Facing financial difficulties, dropping out of university and the breakdown of her marriage — the responsibilities of caring for her loved ones with autism had placed Sharifah Adila Surya Malai Hj Abdullah through her paces far more than most.
The 26-year-old single mother to two autistic children is now the vice secretary 1 cum deputy director of administration of the Society for the Management of Autism Related issues in Training, Education and Resources (SMARTER) Brunei.
She speaks to The Scoop about how she has been dealing with individuals with autism since before she was 10 years old.
‘MY BROTHER, FARID’
She was nine years old when her father broke the news to the family that her then three-year-old brother had autism.
“It was a really rainy day when he told us that Farid was diagnosed with autism. And at that time people kept saying that if you don’t give him early intervention by the age of seven or nine, then it is a lost cause,” Sharifah recalls.
“I had no idea, all I know was that my brother wasn’t normal.”
With a background in psychiatry, her father set roles for each member of the family to play in Farid’s upbringing. Sharifah was placed in charge of playing with him, “to show him what normal play is”.
“If he is playing with a toy car, show him how you would play with it,” she recalls her father telling her. “Even though he is playing with it differently, just show him. If he is not giving you attention, don’t give up,” she adds.
“He was quite foreign to me. I felt I was living with an alien.”
At such a young age, Sharifah soon realised that living with an autistic sibling meant she would not be able to experience a childhood like her elder sisters had.
She shares that her family stayed at home most of the time, eating in instead of going out for family dinners because Farid was “not ready” for it yet.
“Even going to the playground was too much for him to handle,” she says.
“At one point I resented my brother because I couldn’t have friends over. I couldn’t go out as long as I wanted… I was not able to do things that (my sisters) were able to do because our whole life revolved around my brother,” she adds.
Sensing the toll the guardianship had on Sharifah, her father told her to volunteer at SMARTER Brunei – the Society for the Management of Autism Related issues in Training Education and Resources. Her father had set up the parent support group on September 9, 2001, to help families with autism.
“He said I needed to volunteer at SMARTER in order for me to understand my brother’s situation. My father was very disappointed in me.”
Sharifah first volunteered for a month during the December school holidays, gradually learning techniques from the therapists there. However, sensing her dislike for him, Farid was not happy with her presence there, she recalls.
“Then one night, my brother was crying. I massaged him how the therapists taught me and he smiled and laughed,” she says.
“That was the first real sibling bond I’d ever had with him.”
“Ever since that day, we’re closer than ever. He finally trusted me and I finally had the confidence in myself to take care of him,” she adds.
The breakthrough set Sharifah off on new perspectives in her life. After her A-Levels, she took a year off from her studies and decided to work as a part-time assistant therapist at SMARTER.
She then married at age 21 and had her first baby later that year. She also started university just a year later.
At the time, Sharifah thought that life was great. She was married with a baby, she was pursuing her degree and her husband was working.
But fast forward two years, her husband had lost his job and was in-and-out of work. Her doctor also had concerns about her child’s development.
“At two years old, he wasn’t talking. He didn’t say ‘Mum’, ‘Dad’ or ‘susu’ (milk)… and he couldn’t maintain eye contact,” she says.
“I was in denial,” she adds. “My whole family was in denial that he could have autism. We were really hoping that it wasn’t the case.”
Her son was later diagnosed with autism and a speech disorder. The situation placed further strain on her family’s financial situation and Sharifah dropped out of her second year at university.
“It was really rough… Even a $100 was a lot of money for us at that time,” she says.
“I had to drop out of uni because of the extra money needed to send him to therapy, and I had to buy items for his therapy.”
Having experienced a similar situation with her brother, it concerned her that she would not be able to provide for her son’s well-being.
She shared that her first-born, Fahmi, was a “picky eater” and would only drink a specific type of milk, one what would cost $20 per box.
“It would last for two weeks, it was very expensive. Catering to his needs was very difficult.”
‘MY SECOND SON’
Soon after the diagnosis, she found out that she was pregnant with her second child. She knew that she had to find a job, so she started work as an office manager at SMARTER.
In 2014, she gave birth to Haziq. However, she was already separated from her husband by then.
“I was technically a single mother already. I had a newborn, another child with autism who is still going for therapy, I am working full time and I’m trying to balance that out. Luckily, I have very supportive parents,” she says.
Sharifah eventually returned to work, bringing her newborn with her. Her first son, Fahmi had said he wanted to go to school, which both encouraged and worried her.
“As a parent, when you hear the word ‘school’ you get worried. There is an inner voice that keeps telling me that maybe he will never be accepted, never fit in and never be given the same opportunities.”
“My fears came true when I sent him to school. When they knew about his condition, they stopped trying to engage with him,” she says.
“They just let him be in a corner playing with an iPad.”
Sharifah took him out of school to undergo therapy at SMARTER. It was only after her son was talking and engaging in play that she placed him back in school last year. However, she still worried that the teachers will not give his son another chance.
“I found out that the school gave him a new teacher, and he was moved to the afternoon class where there were fewer students. The teacher was so accommodating and he progressed a lot,” she says.
But behind it all, Sharifah says she struggled with frustration and was trying hard not to give up.
REACHING OUT FOR SUPPORT
“Money has always been an issue and I’m not eligible to apply for single mother welfare under the Department of Community Development (JAPEM) because I am working full-time and my salary is more than $400 per month.
“I’m really engaged in my children’s life that I don’t have time for myself. There were a lot of times I went to meetings looking like a mess,” she says.
There were also a lot of times when she questioned whether or not she was ready to work and be a mother.
Her father then decided to throw some big news at her, telling Sharifah she will take over SMARTER when he passes on.
“The news flew over my head because I am definitely not ready. I can’t do this, I can barely cope taking care of my own children.”
She would break down in her car so often that her friends would wonder why she’s still doing what she’s doing. “They told me to take a break,” she says.
But, when you are living with someone who has autism or any kind of disability, you’re not able to take a break from the situation, she adds.
“My son gets so frustrated when there are loud noises, he doesn’t eat anything except for rice and vegetables. He doesn’t drink anything except water. I have to think about his health. At one time, I thought I was going to be severely depressed.”
The year 2016 marked a turning point for her.
Her sisters assured her that she was doing a great job and it caused her to break down.
“I’m barely surviving right now. I don’t know what you mean by doing a great job. I don’t see myself as a great mother. I’m constantly questioning myself,” she told them.
“I see myself in a negative space and when my sisters told me that they admire me, it was something big for me. My friends also came up to me and said you’ve been doing great, you survived so far.”
She also felt a heavy weight lift off her shoulders when her divorce was finalised.
“This is my life now. Finally I don’t have to worry about this baggage that has been weighing me down, I can finally say that I am free.”
WHEN THE BALL DROPS
But she was hit with another devastating piece of news in 2017.
“Earlier this year, my sister came from the UK and she’s doing a PhD on autism. She took one glimpse at my second child and said to me: “Are you in denial?”.
Sharifah says for the longest time she was so focused on her first son that she almost ignored all the signs that her youngest son also had autism.
“I immediately went to the doctor and told him I have concerns. He gave me a referral letter. At this time, I feel like I’m going to be a superstar because I know what I need to do.”
The news only hit her once she got everything sorted out.
“I sat down. It was at night, the children were sleeping and I went through my phone and saw a picture of Haziq as a baby. I broke down. Oh God, what did I do wrong this time? I must have done something wrong. Maybe I wasn’t careful during the pregnancy or I ate something that wasn’t right,” she says.
It took her one whole day to cry it out.
“I wouldn’t have been given this life if it wasn’t meant for me. You realised that you have so many people on your side to see you go through.”
Her youngest son is currently attending therapy and she admits that it’s slower progress compared to her eldest.
“Every child progresses at their own phase. For my second son, I have to really reassess what I think is progress. I can’t compare the two. Each person’s milestone is different,” she says.
“It was a difficult three months for me this year because I have to really think about a lot of things. I spend $300 on therapy for them. My eldest goes to school which costs $135. I spend a minimum of $300 buying items that they like, and you need to restock a lot of things.”
“Typically I would spend around $700 on them per month. Some parents spend about $1000 or more. In my brother’s case, we spend $2,000 for him every month for anything that he needs,” she adds.
It has been a very turbulent four years for her.
“I’m a very young mother. I was very unsure. I’m not saying that now everything is great. It takes a lot from me. I don’t sleep typical hours, I don’t have a typical life. Yes, I can bring my children out to playgrounds and parties and they will be able to cope.”
However, there are questions at the back of her mind, like ‘why isn’t he talking yet?’.
“I usually just brush it off. But on bad days, I tell them that we’re getting there. I try really hard to brush off all that negativity and remember the present, and see how much I’ve accomplished in the past four years,” she says.
She wants to make sure that her children lead a life that they’re supposed to live.
“Just because they’re different doesn’t mean they don’t get to experience things like other kids. They may experience it differently. I want to make sure that they live a happy life, and grow up to be kind gentlemen,” she says.
Sharifah adds that she wants them to grow up never having to feel lost as she once was.
“I want to make sure that they always have someone on their side. I thought I was alone, it turns out that you’re never alone. I have my parents, sisters and Alhamdulilah I have found someone who accepts my children as they are and accepts me for who I am.”