#MumStory: Having A Son With Autism Has Helped Her Face Challenges Head-On

#MumStory is a series by The Singapore Women’s Weekly to uncover the underrated and underreported moments in motherhood and parenting — because we believe every mum has a story worth telling. Got a story to share? Email us at sww@sph.com.sg or slide into our DMs on Instagram.

When Norfadillah Binte Ahmad's (Dillah) son Yusuf was diagnosed with autism at the age of three, her first reaction was a sense of guilt. She wondered if his condition was due to poor nutrition during pregnancy — she had severe morning sickness and wasn't able to eat well. And then came sadness.

“I realised he probably has to be alone in this world and struggle when I am gone one day,” Dillah shares. “But, at the same time, I know I have to be positive and find a solution.”

Dillah admits she used to worry she would die in her sleep, “What would happen to Yusuf then?” But at the same time, her will to stay healthy and alive became that much stronger, “He is the main reason I am well and living to the best of my ability.”

While Dillah has never been formally diagnosed with autism, she was told by a psychotherapist that she is very likely on the spectrum. And this has enabled her to understand her son and his condition better. 

“It gave me a clearer picture of how to manage my son better,” the 41-year-old says. “I know how he feels and how I can help him regulate his feelings and manage his stressors. I see Yusuf’s behavioural issues better with more patience and understanding.” 

“For instance, when Yusuf has a meltdown or struggles with anger issues, I can relate because I know of strong emotions I can't control myself,” she adds. “However, I have coping skills like breathing techniques and moving away from the stressor. That is how I can help Yusuf.”

Yusuf is now 14 and Dillah acknowledges that having a child with autism has taken her on a learning journey: “I have learnt to be more patient and less judgemental of others, and have self-love. And I take it upon myself to overcome inevitable challenges with a clear mind.”

When was your son diagnosed with autism? Did he show any signs before that? 

Yusuf was formally diagnosed with severe autism at the age of three-and-a-half and was recommended to go for early intervention. Yes, I knew the signs of autism and saw them in Yusuf when he was around 18 months old. He lined up his cars, always stacked up toys, was very rigid in his ways and did not make eye contact with us. It started getting clearer that he had early signs of autism spectrum disorder (ASD). 

I remember very vividly when he was two and we held a birthday party for him. He didn't want to play with his friends but instead, found a long twig to play with and started stimming with it. At age four, Yusuf did therapy at one of the EIPIC (Early Intervention Programme for Infants and Children) schools in Singapore, and was recommended to go to a structured school where he could continue in a special education course.  

I applied for Yusuf to get into the Early Intervention Programme at Rainbow Centre and he got in at age five. Currently, he attends the SPED (Special Education) school at Rainbow Centre Margaret Drive School and is in the middle programme. 

What kind of help did you get as a parent? 

I had a lot of family support when Yusuf was growing up. My relatives helped me to care for him when I was in distress or felt overwhelmed, which happened quite often back then. They understood that it was very important for me to have some time to myself to regulate my emotions. 

Through Rainbow Centre too, Yusuf has been able to equip himself with emotional regulation or daily living skills as well as improve his social skills as he gets to participate in a lot of group activities. He is doing contemporary dance as his co-curricular activity (CCA), which exposes him to more movements and activities outside of the classroom. 

The financial aid we receive from Rainbow Centre helps significantly in reducing the school fees. I was able to redirect the extra money saved towards other essential expenses according to Yusuf’s needs, such as additional therapies and enrichment activities like art and religious classes. 

What kinds of reactions have you got from people around you? 

My family are very supportive and encouraging, and I see that they have a lot of care and concern for me. I am grateful that they have been willing to take care of Yusuf when I'm struggling and make sure I take care of my mental health so that I can continue caring for and loving my son. 

My friends have also asked me along for playdates with their kids, so that Yusuf can work on his social skills, as interacting with other kids his age was a challenge for him. They were not discriminative or judgemental, and I knew that it was a safe space for Yusuf to explore. 

The public reaction has been more mixed. When Yusuf was growing up, we received stares and sneers when he had his meltdowns or got angry in public because they did not understand his behaviour and quirks. Some people asked why he acted this way and I was not ashamed to share that he has autism. I am more than willing to educate the public wherever possible.

These reactions from the public are upsetting but I have learnt that it is even more important to be patient and advocate for Yusuf. I would say, over the years, I have developed thick skin so that I can protect my son. 

These days, people are more aware and tolerant of individuals with special needs, as compared to before. We should continue to work towards getting people to be more accepting, and organisations like Rainbow Centre (through their SPED schools and other programmes and services) have been doing a great job in generating awareness. 

Have you seen any change in your son as he has grown older? What kind of help or therapies does he get at the moment? 

Yes, definitely. Yusuf has been more regulated through early intervention, therapies and education he is receiving, thanks to external therapy sessions and Rainbow Centre. I applaud the work that the teachers at Yusuf’s school have been doing – equipping him with necessary skills for daily living, emotional regulation, intervention sessions as well as exposing him to various activities. 

Yusuf is doing well now. His social skills have improved. Back then, he used to be in his own world but now, he wants to engage with people around him and participate in games. That is the most important growth to me.

What are your hopes for him? 

As his mother, I hope that Yusuf is able to function independently when I’m no longer around. That is what I am preparing him for now. As long as he can live well and be able to contribute to society, I am happy. 

You work as a parent coordinator at Play.Able, what does your job entail? 

Play.Able at Queenstown Public Library is a space where children of all abilities can learn through play. We provide a curated selection of our toys and resources. Some of my duties include introducing and recommending toys and resources that are age-appropriate for the children, keeping the toys sanitised after play and ensuring that the environment is child-friendly. I also enjoy bonding with the parents and the children through play. 

Do you get any time for self care? 

When Yusuf is in school, I enjoy being one of the Parent Champions at Rainbow Centre. I help to organise caregivers' activities twice a month and also participate in them. I love being able to meet and socialise with other parents and caregivers. 

When I'm at home, I set aside time for relaxing and winding down by watching shows. As a family, we also go out regularly for walks. This is something that I do with other caregivers during school hours too! 

What is one thing you want people to know about children with autism? 

I would like them to know that children with autism are actually very empathetic individuals who are capable of love and care for others. It is just that some show these qualities in different ways as they may lack social cues. I hope that society can tolerate and accept them without being judgemental.