Thila Laxshman may be best known for her singing prowess or even her days as a leading actress, producer, master of ceremonies and trainer in the Malaysian Indian entertainment industry. Yet, being actively involved in community service and being an advocate for children with autism is by far her most important role, she says. Thila’s own son, Danvi Laxshman Siva Kumar, now a 19 year old student at the IMC Centre, was diagnosed with autism at the tender age of three, which spurred her interest in advocating for autism, a testament to the strength and depth of a mother’s love for all. She is the President of PERSAMA-2gether4autism, a non-profit association dedicated to providing help to B40 families affected by autism spectrum disorders.
“My calling is perhaps to deliver a message of hope for families struggling with autism,” she tells GoodNews.
As World Autism Awareness Month starts today, April 2, 2019, Thila shares her personal journey with autism for our Good News readers. Here are some of the highlights from her interview.
1. Tell us about yourself.
I come from a small town in Port Dickson, Negeri Sembilan. My working life began at the age of 19 with a subsidiary of TV3. Subsequently, I moved into sales with Grolier Malaysia and eventually branched out into public relations and events management. Needless to say, I went through a very challenging time to make it up until now.
2. What is Autism Spectrum Disorder?
Autism Spectrum Disorder (ASD), or autism for short, is a condition which affects brain development. It is characterised by social challenges, difficulties in communication and behavioural issues, according to experts. The effects can range from slight social challenges to severe cognitive impairment.
3. At what age did you realise that your son was autistic?
He was diagnosed under the Autism Spectrum Disorder at the age of 3 and a half years old.
4. Were there any early ‘warning’ signs of autism noticeable in your son?
My son was actually showing signs of autism which at that point of time we knew nothing about. He was walking on his toes, gazing, flapping his hands and humming. We took him to see a doctor after he stopped communicating and bonding with us. This was followed by a consultation with a child specialist to confirm his diagnosis. That was the last time I met a doctor regarding his condition.
5. What was your immediate reaction to the diagnosis?
My whole world came crashing down for a moment! I remember being only able to think about what I could do for him and what his future would be like.
6. How important is early intervention?
I immediately resigned from my job without thinking twice to raise my son and got him started on ABA (applied behaviour analysis) therapy with the assistance of Ms Caroline Chong (a strong mother of two ASD children). Each intervention session lasts for 4 hours and is usually done twice every day. This was the base of growth and bonding between Danvi and me. Since we could not afford most of the one-to-one therapies for Danvi’s condition back then, I thought as a mother I should take the opportunity to help and train my own son. Bearing this in mind, I enrolled for Diploma/Advance Diploma courses at the Linguistic Council which provided courses on behaviour management, learning disorders, language development, counselling and psychology. I also never missed out on any workshops or training sessions to be aware of the latest research and developments related to ASD.
7. As a parent of an autistic child, how has your son’s condition impacted your relationship as a family?
Raising a child with special needs is definitely a daunting experience for many parents. I have been through a lot of challenging times but the only thing that keeps me going is positive thoughts. Some families are torn apart or on the verge of separation due to poor management of emotions and stress. Both parents have to work together to care and integrate their child with special needs with the rest of the family. At the end of the day, every family goes through hardships and different levels of stress but never give up on each other.
8. Tell us about your purpose for establishing PERSAMA.
Throughout this roller coaster journey in dealing with my autistic son, I came across many parents with autistic children from the underprivileged income group and wanted to do something to help them. I gathered a few of my friends and formed PERSAMA-2gether4autism, a non-governmental organisation, providing sponsored services for the B40 category. Through our autism-friendly events, workshops and educational activities, there has been immense support from the community and I am humbled to inform that we have successfully funded many families in need. It is also my hope that PERSAMA offers support to families whose children have recently been diagnosed with ASD.
While Malaysia is “still a work in progress on treatment and awareness”, Thila said her “life is different because I now have a different way of seeing things” and she is grateful to everyone who assisted her family when in need. “Danvi has gone from very low on social skills to acing a ping pong game! As an extremely gifted boy, but yet socially delayed, my hope is that Danvi always continues to have the support that he has now. With April being Autism Awareness month, I feel that it’s my job to be a voice for Autism families”.
“My biggest advice is this, do not be ashamed or dismiss your child’s special needs. Find your child the help that they need, and if you need help, never be afraid to ask. It can get overwhelming for you. These children are no less – they are gifted and intelligent and just happen to process things differently than the neurotypical”.
“Celebrate your child for who they are!”