I’m raising two boys with autism

By Lisa Twang, Apr 29, 2021

In Singapore, about one in 150 children is autistic1 Autism, also known as Autism Spectrum Disorder (ASD) is a brain development condition which can cause social, communication, and behavioural challenges. It is primarily caused by genetics, though environmental factors like birth complications can also play a role. 2 

Autistic kids can have different levels of intellect. They may have high support needs and require more care, or have low support needs and be more independent. Currently autism is diagnosed from the age of three, and is a lifelong condition. However, early treatment through therapy can help autistic children function better. 

For World Autism Month this April, we speak to Nur Farina, a mother of four boys. Her eldest children, 13-year-old Aryan and 11-year-old Aniq, are both on the autism spectrum. Farina also has two younger children with her second husband Salahuddin: three-year-old Asfa and one-year-old Awfa. 

From having no knowledge of ASD, Farina is now an advocate for autism awareness as a member of Friends of ASD Families, a local support group. She shares how mothering Aryan and Aniq has brought her great joy, even as she continues learning about how to meet their unique needs. She also hopes we can learn to be more caring towards special needs children and their families, and become a more inclusive society.

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Recently, Aniq and I took the bus and he jumped enthusiastically into his seat. I felt there was nothing wrong with this scenario, as he wasn’t hurting or disturbing anyone. But I heard a lady tell her daughter: “Come, let’s change seats. There’s a crazy kid here.” My heart just broke. 

I said: “Excuse me, my son is not crazy. He is just special.” She replied: “Special or not special, if he spits at us later, what do we do? Girl, if you see these kinds of children, stay away from them.” 

At that point, I couldn’t control my anger, which is why I replied aggressively and said: “You watch your mouth.” This wasn’t the first time I’d heard such comments. Aniq and I left the bus, and I broke down. He asked me why I was crying, and I took deep breaths and calmed myself down.

In the past, I would’ve said, “Sorry, my kid is special.” However, I realise I shouldn’t be apologising, as it’s no one’s fault that my boys were born autistic. They didn’t ask to be this way, and to be treated cruelly.

When an autistic child experiences a meltdown, people tend to stare and pass comments like: “That kid is so naughty”, and “Why aren’t his parents scolding him?” They may assume that our children behave that way because we are bad parents, not because they’re autistic and have trouble controlling their emotions or are struggling with sensory overload.

Fortunately, not everyone we encounter is mean. I also meet other wonderful people: strangers who stop to ask if we need help or acknowledge us with a smile, Aryan and Aniq’s special school teachers and therapists, and other parents of autistic children. When they are kind and patient with the boys, it gives me hope that there are good people out there.

I’m raising awareness about autism because I wish Singaporeans could be more mindful of it, and show greater empathy towards autistic people. I’ve found that some are still unaware and unsure about the autism spectrum: so I hope sharing my experiences will inspire people to be more kind and understanding.

Every autistic child is different: they may struggle with social skills, or managing their emotional needs. Hence, we need to be more patient and understanding towards them.

Autism is not the same for everyone, so it can be hard to understand. On the autism spectrum, there’s a wide range of symptoms, such as speech delay, or trouble communicating and focusing.  Autistic children may also have different conditions like ADHD (attention deficit disorder), or dyslexia. Some autistic children may not be able to express when they are sad or angry, and be more prone to meltdowns. Therapy can help them to manage their feelings, and communicate better.

Caring for children with autism is challenging. Their education and therapy is expensive, and as parents we need a lot of patience to calm them when they are upset. Bringing them out is extra challenging, as they are more sensitive to loud noises or changes in routine, and may have meltdowns. Sometimes we have to bring them home, because they can’t manage being outside. Both my husband and I have found ways to cope: we have more adult family members around when we go out, so we can take turns caring for them. 

Even though autistic children are different from typical kids, they can also be loving, caring, happy, and playful. Needless to say, they also have their own unique personalities and characteristics, which make them special.

I love Aryan and Aniq for who they are. Both are polar opposites and have different challenges, so we support them according to their needs.

My oldest, Aryan, is mostly easygoing, independent, and helpful. He tends to be shy and reserved. Aryan has a lower IQ and had severe speech delay: he didn’t speak a word until he was six. He improved a lot after speech therapy, but most people — like some of our relatives or our friends’ children his age — don’t fully understand him. This affects his confidence and self-esteem, so he needs a lot of encouragement and motivation. 

As Aryan hit puberty, he became more aware of his surroundings and the negative words people might use when speaking to him. This negativity made him bottle up his feelings, and sometimes he couldn’t control them and had severe meltdowns. Occasionally, he would experience a mental health breakdown and mention suicide.

This happened recently when Aryan changed special education schools, from ASPN Chao Yang to ASPN Tanglin. He struggled to adapt to a new environment with different classmates and teachers: it was very overwhelming for him. Fortunately, Aryan’s form teacher referred him to the school psychologist. Aryan now sees his psychologist regularly, and this helps him manage his feelings by penning them down and talking through them.

Aniq is the total opposite of his older brother. He is more cognitively inclined, speaks fluently, and has a lot of energy. Most of the time, he’s very cheerful and loving: he hugs and kisses his younger brothers, and comforts them when they cry. When my youngest baby was learning to walk, Aniq would say, “Careful, Awfa!” 

But Aniq is also prone to aggressive behaviour, and sometimes struggles with negative emotions. Whenever he talks about violence, it worries me that people may misunderstand and think he will harm them. I believe Aniq is not a bad person, and has a pure heart. I hope and pray that with the help of his teachers and our family, we can do the necessary intervention to make sure he stays on the right path.

Aniq is happiest when he has a job to do, so we put him in charge of planning our family outings. He gets very excited, and will work out our destination and route: what buses or trains to take, and how far we will walk. When he has something positive to focus on, he’s less likely to have meltdowns. 

Having autistic children has changed me a lot. Raising them has given my life a new purpose, and made me more patient and grateful for my family.

Myself as a young mum with Aryan. Everyone loved his curly hair.

Myself as a young mum with Aryan. Everyone loved his curly hair.

I had Aryan when I was just 18. Before I became a mum, I was a typical teenager. I wasn’t close to my family, and didn’t want to spend time with them. I didn’t know what to do with my life, and felt like it didn’t have any meaning. 

When Aryan was first diagnosed with autism at age four, I didn't know what that word meant.

I had never met anyone with autism, and there was even less awareness of ASD nine years ago. Aryan was born premature at 27 weeks and had many health complications, so I had always mentally prepared myself that Aryan might develop differently (research has shown that premature babies with birth complications are at higher risk for ASD). So it was not a complete surprise that Aryan was a special needs child, it was still hard for me at first. 

Around this time, I was going through my divorce with my first husband, while being a young single mum to two kids. I fell right into depression, which became worse when Aniq was diagnosed with autism a year later, too. I had to keep switching jobs, so I could have flexible hours to send the boys to therapy after school. On my payday, all my money went to the boys’ school fees, therapy, and taxi fares and other miscellaneous needs. 

When I struggled to cope with Aryan and Aniq’s autism, I kept telling myself: “They are my babies, so I have to be strong, accept their diagnoses, and fight for them.”

It was mainly through the support of my family that I overcame this challenging period. Without them, I wouldn’t be where I am today. I lived with my parents and siblings, who helped me send Aryan and Aniq for therapy, doctor’s appointments, and school, and care for them while I worked. I was touched by how my family cared for me at my lowest moments. 

During my depression, my social worker referred me to a psychologist to improve my mental health. I was on medication for a while, and learned to be more positive and get better for myself and the boys. I read up on autism, and even took night classes after work at the Agency of Integrated Care (AIC) to learn how to help Aryan and Aniq at home. I sent the boys to special education schools, where they could get more support in a smaller class with trained special needs teachers. 

I’m now remarried, and my husband has also been my backbone. I feel blessed that he loves me and the boys so much.

I met Salahuddin on Facebook about six years ago, and started chatting with him. I was upfront about being a single mum with two autistic boys, but to my surprise he was still interested to meet. The first time we met up, I brought only Aryan, as I didn’t want to overwhelm Salahuddin. 

Aryan and Salahuddin at their first meeting. They clicked so well, and chatted as if they’d known each other their whole lives.

Aryan and Salahuddin at their first meeting. They clicked so well, and chatted as if they’d known each other their whole lives.

Later, I introduced Salahuddin to Aniq as well. He was incredibly patient with the boys, and had a way of calming them down if they were agitated and had meltdowns. It felt like we all fit so well together.

Salahuddin didn’t know much about autism, but he was very willing to learn. He read articles and attended workshops by the boys’ schools, and still does so today. He also accompanied me to their doctor’s appointments.

My husband and I with Aryan and Aniq on our wedding day.

My husband and I with Aryan and Aniq on our wedding day.

Salahuddin has proved himself as a good husband and father. Since we got married, he’s supported us so much and is here for me when I’m emotionally drained: he’s the one person I can talk to about anything. He bonds with Aryan and Aniq through playing video games, and special father-son outings. 

To help Aniq escape his negative feelings, my husband brings him out to explore Singapore by motorbike, as a reward for good behaviour. It’s something they both look forward to every month.

To help Aniq escape his negative feelings, my husband brings him out to explore Singapore by motorbike, as a reward for good behaviour. It’s something they both look forward to every month.

Over time, we expanded our family to include Asfa and Awfa as well. We thought for a long time about whether we wanted kids of our own, because the recurrence rate for autism in siblings is about 20 per cent. When we asked Aryan and Aniq if they were keen on a sibling, they got very excited, so we went for it.

Our four boys (left to right) Aniq, baby Awfa, Asfa and Aryan.

Our four boys (left to right) Aniq, baby Awfa, Asfa and Aryan.

Having siblings has been a good way to teach Aryan and Aniq responsibility. They’re very involved in feeding and playing with them, and changing their diapers. They also practice communicating with Asfa and Awfa. We love all our kids so much, and raising Aryan and Aniq has given us confidence as parents that we will know how to meet all our boys’ needs, even if they’re different from typical kids.  

I’ve learned to adjust my expectations of Aryan and Aniq, and celebrate their milestones. 

Aryan has come such a long way: from being a toddler with poor articulation, to being able to tell jokes and stories now. And when Aniq was able to get his haircut in public for the first time last year without a meltdown, thanks to a very kind and patient hairdresser, I was overjoyed.

If you have a special needs child in your family, I’d encourage you to join support groups, and remember to take time out for yourself: because you also matter. 

Sometimes, when dealing with special needs children, all your energy goes to them, and you hardly think about your own needs. Trust me, you’re not alone: we have a community of families, parents, siblings, uncles and aunties who are in the same boat. You can reach out to parent support groups in special schools, or join groups like Friends of ASD Families. 

I used to be that shy parent who didn’t want to talk about my children, or my feelings. I felt that no one would understand. But once I started to share my experiences and challenges, I began to feel like I could breathe again. I talked to my social worker and psychologist, and made friends with other parents in Aryan and Aniq’s schools. I learned not to blame myself for the boys’ struggles, and focus on taking care of myself while helping them be the best they can be.

I want people to know that there is no shame in autism. I choose to face it and be strong, rather than be silent and alone.

Living with autism is the reality of my life, and my family’s life. Looking back, I’m so grateful to have Aryan and Aniq. Raising them may be really hard and tiring at times, but there’s also so much joy. 

Celebrating Aniq’s 11 birthday as a family.

Celebrating Aniq’s 11 birthday as a family.

The future feels far away, and I can’t tell what it holds for my dear boys. But we’re working with their schools on their independence (having basic self-help skills), communication, and social interaction. 

Like all parents, we dream of them being able to develop a relationship, get married and have a job: but that’s secondary. I’m confident that if my husband and I are no longer around, my brothers and sisters will help to care for the boys, because our family support system is very strong.

Aryan and Aniq have taught me how important it is to have empathy and compassion. I believe they’ve taught me even more than I’ve taught them.

Being a mother to autistic children has given my life a deeper meaning. I hope we can all find it in our hearts to care for kids with autism, because they need our love and understanding: just as all children do.

1 From Singapore’s 3rd Enabling Masterplan 2017-2021: Caring Nation, Inclusive Society.

2 From a 2019 study by the Karolinska Institute in Stockholm, Sweden, with 2 million people across five countries. It found that autism spectrum disorders are 80 per cent reliant on inherited genes.

 

Pictures provided by Farina. 

 

For more stories on autism, check out artist Bob Lee’s exhibition Finding What’s Next at the Esplanade Tunnel. It features photos, videos and personal effects from individuals with autism after they turn 18, along with their caregivers. The exhibition runs until July 4. 

Friends of ASD Families fosters a sense of community among families with autistic children, and shares stories of hope as a form of encouragement. Read more about them on Facebook, or reach out at friendsofasd@gmail.com.

 

Writer's Note:

My name is Lisa, and you can find me at @lisatwang on the Dayre app. I'm a mother to my five-year-old daughter, Tully. On my personal account, I've written about why I believe there's no such thing as an "easy" child, and how I learned about autism through my best friend's daughter.

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