“Coming to terms with my firstborn and only child having autism has been the single hardest thing I’ve ever had to do. When we first became aware that Zach was different, he was about a year old. He didn’t respond to his name, and seemed oblivious to the people around him.
Friends and colleagues tried to allay our fears by saying he was too young for a proper diagnosis, but by the time Zach was 2, we had no doubt. Being a paediatric doctor did not spare me from the many days and nights of crying, questioning and pleading. I had no answers, either for myself or for my family members who were all looking to me.
Life with a child with autism challenged so many things we took for granted, like going to a shopping centre or a food court. Figuring out his everyday needs consumed us, because he couldn’t tell us what he needed. We lived in a state of crisis aversion, doing whatever was necessary to avoid tantrums and meltdowns which lasted long beyond the Terrible Twos.
“Being a paediatric doctor did not spare me from the many days and nights of crying, questioning and pleading.”
We tried the conventional, evidence-based methods available in Singapore. He went for occupational therapy and speech therapy. We started a home-based therapy programme using Applied Behaviour Analysis (ABA). We enrolled him in a special school.
After 2 years, he went from being a non-verbal, disconnected but happy child, to a non-verbal, rigid, controlling, stressed out and anxious child who obviously wasn’t happy anymore. We couldn’t blame him. If your whole day involved people telling you to stop doing what you want to, and do only what they wanted you to do, it would be completely understandable if you didn’t want to have anything to do with them.
We looked through his school’s log book and found notes like ‘Cried 20 minutes today’, and ‘Cried 30 minutes today’. And we wondered ― why are we paying someone to make him cry? Zach finally ‘told’ us through an almighty sobbing episode that lasted 16 hours, that he’d had enough. So, we stopped all his therapy and started looking for a better way to reach him.
After many more wrong turns, we found a little-known method called the Son-Rise Program, which approaches autism from an entirely different perspective. Instead of the conventional understanding that autism is a neuro-behavioural problem that causes our children to behave inappropriately, the Son-Rise Program actually believes that autism is primarily a weakness in social and relational “muscles”. The behaviours that the world deems socially unacceptable are actually self-soothing or self-care mechanisms.
One method that this programme advocates is we join in with their repetitive behaviours, in an attitude of love and acceptance. Instead of telling them to stop what they’re doing, joining sends the message that we are interested in doing what they do, just because they like to do it and because we love them.
Although it sounded crazy, we decided to give it a try. We felt we had nothing to lose at this point. So, off we went to the Autism Treatment Center of America in Massachusetts to learn how to help our child using this programme.
“He didn’t need those repetitive behaviours anymore, because he discovered how much more fun playing with someone could be.”
From that first day we started entering his world through joining his behaviours, we’ve seen breakthrough after breakthrough. Instead of what everyone feared ― that we would end up reinforcing the very behaviours we were seeking to stop ― he actually started to look at us more, and smile at us, as if saying, ‘You finally get it! Isn’t this amazing?’ Soon, he didn’t need those repetitive behaviours anymore, because he discovered how much more fun playing with someone could be.
Previously, we were very outcome driven ― like, how many times did he look at me, how many words did he say today? So, when you didn’t get the desired outcome, it was a ‘down’ day. It was a very depressing way to do things. When we got the courage to divorce ourselves from the outcome, we were able to invest more in the relationship ― that took the pressure off him and us, and we started seeing so many breakthroughs.
We stopped aiming for functionality. Before this, it was all, ‘I need him to take a bus’, ‘I need him to go to the toilet’, ‘I need him to brush his teeth’ and so on ― it was all about function.
But we stopped aiming for all that, because it’s not the be all and end all. The end is actually the relationship ― building a loving relationship.
We learnt that we needed to believe that our child understands everything you tell him. That was such a light-bulb moment for us: Because Zach didn’t speak, he didn’t show that he understood us at all. But we found out that he did understand when we tried to toilet-train him.
Previously, we had tried all methods under the sun. He was 4 or 5 years old, and he just didn’t seem interested. But then, we realised that we had never explained it to him. We were just saying, ‘Okay, 20 minutes, let’s go’. He had no idea what he was doing in the toilet. When we learnt that he actually understands a lot more, we decided that we were going to put all that behind us and focus on social interaction and relationship building first, while getting him to trust us.
“He loves songs and he loves dancing. He expresses his concern for us with hugs and kisses. It’s truly amazing."
When we decided that it was time to try toilet-training again after a few months, we explained everything in graphic detail ― from the feeling that you get when you needed to pee, to the walk you need to take to the loo, to taking the pants off. We managed to toilet train him in one day. He was, in fact, ready! He just needed someone to explain and believe in him.
In the last year and a half of running a Son-Rise Program for Zach, he has moved from no speech to speaking in sentences, asking questions, and recently even commenting on the world around him.
Kids with autism are thought to be very literal and not so good at creative things. But Zach’s imagination has blossomed so incredibly ― he even created a poem, just a few months after he started to talk:
Has no hair
It’ not fair
But I don't care!!!
He loves songs and he loves dancing. He expresses his concern for us with hugs and kisses. It’s truly amazing.
We are finally hopeful and positive about his future, and believe that he can and will become someone truly amazing.”
Suzanne Goh lives in Singapore with her husband Paul and son, Zach, 10. Goh, a paediatric endocrinology physician at KK Womens’ and Children’s Hospital, is the director of Embrace Autism , a non-profit group founded by parents and volunteers working together to promote Autism Awareness.
Learn more about the Son-Rise programme from Raun Kaufman, the global director of the Autism Treatment Center of America, who was himself diagnosed with severe autism at 18 months. Check out SmartParents' interview with Raun here.
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