The Sibu Autistic Association (SAA) owes its existence to Thomas Ling a desperate father who in the depths of his despair in looking for help to care for his autistic son decided to help himself and parents in similar predicament by forming an association to help their children.
WORKING HARD: Children giving their best at their independent workstations.
COUPLE ON A MISSION: Ling (left) and his wife Ting are determined to make a difference in the lives of children with special needs despite their own obstacles.
Life was tough for Ling having to juggle between work and caring for his son.
Often he felt like he was paddling against a raging current unable to make any headway but instead of feeling sorry for himself Ling chose to ‘take the bull by its horns’ and formed the SAA.
He was further motivated by the strong support from friends and family members in this daunting quest.
“My motivation came from having a son with autism with nowhere to go, and the promise and encouragement of friends to support,” he said.
The starting point
Together with a group of parents of children with Autism Spectrum Disorder (ASD) and some concerned individuals, SAA was officially registered with Registrar of Societies on Aug 16, 2001.
Today SAA ran a centre for children with ASD from age two to 18 years old.
“We only cater for the needs of children with ASD (autism Spectrum Disorder),” Ling clarified.
The chairman disclosed among others, their programmes included Applied Behaviour Analysis (ABA), Treatment and Education of Autistic and related Communication handicapped Children (TEACCH), Picture Exchange Communication System (PECS) and Sensory Diet and Exercises.
He added others were music, group activities, arts and crafts, pretend play, social, moral, self-help and daily living and skills training.
The association’s centre started with only three children to more than
30 now.
Challenges faced
Ling pointed that financial constraints and raising funds were their biggest headache.
His wife, Josephine Ting – the centre’s supervisor, interjected, saying, “Salaries formed the bulk of our expenses as we do not engage volunteers. This is because volunteers come and go and this does not help.
“We need constancy in the teachers, who need to be continually trained on the job. Special skills are needed to teach children with ASD. Therefore we need to pay for these teachers and for their training.”
Ling added that another challenge was keeping the teachers as getting fresh ones would require them to start from square one.
Women volunteers and teachers
On a lighter note, Ting revealed that all their teachers were women.
When asked why, she figured that this could be due to the norm in the society.
Ling, however, felt women were more suited for the job as they had better personal skills and more patience, adding, “This is the strength of women.”
Social pressure and discrimination
Both husband and wife observed that the mistaken notion that autistic children was result of the sins of their parents or ancestors.
Even professionals such as doctors were not spared from the wrath this stigmatisation, noted Ting, adding “even they are embarrassed about it.”
She believed this perspective was rooted in the belief in ‘karma’ and that ‘bad things happen to bad people’”So, if we still hold to that kind of thinking, stigmatisation will always be around. And if we continue to be embarrassed or ashamed of our child, there is nothing much that anyone can do to help us,” Ling lamented.
Fighting stigmatisation and discrimination
Ting said public awareness through education was vital in fighting stigmatisation and discrimination.
She expressed optimism that sharing success stories with the public would also go a long way to curb such problem.
Added Ling: “If parents keep their children with such condition at home, they will not be able to reach their true potential.”
Early detection and intervention
Over the years, Ting observed that one of the biggest drawbacks was associated with parents’ attitude.
Asked for clarification, she said many parents were reluctant or refused to believe their children were autistic until rather late.
“The sad thing is that by the time their children reached primary school, it is a bit late for early intervention. Most effective period for intervention will be between one and six years old.
“Studies have shown that if intervention can be done at this stage, they have good chances of leading a normal life,” she explained, adding that by the time they reached seven years old and beyond, many of behaviours would have already set in.
To this, Ling added: “The message here to parents is that if you find your child is a bit off, don’t wait – something needs to be done immediately.”
Correcting parents’ misperception
The centre supervisor explained that their programme was very individualised and that was the beauty and uniqueness of it.
Asked for clarification, she stressed that they did not use the ‘one shoe fits all’ approach to access children’s ability.
“The programme is very individualised in the sense that the standard is accessed according to a child’s needs,” she noted.
At this point, she lamented that some parents were concerned that if they joined the special needs programme, their children might be ‘labelled’ as autistic.
“I think this is a misconception among the parents but if you come to the centre you will be able to appreciate the uniqueness of the programme.
“The thing is – it (uniqueness) is catered for an individualised education where, whatever is lacking in a child is detected and intervention applied to those areas for improvement,” she added.
She recalled an incident of a child, who was high functioning (ability to interact) but upon returning to his normal school, was ‘labelled’ a ‘mental’ case by schoolmates.
“This again is a huge stigma,” she moaned.
Towards this end, both felt that if the programme could be extended to normal schools, every child would be groomed in their area of uniqueness.
“Their strengths and skills can be identified early and honed,” Ling enthused.
Ting explained that children with special needs are very individualised in their learning.
Hence, teachers would work on these children’s strengths before getting into educating them, she pointed out.
Getting the facts right
Ting explained that the range of autism was very wide, ranging from those, who could not speak a word to those, who are high functioning. She said a whole range of children came under their care.
Through the early intervention method some children had made it to the normal classes in recent years, she noted.
Those, who did not go through the method (aged seven years and above) made remarkable progress in their developmental and life skills, she said.
However, she admitted that among children with special needs, autistic children were most difficult to manage. This was due to their behaviour, lack of communication and social skills as well as rigid thinking.
Citing a recent survey done here, she revealed that in every 500 children, one will be diagnosed with autism. She observed that the level of public awareness on autism had improved remarkably compared to some 15 years ago.
Ting revealed that recent observation noted some children with autism had high capabilities in learning and possessed high IQ.
Some 20 per cent of them fell in the range as having high functioning and can become professional people if properly guided, she said.
In fact, they could absorb lots of facts and do well in the mainstream education.
“As such, we hope this group of children would be given equal learning opportunity as typical children and be included into the mainstream education,” Ting advocated.
The rest, she said was grouped under the range of average.
Both gave thumbs-up to the 2.1 acres of land allocated by the state government for the Agape Centre, saying this would meet the need of a special gym for their sensory integration exercises if SAA is allocated a space.
Added Ling: “There is a need of a permanent place for our association to have a good gym for sensory integration program, which is a very important part of our children’s programme due to the nature of the problem of children with ASD, one of which is often sensory dysfunction.”
Future plans
Ling asserted that they would fight for the implementation of the policy of inclusive programme in schools. This would ensure the educational needs of the children with special needs were better taken care of.
He also said they were pushing for the establishment of a sheltered home for special needs people.
“After training children with special needs, we need to look beyond to ensure they are continuously taken care of. Having such a home would safeguard their wellbeing should their parents or guardians passed on,” Ting pointed out, adding that such establishments were nothing new in developed countries like USA, Australia and England.