have autism have to contend with such fears every day, knowing their children are gradually getting bigger and potentially more uncontrollable as time goes by.

There are a range of associated concerns as well - from the financial strain as one parent gives up work to care for a child who cannot be left alone, to the scorn from onlookers when a tantrum erupts in public.

These episodes can range from crying and self-injury to physically lashing out at caregivers.

Ageing parents

The added risk factor is that 80 per cent of individuals with autism are males, so most are eventually more than a match for their ageing parents.

Ashwin's father, Captain Gopala Krishnan, 57, a senior manager at Singapore Polytechnic, already finds it difficult to handle his son.

'It is getting very strenuous for me to try and control him when he gets violent,' he says.

But despite the difficulties, the family feels it is important to keep taking Ashwin out of the confines of the house. 'Like other boys his age, he craves a social life. There are times he gets lonely and cries,' says Madam Kaur.

If the family cannot handle Ashwin during one of his moods in public, they are sometimes forced to turn to security guards or passers-by for help.

Mrs Calista Tan, 57, a retired restaurant manager, faces a similar challenge with her 18-year-old son, Jonathan, who is becoming increasingly difficult to manage.

'I get very stressed and tense whenever I take him out,' she says.

'He is a big boy in size, but he acts like a young child and I have to be alert all the time. He is frightened when there are large crowds or loud noises around him.'

A year ago, the issue came to a head when she broke her leg after having to chase him.

They had been on their way to the St Andrew's Day Activity Centre when he bolted from her side.

She had no choice but to pursue him and, in her haste, stumbled and fell.

'I was so worried I wouldn't be able to catch up with him and he would run onto the road,' she explains.

Despite the mishap, she remains determined to keep taking Jonathan out as much as she can.

'He enjoys going out, so I will still try to (take him out) no matter how hard it is,' she says.

The discomfort Jonathan experiences in public spaces is a common problem for those with autism.

And like most families living with individuals afflicted by autism, the Tans find it difficult to have a social life or even time for family bonding.

'We haven't been out as a family in years, because someone always has to stay home to care for Jonathan,' says Mrs Tan, who is married to a part-time cook and has two older daughters.

Short outings to the park or medical appointments are fine, but Jonathan is unable to sit through longer events such as a family dinner.

'He gets restless once he finishes his food and we need to leave right away before he gets agitated,' she says.

Birthdays and Chinese New Year are especially difficult because either parent has to sit out the celebrations and stay home with Jonathan. 'It is really very hard,' she says.

'I spend all my time caring for him and after he falls asleep each night, I still have to do the housework.'

Maids are not a solution

Hiring a maid is not always a solution for such families given that individuals with autism are prone to violent physical outbursts.

'Even though we have a maid, she gets scared when Ashwin has his tantrums,' says Capt Krishnan. He has told their Filipino maid to lock herself in the room during these episodes for her own safety.

Consultant paediatrician Kenneth Lyen says most people diagnosed with autism will never be able to lead an independent life, and their parents often end up having to sacrifice their jobs in order to care for them.

Half of the six couples interviewed for this report became single-income families after their children were diagnosed.

'There is a tremendous strain on families financially because these children can be a huge expense,' says Dr Lyen.

Madam Pearl Ye, 49, had intended to return to her finance sector job after the birth of her son in 1991, but she changed her mind when Brendon was diagnosed with autism at age three.

'I didn't like to stay at home and it was a big struggle for me,' says Madam Ye, who has a degree in commerce.

She now spends her days caring for 19-year-old Brendon. He can perform most simple tasks like eating and bathing independently but is afraid of being left alone at home.

With one parent often having to quit work, coupled with the need to hire a maid, monetary worries often loom large.

'It is an ongoing financial toll for families whose children have autism,' says Dr Jill Taylor, director of client services at the St Andrew's Autism Centre.

In addition to doctors' fees and therapy expenses, medication is an increasing burden as sufferers progress beyond childhood and parents look to drugs to ease the mood swings that can trigger violent behaviour.

'Some of the very sophisticated drugs for autism are extremely expensive and sometimes those who should be having them can't afford the cost,' says Dr Taylor.

Mr Yeow Hon Ming, 60, a retired businessman, has two sons aged 21 and 25 with autism spectrum disorder.

When his younger son, Nicholas, was 13, the Yeows spent more than $10,000 on a Chinese medium who claimed to be able to cure him.

'But we were cheated,' he laments.

'We were desperate and people took advantage of the situation to make a quick buck out of our misery.'

Seeking a cure

Ashwin's family has tried many things to help him - from drug cocktails to reduce his mood swings to naturalistic approaches. At one point, he was popping 12 pills a day.

'The drugs were a vicious circle. Each medication we started him on produced a new side effect. We needed to introduce more pills to fix the side effects and it just kept going on,' says his mother.

Hoping that his diet could improve his condition, they tried a bevy of meal plans from no-fish, no-meat to less-sugar. Ashwin is now on a reduced-meat diet, where he has meat only about once a week, which seems to be doing some good.

'He gets violent tantrums less often and he is always calmer after having food like rice and vegetables,' says Madam Kaur.

Beyond the day-to-day difficulties, she worries what will happen to him when she is no longer around. The lack of long-term residential care homes available in Singapore for adults with autism tops many parents' anxieties.

While she has been able to place her son with the Institute of Mental Health (IMH) for short stints, most parents do not see this as a viable solution as IMH caters mainly for those with mental disorders such as psychosis.

Mrs Tan is pinning her hopes on enrolling her son into 'some kind of home'.

'I am growing old and I know that he cannot be independent,' says Mrs Tan, who does not plan on asking her two older daughters to care for their brother.

'One day, they will get married and have kids of their own. How can they care for Jonathan too? And even if they want to, will their husbands agree to it?'

With this in mind, families who can afford it such as Ashwin's are considering migrating. Ashwin's older sister works in public relations in London and she hopes to take him to Britain as she believes there are better services there.

But, adds Capt Krishnan: 'It is not just about having a home or a facility. People in Singapore are lacking in compassion. If Ashwin throws a tantrum in public, people shun us. Many a time, they just gawk and make hurtful comments.'

'Please don't be angry with me'

Madam Ye recalls a time when a stranger rebuked her for not being able to control her son in public. Brendon was four at the time and grabbed a passer-by's watch because he had developed an obsession with digital timepieces.

'I was scolded for being a bad mother,' says Madam Ye. 'I was so upset about it because it felt like a very unkind thing to say.'

Mrs Tan also remembers an occasion when Jonathan became agitated in public and she struggled to control him. A crowd gathered, but nobody stepped forward to help.

'I lost my temper and shouted at everybody to stop looking,' she says.

It seems that people tend to assume such behaviour is down to bad parenting because, unlike other developmental disorders such as Down syndrome, those with autism have no marked physical abnormalities.

For most parents, the key to overcoming such crises lies in keeping a positive attitude.

'Despite all the heartache, being with Ashwin has taught me a lot over the years.

He has kept me rooted and I've learnt to be humble because of him,' says Madam Kaur.

And even when Ashwin loses it for the second time that day, she remains patient.

Her son, in between shouts of distress, pleads: 'Mummy I love you. Please don't be angry with me.'

'There are some parents who see the time and effort they spend on their children as an investment. In that case, I am making a huge loss,' says Madam Kaur wryly.

'But I don't look at my son that way and I am just happy to be with him.'

 

This article was first published in The Straits Times.

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