Feilina Feisol: mother, friend and great advocate of autism rights

Free Malaysia Today

From Dr Amar-Singh HSS, Anit Kaur Randhawa, Nori Abdullah Badawi, Ras Adiba Radzi, Yap Sook Yee

On June 30, 2024, Feilina Feisol died after a long struggle with lymphoma. She was a dear friend to many of us and her death leaves a vacuum in our hearts and the disabled community.

Feilina was an active disability advocate, especially for autism. Bringing up her son Naim, who is autistic, taught her the realities of the limited support in Malaysia for children with autism and their families. Hence, she actively promoted the development of services for persons with disabilities (PwD). Her aim was to have a “roadmap for every child with every disability”.

Unknown to many, Feilina was an accomplished swimmer from her school days and a technical swimming umpire, travelling the world to judge swimming competitions.

Feilina worked with supportive individuals, organisations, businesses, government agencies and the media. She was the chairperson of the National Autism Society of Malaysia (Nasom) from 2016 to 2020, a previous member of the National Council for Persons with Disabilities and a board member of Ronald McDonald’s House of Charity.

Feilina championed crucial initiatives during her tenure with Nasom. These included establishing schools and programmes specifically designed for autistic children, and fostering greater understanding by working with businesses to create autism-friendly environments.

Feilina’s dream was to bring the World Autism Congress to Malaysia to enable world experts to gather in Malaysia under one roof. The Covid-19 pandemic unfortunately hindered it. She worked with the police to develop a standard operating procedure to support people with autism during the Covid-19 pandemic. Her devotion to volunteering daily at a Covid-19 vaccination drive-through for PwD was inspiring.

Feilina was instrumental in lending support to Malaysia Airports Holdings Bhd’s Butterfly Lanyard initiative to accommodate those with hidden disabilities and give them a positive airport experience. She was also involved in supporting the work of the senator for the disabled community, sharing her ideas on how best to improve services and educate people about those on the autistic spectrum and with other disabilities.

She also supported other NGOs and was involved in their work. Feilina was an advocate for law reform and was always willing to engage, support and work with anyone who would provide an opportunity for any PwD.

In our many discussions, she was always realistic about the situation in Malaysia, the very slow progress for PwD, their families and care partners. But she continued to remain bubbly, cheerful and energetic about pushing for change. Her one-liners and hearty laugh would always lighten any tense or bleak situation, and then she would calmly advocate for the change she envisioned.

Her grit and ability to find gratitude and humour in any situation were inspiring. As she said:

“The strongest message from me to all parents is to keep fighting, not to worry about being a ‘pushy parent’. Especially when you’re dealing with health professionals and the education authorities. We know our children and what we need to do that is best for them.”

Feilina always spoke from the heart. Her heart was with every child or adult on the autistic spectrum and her vision was for them to belong. As many of us have learned, children with disabilities help us discover the true meaning of life and living.

In an article for World Autism Awareness Day 2021, Feilina said:

“My autistic son has taught me everything I needed to know about life.
Naim taught me how to love.
Naim taught me patience.
Naim taught me to think outside the box.
Naim taught me to be brave.
Naim taught me that it’s not only okay, but that it’s good to be different.”

Some of us have children with autism. Of course, each individual is different, but as parents we learn a lot from each other, especially in a society that still needs to be educated and to understand PwD and autism in particular. Feilina always shared selflessly.

Feilina was very authentic and did not care what others thought of her, as she strove to do what was best for children with disabilities. She was full of hope, even in her darkest and most difficult times, and never gave up. What kept her going was her bubbly and positive spirit.

Despite being in a lot of pain, she did not allow cancer to dictate her life. She constantly reminded us to keep working for the disabled community.

Feilina was foremost a mother, devoted daughter, proud sister and aunt – but also our friend, a wonderful person, confidante, shoulder to those who needed a lift, and great advocate for autism.

Her legacy lives on in the many initiatives and programmes she started, but more importantly in the hearts of all of us who were impacted by her life, unwavering spirit and advocacy. And for those of us working to uplift the community, this legacy will include our determination to continue striving towards inclusion for all PwD.

Our hearts, thoughts and prayers go out to Nasha and Naim, and Feilina’s parents. May they find peace in this time of loss, and some comfort in the life she lived filled with purpose, service and great contribution. She was immensely proud of both her children. They had Ibu always cheering them on, ready to take on any challenge they wanted to.

It has been a privilege and honour to know Feilina. We will miss Feilina deeply. Our nation has lost a bright light. But we will continue to be inspired by her life, that wonderful spirit, and her work continues to shine. - FMT


Dr Amar-Singh HSS is a consultant paediatrician and adviser to the National Early Childhood Intervention Council.

Anit Kaur Randhawa is a member of the executive committee of the Medico-Legal Society of Malaysia, and a member of the Association of Women Lawyers Malaysia.

Nori Abdullah Badawi is the owner of We Rock the Spectrum Gym for All Kids, chairperson of Yayasan Budi Penyayang Malaysia and a parent advocate for neurodiversity and inclusion.

Ras Adiba Radzi is the chairman of Sentoria Group Bhd, as well as a former senator and chairman for Bernama.

Yap Sook Yee is a spinal muscular atrophy activist and a founder of Persatuan WeCare Journey.

The views expressed are those of the writers and do not necessarily reflect those of MMKtT.

Feilina Feisol: mother, friend and great advocate of autism rights