It calls for a lifespan of strength and support

PHOTO: It calls for a lifespan of strength and support

SINGAPORE - It should have been cause for celebration. But Nicholas Yeow's parents dreaded the day he turned 16.

On that fateful day, he had to give up his hard-won place at the former Rainbow Centre Balestier School.

His three-year stint there had given his parents a breather from the unrelenting demands of his autism. It had served as a three-hour daily time-out for them to regain their strength, while also giving Nicholas an environment to develop in.

But the not-so-sweet 16th birthday deadline is one that hangs over the families of virtually every individual with autism here.

Autism care is widely available here for children, but once they enter adulthood, it almost dries up, leaving parents with the impossible task of looking after their grown-up children full-time.

This often signals a life sentence for parents, given that individuals with autism can expect to live as long as the rest of us.

'If there are no other co-morbid diagnoses, the life expectancy of an individual with autism would be similar to that of any other healthy individual,' notes Dr Jennifer Kiing, a consultant at the Child Development Unit at the National University Hospital (NUH), which deals with children who have autism.

There are currently 16 government-funded schools here catering to people with autism and all of them have cut-off ages ranging from 16 to 21.

Beyond that age, parents rely on the support of the three main voluntary groups who address the condition here - the Autism Association Singapore, the Autism Resource Centre (ARC) and the St Andrew's Autism Centre (SAAC).

Only two centres - the St Andrew's Day Activity Centre (DAC), which is part of the SAAC, and the SAI-i Autism Centre (SAC), which is part of Sunlove Home for the intellectually disabled - offer any sort of adult programme.

And their combined capacity is about 30, with both now at full capacity.

The two centres have lengthy waiting lists, which is not surprising given that that ARC, a voluntary welfare organisation that runs Pathlight School for children with autism, estimates that there are more than 24,000 individuals with autism here - of whom about 18,000 are aged over 19.

According to Ms Denise Phua, president of ARC, this statistic is based on an estimate that one in 167 Singaporeans has Autism Spectrum Disorder (ASD).

The number fortunate enough to receive specialised help is small in relation to the overall total of individuals with the condition here.

Fewer than 0.2 per cent of adults with autism, or only 1 in 706, get specialised help at DAC and SAC, according to figures from the ARC.

About 950 students are enrolled in special schools for the disabled and are diagnosed with ASD, according to the National Council of Social Services. And about 100 adults with autism also receive care at day car centres, in addition to clients with autism at centres for the intellectually disabled in Singapore.

The beneficial impact of such care on adults with autism is in no doubt.

The Christian Outreach to the Handicapped (COH), which runs two day activity centres for people with intellectual disabilities at Toa Payoh and Tampines, has 88 clients aged 16 to 55, and 24 of them have autism.

Ms Rosalind Ho, 58, a COH programme staff member with six years of experience in special needs care, has seen the benefits of mixing individuals with autism with those suffering from other disorders.

She points out, for example, that the centre's integrated programmes help those with autism accept changes in their routine - something many of them have a problem with - because they can see other clients coping.

Residential options are available for adults in some mixed-care centres. Bed spaces, for example, are provided for those with autism on a case-by-case basis at residential homes such as the Bishan Home for the Intellectually Disabled, which cost about $1,500 a month.

In addition, some adults with autism also live at home and work in mainstream jobs. Initiatives such as The Open Door Fund, which is administered by the Singapore National Employers' Federation, give companies incentives to employ staff with disabilities including autism.

Without enough training and support, however, holding on to jobs is often difficult for those with autism, says Ms Phua. For this reason, she and her husband Roland Tay, 55, the former senior vice-president of Singapore Technologies Telemedia, last year set up a cafe with the intention of making it an example of a 'supported employment model'.

The Professor Brawn Cafe at Novena Square has four workers with autism aged 14 to 21. They all received prior vocational training and further on-the-job training under Pathlight School coaches, who also guide their 15 other colleagues on how to work with them.

Ms Phua thinks that this sort of supported model makes the employment of individuals with autism more sustainable, but adds that there needs to be continued training and counselling because problems will be experienced 'for the rest of their lives'.

Relatively new disorder

 

Relatively new disorder

THE fact that the disorder is relatively new here, experts say, partly explains why there is relatively little support given to adults with autism.

Although the condition was formally recognised as a disorder in the 1940s, it only gained awareness in Singapore in the 1980s, says Dr Kenneth Lyen, consultant paediatrician at Lyen Children's Clinic. Many of those first diagnosed have only recently reached adulthood. And these adults are now falling through the cracks, exposing the fault lines in the care structure here.

The situation is not helped by the perception that the disorder is just a childhood affliction, or a form of mental illness. Autism is an incurable condition and no amount of therapy will make those who are low-functioning totally independent; although their condition might improve.

This means that adults with the condition are just as needy as the young.

Dr Jill Taylor, director of client services at SAAC, says: 'Learning how to live in the world is very complex. It is easy for us, but for people with autism, you need to take a lifetime to teach them.'

Early intervention is crucial to improving autistic behaviour, experts say. Younger children are easier to teach because they learn and internalise whatever is taught faster. Given help early, many with mild autism may eventually be assimilated into mainstream schools.

Dr Taylor says early intervention increases the percentage of those who can speak to make themselves understood - a crucial step towards a higher degree of independence. In 1987, 75 per cent of people with autism were non-verbal. Today, because of more early intervention programmes and better teaching techniques, the same proportion are able to make themselves understood.

However, experts estimate that a large proportion of adults with autism missed out on early intervention and are still not getting the help they need. And it all boils down to money.

'Most money gets poured into early intervention. Children are cute; it is easier to canvas for them than adults, who might not be able to return much to society,' says Dr Taylor.

Money aside, much of the challenge facing the care sector revolves around the sheer complexity of treating a condition that differs from person to person.

'The autism spectrum is wide and individuals may experience different levels of severity for each of the symptoms. This means that individualised treatment is needed for each person,' says Dr Lyen.

Also, adults with autism are more of a challenge than children. They are harder to teach because many have become set in their ways and are also difficult to control. 'Adults have their own routines built up over the years. That's why it's harder to teach them,' says Dr Lyen.

But he thinks that it is vital for services to continue into adulthood. Dr Lyen notes that adults often regress if left unsupported and may develop bad habits.

'The longer they stay without a programme, the more difficult it would be for them to develop socially acceptable behaviour,' says Ms Kala Karkal, deputy director of the department for special needs at the Academy of Certified Counsellors.

It is this belief that spurred her to set up the SAI-i Autism Centre, a non-profit adult facility under the Sunlove Home in Lorong Buangkok, a rehabilitative home for those with intellectual disorders that relies on public donations.

'At SAI-i, we work to maintain our clients' skills. We are not there to equip them with new academic skills,' she says, adding that a lack of funding restricts its intake to about seven adults, cared for by just one or two workers.

Long wait for place

Long wait for place

AS FAR back as 2006, Mr Yeow Hon Ming and his wife set their sights on St Andrew's Day Activity Centre (DAC) at Bedok South for their second son, Nicholas. They had to endure a 'highly stressful' four years before they secured a place.

Meanwhile, they hired a maid to look after him. And Mr Yeow, 60, retired early to help out at home, while Mrs Yeow continued running their childcare business.

Their eldest son Aaron, 25, also suffers from autism, but is considered high-functioning, although he has difficulties concentrating and is unable to hold down a job.

Each day at the DAC, Nicholas gets about four hours of physical education, recreational therapy such as swimming, and skills training in cooking or art.

For all parents in Mr and Mrs Yeow's situation, there is thankfully some good news on the horizon.

In September, St Andrew's is due to open a $23 million autism centre at Elliot Road to expand its current intake of adults with autism.

It will then be able to take in about 300 clients up to the age of 55 - more than 10 times its current intake - and employ up to 150 teachers.

By next year, it plans to convert its existing premises at Bedok South to a respite centre, for parents to drop off their adult children for a few nights a year just to get 'some time to rest', says Dr Taylor.

But Mr Yeow knows that this will not provide a long-term solution for hard-pressed parents.

When Nicholas turns 55, he will have to leave the day care centre.

There are still no long-term residential or group homes catering specifically for adults with autism here, although the Ministry of Community Development, Youth and Sports Enabling Masterplan (2007 to 2011) has outlined plans to widen the range of residential care options for people with disabilities.

Experts say it may take some time before adult autism residential or group homes, like the ones in the United States, Britain and Europe, get built here.

The state's focus is currently on children with autism.

Dr Lyen thinks that it's all about priorities. 'The Government needs to look at the whole lifespan of the condition.'

Dr Taylor agrees.

For housewife Yvonne Koh, 49, help and support cannot come a moment too soon.

Her only child Benjamin, 23, still needs directions and supervision to shower. His life runs like clockwork and follows a set daily routine, but from the time he wakes up at 6am to the time he closes his eyes at 10pm, he is never left alone.

'We don't foresee him living on his own,' says Mrs Koh, whose husband is a retired airport station manager.

'I worry that if I fall sick next time, there will be no one to look after Benjamin. I hope there will be a home for him in the future.'

This article was first published in The Straits Times.

Purchase this article for republication.

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