Latest news with #MalaysianAutismResourceFoundation
The Star
09-05-2025
- Health
- The Star
A local trilingual website offers information on autism for every stage of life
Despite autism spectrum disorder (ASD) being understood as a lifelong condition, many still perceive it as a 'childhood disease', with developmental milestones in infancy and toddlerhood the main diagnostic criteria. Annually, during April's World Autism Month, programmes and activities are mostly organised for children, further solidifying this belief among the public. And yet, those on the spectrum never grow out of autism. In fact, as they grow older, they (and their caregivers) face different sets of challenges that may feel foreign and daunting. Consultant developmental paediatrician Assoc Prof Dr Norazlin Kamal Nor says because of this perception, most resources on ASD are focused on babies and kids. 'But as people with autism grow up, they find that there are less and less places to get information from and this affects their well-being, not to mention their caregivers',' she adds. Assoc Prof Dr Norazlin was speaking after the launch of the Malaysian Autism Resource Foundation (MARF)'s website at the Tunku Ampuan Besar Tuanku Aishah Rohani Hospital, which is also the UKM Specialist Children's Hospital. The website, is a one-stop site for parents, teachers, therapists and those with autism. Assoc Prof Dr Norazlin, who also sits on MARF's board, says a plus point of this website is that it's a comprehensive resource for different parts of life for a person living with ASD. 'It covers information from their early years and school age to adolescence and adulthood, with explanation on a range of topics including behaviour, communication, emotional well-being and independent living,' she adds. She says while there is a lot of information about autism in English, details in Malay and Chinese are limited. 'That's why we have this website in three languages; to make it more accessible to more people so they can read up and understand,' she says. MARF founder Dr Ng Sui Yin agrees. She says some websites in Mandarin require subscription so she hopes this free website will encourage Mandarin-speaking families to find more information about this condition. A lifelong challenge A paediatric neurologist, Dr Ng says an autism diagnosis is often the start of a challenging time for families. According to a 2001 study titled 'Families of adolescents and adults with autism: Uncharted territory' by MM Seltzer et al., 'few disabilities appear to be more taxing on parents than ASDs'. A 2023 article in Psychology Today explains that a marriage is more likely to be stressed when it has a child with special needs. 'Surveys show that the rate of divorce in families with a child with disabilities (in the United States) may be as high as 87%. The divorce rate in families with a child with autism is about 80%,' the article says. Dr Ng says the divorce rate among couples with an autistic child is high because of the financial, emotional and physical strain that come with it. 'People are not properly empowered and they lack the knowledge and resources to manage these challenges. Hopefully, a comprehensive website like this will help them navigate this journey better.' Dr Ng reiterates that this website does not replace consultations with experts, but she says at the doctor's office, parents of an autistic child may feel overwhelmed. 'They could be bombarded with so much information that they might not know what to ask at that point. This website allows them to access information when they are ready,' she adds. Dr Ng says an autism diagnosis is often the start of a challenging time for families. Photo: LOW LAY PHON/The Star Debunking misinformation Assoc Prof Dr Norazlin says misinformation about autism is rampant, especially online and on social media, so it is imperative that all the information disseminated on the website are verified by experts, including doctors, psychologists and therapists. 'There's a lot of stress and anxiety in the lives of families with a child or children with autism. When people are stressed, they look for answers and sometimes believe unverified information,' she says. An example of this misinformation is the use of hyperbaric oxygen therapy (HBOT) as a treatment for ASD. This involves breathing in 100% oxygen in a pressurised chamber. Proponents say this practice helps improve eye contact, social skills and awareness levels among those with autism. A 2017 study by paediatric emergency physician Dr Teeranai Sakulchit said 'currently, there is insufficient evidence to support the use of HBOT to treat children with ASD, and its use as a form of treatment is not recommended'. Assoc Prof Dr Norazlin says a hyperbaric chamber might sound sophisticated and parents may be swayed by testimonials, but testimonials themselves are not solid evidence. 'In a worst case scenario, it can have fatal consequences, like a five-year-old boy in Michigan (in the US) who died during an HBOT treatment a few months back,' she says. In January, the boy, Thomas Cooper, died in a hyperbaric chamber fire. His parents had taken him to receive multiple sessions of HBOT for sleep apnoea and attention-deficit hyperactivity disorder (ADHD) – the latter a condition that can co-occur with autism – at an alternative medicine facility. 'That's why, for us, it is so important for everything published on the website to be verified, with robust research data to back them up,' she adds. The website offers comprehensive information about autism for every stage of life. Photo: Other issues about autism Dr Ng says the website offers information and resources on other issues about ASD, beyond diagnosis and treatment. 'These include legal implications like OKU rights, the impact on other siblings and how to go about it, how to find balance in parenting and coping with loss,' she adds. 'There's also a section on how to prepare someone with ASD for examinations, because some kids with autism can go through schooling and learning with other kids, but their caregivers need to employ certain strategies to help them thrive,' she says. Assoc Prof Dr Norazlin says as a society, we still have a long way to go in accepting autism as a lifelong condition that comes with different sets of challenges across a person's lifespan. 'We're still working through that... there are still very few specialists who work with adults with ASD and we hope this can improve over the years.' Inclusivity, she says, is a two-way street. 'We want people to embrace those with autism with respect and dignity, and we also want to educate those with ASD about other people and the world they live in,' she concludes.
The Star
30-04-2025
- The Star
How to prepare your neurodivergent loved ones for air travel
To say that air travel is exciting is an understatement for many. There's the thrill of packing prior to the day (or even a week before!), the familiar chaos of the airport and the anticipation of the plane taking off. Flight delays or long queues at the check-in might dampen the mood, but it is generally expected as part of the journey. But for families travelling with individuals on the autism spectrum, the experience can be far more layered. The airport, often buzzing with large crowds, blaring announcements and flashing signboards, can be a sensory minefield. Meanwhile, the calming drone of the plane inside the cabin can be distressing to some. What's considered routine for most travellers can cause deep unsettlement for people on the spectrum. Yet, for many parents, flying with their autistic loved ones is not an activity that's out of reach. It just requires a little more preparation, a good dose of patience and a deep understanding of their needs, as these parents with autistic children explain. Nik Nadia (second from right), her two daughters and a Care Ambassador at the airport. — NIK NADIA For Nik Nadia, 44, flying became a frequent part of her family's life after their move from Kuala Lumpur to Kota Kinabalu, Sabah, at the end of 2023. Together with her two autistic daughters, Helena Aufiya, 16, and Emilea Firzana, 14, she did three trips to and from KK last year on various airlines. Nik Nadia has learnt that preparing her daughters well in advance helps reduce anxiety over sudden changes, which autistic individuals are particularly sensitive to. 'I tell my daughters about a month in advance when we're going to fly. I also inform them that they won't be able to use their gadgets as they would be on 'flight mode'. 'Also, since there's a chance they won't like the food onboard, I also get them to eat something before boarding,' Nik Nadia says. For Desiree Kaur, travelling to India with her nine-year-old son, Nevyr Haans, for vacation in 2023 showed her the importance of preparation – in every aspect. 'We worked with his school to prepare for the experience of flying. They used social stories to explain it to him,' Desiree, 41, reveals. Social stories, as described by Malaysian Autism Resource Foundation, are customised short stories that help children with autism understand social situations through simple narratives, visuals and repetition. These stories break down unfamiliar experiences into digestible information, allowing them to navigate certain situations. Negri Sembilan-based Ameera Aqeela, 35, whose son Aidan Anaqi is seven, also utilised the same method before their flight to Langkawi, Kedah about two years ago. 'We prepared Aidan by discussing the trip early on and used social stories to describe what flying would be like, including photos of the plane, airport and what would happen when we're there.' Similarly, Adelene Majakil, 43, used visuals to prepare her son, Ewan Peter, 13, before flying from their hometown in KK to KL for a family trip. Ewan was shown pictures and videos of other kids and family travelling by plane. Noor (right) made a long-haul flight with Wan Jamila to Italy last year. — NOOR SA'ADAH 'This helped him become mentally prepared and familiarised with the experience, making the journey feel more predictable and less overwhelming,' says Majakil. Meanwhile, Noor Sa'adah, 62, tells a similar experience when she travelled with her autistic niece, Wan Jamila, 23, to Italy in 2023 for an award ceremony. The journey, Noor shares, required thoughtful planning – both emotionally and logistically. 'I made it a point to arrive at the airport well ahead of our departure time and walked her through our entire itinerary so she would know exactly what to expect at each stage of our trip,' she says. 'This helped her mentally prepare for the journey ahead, reducing the likelihood of anxiety or confusion.' Ameera travelled with her now seven-year-old son, Aidan, to Langkawi in 2023. — AMEERA AQEELA A new environment The airport is often the first hurdle. An unfamiliar landscape with a barrage of lights, noises and crowds can trigger sensory overload. But this is where early planning – and services designed for invisible disabilities like being neurodivergent – can make a significant difference. Though the environment didn't overwhelm Ewan too much, possibly because the airport seemed like just a regular location to him, Majakil is still grateful for Malaysia Airports' Butterfly Effect service. This initiative by Malaysia Airports was designed to understand the needs of travellers, especially children, who have hidden disabilities such as autism. There are facilities like a Calm Room and a Sensory Wall, as well as special services including at check-in counters, access to fast-track lanes at immigration and customs, and buggy rides. 'The process was much smoother – we were given priority at checkpoints and a speedy airport buggy ride took us between key points, making the journey to the boarding gate much easier,' Majakil says. 'This service was not only beneficial to our son, but also for our entire family. It made the experience pleasant and memorable.' Desiree and Nevyr also had the same experience with the Butterfly Effect service. Desiree says that they had access to the Calm Room and queues for immigration were shorter. 'While most Malaysians find the autogate at the immigration checkpoint very convenient, this can prove to be challenging for some children, especially those who are neurodivergent. 'We were accompanied by a 'Care Ambassador' who helped us explain our situation to the immigration officer, allowing us to go through the process as a family rather than individually,' Desiree explains. The buggy service is more than just a fun ride, too – it is useful in avoiding long walks through the crowded terminals. 'In fact, the ambassador offered to drive us around the terminal to get food but we respectfully declined as Nevyr was quite calm and happy to walk,' adds Desiree. For Nik Nadia, her daughters too made use of the Butterfly Effect facilities at the Kuala Lumpur International Airport Terminal 1 (the service is also available at Terminal 2). 'After we registered for the Butterfly Effect service, we got to use the Calm Room. My younger daughter wanted to play her video game and needed a quiet space. We also opted to ride the buggy to the gate,' Nik Nadia says. Travellers who wish to use the Butterfly Effect service would need to register online at least three days before the date of departure. To find out more, head to the Malaysia Airports website ( Last year, little Ewan and his family flew to Kuala Lumpur from Sabah. — ADELENE MAJAKIL Thoughtful measures Most airlines also offer special services for passengers with a disability or disabilities. Malaysia Airlines, for example, offers priority boarding, allowing one to settle in ahead of general boarding. Priority boarding is also extended to the companion, or family members, travelling with a special needs passenger. This initiative is part of the airline's commitment to ensuring a smooth and inclusive travel experience for passengers with special needs, including those on the autism spectrum. 'This allows them to board alongside families, ensuring a calm and stress-free start to their journey,' according to a statement from the airline. To create a safe and positive experience for all passengers, Malaysia Airlines also notes that its ground staff and cabin crew are trained to respond to a variety of special requests. In the statement, it says: 'Our crew receive specialised training to support passengers with disabilities, including travellers with autism. The training allows them to understand various disabilities, manage passenger needs and provide extra attention during challenging situations.' Apart from the accommodations served by airlines, parents must also be responsible in anticipating their loved ones' needs and temperaments during the flight. 'Because he was very excited, he wanted to explore the plane and had the urge to run from one end to the other,' Majakil says of Ewan. 'In the beginning, we had to distract him to keep him occupied – whether with the iPad, talking to him or singing with him.' She found that giving him a window seat helped immensely. 'He was fascinated by the view outside for most of the journey.' Aidan, however, found the take-off experience challenging due to the sudden acceleration and loud noise. The sounds of the cabin also caused him some discomfort. To regulate his environment, Ameera says that she brought noise-cancelling headphones to help with the cabin noise and packed his favourite snacks and toys to keep him occupied. Ensuring that sensory needs are not overlooked, Malaysia Airlines offers headphones for autistic passengers onboard – noise-cancelling ones are available in Business Class and standard ones in Economy. Apart from that, the airline also provides children aged three to eight with an activity pack for flights over two-and-a-half hours. Accompanied by Malaysia Airports' Care Ambassador, Nevyr (left) had a great journey with his family. — DESIREE KAUR Desiree took a proactive approach before the flight by calling ahead to inform the crew about Nevyr's condition. 'This was more pre-emptive in case of a meltdown – we wanted to ensure the crew was aware due to safety measures which are, of course, taken seriously in flights,' she says. The early communication paid off as Desiree and her family were allowed to board early alongside Business Class passengers. Noor, on the other hand, didn't request any formal disability services from the airline for Wan Jamila, but she made one important request: an aisle seat in the front row. 'It was a small yet thoughtful adjustment that made a big difference. It gave her the freedom to move around easily if she became anxious or restless, or if she needed to use the restroom without having to navigate past other passengers,' Noor explains. Desiree (seen with her husband, and their son, Nevyr) suggests using social stories to prepare autistic kids for plane travel. — DESIREE KAUR Take-off takeaways Caring for children and individuals with autism is often described as being the ultimate expert in them – from knowing their needs, understanding what triggers them and preparing for the unexpected. When asked about what travel preparation advice these mothers would give to parents with autistic children, they have much to say. Both Nik Nadia and Desiree agree that there is no such thing as being too prepared. They also highly recommend registering for the Butterfly Effect. 'For first-time travellers, definitely be over prepared. Make sure to learn from other families' experiences and utilise social stories to help your autistic children expect what is going to happen to reduce their anxiety. Most importantly, don't be shy to ask for help if needed,' Nik Nadia suggests. For Desiree, she realises how important it is to not take things for granted. 'While our one round trip to India was uneventful during the journey, I know that it can be quite a different experience next time.' She advises parents to always have comfort items with them when travelling and to consult with the airline beforehand on making accommodations for autistic passengers. Ameera offers practical insights, too. 'Prepare your child in advance with visuals and social stories. Make sure to bring noise-cancelling headphones for your child, it's definitely a must to help with the noise.' Ameera notes that parents need to carry with them both patience and flexibility – a belief that Majakil shares, knowing well how unpredictable things can be. 'Plan your trip well and try to stick to the plan, but at the same time be flexible as sometimes unexpected situations may arise,' adds Majakil. 'Staying calm and adaptable can make the journey smoother and less stressful.' Flying with autistic individuals might take extra effort, but it's far from being out of the question. And for many parents, it's not just about arriving at the destination – it's about making the journey itself feel safe and meaningful for their loved ones. Apart from highlighting how crucial communication with the airline staff is, Noor also mentions how important it is to celebrate the small victories. 'Every smooth check-in, every peaceful take-off and every smile mid-flight is a moment to be proud of,' she concludes. A buggy ride is available for families with special needs at both the KLIA terminals. — NIK NADIA
