Why time is not on their side

Dannen Chan Kim-wai vividly recalls the joy he felt when his son - 'a lovely and healthy child' - was born in 2005. But there was a problem. As he grew, Rex didn't speak a word, he says.

'Friends comforted us with the usual words, saying that boys typically start talking later than girls. But when all my boy uttered was a single syllable 'da' at age two, we decided not to wait. We took him to the Child Assessment Centre. There he was diagnosed as having symptoms of autism.'

Hong Kong is seeing a big leap in autism cases. Last year, the Health Department diagnosed about 1,500 children under the age of 12 with autism spectrum disorders (ASD) compared with 218 children in 2000. That is a five-fold increase over the past 10 years.

Heep Hong Society, which provides education for special needs children from two to six years old, notes that half of the 824 preschool children under its care last year had ASD. If this number is combined with children with developmental delays, which includes potential ASD youngsters, the proportion would exceed 80 per cent.

Experts such as Dr Karen Sze Man-san of SAHK (formerly known as the Spastics Association of Hong Kong) attribute the rising number to greater public awareness and improved diagnostic techniques, rather than a growing incidence of the disorder. But that has also meant that public services to help families with autistic children fall far short of their needs.

'In the past, people associated autism with the mentally handicapped, and this stereotype was reinforced by the movie Rain Man,' Sze says. 'But thanks to increasing reporting in the media, more and more people have come to know about autism and its symptoms. They understand that a person with ASD may have a normal IQ but poor communication skills or language ability.'

The developmental disorder has often been under-diagnosed in Asia. But it was over-diagnosed in the West, says remedial education specialist Michael Maloney. Also a consultant at Hong Kong Junior, a school for autistic children, he compares the rise of autism cases to the idea that 'if you put more cops on the street, you find more crime'.

Alice Keung Yuen-ching, an educational psychologist at Heep Hong, cites three criteria that help identify children as being autistic: problems with social interaction (notably a lack of eye-contact), delayed language and communication skills (little or no talk) and repetitive behaviour (obsessive interest in rotational movements or patterns).

'These symptoms are evident among children as young as three. But in serious cases, such as those failing to copy or react to the act of pointing, the age could be as low as 18 months,' says Keung.

Experts agree that early intervention is the key to addressing the condition. The sooner they can treat the children, the better their chances of improvement.

'It is very important for the child to go through identification and diagnosis before age three, which is the golden period for treatment,' Sze says. 'Some American studies identify ASD symptoms in toddlers as young as one year.

'From the cases I've seen, I think diagnosis can be made with children aged a year and a half. There is no need for parents to worry about over-diagnosis. The test is similar to that of developmental delay. After all, no drug is involved.'

Pupils graduating from Heep Hong Society's care centre in Sha Tin this year illustrate the impact of early intervention. Ten of the 17 youngsters who will be entering mainstream primary schools had joined the programme when they were three-and-a-half years old. The remainder, who started the programme when they were just eight months older, will be going to special schools.

'For the youngsters who are referred to us, every day counts,' says centre director Eva Chan Yee-wa. A modest facility occupying a corner unit in a Sha Tin housing estate the Chun Shek centre takes in each year 60 preschool children with special needs, ranging from multiple handicaps to autism.

'In the past, only very serious cases were sent to us. But with a wider understanding of ASD nowadays, parents become less hesitant in using our services,' says Chan. 'Even so, some still feel bad about their children wearing the Heep Hong uniform or carrying our school bag. They try to cover the badge or hide the school bag in a supermarket bag.'

That has never been the case with five-and-a-half year old Rex, who is among the 10 pupils starting regular primary school this autumn. 'I look forward to playing and learning at the primary school,' he says. 'I like writing Chinese characters and playing on the slide.'

Although he still avoids eye contact, Rex is a smiling child who cheerfully chatters away if with a slightly odd inflection.

'He speaks Cantonese like a foreigner,' his father says.

But that is mere quibble to Chan. 'Three years ago I did not imagine Rex would come this far. It was a time when he did not speak a word. He would race around shopping malls and even at bus stops. That often left us exhausted and embarrassed. The only way to get him to stop was by force.

'We felt very lost after the diagnosis, when we were told we had to wait at least a year for treatment. The best help that medical social workers could offer was to refer us to websites and information about waiting lists. They told us nothing else, not even information about the golden period of treatment.

'So we took Rex to a private clinic for speech therapy. We paid HK$9,000 each month for 45-minute weekly sessions plus two day-care sessions. But there was no progress during the year. We didn't only waste money; we missed the critical window for treatment.'

Chan counts himself 'very lucky' to have secured a slot at Heep Hong for Rex after waiting for just one year. 'The progress was obvious. In one summer at the centre, Rex was able to express simple wishes such as 'I want this' or 'I want that', and a year later he was tying his own shoelaces and buttoning his shirt.'

But Rex also owes his progress to Chan's decision to devote more time to caring for his son. Chan quit his computer programming job to volunteer at the centre during the day, and worked part time in the evening instead. The modest monthly fee of HK$354 at Heep Hong made it easier for the family to cope with his reduced income. They also gained in other ways. Chan himself become more patient.

'From observing the interaction between the children and the professionals, I've learned the importance of being patient. I realised how wrong I was to punish Rex in the past. We just didn't know what was going on,' Chan says.

Consensus on early intervention aside, the cruel reality is children who have been diagnosed still have to wait between 18 and 32 months to get special care.

In January, there were already 4,642 children on the waiting list for special care.

Still, Chief Executive Donald Tsang Yam-kuen's inclusion of assistance for autistic children in his policy address last year signalled that the government was beginning to take notice.

In April officials announced an allocation of HK$36.58 million to provide 610 new preschool places for autistic youngsters for 2011-2012 - almost double the 316 slots in the current year. Another HK$45 million is being earmarked for recruiting 48 professionals (doctors, nurses and other specialists) to beef up assessment services, and HK$2.15 million to employ five more medical social workers.

About 3,000 special needs children, including 2,000 with autism, are expected to benefit from the initiative each year.

'It is obvious that the most imminent issue to tackle is the long waiting list. Only parents can understand the pain you feel from those long months of waiting,' Dannen Chan says.

But Eva Chan, the Heep Hong centre director, thinks that the new funding may not resolve the most urgent problem. 'The shortage of professionals, especially therapists, has hit us very hard. We have a vacancy which was advertised for six months without a single application. I think that as an NGO, we don't offer salaries and career prospects that are competitive enough with private practice or the Hospital Authority to attract fresh graduates and professionals,' Chan says.

At the post-nursery school level, the government is favouring integrated education to specialised training for autistic children.

It has announced a HK$38 million pilot project to be introduced in 2011-2012 academic year offering support within the mainstream education system. Eighty secondary schools and 30 primary schools taking part in the three-year scheme will run special classes for ASD students.

The government initiatives have spurred other charities to sponsor similar schemes. The Hong Kong Jockey Club, for example, has offered HK$8.23 million to each of three institutions - Caritas Hong Kong, Heep Hong and SAHK - to conduct a pilot scheme to assign expert groups to help ASD pupils and teachers at selected schools.

But a number of professionals and parents have reservations about directing resources to primary and secondary schools instead of pre-school centres.

Dr Kathy Chan Po-man, a psychiatry specialist, says intervention is most effective among children aged between two and three years old. 'Take language delay as an example. Our target age for best intervention is at age two. It would be too late for primary school kids at age six or above to start taking language therapy.

'So it is critical for young ones to receive timely treatment,' says Chan, who goes on to describe the government initiative as 'a drop in the bucket'.

Dave Tam, whose five-year old son, Tin-hang, is autistic, is concerned about the labelling effect the scheme might bring to autistic students, which could hurt their already fragile self-esteem. 'I know of parents, especially the mothers, who have failed to cope with their own emotions and succumbed to deep depression,' he says.

Cathy Chan, who has enrolled her five-year old son, Ken, in different nursery schools for the past three years, calls the integrated education policy 'a total failure'.

'If autistic children are put in the same classroom with normal kids, and taught by teachers with little training in special education, all three parties suffer. It's time the government considered setting up more special schools for ASD children. We know autism is not curable. But we hope he can live a happy life and will be able take care of himself when we pass away.'

Helping hands

Several NGOs run programmes for autistic youngsters:

Autism Recovery Network (since 2005)

Provides home and centre-based programmes for children with autism from age two. Tel: 2854 9113, info@autismrecovery.hk

Growing Together (since 1999)

Provides services for non-Cantonese speakers with special education needs. Tel: 2525 2270, iris@growingtogether.org.hk

Heep Hong Society (since 1963)

Provides services for pre-school children with special needs from two to six. Tel: 2776 3111, info@heephong.org

Hong Chi Association (since 1997)

Provides services for all ages and all levels of intellectual disabilities and affected families. Tel: 2689 1105/2661 0709, hdoffice@hongchi.org.hk / cfr@hongchi.org.hk

Rainbow Project (since 2000)

Provides special educational facilities for children with autism. Tel: 2548 7123, rainbow@rainbowproject.org

SAHK (since 1976)

Provides rehabilitation service for people with disabilities. Tel: 2527 8978 ho@sahk1963.org.hk