Autism is a neurological disorder that affects brain function. Symptoms of this disorder are usually discovered within the first three to six years of life. According to the World Health Organisation (WHO), it is estimated that 1 in 100 children have autism. In Malaysia, at least 9,000 children with autism are born each year.
Despite the relatively high number of autistic individuals in society, autism is still misunderstood and stands the challenge of stigmatization. The need for greater awareness is necessary so that autistic individuals can grow up and live an independent life where they are understood and given equal opportunities to succeed. Thila Laxshman tells her story…
Raising Her Autistic Son With Empathy And Love
45-year-old singer Thila Laxshman knows that coping with autism is not easy. For 22 years, she’s experienced first-hand what it takes to parent an autistic child. Danvi Laxshman is Thila’s son and he was diagnosed with autism at the age of three.
Every family that has a child with special needs has to be accomplished with a special energy to handle the child. – Thila Laxshman(Singer and Founder of PERSAMA)
Although her role as a caregiver and a mother is tough, Thila attributes the success of raising Danvi to her mother. If there was ever an issue with Danvi, Thila’s mother always brings an optimistic perspective to the situation. She has never complained and proves herself to be the best grandmother one can hope for.
My mother is the coping mechanism of my life. – Thila Laxshman
As a working parent, Thila is constantly pressed for time because outside of work, her full attention is on Danvi. She acknowledges that their life is not ordinary. People with autism often have co-occurring conditions. For Danvi, it is severe sleep disorder – a condition that makes it difficult for him to fall asleep and may have frequent sleep disruptions throughout bedtime.
With interrupted and insufficient rest, Danvi’s behaviour is also affected, making it difficult for mother and son to commit to impromptu gatherings, social activities or even a simple meal outside. Easy tasks such as wearing a face mask or getting ready to go for a doctor’s visit can be a struggle for Danvi if he woke up on a ‘bad day’.
At times, Thila finds herself emotionally, physically and mentally drained. But, every new day springs new hope. She picks herself up to ensure her son has good days.
Taking It One Day At A Time
Having an established routine is particularly important for those with autism. This helps create stability, security and comfort.
Unfortunately, the Covid-19 restrictions affected Danvi’s daily routines, resulting in increased frustration. He has not gone to school and has remained at home longer than usual.
Nevertheless, Thila was determined to make the most of the pandemic days. They start the day with yoga, and Danvi entertains himself with TV shows. Then they would paint, or go for a drive. She makes sure he gets out for a breather every day.
Although some days are harder than others, Thila is grateful that she has the privilege of spending time with Danvi and she is certain that their relationship has grown over the years.
It’s The Little Things
As a non-verbal and hypersensitive child, Danvi’s ability to be independent makes Thila a proud mother. For instance, being able to pour himself a glass of water. This is because she realises the struggles he faces on a daily basis.
Every little thing that he does on his own is always an inspiring moment – Thila Laxshman
Through it all, Thila knows what it means to love and care because of Danvi.
If I tend to break down, he comes after a while and he gives me a hug to tell me ‘Don’t worry mum, we will be fine’. That touches my heart all the time. – Thila Laxshman
This reminds Thila that her experiences with Danvi are meant to be and that she wouldn’t have it any other way.
Establishing PERSAMA To Help Others
Danvi gave Thila a newfound appreciation for life and inspired her to start her own NGO, Persama in 2012 to help other families with autistic children cope and understand their child’s needs and help them thrive. The heart of Persama is really for low-income families where specialised healthcare and awareness services are sparse and often too expensive to afford.
Initially, there were multiple hoops to jump through. But for Thila, it was all worth it. Today, Persama has aided countless families in dealing with autism.
The biggest change he made in my life is to understand what motherhood is all about. It gave me new purpose. – Thila Laxshman
Thila has her share of struggles while balancing her personal life and the NGO. Though she wrestles with numerous roadblocks, Thila does her level best to sustain Persama with her own funds and hard work. She’s also grateful to the Persama team and well-wishers for their effort and contributions. The NGO hardly receives public donations, unless events are organised.
Persama organises Jananam, an event held annually to generate funds for the NGO throughout the year.
On the second of April recently, Persama collaborated with JKFashion, a designer, for the Autism Rules Fashion 2022 event. The event exhibited clothing with art paintings of Danvi and other children from Persama. Profits from the event are channeled to the families of the autistic artists.
Persama also incorporates workshops and yoga, among other activities, which parents learn and practice with their autistic child. These sessions are provided for free to relieve the burdens of B40 families.
Can Our Society Fully Embrace The Autistic Community?
According to Thila, Malaysians are still behind in embracing the autism community.
But there’s lots of awareness being created compared to 10 years ago. People [Malaysians] should get themselves involved in charitable causes to understand more about autism because autistic children are not mentally disabled. – Thila Laxshman
Thila gives credit to India for supporting the autism community with its multiple approaches.
As autism is a huge spectrum, the government’s involvement to help those with autism is crucial. An effective plan is called for. Parents of autistic children worry about their children’s livelihood. Providing trained teachers and an increased number of centres are also needed.
Thila also stresses the importance of a conducive neighbourhood for people with autism.
People have to understand the pain and the struggle which parents goes through in managing autism especially when the child has behavioural issues. – Thila Laxshman
Words Of Wisdom
For new parents of children with autism, Thila calls these parents to work as a team, adding that it is important to get a child tested and diagnosed properly at a young age. Early intervention is crucial for the development and growth of the child.
She also encourages them to seek parent support groups. Talking to other parents in the same boat reminds parents they’re not alone.
More than anything, they need your time. It makes a world of difference and alleviates the child’s suffering in different aspects.
Remember parents, that you are the best therapist for your child.– Thila Laxshman.
Thila’s strong advocacy for autism with love and light is a reminder for us to reach out and be more involved within the autism community.
The relationship between Thila and Danvi is truly inspirational. The joy they bring to each other is immeasurable. It’s also a reminder that during our hardest battles, the love of a mother outweighs them all.
Spare a moment and reach out to Persama to see how you can lend a hand. Good deeds are never wasted.