People with autism need more support to live independently, says masterplan

Students at Pathlight School taking lessons in coding.
Students at Pathlight School taking lessons in coding.PHOTO: AUTISM RESOURCE CENTRE SINGAPORE/PATHLIGHT SCHOOL/FACEBOOK

SINGAPORE - People with autism could benefit from more help from an early age to prepare them to live and work independently, a new masterplan has recommended.

This could mean programmes such as residential training or supported internships.

It was one of 14 key recommendations in a roadmap set out to improve the lives of people here with autism and their families.

These also include encouraging organisations to commit to a voluntary quota for hiring people with special needs, as well as suggestions to improve the quality of autism services, lifelong learning and plans for support after the death of caregivers.

Dr Sim Zi Lin, a psychologist and autism therapist with the Autism Resource Centre (ARC), said on Monday (March 29) that various gaps needed to be bridged in order for people on the spectrum to improve their quality of life.

For example, many are underprepared for work and life as adults after leaving school.

"About 50 per cent of students on the spectrum in Singapore are not in special education but mainstream education settings. So for these students in the mainstream education settings, they don't get specialised support and training in these life skills areas," said Dr Sim.

The masterplan, unveiled ahead of World Autism Awareness Day on Friday, was developed by ARC with support from the Autism Network Singapore, which also comprises the Autism Association (Singapore), Awwa, Rainbow Centre and St Andrew's Autism Centre. More than 500 stakeholders have been consulted since the end of 2018, including people with autism, parents, caregivers and professionals.

ARC president Denise Phua said the Autism Enabling Masterplan had been submitted to the Government for consideration. She told a media briefing at Pathlight School in Ang Mo Kio that while the Government is currently developing the fourth Enabling Masterplan that targets all persons with disabilities, the needs of different disability groups are not homogeneous.

"Having this (Autism Enabling Masterplan) will ensure the needs of our sector and of our autism community will be more accurately identified, prioritised and also addressed," said Ms Phua.

The plan highlights six high-priority areas and comes up with 14 recommendations.

The six areas are quality assurance for autism services, planning for life, learning for life, employment, residential living and planning for life after the death of caregivers.

Another gap it highlights is that many ageing caregivers are worried about the future of their children when they die, and have trouble putting together a "life after death" plan.

The masterplan recommends that a "playbook" of sorts be designed to help such parents.

Another suggestion is to establish an Enabling Academy to identify learning needs and to source, develop and deliver learning solutions. This is because post-school learning options here are currently limited for those with autism.

The masterplan also suggests developing a toolkit of best practices for hiring and supporting adults with autism in the workplace. It recommends developing a continuum of sustainable and integrated residential living options for adults with autism, as currently most live either in their family home or in one of the two autism-specific residential homes here.

Dr Lim Hong Huay, a freelance paediatrician, has two children with autism - a daughter aged 18 and an 11-year-old son. Her daughter has just graduated from Pathlight School, which provides a special education, and will enrol in a polytechnic.

"As a parent, I struggle because I don't know how to help her to continue to learn. In a special education school, there are always teachers helping us, to tell us where the areas are she needs to improve, but now there won't be," said Dr Lim, 49. She said she welcomed the masterplan's recommendations to improve support for lifelong learning.

Dr Sim noted that while ARC will work with the autism service providers here to achieve the goals of the masterplan, some of them are already in the works.

For example, ARC and the Autism Association (Singapore) are supporting a workgroup of caregivers and volunteers, set up in October, who have been gathering literature and resources to prepare a "playbook" to help those with autism to thrive even after the death of their caregivers.

ARC has also initiated a project to develop alternative residential models, said Dr Sim.

"Making this plan a reality really requires the entire autism community to come together and work on implementing the plans synergistically.

"We need all hands on deck - individuals, families, the different social service agencies and the Government to come together. None of us can do it alone."