Serena (fourth from left) and Sofieya (fifth from left) presenting a box of autism sensory tools to Dr Siva (sixth from left) while their mother Dr Wan Himratul Azliza (left), father Dr Taufiq Abdullah (third from left) and hospital staff members look on. — AZLINA ABDULLAH/ The Star
Seeing her autistic twin sister struggle to get to the hospital in recent years motivated Sofieya Zara Taufiq to advocate for autism-friendly public health facilities.
The 12-year-old bubbly lass started an initiative called Sofieya’s Sparkle to cultivate greater understanding and sensitivity towards individuals with autism and implement practical solutions to alleviate anxieties faced by neurodiverse individuals.
“When we both fell ill because of Covid-19, my twin sister Sharleez’s treatment was significantly delayed because of challenges due to her fear of hospitals.
“A team of hospital staff had to then restrain her while seeking treatment and that left an indelible mark on me.
“Hence, through this initiative, I aim to push for more autism-friendly facilities at public and private hospitals to help individuals with autism,” she told StarMetro.
Sofieya said she had submitted a proposal to the Health Ministry on equipping facilities to be more sensory-friendly.
“For autistic individuals, getting medical care might be a challenge as they find it difficult to go to hospitals because it can be an overwhelming experience.
“In the proposal, I suggested a range of services aimed at enhancing accessibility and support for individuals with autism such as drive-through service, sensory waiting room and an autism booth for awareness,” she said at an Autism Awareness Day event by Thomson Hospital Kota Damansara in Petaling Jaya, Selangor.
Themed “Unlocking Spectrum”, the event featured several talks by Thomson Hospital doctors and guests on topics related to autism spectrum disorder (ASD) such as brain training for individuals with ASD, sibling acceptance, social support, peer interactions, transition to adulthood and importance of continued support for those living with ASD.
Sofieya and her elder sister Serena Zara, also delivered a talk on sibling acceptance.
“We are my sister’s primary source of care and people like her do not have anyone else to depend on.
“We know how to care for them but if left to public services, some might not understand their needs.
“Autistic individuals communicate in a certain way. It is also about building trust and rapport among siblings,” said Serena.
Serena is also recognised as one of 10 winners of Star Golden Hearts Award 2022 (SGHA) in the individual category for starting her own initiative at the tender age of seven dubbed Serena’s Secret, a jewellery and bracelet business to help raise funds for her sister’s treatment.
SGHA is an annual award by The Star and Yayasan Gamuda that celebrates everyday Malaysian unsung heroes.
Serena and Sofieya’s mother, Dr Wan Himratul Azliza Wan Harun also shared her experience on parenting strategies, managing transition and nutrition in bringing up an autistic child.
“Positive reinforcement is very important when it comes to raising an autistic child.
“Many parents look at autism in a negative way but autistic children are intelligent, so they should look at it in a positive way and realise their potential,” she said.
Thomson Hospital Kota Damansara acting chief executive officer Dr Siva Kumaran Jayaraman said the hospital was en route to becoming an autistic-friendly facility.
“We are working with Dr Wan Himratul Azliza to prepare a sensory room in the emergency department to treat patients with autism.
“Thomson Hospital was built to cater to the special needs community and is designed in such a way to reduce over-stimulation for people with autism.
“For example, the wards are linked to the parking lots so patients can access the ward directly.
“There are even paintings by autistic children which can be purchased by visitors,” he said.
Sofieya and Serena have also worked with the hospital’s consultants and shared ideas to enhance this vision, especially for delivering care tailored to the needs and preferences of autistic children.
