Parents with autistic children also need a lot of support
BANDAR SERI BEGAWAN
PARENTS with autistic children experience many difficulties, said the president of the Learning Ladders Society, a non-profit organisation founded in 2007 by parents of children with autism.
“It’s a long journey, from the starting point in which you think your child may have autism, to the time when you do find out that he or she does have autism,” said Dr Sharina Hj Yunus.
In an interview with The Brunei Times yesterday, Dr Sharina, who has an autistic child herself, said that one of the most common difficulties faced by parents with autistic children is the emotional stress.
The stress could initially arise when their child is diagnosed with autism, and then from the social stigma that comes with it.
Parents will then worry about what will happen to their child, she said.
“Emotional stress can also impact couples’ married lives. They also have financial strains to deal with, such as having to spend more in order to raise an autistic child,” she said.
Dr Sharina further said that parents may also have to deal with children who have difficulties dealing with an autistic sibling.
“A child with autism may get more or all of the attention compared to his or her siblings, for example. And (the) children may feel lumbered with the extra responsibility of caring for an autistic sibling.
“This is why parents do need a lot of support and a lot of help.”
Learning Ladders behavioural specialist Valerie Chong agreed that the biggest difficulty parents have is knowing that their child is autistic.
“Some people think speech delay (a possible early sign of autism) is something that the kids will outgrow.
“There are also parents who don’t really know how to deal with their autistic child, especially when they are screaming or throwing tantrums. That is when they turn to us for advice and we help them,” she said.
According to Valerie, some parents also find it difficult to commit to the requirements of ABA (Applied Behaviour Analysis) therapy that is needed for their children.
“When parents choose to start an ABA programme with Learning Ladders, it’s not just like leaving a child in daycare.
“They have to fully commit, as we need to talk to them about their child’s progress, and about things that they will need to provide for their child, such as rewards or learning aids,” she explained.
“While most of them want to be very involved, sometimes they really are unable to find the time to do so, especially for parents who have full-time jobs.”
Valerie also mentioned that stories of parents fighting to get their children into school are not uncommon, simply because schools do not usually have the needed specialists to handle autistic children. She hopes that other organisations will open up to help autistic children, as many parents are desperate and their children have nowhere to go.
Father-of-three Md Hashrin Hj Abd Halim said his six-year-old daughter Aishah is unable to listen to simple instructions, and does not communicate well with other children.
“Autistic children have individual ‘stim’ (specific, self-stimulatory behaviours found in autistic children). In Aishah’s case, she likes chairs and standing on top of them. After falling off, she simply gets up and climbs back on top of the chair, which can be quite dangerous.”
Md Hashrin said that while relatives understand and do not mind her behaviour at events such as family functions, it is more difficult when out in public.
“Other people may not be able to understand it when she screams in public, and that she needs to be calmed down,” he said.
He urged parents who have concerns or queries about possible autistic behaviour in their children to avoid listening solely to the opinions of family and friends, and to seek professional advice from doctors or specialists instead.
The Brunei Times