'If my boyfriend can’t accept my autistic brother, I will not marry him.'

Nur Sabrina prioritises her relationship with her brother with special needs. Photos: The Star/Art Chen

Aidil Ahmad Faizi, 25, has autism, and when he gets anxious, he tends to flap his hands and sometimes, repeat phrases. His older sister, bank executive Nur Sabrina Ahmad Faizi, 26, understands that this behaviour, known as stimming, helps people with autism manage their emotions.

“Sometimes, people look and stare, but I don’t mind. They might not be familiar with autism, so I take the opportunity to explain to them about his condition. Over the years, I have noticed that awareness of conditions like autism, Down syndrome (DS) and ADHD (attention-deficit hyperactivity disorder) has grown. When I explain his situation, people are often more understanding and empathetic,” says Nur Sabrina during an interview in Petaling Jaya, Selangor recently.

Caring for a sibling with special needs strengthens family bonds and ensures continuity of support when parents are no longer around.

On weekends, Nur Sabrina takes her brother to the park and dedicates time to teaching him the piano and playing games with him. She thinks the world of Aidil.

Her brother is her top priority, and she’s prepared to forgo marrying anyone who cannot accept him as he is.

“My future husband must be supportive and caring towards Aidil. If my future partner cannot accept him, then I can’t marry him. My brother is my blood, and he comes first,” she says.

Nur Sabrina and Aidil have been inseparable since childhood.Autism is a developmental condition that affects social communication and behaviour. There is a wide range of symptoms and impairments associated with autism, and the condition is referred to as autism spectrum disorder (ASD).

Autism is not an illness that can be cured; and those with autism usually require lifelong care.

While some families may feel despair when their loved ones are diagnosed with autism, Nur Sabrina and her parents have embraced Aidil’s condition as part of God’s will.

Aidil is diagnosed with low-functioning autism, and he currently attends therapy sessions and music lessons in PJ.

From a young age, Nur Sabrina’s parents – retired bank officer Ahmad Faizi Mohd Yusoff, 64, and Maria Mohamad, 56, who serves as the head of integrity, risk and compliance at a government-linked company – have emphasised the special needs of her only sibling.

Nur Sabrina dedicates time to teaching Aidil the piano, a hobby they enjoy together.

Her parents’ aim is simple: to ensure that she understands her role and responsibility in years to come.

“My parents always involved me in caring for him and reminded me that I would need to look after him when they were no longer around,” Nur Sabrina shares.

Ahmad Faizi is grateful his only daughter is always willing to go the extra mile for her brother.

“They have been very close to each other since young. I’m fortunate that Nur Sabrina is mature and capable of taking good care of Aidil when my wife and I are not around,” says Ahmad Faizi, who has set up a trust fund for his son to ease his daughter’s future caregiving responsibilities.

A special bond

As parents age and eventually pass away, the responsibility of caring for a sibling with special needs often falls to their brothers or sisters. As the closest family members after parents, siblings are expected to have a deep understanding of and acceptance for their special sibling’s behaviours and needs.

Ng says some siblings may hesitate to care for a disabled family member, fearing lifestyle disruption. Photo: Prof Dr Alvin NgDr Alvin Ng Lai Oon, a professor at Sunway University’s Department of Psychology, School of Medical and Life Sciences, says the transition of care from parent to sibling can be challenging. However, with thoughtful preparation and support, siblings can navigate this responsibility more effectively.

“It begins with regular, open dialogues on practicalities within the family to identify needs, motivation and availability. This helps determine the steps to take so that where there is a sense of deprivation, there can be outreach to seek help for what is lacking.”

Ng explains that some siblings may hesitate to take on the responsibility of caring for a family member with a disability because they fear it could significantly disrupt their lifestyle.

“Sometimes these conversations can be facilitated by a mediator like a family therapist who is trained in piecing out practical needs and at the same time acknowledging personal opinions to reduce conflicts within families. It is important for families, especially siblings, to focus on progress, rather than limitations that discourage contributions to care.”

Ahmad Faizi (second from right) and Maria (right) are grateful knowing Nur Sabrina (left) is committed to caring for Aidil.

Ng stresses the importance of preparing for practicalities like finances and support networks to ensure a smooth transition.

“Identifying practical needs and forming a network of support from professionals and informal caregivers is crucial.

“This preparation can alleviate some of the burdens associated with caregiving.

“There are a number of free online intervention modules that caregivers can take to learn how to manage their own wellbeing.

“These online interventions work better when paired with actual visits to counsellors who are trained to provide support to caregivers of people living with disabilities. It is also important to note that getting an active network of help is crucial to support caregivers. It takes a village,” he says.

Luke (right) shares a deep bond with Gerard, his only sibling, who has special needs. Photo: Fintan Nicholas

Brothers in arms

Law student Luke Bastianraj Nicholas’ only sibling, Gerard Veerasingam Nicholas, 19, has Down syndrome (DS) and the 22-year-old is well aware of the responsibilities that lie ahead.

“We should not relegate the whole responsibility to our parents because if we truly care about our sibling with special needs, then we must show it by action as well. In contrast, for those who do not care about their special needs siblings, I understand that you may view them as a burden.

“For some, it might seem shameful to have them as a sibling as they are less developed than others. Remember they too did not ask to be born that way and more likely than not have no one else in the world. Gerard is my flesh and blood and I must have the heart and time to care for him,” says Luke, who is pursuing his masters in law at University of Law, London.

'Gerard is my flesh and blood and I must have the heart and time to care for him,' says Luke. Photo: Fintan NicholasHe says his experiences with Gerard have shaped his view and attitude towards people with special needs.

“Since young, I have loved him, played with him, and even got frustrated with him just as I would with any other brother. Over time, I came to see how his condition affected his social interactions and daily life, but it never made me view him any less.

“Gerard was very influential in helping me grow to be a kinder person and this has translated into me having more compassion towards those with special needs.

“Special needs people are not difficult, we merely just have to be kinder and more creative in helping them.”

Gerard is undergoing a baking course at a special needs therapy centre in PJ. There, he also learns to do other chores like washing dishes. Luke is confident that over time, Gerard will slowly be able to sell his baked goods and gradually stand on his own two feet.

Their father, businessman Fintan Romuald Inbaraj Nicholas, 53, has also set up a trust fund for Gerard to help Luke with financial matters.

‘We want children with special needs to lead fulfilling lives with dignity,’ says Fintan (left). Photo: The Star/Azlina Abdullah“My biggest concern is whether Gerard will continue to be showered with love and of course, have financial security.

“Everyone says that he has Luke, but we have to be fair to Luke because he needs to live his life as well. I don’t want Luke to be burdened. I am hoping that relatives will be there to help Luke shoulder the responsibilities. We are fortunate that Gerard is well loved by his brother and cousins.”

National Autism Society of Malaysia (Nasom) is working on creating a Smart Autism Village (SAVe) to enable persons with autism to learn independence and acquire skills – including agriculture, art, craftmaking or sewing – to earn a living. Persatuan Down Syndrome Malaysia wants to establish a similar initiative but they are facing financial constraints.

Fintan wishes there is a stronger emphasis on inclusivity, with tailored programmes that provide educational opportunities, job training, healthcare services and community integration. He says many Scandinavian countries have adopted this concept.

“I have seen one of these homes in Norway. What I found so fascinating is that over there, people with special needs are not ostracised, but seen as part of society. It is vital to build a strong support system so individuals with DS thrive even when their parents can no longer care for them. We want children with special needs to lead fulfilling lives with dignity,” he says.