April is Autism Awareness Month and three families share their experiences of raising autistic children.
UP till the age of three, Bobby* never said a word to his parents. He had little eye contact, and often threw tantrums.
His behaviour worried his mother Patricia*. But Bobby was her first child and she thought he was a late bloomer.
“I thought it was normal for children to behave like that – I had no other child to compare him to. It was not until my cousin, who is a teacher, alerted me about how different he was from the other children that I started to take notice of his behaviour. Still, I was hoping he would eventually grow out of it.”
When he didn’t, the 37-year-old homemaker was at a loss.
“Whenever I took him to the mall, he would start throwing tantrums if he did not get what he wanted. He would kick and scream, and sometimes for no reason at all. It was embarrassing for me because people would just stare at us. When I took him to a party, the other kids would be playing and he would just stand in a corner. I didn’t know how to explain it to my friends; I had to always blame it on mood swings.”
Patricia wasn’t at all prepared when the word “autism” came up during her research. And it didn’t help that her husband, instead of being supportive, was all for sweeping Bobby’s issues under the rug.
“My husband works very long hours and rarely has time to spend with our son so he doesn’t notice the things I do. I tried telling him about my worries but he would brush me off and say: ‘Nah, you’re thinking too much. Bobby will be fine.’ It was very frustrating for me.”
It took Patricia almost a year before she finally convinced her husband that they needed to bring their son for a proper diagnosis. After consulting a developmental paediatrician, Bobby was diagnosed with high-functioning autism.
“I was a bit depressed after that but I knew I had to move on. For my son’s sake, I had to be strong. I was mostly afraid of his future for him. I couldn’t imagine him relying on others for the rest of his life,” says Patricia.
Bobby, now four, has since shown marked improvement in his speech and social skills, after undergoing therapy at a special education centre in Selangor.
Nevertheless, Bobby’s family is still
struggling to accept his autism, and that’s why she cannot reveal her identity. Patricia and her husband have no plans to have a
“It’s been trying, but we are slowly coming out of our shell. Sometimes, I still find it difficult to have to explain to people that my son is autistic. Bobby goes to a mainstream kindergarten now and his teachers know nothing of his condition. For me, it’s better that way because I want them to treat him like a normal child,” says Patricia.
According to special needs educator Mishantini Sanderasagran, it’s not uncommon for parents to be in denial even after a child has been diagnosed with autism.
“Some parents may feel that they need to keep the condition a secret hoping their child will grow out of it one day. They may even feel that mixing around with normal children will take the autism away from their child. At the end of the day, it’s really about understanding what autism is,” says Mishantini, 34, who is the programme director of A.L.R.I.T.E, a play and achievement centre for autism in Selangor.
The term autism, which refers to a neurological disorder that impacts a child’s ability to communicate and socialise, has been marred by many misconceptions over the years.
“Till today, people relate autism to being mentally retarded. Some even confuse it with Down syndrome, which is an entirely different condition,” Mishantini points out.
Unfortunately, there is still stigma associated with raising an autistic child and many parents shy away from broaching the subject or confronting the disability.
“There’s no cure for autism, but there are therapies and it’s something you will have to work through all your life. Early intervention is very important to help your child cope. If you find it hard to be open about the condition, then it’s harder to expect society to accept and be tolerant towards those with autism,” she adds.
Spousal support is crucial to help the family come to terms with autism in the family. “If there is a communication barrier between the parents, it usually reflects negatively on the child,” warns Mishantini.
For project manager Dhatchynamoorthy Ramasamy and his wife Shamala Sivapathy, their firstborn’s autism brought them closer. Their seven-year-old son was diagnosed with mild autism four years ago.
“Even until now, the ‘why’ is always there. But instead of blaming each other for our son’s condition, we came to a conclusion that we needed to work together on this. Initially, it was a bit tough but we’re very open about it right now.
“Spousal communication is very important, but it also has to do with a lot of give and take,” says Dhatchynamoorthy, 35.
As the father-of-two has come to realise, caring for an autistic child can be physically exhausting and emotionally draining for the family. Outbursts are common for his son, which are usually triggered by a change in routine.
“In the beginning, I got angry a lot and found myself yelling at our son and feeling guilty afterwards. Doing that actually made things a lot worse as the both of us would be fuming in our own worlds. I think being aware of what autism is really helped – we had never heard of the word ‘autism’ until we discovered our child had it. And speaking to other parents who were going through the same challenges somehow got us more ready for the job.”
Explaining the situation to extended family members proved to be tough in the beginning, but with persistence, the couple managed to get everyone to accept that their son has a learning disability. Their son has so far undergone speech and occupational therapy.
His verbal communication has improved and he has shown an interest in art. Some studies have shown that parents with an autistic child have a higher risk of having a second child with autism. Dhatchynamoorthy and Shamala were well aware of this when they decided to have another child.
“It took us a long time to make that decision, but we finally decided we didn’t want our son to be alone. Thankfully, our second child turned out fine. Now they are bonding as boys do,” says Dhatchynamoorthy.
“It’s something we think about all the time. But as long as my wife and I are around, he will be fine. It’s what comes after – that’s still a big question mark. That’s the reason we are doing whatever we can now to make him independent. It’s the ultimate goal for any parents to want their child to be able to stand on his own two feet one day. For parents with an autistic child, the effort needed to do that is 10 times greater,” Dhatchynamoorthy adds.
Apart from the emotional upheavals and stress, raising an autistic child can be costly, especially if parents send them for regular therapies in private practice. Homemaker Fauziah Sirajudeen’s two eldest children – her 10-year-old son and seven-year-old daughter – are autistic, and their home-based and centre-based therapy sessions cost several thousand ringgit.
“Being able to cope financially has so far been the biggest challenge for me. Whenever possible, I want to give my children the best therapy available. At times, that can cost up to RM5,000 per child. A portion of our expenses also goes to hiring a helper, who has been extremely helpful to our situation,” says Fauziah, 42.
In private practice, an hour of speech therapy or occupational therapy costs between RM100 and RM150. Children need to go for weekly therapies regularly.
Fauziah has also adopted a gluten-free casein-free diet (GFCF diet) for her two children, which also incurs additional costs. Though scientifically unproven, there have been advocates for the use of this diet, also known as the gluten-free dairy-free diet (GFDF diet), as a treatment for autism and related conditions.
“Up till the age of three, my son was very difficult to care for. He had never said a word and was hyperactive, refusing to sleep at night.
“After he was diagnosed with autism, I started him on the GFCF diet, basically just replacing formula milk with rice milk, and he responded almost immediately. He could sleep better and was generally calmer,” says the mother-of-three.
When her firstborn was diagnosed with autism, Fauziah had already delivered her second child, who started regressing developmentally after a high fever at the age of two. By then, she was heavily pregnant with her third child, now a girl of five.
“My youngest has been very good with her elder siblings. She tries to care for them and does things like clearing the table to ensure that they do not accidentally break a bowl or a cup. Though they do not interact much with one another, they seem to share this special bond – if you separate them at any one time, they will show you how unhappy they can get.
“So I always have to take the three of them along whenever there is an outing. I have to pick and choose where we go – my son will start throwing tantrums if we stay out for too long. It’s tough, but we have to take it in our stride and simply make the best of the situation,” Fauziah shares.
* Names have been changed.
For more on parental support groups for autism, visit: Parents’ Resource for Autism Malaysia (http://www.pr4a.org.my/) and Dignity & Services: For and with Persons with Learning Disabilities (http://dignityandservices.blogspot.com/). For more information on A.L.R.I.T.E, a play and achievement centre for autism, visit http://alrite4kidz.com/.
Show your support
C.H.I.L.D. Sabah Walk for Autism
Date: April 5, 2014
Venue: Perdana Park, Tanjung Aru, Kota Kinabalu, Sabah
Tel: 08-8288 761/ 016 831 6952
Light Up Autism Run 2014
Date: April 6, 2014
Time: 6.30am to 12.30pm
Venue: Football field at Taman Tasik Titiwangsa, Kuala Lumpur
Tel: 019 331 4387
Annual National Society for Autism Malaysia (NASOM) Walk for Autism
Date: April 27, 2014
Venue: Citta Mall, Selangor
Tel: 03-7886 8986 or 03-7886 8233