TAKING HEART

Guide to help caregivers of autistic children has its pilot launch 

The full online version will be available at end-2025

 Vivien Ang
Published Tue, Apr 1, 2025 · 05:36 PM
    • Life After Death was conceptualised by Denise Phua, mayor of the Central Singapore District, in her volunteer capacity as president of Autism Resource Centre (Singapore) and chairman of Autism Association (Singapore).
    • Life After Death was conceptualised by Denise Phua, mayor of the Central Singapore District, in her volunteer capacity as president of Autism Resource Centre (Singapore) and chairman of Autism Association (Singapore). PHOTO: AUTISM NETWORK SINGAPORE

    [SINGAPORE] Farah Juwita has accepted the fact that her son may not be able to enter the job market in the future.

    Mohamed Ilhanshah Kamarudin, 12, is on the autism spectrum. His 46-year-old mother said: “There aren’t many options for kids like him who have higher support needs… (and my) biggest concern is for Ilhan’s well-being after my husband and I pass on.”

    Similar worries among parents and caregivers of people with autism was what spurred the playbook Life After Death, a project piloted by Autism Network Singapore.

    The playbook had its pilot launch last Thursday (Mar 27). It focuses on encouraging families to take charge of future planning and calls for more support from the community. The full online version will be available at the end of 2025.

    It is also the first of its kind in Singapore to curate relevant information into a simple, organised and structured guide to help caregivers focus on big-picture planning, said Dr Sim Zi Lin, psychologist and programme director of the Autism Resource Centre (Singapore).

    The guide was conceptualised by Denise Phua, mayor of the Central Singapore District, in her volunteer capacity as president of Autism Resource Centre (Singapore) and chairman of Autism Association (Singapore). It was also developed by a team comprising parents and caregivers of individuals on the autism spectrum, as well as autism professionals and community volunteers.

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    The playbook includes topics such as financial arrangements, health matters and housing issues.

    Dr Sim said that many of the children who attended Autism Resource Centre (Singapore) and Pathlight School are now adults.

    Mohamed Ilhanshah Kamarudin, 12, is on the autism spectrum. PHOTO: FARAH JUWITA

    “This also means that there is a growing number of caregivers who are older, particularly in their 60s and 70s, and with that comes many worries about what will happen to their child after they, as caregivers, are no longer around,” she noted. “It is timely to create a playbook to support caregivers in future planning, so as to enable their child on the spectrum to continue to thrive even after their caregivers are no longer around.”

    The psychologist said that the playbook was designed to be a structured step-by-step guide to get caregivers started on planning. “We did not want to re-invent the wheel or duplicate previous efforts… Instead, we get caregivers to focus on the big-picture planning in our guide – identifying what is meaningful for them and their child – and they are then signposted to various service providers upon identifying aspects that are critical to the Life After Death plan for their child.”

    The playbook will be complemented by facilitated workshops and consultation services.

    “It is a ‘live’ guide that will continue to evolve as the landscape and services change,” said Dr Sim. “A misconception is that people on the autism spectrum cannot have quality lives… and will have to be dependent on their caregivers in the long term. Given appropriate training and support, many individuals can… lead quality lives. Gradually, their reliance on caregivers can decrease as well.”

    Farah said: “Most caregivers like me don’t know where to start when preparing for our child’s future after our death. This playbook is useful as a step-by-step guide – how to begin our preparations, what to do, and a list of resources that we will need along the way.”

    Interested caregivers of autistic children can find out more about the playbook at: https://www.autism.org.sg/forms/lad-workshop-2025.

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