Planning ahead for kids with autism to carry on

CARING for children with autism is undeniably challenging as caregivers have to be patient, committed and compassionate in attending to their needs.

One of the concerns weighing on the mind of parents and guardians, as these children age, is their well-being.

There are often worries about the person with autism’s ability to care for themselves as they grow older, as well as their fate if parents or guardians die without planning for their future.

Factors such as their caregivers ageing as well as siblings growing up and living away from home can make the world a lonely place for the individual.

Hence, it is imperative to recognise the need to draw up long-term plans and innovative solutions in preparing for the worst.

Parents and caregivers hope that a comprehensive SAVe programme with various autism-friendly facilities can be realised soon for the children to become more independent.

Case studies

Case 1: A child with autism, born to a caring family, is surrounded by love and has the support of siblings. However, the child loses both parents in an accident.

Who will care for this special needs child?

Case 2: A person with autism has loving and attentive parents and siblings to turn to. However, the siblings are now consumed by work and responsibilities while the father, who is unwell, is busy caring for the mum, a stroke-survivor.

Who can the person with autism turn to?

Case 3: A person with autism is an only child and has been the apple of his parents’ eye. Having lived a life wholly dependent on the parents can bring about problems when the parents pass on. Will the child receive the same care and attention if looked after by others?

The three scenarios depicted above are among the realities of life when faced with the challenge of caring for special needs children, such as those diagnosed with autism.

Such situations test our resilience and compassion.

National Autism Society of Malaysia (Nasom) vice-president Mohd Nazrul Mohd Amin said one way of ensuring children with autism would be cared for was by making preparations before unforeseen events occur.

Mohd Nazrul: Making preparations before an unforseen event occurs is one way of ensuring children with autism will be cared for after the passing of their caregivers.

“After researching various methods used, specifically for children with autism, in several countries – Nasom came up with the idea of creating the Smart Autism Village (SAVe),” he told Majoriti, Star Media Group’s Bahasa Malaysia news portal, in Shah Alam.

A survey carried out by National Autism Resource Centre (NARC) in 2021, involving nearly 400 parents and caregivers of children with autism, showed that almost 90% of the target group agreed with the proposal.

Based on the survey, 87% of the participants were agreeable to send their children to facilities provided by Nasom.

A major concern for parents and caregivers is that upon their demise, their children with autism might find themselves alone and helpless.

Hence, it is important for SAVe to materialise.

The centre is envisioned as a place complete with various amenities tailored for persons with autism, including special devices to ensure their safety as well as availing opportunities for them to learn independence and acquiring skills – be it in agriculture, animal husbandry, art, craftmaking or sewing – to earn a livelihood.

Respondents believe that the smart village initiative can be a place for children to learn to live independently when caregivers are no longer around.

As a result, parents and caregivers between 51 and 60 years old said they would send their children to SAVe.

Additionally, almost all the respondents who have children with severe autism said that SAVe could provide significant support to these special individuals in their daily lives.

Survey findings also concluded that the proposal to establish SAVe needed to be expedited for the benefit of individuals with autism as well as their parents or caregivers.

These include children with autism who have lost their parents; children with severe autism (level 2 and 3), individuals with the disorder aged 18 and above; parents or caregivers aged 51 and above as well as parents or caregivers within the B40 and the M40 groups.

Nasom has been empowering youth with autism in Malaysia with skills since 1986. — Filepic

Survey findings

The respondents comprised people aged between 31 and 50 years, and a majority of them were working women.

The respondents were also from households with a monthly income falling below the middle and lower-middle categories, with 58% earning less than RM6,000.

This provided an overview that most parents or caregivers of individuals with autism can be categorised as B40 and mid-M40.

Overall, 72% of the respondents comprised 25% fathers and 3% caregivers of children with autism.

In terms of gender distribution, the survey involved a higher number of male individuals with autism compared to females.

Nearly half of the individuals with autism in this study are still unable to attend mainstream schooling, especially in the age group of seven to 17 years.

This is because the majority require important or very significant support in their lives.

Upscaling initiatives

Mohd Nazrul said Nasom had set up the Nasom Residence in Bandar Puteri in Klang, Selangor, which provided support and care services to individuals with autism.

At the facility, teenagers and adults with autism receive personal care services, ongoing therapy, and tailored life skills education to meet their needs.

The residence also offers social and recreational activities to enhance their social interactions and communication abilities.

Nasom Residence is now a safe and supportive environment for individuals with autism requiring full-time or part-time care.

Its main purpose is to provide a conducive environment for the development of individuals with autism, while offering support to their families and caregivers.

SAVe, on the other hand, is a plan to offer residential facilities, education, skills training, and other necessary support for adults with autism to thrive optimally and become self-sufficient for survival without relying on family support.

Parents and caregivers are hoping that the comprehensive SAVe, complete with various autism-friendly facilities, can be realised soon so that their children can become more independent.