Daily life a struggle with Asperger's

SINGAPORE - They look like just another bunch of pals enjoying a restaurant meal together, until a metal cutlery container falls off the table and clatters to the floor.

The noise brings conversation to an abrupt halt and jerks all 11 at the table into a state of stunned silence - eyes shut, fists clenched.

Ten seconds or so slowly tick by before the silence is broken by one of them asking the girl sitting closest to the fallen container if she is all right.

All those present have Asperger's Syndrome, a mild form of autism, and met online last year via Wrong Planet, a United States-based autism website, which has almost 36,000 members worldwide including about a dozen Singaporeans.

After spending time chatting online and getting to know one another, they met for the first time at a Citylink Mall restaurant in November. And, since then, have had another gathering, with a third in the pipeline.

The group is testimony to the fact that people with Asperger's Syndrome are able to lead fairly normal lives - most attend mainstream schools and hold down regular jobs.

They are not easy to distinguish from everyday people because, although they have classic autism attributes such as communication, social and behavioural problems, they have them in a milder form.

But - as their get-together showed - they are particularly vulnerable to what is known as sensory overload.

Sensory stimulations such as light, sound and touch impact them more acutely than others. And, if there is too much sensory stimulus, their brains can go into overdrive.

Ronald (not his real name) has been diagnosed with a combination of Asperger's and Attention Deficit Hyperactivity Disorder. The 19-year-old, now enrolled in a local junior college, has slowly learnt to control his reaction to external stimulation but this was not always the case.

'When I was younger, I used to be very sensitive to these stimulations. I would freak out and have a meltdown if I was in a place that was too crowded or too loud,' he says.

'I could end up shouting and flailing my arms until someone restrained me because I had no control over my own body.'

It does not come as a shock to discover that, for many Asperger's Syndrome sufferers, daily life is a struggle.

Taking a long time to learn things

Edmund (not his real name), 27, one of those at the gathering, admits to taking a long time to learn the things that come naturally to others.

With a diploma in logistics from Ngee Ann Polytechnic and a job as a computer programmer, he seems to have integrated completely into mainstream society.

And he has all the appearances of being 'normal', but the business of learning basic interaction skills such as maintaining eye contact has been painstaking.

'When I was young, my mother had to train me to turn my head towards the person speaking to me. However, I still had no idea how to establish eye contact,' he says.

'As I got older, I learnt to pick out prominent objects near a person's face, such as an earring, and focus on that. It took years of practice before I finally learnt to look a person in the eye.'

While skills such as these can be picked up over time, being thrown into new situations such as moving from primary to secondary school can often leave them traumatised.

'I had a hard time adjusting after I left secondary school and went to polytechnic. I could not get used to the new routines that were very different from my previous school,' says 24-year-old Timmy (not his real name).

'It was also very difficult for me to make friends because I did not know how to start conversations or find a common topic with my new classmates.'

The predicament of male Asperger's Syndrome sufferers can be particularly harrowing given that they often have to do national service if their condition is not deemed severe.

'Terribly traumatised'

'I foresee myself needing some counselling or help with assimilation when I go into the army next year,' says Jack (not his real name), 18.

Now in his second year in junior college, he understandably worries about his impending enlistment, acknowledging that it will be a rough environment for him and one where he expects he may be 'terribly traumatised'.

While his teachers have always known about his condition and have helped him cope at school, Jack is concerned that NS might be an altogether different ball game.

But, for those in such situations, trying to find help is not easy.

Most counsellors specialising in autism deal mainly with children, so Jack's only option is to approach general psychologists who deal with a range of mental disorders. He would like to have a counsellor or therapist who specialises in autism, so they could 'understand us better'.

The downsides for not being able to get the right sort of help when on the cusp of entering a new environment can be disastrous.

'New environments, especially one as unforgiving as national service, can put them at risk of being bullied,' says Dr Jill Taylor, director of client services at St Andrew's Autism Centre. 'And, if they are unable to get the necessary help to guide them through, this could lead to depression or even suicide.'

Unlike those with autism who may not fully understand their condition, those with Asperger's usually have a sense of self-awareness that can put them at a higher risk of problems like depression.

'They are usually part of mainstream society and for them it feels like they are almost able to be 'normal' and fit in, yet at the same time they still have problems that hold them back,' says Dr Taylor, who has a PhD in adult autism.

'And while they are aware of what is wrong, without help, they do not know how to fix it.'

Most experts agree that Singapore lacks services geared towards those with a milder form of autism.

'There are pockets of good expertise, but it is not broad enough at the moment,' says Dr Taylor. 'There is more commitment from the Government to special needs in recent years, but I think it will take a while for us to get to an ideal situation.'

Meanwhile, Ronald and others rely on friends they met online for support.

Standing at City Hall MRT station waiting for his friends to arrive, he cuts an awkward figure with his feet pointing in different directions and his arms sticking out at awkward angles.

Edmund, who is standing beside him, carefully moves Ronald's arms and gently tells him to turn his feet in and relax his arms.

Ronald narrows his eyes in concentration as he tries to follow the instructions he knows he has to obey if he is to be fully accepted into everyday life.

 

This article was first published in The Straits Times.

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