Siblings take on the task of caring for their autistic brothers and sisters

  • Children
  • Friday, 20 Apr 2018

Even though Naim is non-verbal, Nasha understands his anxieties and is able to calm him.

When Naim Rafaie Abdul Rahim gets anxious, he copes by flapping his hands, no matter where he is. In public, people stare and may even make comments.

But the 22-year-old autistic adult can always count on his family to support him.

His elder sister Nasha Raina is not embarassed nor alarmed by Naim’s behaviour. Over the years, she has learnt to accept that it’s all part and parcel of Naim’s autism, and she is now able to calm her brother and explain his condition to strangers.

She tells them that Naim has autistism, a developmental disorder that affects a person’s social interaction and communication, which is often characterised by rigid and repetitive behaviour.

There is a wide range of symptoms and impairments associated with autism, and this condition is referred to as autism spectrum disorder (ASD).

Nasha and her mother Feilina accept that Naim has autism, and they try to give him as good a quality of life as they possibly could.

Autism is not an illness that can be cured; it’s a lifelong condition, and those with autism usually require lifelong care.

“Naim was a normal child until the age of four when he stopped talking and became reserved. My parents took him to a specialist, who diagnosed him as having regressive autism,” recalls Nasha, who is two years older than her brother.

Some families despair when their loved ones are diagnosed with autism. But Nasha, her mother and grandmother have accepted Naim’s condition as God’s will. They have rallied around him, helping him attain the best quality of life possible.

Even though Naim has issues in communication and social settings, his family includes him in all their activities, including holidays abroad.

“From young, my parents have always reminded me that Naim is special. Mum even sold off her dance school to look after Naim. As Muslims, we believe he is a blessing. They said his condition would strengthen our family bond,” says Nasha, an associate consultant at an auditing company.

However, life wasn’t a bed of roses when Nasha was growing up. She couldn’t comprehend Naim’s condition nor understand why her parents showered more attention on her sibling.

She was embarrassed when Naim threw tantrums in public and found herself in a tough spot when people asked her about Naim’s ‘weird’ ways.

“From young, I knew my life would never be ‘normal’. I could never engage in ordinary activities with Naim nor could I engage in conversation with him,” she recalls.

"Naim is part of my life. It is my duty to look after my autistic sibling, says Nasha.

But over the years, Nasha has accepted Naim’s condition with compassion and understanding.

She spends time reading story books to Naim and teaching him how to surf the Internet and play computer games.

Nasha is also protective of Naim, and is fully prepared to shoulder the responsibilities of caring for Naim when their parents are no longer around.

“Naim is part of my life. It is my duty to look after my younger sibling. My future husband must accept and take care of Naim. That’s my criteria before settling down with my life partner,” says Nasha, who will hire a nurse to look after Naim when he is under her care.

Their mother Feilina Feisol, 52, is relieved that Nasha is committed to looking after her brother. “I’ve been very worried about Naim, from the time he was diagnosed with autism. There’s always the concern about what would happen to him when I am no longer around. Thankfully, Nasha loves her brother. She has a good head on her shoulders and would go the extra mile to support him,” says Feilina, 52, who has a savings fund for her special child.

Needing lifelong care

Special needs children, even high functioning ones, are dependent on others to care for and look out for them.

One of their parents’ biggest worries is who would look after their special needs children when they are no longer around.

Most often, the responsibility of caring for the disabled fall on to siblings, after their parents have passed on or are no longer capable of caregiving.

In theory, siblings are deemed most suited to care for their special needs brother or sister due to blood ties, trust and feeling of protection towards a weaker special sibling.

As the closest loved ones after parents, siblings are presumed to have accepted their special siblings’ behaviour and needs.

Universiti Malaysia’s Faculty of Education’s senior lecturer/ clinical consultant Dr Madhya Zhagan says parents must instil in their normal children the importance of caring for a child with special needs.

This includes getting involved in the daily responsibilities of caring for these special individuals.

“Dealing with an autistic child can be very stressful and frustrating. Siblings and relatives must understand the huge responsibilities that come with the task,” says Dr Madhya.

From the start, parents must include everyone in the family in the care of the special needs child, so that the other children understand what need to be done.

It is equally important for parents to ensure the special child is not bullied by their other siblings. He adds that living with a special needs person is challenging, so families should reach out to support groups (family, friends, or professionals) for help.

“As a parent and sibling, it is important to always stay positive, even in stressful situations. Do not feel sad or discouraged if your child does not respond the way you wanted. If they are given time to understand and learn, they will gradually pick up speed and adapt,” says Dr Madhya.

Abraham has learnt living skills so he can handle many household chores, but his sister Denise will still look after him for as long as he needs her.

Always room for him

Denise Frances Pereira was 14 years old when her youngest brother, Abraham Isaac, was diagnosed with Asperger’s syndrome.

Individuals with Asperger’s syndrome have difficulties with social interactions. Though autistic, they have normal intelligence and language development.

“Abraham was six years old when we found out he was autistic. Initially, I could not comprehend what Asperger’s is. But as I grew older, I began to understand the condition better – Abraham’s lack of social communication, obsessive focus and attention to detail,” explains Denise. Regular check-ups and support from family members have enabled Abraham to overcome some of his challenges, and he is considered a high functioning individual.

“The journey hasn’t been easy but we are pleased with Abraham’s progress. I am happy to see him grow and mature. His condition has improved by leaps and bounds, but I will continue to look after him when my parents are no longer around. After settling down, I will ensure Abraham has a room in my home,” says Denise, 27, who accompanies her mother Dorothy George Dass, 62, for Abraham’s medical appointments.

Abraham is currently pursuing a course in automotive engineering in a college in Petaling Jaya. He travels independently using public transport. He helps with household chores like doing the laundry and washing dishes. Denise is confident Abraham will gradually stand on his own two feet.

Abraham Isaac Pereira shares a close bond with his older sister Denise

“He wants to be an automotive designer. Given his positive development, I am certain his dreams will turn into reality,” says Denise, adding funds have been allocated for her brother’s future.”

Denise hopes society will have greater acceptance of individuals with special needs. She cites the example of Dr Mary Temple Grandin, an American professor of animal science who is autistic.

“People tend to label autistic people as orang kurang upaya (disabled) or have a learning disorder. This perception has to change. These individuals should not have any limitations to attain their dreams.”

She hopes Malaysia will emulate the United States, Australia and New Zealand where support is given to individuals living with autism.

“Autism societies, non-profit organisations and the government should work together to help individuals with special needs. With their support, hopefully they can have a brighter future ahead.”

Feilina – who is chairman of Nasom – hopes Malaysia will implement integrated community living for those with autism.

“It is important to remember that integration into community is a key component of happiness and independence in the lives of adults with autism. Interacting with others will increase their quality of life and their independent skills,” explains Feilina, adding Nasom’s training centre in Bandar Puteri, Klang, offers classes in baking, food preparation and housekeeping for autistic teens and adults

She hopes to work with the government to set up a farm which provides residential, vocational and recreational support for adults living with autism.

“Having a farm within a community will help in sustainable development of the farm. Farm produce can be bought by the community, which could create jobs for youths with autism,” she says.

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