Duane and wife Philomina Wilson with their son, Daniel Eli.
Therapies, treatments and other measures can help, but condition still needs ongoing monitoring even in adulthood, says parent
RAISING autistic children is, by no means, a very challenging job, but it is not impossible for them to have a harmonious family life.
In this regard, Kuching Autistic Association secretary Duane Reggie says this can be achieved with the right therapies and treatments in place.
“With therapies, there will definitely be progress, but whether it’s 100 per cent progress, that is pretty much subjective. It all depends on the efforts from the children and their parents.”
According to him, the therapies would be most effective if the parents could follow the sessions closely and then, continue the training at home.
Wide spectrum
Daniel concentrates on his artwork, while being supervised by a teacher.
Duane says autism covers a wide spectrum, but there are two main types of the disorder – high-functioning and low-functioning, which can also be classified as verbal or non-verbal.
“For high-functioning autism in children, it’s sometimes identified as mild autism.
“Autistic children who are high functioning can develop better communication skills and able to speak more properly.
“With regard to most serious cases of autism, the child may not be capable of doing anything. Undergoing therapies and treatments should be able to help them, but more efforts are needed.”
Duane reiterates that with the right therapies and treatments, an autistic child can progress, but without any intervention measures, the child can also regress.
“Autistic children should undergo therapies for as long as possible, even into late adult life, because it is an ongoing process.
“Another reason is there are constantly new changes in the environment or lifestyle, and the children may need to be trained on new routines.
“We, as parents, need to anticipate that,” says Duane, whose 12-year-old son Daniel Eli Tersan has autism.
Contributing factors
Duane says Daniel and other autistic individuals dislike it when their routines are disturbed.
On the factors that may contribute to a higher chance of children suffering from autism, Duane admits that there are not many known reasons, but he does believe that nutrition and lifestyle play major roles.
“Back in the old days, we wouldn’t encounter many autistic individuals – probably because our old folks back then would climb trees, swim in the river or play in the drain when they were young.”
Duane says research has shown that physical activities are correlated with the development of a child’s brain and indulging in sports activities may contribute significantly to cognitive development, as well as improving memory and brain functions.
“These days, children do not do much physical activities due to the convenience deriving from the emergence of high-technology gadgets,” says Duane, who holds two certificates in sports science from the National Coaching Academy.
Adding on, he points out insufficiency of nutrients for the foetus during pregnancy as another possible contributing factor.
“The best year to detect whether or not a child is autistic is when he or she is about three years old. One of the red flags is the inability to speak at that age.”
Daniel proudly shows his artwork.
According to him, there is a chart detailing the developmental progress of a young child and based on this, parents should be concerned if the child has not developed certain abilities at a certain age.
“One behavioural problem faced by an autistic child is he or she often lacks awareness of their surroundings. They’re not aware of the surrounding dangers; they’re unable to sense the potential dangers in many situations, like crossing a road.
“The child may also exhibit poor motor skills, like having difficulty in inserting a string across a button or a bead.
“Another sign is whenever an autistic child wants to request for something, he or she would bring along an adult and point to the objects that he or she wants.
“Autistic children also tend to mimic their parents in speaking, like a parrot. This is because they cannot develop their own speech, so they copy the parents’.”
‘Creatures of habit’
File photo shows Deputy Premier of Sarawak Dato Sri Dr Sim Kui Hian (right) looking at an artwork being painted by a trainee at the Kuching Autistic Association Centre in Taman Desa Wira, during an event earlier this year. — Photo by Chimon Upon
Nevertheless, Duane believes that it is possible for autistic children to achieve an independent life when they are much older and join the workforce – with supervision provided.
“After they’re trained through therapies, they can understand instructions and the routines.
“Autistic children are like creatures of habit. It’s all routine-based and thus, they can definitely do a task if they understand the routine.”
Repetitive chores such as housekeeping, car-washing, laundrette services and catering are some of the potential job prospects for autistic individuals, as long as the workplace is accommodative and the people understand the challenges faced by them.
One important thing to know, says Duane, is that autistic children dislike their routines being disturbed, as this could manifest in them becoming frustrated and throwing a tantrum.
“My son has this set route that the parent must follow whenever we drive home from school.
“If you ever diverted from this route, he would throw a temper tantrum.
“They want to stick strictly to their routines.”
He cites cases where autistic children would try to hurt themselves if there was a disruption in their routines.
“But this most likely signals that the child is unable to express himself with regard to a certain problem.
Duane believes that there is always a reason whenever a child throws a temper tantrum, or behaves in a certain way.
“Whenever a child throws a tantrum, the parents would have to find out the reason.
“We need to trace back on what we did wrong. The parents play a critical role in the children’s progress.”
Support group
Photo shows an event conducted by Kuching Autistic Association at Pustaka Negeri Sarawak in Kuching in April this year, as part of a programme aimed at raising the awareness of autism.
Duane understands that most parents are worried about the future of their autistic children, including the possibility of them getting married, settling down, or earning a living.
In this regard, he says many autistic children are known as very talented individuals, some of whom even have developed impressive artistic skills.
“This is despite them having communication challenges.”
He says the Kuching Autistic Association provides the avenue for parents to interchange ideas about managing autistic children and also to form or join a support group.
According to him, the subsidised fee for the therapy conducted at the centre in Taman Desa Wira, is about RM500 a month.
“I think it’s probably the lowest in the country.”
Adding on, Duane says the association is planning to construct a new three-storey block to facilitate the provision of better programmes for autistic children, but at the moment, the building fund still lacks about RM1 million.
He also hopes that the government could look into categorising all expenses incurred in the children’s therapy sessions as a tax-deductible item that the parents could include in their annual income tax filing.
“Most importantly, never give up on these autistic children. As parents, we must always find the strength to decide on what to do next for them.
“Moreover, the entire family – siblings, aunties, uncles, grandparents – and even friends should be involved in their upbringing, just like the proverb: ‘It takes a village to raise a child’,” said Duane.