FINDING PARENTS WITH SIMILAR EXPERIENCES
Support for parents of children with autism is “absolutely important and indispensible”, said Dr Lim of CaringSG.
“Without loving extended family members, supportive friends, and an understanding and inclusive community, the autistic person and caregivers will suffer tremendously.”
Autism affects all aspects of a person’s life and the caregiver’s daily living, and one in seven caregivers of people with autism have moderate to severe anxiety and depression, she added.
Parents may also need to deal with embarrassing, unexpected or dangerous situations, and can be misunderstood as allowing their children to behave badly.
“This can be very emotionally draining, not to mention physically challenging as well, especially as our children become stronger, faster and louder adults, and we caregivers become older, slower and weaker,” said Dr Lim.
“If you see any caregiver who needs help, do not just stare or walk away. Stay a while and observe, be empathetic and be ready to step up and offer a helping hand,” she said.
Mrs Finuliar’s family turns to friends and support in church, but she also hopes that families with special needs children can come together, such as to celebrate their children’s birthdays. Some children with autism may not have many friends and guests may not understand their behaviour, she said.
“Surround yourself with people who really understand, who help your children or have concern for them,” she added.
Similarly, Mr Tan and his wife have found the most effective support is being around parents with similar experiences, although he has observed that these “mini support groups” are rare in Singapore as people often struggle privately.
“When certain milestones come up, like in schooling, that’s when all parents of kids with disabilities will find that the typical support structures become totally useless,” he explained.
“Even your best friends will not have that shared experience; even your parents or relatives who may be extremely well-meaning and love you to bits will not be able to understand.”
The father of twins, whose daughter’s autism is more severe than his son’s, has heard “a lot of comments that are well-meaning but eminently unhelpful”, such as from someone who told him “kids are like that, no need to baby them, fall a bit is okay”, he recalled.
“Hey, my daughter went to the ICU (intensive care unit) when she caught the flu, so no, it’s not okay. We’re different and we encounter different obstacles and experiences.”
Mdm Ng has likewise found that many parents of children with special needs won’t tell their friends what they are going through, especially men who tend to struggle with emotional support.
“You end up really airing a lot of dirty linen; there’s a lot of weird stuff that nobody will understand,” she said.
For example, her son used to bite or scratch her or her husband when they tried to trim his fingernails, and loved opening and closing drawers at home.
“If you don’t experience it day to day, it sounds like, oh he’s just opening drawers, what’s the big deal right? Literally opening everything in the house and spoiling some cabinets because of it,” she said.
The repetitive behaviour can really wear down a caregiver, she added. “I don’t think people realise the extent of it and how difficult and emotional it is.”
Ms Prema Govindan, director of independent living and caregiver support at SG Enable, said building an inclusive Singapore must start with a mindset shift to recognise that every person is an equally valuable member of society.
“When we have a more accepting and non-judgmental culture, persons with disabilities and their caregivers will know that they are not alone on this journey, and they can reach out for support when they need it,” she said.
“As a society, let’s continue supporting caregivers and persons with disabilities by taking the first step to reach out (and) play a part in enabling inclusion beyond acceptance.”