According to the National Autism Society of Malaysia, 9,000 babies, or every one in 68 newborns, are diagnosed with ASD annually.
Despite the stigma often associated with the condition, having a child with ASD is not the end of the road but, rather, the beginning of a new journey altogether.
This is the message that Dr Shan Narayanan wishes to share with all parents in his newly released book, “Why Me?”, which was launched in Bukit Bintang, Kuala Lumpur, on Saturday.
“Why Me?” delves into how Shan, a general paediatrician with over two decades of medical practice, helped Mohanita Azlina come to terms with her now seven-year-old son’s diagnosis, and the steps they took to ensure he has a happy, normal life.
Speaking with FMT Lifestyle after the launch, Shan revealed that he had been inspired to study medicine after being diagnosed with Factor XIII deficiency, a rare bleeding disorder.
“Because of my condition, I’ve had two near-death experiences,” he shared. “As a sign of gratitude to God, I’m dedicated to helping people with autism.”
Shan said it is his professional and personal duty to help those affected by an ASD diagnosis. “I believe in parental empowerment. One must empower the parents to take care of their children.”
ASD involves “a deficit in social communication and repetitive, restrictive behaviour”, he explained, adding: “These core features must be present at a young age and in all settings, including at home, outside the home, and at school.”
The condition has three levels of severity, with level-one patients commonly requiring the least support, and level-three the most.
“When provided the support and with progressive improvement, people with ASD can live lives as normal as possible,” he said.
According to Shan, many Malaysians do not understand autism, which hampers their ability to empathise with those on the spectrum.
Furthermore, many parents are wary of taking their children for an assessment despite observing signs and symptoms, fearing a potential diagnosis.
And even if their child was diagnosed with ASD, there was no guarantee they would know what to do next.
Hence, Shan embarked on writing “Why Me?” to teach parents of ASD children how to go about their everyday lives.
The book consists of five chapters written in uncomplicated language so as to be accessible to the general reader. Chapter one focuses on pre-diagnosis; chapters two and three on diagnosis and what ASD is all about; chapter four on post-diagnosis treatment, and the final chapter on how to cope as a parent.
While the book is most helpful for parents and teachers, it is also aimed at anyone who wishes to have a better understanding of ASD and those who live with it.
FMT Lifestyle also spoke with Mohanita on her experience of being a mother to a child with ASD. She acknowledged that, being involved in childcare, she’d been aware of its existence but had not expected her own son Muhaimin to be diagnosed with it.
“We spotted a few red flags and sought help,” she recalled. “But in Ipoh, there are not many ASD specialists, so it took time before we found Dr Shan.”
Admitting that Muhaimin’s diagnosis was “devastating at the time”, she added: “I was so sad and upset with myself, and I wondered if I had done anything wrong during my pregnancy.”
But thanks in part to Dr Shan, Mohanita has been able to press on. “Whatever challenge I have now, I will attend to it. But I’m always preparing for the next one.”
Indeed, if there’s anything Shan hopes readers will take away from his book, it’s his list of advice at the end.
“Discuss with your child’s teachers and therapist and have a plan for your child,” he said. “Take one step at a time. Work on the ‘now’.
“Be consistent and persistent. Seek support when needed. Ensure you have your ‘me time’, and do not blame yourself.”
‘Why Me?’ is available at major bookstores nationwide. You can also purchase it online. Proceeds from book sales will go towards funding Ipoh’s Pusat Jagaan 3PKI, a care centre for children with ASD.