Today the world observes World Autism Awareness Day, to recognise and support individuals living with autism. To commemorate it this year, the Autism Resource Centre (ARC) launched Singapore’s first major masterplan on 29 March for individuals diagnosed with autism spectrum disorder. The masterplan details recommendations to guide the nation’s efforts in addressing the needs of individuals on the spectrum, covering their early years to adulthood, in areas of independent living, learning and working. Why is such a plan important and how will it improve lives? TheHomeGround Asia finds some answers.
About one in 150 children in Singapore are diagnosed with autism, according to the Government’s third Enabling Masterplan released in 2016. For these individuals, existing in a neurotypical world presents a range of challenges.
“[Each child living with autism] has different troubles and difficulties carrying out daily routines,” explains Gin Lee, 24, who grew up with a younger brother, 18-year-old Mickey Lee, who was diagnosed with autism spectrum disorder (ASD).
“My brother has anxiety issues,” she shares. “Sometimes, he goes into a stunned episode, where he just stares into blank space… and [repeats] phrases like ‘it’s okay’, ‘just relax’ – phrases that we tell him to help him calm down. These phases can last between 30 and 45 minutes.”
Occupational therapist, and Founder of Wonders’ Therapy, Jewel Yi explains that individuals diagnosed with ASD may “struggle with rigidity, social skills, or sensory processing.”
Preparing for independent living
For Ms Lee and her family preparing Mickey to live independently is a work-in-progress.
“At the moment, I see his biggest obstacle as his anxiety,” she says.
Mickey relies heavily on his sister for emotional security. Whenever she is out, Ms Lee can expect to receive voice messages or calls from her brother multiple times a day for reassurance. The family is also anxious when bringing him out as they are unable to predict when he would act out.
His anxiety was diagnosed recently and he is now taking medication, which seems to be helping, leaving Ms Lee hopeful for his future: “We are seeing improvements, and there is still quite a long time to work on it. [We will] think positive.”
Even so, she recognises that an earlier intervention could have made a significant difference to her brother.
“For children who get diagnosed with autism earlier, the right organisations are able to help the child adapt better, they can function better in their day-to-day lives,” she shares. “Those who get identified later, like my brother who was already nine when he first started in a special needs school, have a harder time adapting.”
She adds, “They are only in a special needs school up till the age of 18. There’s limited time to adjust.”
Ms Yi confirms this, “Early intervention is extremely important. How you teach and educate them when they are young will strongly impact them in their future. If they are young and they don’t learn these core skills [skills required for daily living and social interaction], in time to come, it will be harder for them to live independently.”
Challenges with early intervention
Yet, early intervention comes with its own set of challenges. Ms Lee highlights two; a lack of public education, and a lack of financial and institutional support.
“For public education, there’s still quite a bit of room to identify issues early so that the right organisations can step in to help the families.” She also raises the point that some family members remain in denial of a child’s condition, which may delay or prevent children from getting the help they need in a prompt manner.
Agreeing, Ms Yi adds, “A lot of families really struggle with acceptance, and accepting the fact that [their] children need intervention.”
Additionally, she believes that more can be done at the early ages to prevent individuals from developing maladaptive coping habits or behaviours. For instance, she cites how excessive screen time for children can mean that they are not practicing core skills like regulation and coordination.
“A lot of these issues come about when caregivers are not as aware or really tired, and so the screen is a good babysitter,” she explains. “Many of these issues, of poor social skills, poor regulation skills, could have been prevented by caregivers being aware of the effects of screen time.”
She adds, “Prevention is better than trying to remediate some of the negative effects that have come about.”
Another barrier to early intervention is finances.
“In Singapore, it is pretty expensive to get early intervention, treatment, and so on,” says Ms Yi. And when the cost of medication, social support and schooling is taken into account, Ms Lee says, “it takes a lot out of a family to financially support the treatments throughout their lives.”
While financial support schemes are available to families who require it, Ms Lee thinks that the application process for some of these schemes are excessively cumbersome.
“Current financial schemes available are very mafan [‘troublesome’]”, she laments. “There’s too much paperwork for them to assess the needs for financial assistance, and sometimes, families have [circumstances where they need help but] it’s not clear from paperwork.”
Living with autism later in life
While early intervention is vital in helping individuals on the spectrum adapt, providing them with sufficient support throughout their lifespan remains a necessity.
According to ARC’s research, adults on the autism spectrum lack support, especially those who have greater needs and are unable to join the workforce. For these individuals, enrolling them into Day Activity Centres (DACs) is an important way to keep them engaged.
Yet, the total capacity of DACs in Singapore stands at only 361 places, whereas ARC estimates that at least 3,000 adults with autism can stand to benefit from such programmes.
For adults in the workforce, ARC also highlights a lack of support when it comes to lifelong learning.
The Autism Enabling Masterplan finds that many special education students stop learning after formal education, as there are few structured learning programmes available in Singapore that cater to individuals living with ASD.
ARC’s website states, “Lifelong learning… is not accessible to many adults on the spectrum. Most SkillsFuture offerings do not provide the needed disability learning support, and trainers are rarely equipped to teach persons on the spectrum and may therefore choose not to enrol prospective trainees who disclose their autism condition. As such, many adults on the spectrum run the risk of their skills becoming obsolete.”
Where does the masterplan come in?
Denise Phua, President of ARC, says, “While Singapore has the Enabling Masterplan for the Disabled, the needs of different disability groups are not homogenous. It is therefore important for each disability group to identify its own needs and address these gaps within their specific groups.”
Ms Lee agrees, “Each disability has specific needs, and autism itself is already a spectrum… I feel that having a masterplan specific to helping individuals with autism is a step in the right direction.”
Developed with input from over 500 contributors (including professionals and families), and with the support of the Autism Network Singapore, the masterplan details six priority areas. To address these, ARC’s recommendations include setting up an Enabling Academy to “identify learning needs and to source, develop, and deliver learning solutions for persons on the spectrum.”
It also suggests developing a toolkit of best practices for hiring and supporting adults on the spectrum in the workplace, and designing a comprehensive guide to support planning for Life after Death of caregivers.
While Ms Lee welcomes the masterplan, she remains cautiously optimistic: “The recommendations are still in the planning stages so I’m taking a wait-and-see approach to how the Government will implement these, and how effective or supportive it will be for people with autism, their families and caregivers.”
Looking beyond the masterplan, at community support
Besides institutional changes, the community’s actions can go a long way in forging an inclusive community that is more welcoming and less daunting for individuals on the spectrum and their families.
“Most people think that they [individuals on the spectrum] are crazy. When family members are trying to move them away from a situation, the public tends to call the cops,” she says.
“We’ve had to deal with at least two incidences because my brother refused to go home after getting off the school bus,” she recounts. “It’ll help if the public knows to not call the police when the situation is under control. Don’t jump to conclusions, try to understand the situation and help.”
Ms Yi is of the same mind: “When a person or child with autism has a meltdown, the public [needs] to be more aware that it is not because they’re naughty kids, or that the parents are not good. It’s really because he has special needs. When we have a more empathetic social environment, I think people will be able to thrive better.”
Another point of frustration Ms Lee raises is that of children on the spectrum going missing. She recalls a recent incident where her brother was lost on the Downtown line for six hours, and no one had noticed that he did not tap out.
“I guess it’s just a Singaporean mentality; when somebody is doing something strange, you just look away, instead of approaching them asking if they need help,” she rues. She also emphasises that children with autism tend to go missing because they are easily distracted by things that interest them.
“There is actually very little parents or caregivers can do to stop the kids from running away,” she says. “They may bolt or they may be physically stronger, and the caregivers may be physically older or smaller, so they can’t really physically restrain or react fast enough.”
A Facebook page, titled Reunite Missing Children, was created to address this problem. It aims to rally the community to reunite lost children with autism with their families, and to educate the public on how to identify and help these children.
Beyond extending help, Mses Lee and Yi urge the community to be more considerate and supportive of individuals on the spectrum.
Ms Yi advises, “Demonstrate interest in them and in their caregivers. Ask them, ‘How are you doing?’ and ‘Is there any way that I can help you?’. Or ask, ‘Is there anything that we can do together?’ Because sometimes, it’s not just about how you can help them, it’s about what you guys can do together, and then it becomes a shared activity.”
Ultimately, Ms Lee hopes that Singapore can evolve into a society that “accepts and allows” people with autism “to live and work their way”. She also wishes for greater visibility in the media of “who these people are and recognition that they are living among us, and should be treated and respected just like any person.”