The topic of death can be somewhat taboo for some of us.

But for Susie Lim, a 71-year-old retiree who's caring for her 31-year-old autistic son Zhaoxiong, planning ahead is tough, but essential.  

Speaking to AsiaOne, the mother of three shared that she has been discussing long-term plans for her son with her family for the past 10 years even though it can be "heartbreaking".  

This includes matters like where he's going to stay after her passing, as well as the meticulous management of his documents from psychologist reports to financial matters and even medical certificates — all of which she has been filing and organising "from day one".  

To offer more support to parent caregivers like Susie, Autism Network Singapore (ANS) is launching an online playbook — Life After Death — to help them plan for their loved ones' future after they're no longer around.  

The pilot was launched on Thursday (March 27) in light of World Autism Awareness Day, which falls on April 2.  

The official launch of Life After Death is slated for the end of the year.

With the playbook, Susie believes that everything is made much easier — especially when other family members or caregivers want to access information or documents for their loved one living with autism. 

Instead of rummaging through shelves and going through documents individually, such information can all be consolidated in one place. 

"With this resource, it's so good. You [can] just put everything [in], so that the next person will know what to do. Everything is there," she said. 

Conceptualised by Mayor of the Central Singapore District Denise Phua, who is president of the Autism Resource Centre (Singapore), or ARC(S), and chairman of the Autism Association (Singapore), the playbook was developed by a team of parents and caregivers of individuals on the autism spectrum as well as professionals and community volunteers.  

The team includes Dr Sim Zi Lin, psychologist and programme director of ARS Singapore, who led most of the development process.  

"The Life After Death playbook is a directional roadmap that aims to empower caregivers and families so that they can plan for their children, young and old, on the autism spectrum to ensure and enhance their quality of life, so that they can move from a place of fear to a place of hope," Mayor Denise Phua explained to AsiaOne.  

Some important features of the playbook are folders with templates including essential information and documents about the caregiver's loved one, from legal documentation and health records to personal details like hobbies and interests.

The platform will include sections such as Health Matters, Housing Matters, Meaningful Engagement and Money Matters. 

Caregivers can expect to find downloadable templates with prompts that would encourage them to list their future arrangements for their loved ones covered by these topics like financial arrangements and planning for engaging interactions over the course of their life — such as finding a job or picking up a hobby. 

ARC(S) will run facilitated planning workshops to guide caregivers through the playbook later this year. 

Interested caregivers who wish to learn more about the playbook and want to participate or be informed about when the full playbook is launched can visit https://www.autism.org.sg/forms/lad-workshop-2025. 

According to Dr Sim, this is "in preparation for the future caregiver" for when the current caregiver has passed on or is no longer able to care for the individual.  

Another key feature in the Life After Death playbook is a section called Towards a Flourishing Life — where caregivers can set goals and envision what the ideal future looks like for their child by making a vision statement.  

This ties in with one of the main inspirations behind the playbook — focusing on hope instead of fear of the future.  

"With the playbook, what we do is to simplify what a future might look like, and also what are some key dimensions you should pay attention to using our quality of life framework so that it doesn’t feel so scary to think about the future," Dr Sim shared with AsiaOne.  

Encouraging fellow caregivers to embrace the resources available like the upcoming Life After Death playbook, Susie shared: "I would say that now, it's so much easier. [If] you want anything, you go onto your phone [and] the information is there. 

"Every household is different and every autistic child is different. So you've got to open up and share." 

Mayor Denise Phua also emphasises the importance of community support — especially for those who are still hesitant or anxious about planning for the future. 

"My advice is don't stay in a place of fear and helplessness. Take the first step and get into the community. You don't have to walk alone. We are there as a community," she said. 

carol.ong@asiaone.com

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