We’ve come to the end of a special month, April. This month is when the autism community worldwide celebrates autism awareness and acceptance. I’ve had a busy April. One of the most memorable April days was being invited to the Enabling Village in Singapore to do a storytelling session with Open: A Boy’s Wayang Adventure. I talked about the importance of understanding feelings and how challenging it is for autistics to tell others how they feel. I used the same emoti-cards that Open’s father uses to show Open different types of feelings and the nuances of emotions. I had a wonderful time and met many inspiring individuals.
As May begins, I’m preparing for two events: an art auction/book party on the 19th at Art Porters, a gallery close to my heart, and a storytelling session on the 27th at a restaurant space housed in one of my favourite museums. I’m doing this in a bid to raise awareness of adults on the spectrum and to fundraise for service providers who cater to such adults. Why adults in particular?
As is often the case, children get the most attention. Couples adopting often focus on babies and toddlers which is understandable, as babies and toddlers are cute and adorable, tugging at our maternal or paternal heartstrings to protect and love. Older orphans are often left out, as one can imagine, and many will leave the orphanage never having had the opportunity to experience family life.
The same situation occurs with people on the spectrum where authorities focus on providing services–educational and therapeutic–to children on the spectrum, often with little funding left for provisions for adults on the spectrum.
After many conversations with people parenting individuals on the spectrum and those providing services for such individuals, I’ve come to realise that many service providers for adults on the spectrum are running on empty.
In an ageing society like Singapore’s, many parents with only children on the spectrum are worried about how their children will carry on when they pass. Assisted housing for autistic adults is still not available as a state resource, although day centres where adults on the spectrum can attend are to be found. These centres provide services like personal health education, vocational training, social interaction and recreational skills training to help adults on the spectrum cope with daily life and to offer respite to their caregivers. However, these are not residential homes where such adults live. Day centres or daycare centres as they’re known in Singapore operate 5 days a week and are closed on all major public holidays and what’s more such centres are heavily underfunded by the state. Many run at a loss and are supported by income from other areas, like education and daycare centres for children on the spectrum which come under the same business umbrella.
Daycare centres are important, especially for adults who are moderate to severely autistic. Such centres provide a safe space for individuals 18 and over who are above the age to access other forms of educational services provided by the state. Many of these adults are too intellectually challenged and cannot access other forms of vocational education which will help them gain some form of gainly employment in the future because many cannot function on their own and cannot live on their own without a carer or helper. But at the daycare, they learn to be with other adults like them, are cared for by allistic adults they trust where they can learn some important life skills.
Daycare services are important too because they provide respite to parents and carers. As parents, we all know how important some me-time is. Parents with autistic children are known to suffer from depression, exhaustion and anxiety caused by caring and loving a child on the spectrum. It is all the more important that they are supported.
There are some plans to build assisted housing for adults on the spectrum. But these will not be available in the near future. Autism awareness is still in its infancy in Singapore and the region of Southeast Asia and many organisations in Singapore are still raising awareness of ASD from the bottom-up. To be fair, Singapore is doing its best as the authorities have announced that all special needs individuals will be guaranteed a place in school (mainstream) soon. Right now, children on the spectrum are placed in ‘special’ schools where staff are trained in-house at the service providers they work at and by consultants from overseas.
Even as more and more individuals have been diagnosed with ASD, there are still many who are not that may be on the spectrum. Such adults are known to social workers seeing to their welfare as many are living on or below the poverty line and have challenges integrating socially. However, autism as a concept is still not understood by many such families. Then, there is the habit and cultural thinking behind housing: in Singapore, many (allistic) adults live with their parents even when they can afford to buy homes of their own, moving out only when they are married. Additionally, as housing is very expensive here, there are many working adults priced out of the housing market and are forced to live at home with their parents. Due to many cultural habits and thinking, very little thought has gone into how adults on the spectrum will live and with whom after their parents pass on. It is assumed that a kind relative will take these adults on and many do but what happens when these adults are only children?
It is not all dire, of course. The country is young and with nation-building being its focus since 1965, energy and resources have gone into focusing on able-bodied persons. As the nation matures and the people are waking up to a sector of their society that is diverse and requires special attention, facilities and mindsets are changing to ensure inclusivity and acceptance.
I’m doing my bit to raise awareness of this situation through the book and through collaborations with other like-minded individuals. I’m hoping to raise a sustainable amount of financial assistance for two adults who need daycare services so that their ageing parents do not have to worry about fees for some time. Why two? I like things in pairs and I’m taking small steps to make a difference.
A story that ends with a sense of hope is always a story that people remember. There is hope yet for this young nation of Singapore. As the economic race, the focus on ableness and nation-building give way to financial contentment, inclusion and security in the nation, more and more acceptance of individuals with autism will follow. I live in hope.