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Reading this, you may think that my brother is a kindergartener. He’s actually thirty-years-old.
My family child psychologist diagnosed my brother with mid-spectrum autism when he was three-years-old. My parents only began to suspect his condition after his delayed language development and lacking social skills became evident. Since young, I have known that it would be challenging to develop an emotional bond with my brother; for the autistic, most social and environmental cues are utterly incomprehensible. But despite such great emotional barriers, his behavioural changes during lockdown were hard not to notice.
The circuit breaker had strained my brother, Christopher’s, already fragile sense of stability in his daily routine. His behavioural therapy and walks in the neighbourhood park were cancelled. The pandemic resulted in the temporary closure of special education schools and services such as psychotherapy. Anxious, my brother had clapped his hands repetitively and became increasingly uncommunicative during quarantine.
Though I could see his distress, I could not comprehend his exact needs. Growing up, I took up an interest in learning about developmental psychology in an attempt to understand his behaviour. But with the maturity of living with Christopher for seventeen years, I realise that that knowledge would not translate into a clear understanding of his subjective experience.
The cacophony of his shouting and fits prompted me to wonder about autistic people’s experiences and issues during lockdown. For those who rely heavily on certain prescribed medications and professional support for autism, the lack of access to healthcare services posed a problem. According to Joshua Gordon’s article Coping for Coronavirus: Support for the Autism Community, parents of autistic children and adults recommended for quarantined autistic individuals to attend online therapy sessions; this would act as an outlet for effective communication, helping them keep their emotions in check.
And the pandemic has not only affected autistic people – their caregivers find themselves struggling to juggle daily responsibilities and caring for their autistic relatives around the clock. It doesn’t help that some autistic people may not want to carry out new actions required of them, such as wearing a mask.
A fierce duality arises when it comes to caregivers’ autistic kin – while most parents show extreme love, care, and devotion to their child, being a 24/7 primary caregiver is an insurmountable burden. Being paired with emotional toddlers their whole lives is undoubtedly draining as they have their own affairs to manage. Caregivers would normally focus on themselves when their autistic kin attend school or work – however, the pandemic has deprived them of this personal time.
Unfortunately, the shift towards a greater reliance on digital communication during quarantine more often than not fails to benefit autistic people. The underlying inequality presents a huge gap when addressing coping strategies for the autistic community. With autistic people being excluded from virtual benefits, this means that educational resources distributed to uplift the autistic community, such as technological devices, are sorely lacking.
There is also insufficient teaching of autistic people on how to make use of technological devices to compensate for their unfulfilled social interactions. My brother, like his schoolmates, had simply experienced a school closure with no amends to this heavily disrupted routine. Occasional phone calls from teachers and words of assurance such as ‘school will be opening soon’ were not enough. In Singapore, policies like SkillsFuture and schemes like the Workfare Training Support Scheme operate on the neoliberal assumption that Singaporeans must reskill to remain competitive. The move towards digitisation not only exacerbates inequality, but inequitable policies obfuscate the issue with a veneer of assurance that governments have been remedying the issue.
The digital revolution is undeniably relevant to the autistic community; yet, it is often overlooked. It may seem that home-based learning (HBL) would be a welcomed change to autistic people as it provides an escape from the exhaustion of face to face interaction, but the human touch is still indispensable. Although it is a stereotype that autistic people prefer to avoid communicating with others completely, they, like the rest of us, still need a level of intimacy at the very least. Teaching greater ICT skills to autistic children and adults would give them the chance to resume their daily routines virtually. While autistic individuals often need face to face interaction, external stimuli, such as the sounds and commotion of a structured environment like a classroom, can often lead to sensory overload. HBL therefore offers an innovative opportunity to toggle classroom and online engagement based on the individual’s changing social needs. They will have greater chances of attending classes and earning a living through working from home. Medical appointments can continue and apps that promote fitness can act as partial substitutes for outdoor activities. Studies have shown that autistic individuals are especially well-versed at repetitive tasks like coding and in fields such as software engineering or computer programming, which require little social interaction.
Capitalising on technology would allow caregivers to focus their attention elsewhere. Working from home will also be less of a distraction as their autistic relative will be more preoccupied with their own devices. Virtual caregiver circles can be set up with host volunteers – who are well versed in communicating with autistic children and adults – giving advice and resources to get through the pandemic. They can also be 24/7 sources of outreach when autistic people wish to communicate and their caregiver is busy.
Unfortunately, the lack of opportunities for autistic people to upgrade their ICT skills only accompanies the problems of current measures aimed to help the community during these uncertain times. Current schools and schemes tend to only benefit high-functioning autistic individuals and caregivers; for example, schemes intended to uplift mainly target caregivers and their autistic kin, such as the Enabling Guide by SG Enable and educational resource packages sponsored by movements such as Superhero Me. Several schools, including Pathlight, rejected my brother for “not having a high enough IQ”. Not to mention, the already small pool of employment accessible to autistic adults has further shrunk during the COVID-19 pandemic.
Therefore, the government should roll out relief funding in order to specifically uplift these disadvantaged Singaporeans. Initiatives could include monthly pay outs with low eligibility criteria for autistic adults. Such pay outs should be available beyond the circuit breaker period in order to allow a safety net of financial support. Now reopened schools and workplaces should also provide ICT training to autistic people. Complementing this measure would be the creation of care packages to specifically target autistic adults and include mobile devices, in addition, to merely necessities such as food.
Even in a society that invests in socially integrating the marginalised, we still overlook certain groups within the marginalised. Autistic adults are one such example. The issue lies in the fact that Singaporeans are still, on the whole, unaware of the extensive impact of autism. Autistic individuals often also look indistinguishable from neurotypicals. Overlooking the real impact of autism has led to measures that tend to cater to more familiar demographics and not so much the population of autistic adults.
Additionally, due to public ignorance, we neglect distress derived by autistic people from the confinement of quarantine. The transparent cage that autistic people find themselves in is one people tend not to recognise, making autistic voices go unheard and unacted upon. Everyone expects others to abide by strict codes of social responsibility, but what most of us fail to grasp is that people who do not follow these codes are not necessarily dismissing the importance of the greater good. Even with unimaginable amounts of empathy directed towards them, we treat autistic people more as objects than as humans – objects we need to manage, things to be kept in control. Rarely do people offer the warmth of understanding that lends effort into treating the autistic as legitimate individuals. With the COVID-19 crisis, people deny the autistic community this fundamental reprieve by chastising autistic people for socially inconsiderate behaviours, such as refusing to wear a mask.
I can’t help but worry about what the world has to offer my brother. As a Singaporean, I was born and bred in line with Singapore’s mantra of economic growth and innovation. Stuck in lockdown with my brother, I’ve come to realise how easy it is to gloss over the vast inequities that continue to persist. I may not be a psychologist, but I can still try to understand my brother’s needs.
