How about Me? The Mental Health Fragility of Caregivers for Children with Autism Spectrum Disorder
By N Rizwanul Bahmid (Guest Editor)
Mental Wellness during COVID-19
Although the COVID-19 pandemic has brought about countless problems globally, it can also be viewed as a blessing in disguise. Social issues that were once hidden under the surface are now in more conversations. One prominent conversation that has sparked much attention amongst many Singaporeans is the topic of mental health. Once categorised as a ‘taboo’ subject, the social stigma is now waning due to increased education and awareness regarding the importance of this topic. A noticeable increase in state and public initiatives have been made to support mental health, with corporations even adopting initiatives to tackle the issue.
However, some segments within society do get overlooked, with inadequate support for them. Caregivers – from the professional to the benevolent family member – are one of these less-discussed agents. With April being Autism Awareness Month, there is not a more opportune time to highlight the caregivers of children with Autism Spectrum Disorder (ASD).
Caregiving and the Pandemic’s Extra Stress
Personally, I am not diagnosed with ASD nor am I a caregiver of someone who is diagnosed with it. Nonetheless, this article is a culmination of research and observations pertaining to this matter, with the hopes of raising greater awareness of such an overlooked issue in society.
Noticeably, during the pandemic, caregivers of children with ASD had to put in extra effort to make sure that they understood the scale of the crisis and what it entails. To ensure that these children adopt proper safe distancing measures – to prevent them from contracting this virus and also follow the laws – special forms of instruction mechanisms were adopted.
For instance, although children with ASD are generally aware of the changes in their surroundings, they often require visual instructions as opposed to verbal. This helps them to picture the detrimental consequences of the virus compared to just hearing about it, where they may not internalise the message. Moreover, instructions must be clear, explicit and directive rather than descriptive. For example, simply telling the child what the virus is and why one should stay at home is likely to yield unfruitful results. Instead, caregivers need to go the extra mile by reasoning and explaining to them in detail why staying at home is better than going outside. Although this may not seem challenging to some, doing this on a daily basis repeatedly across various topics and situations would add a layer of additional stress on the caregivers.
Caregivers are not just these parents: indeed, educators are also critical agents in caring for children with ASD. All things education-related affects teachers as significantly as it affects students. Perhaps even more – they plan special educational materials, apply different teaching techniques, and worry over the safety of the ASD students. Hence, many different actors take on the heavy responsibility role of caregiving. Yet, their wellbeing is often glossed over. Who, then, takes care of the caregivers?
At the height of the pandemic – when lessons were all conducted online – parents of these children had to make extraordinary changes to their daily routine. The support structures provided by Special Education Schools, such as Eden School and Northlight School, are usually not present in an ordinary household or within its immediate vicinity. For example, the ‘Fun Square’ in Eden School is a neighbourhood-like playground fitted with equipment and interactive panels which improves the children’s sensory needs and enhances their psycho-motor skills.  However, a typical neighbourhood playground is not equipped with such facilities, which may hinder the children’s learning process. This might increase the parents’ anxiety levels, who now feel stranded and perceive themselves to lack the capacity to teach their children from home.
Prior to home-based learning, when the children are at school, parents have more time to rest and catch up on other work. However, the Circuit Breaker resulted in children spending most of their time at home, and parents ‘me’ time became even less. Without a doubt, personal time for these parents is considered a ‘luxury’ for they have pressing responsibilities, including their jobs, on top of caretaking. However, we should not be quick to dismiss the importance of this ‘luxury’ as it helps them recuperate from their hectic lifestyle. The pandemic has greatly reduced time for themselves, which adds on to the already insurmountable task of caretaking.
Moreover, parents who have children with ASD often find added challenges when connecting with other parents. Due to the different parenting style adopted by parents with ASD children, other parents are not able to resonate with them. It is also often assumed that children with ASD are not typically affable and sociable. However, this is not true for two reasons.
Firstly, children with ASD do want friends and other people to be around them. They are very amicable and have the same social needs as any other children. Secondly, although the parent’s life is altered due to their children’s extra needs, they themselves are not any different. They are human beings who also desire social relationships. As such, this added tension from these misplaced perceptions compounds stress for parents. Hence, the mental health of these caregivers becomes particularly fragile – yet one that is often overlooked.
In 2020, the Ministry of Health (MOH) and the Institute of Mental Health (IMH) formed the COVID-19 Mental Wellness Taskforce (ComMWT) to study mental health impacts on the Singaporean population.  The Taskforce made a considerable number of recommendations on how the various Ministries and agencies can work together to identify any gaps in the current policies. Additionally, during the Budget Debate 2022, Member of Parliament Nadia Ahmad Samdin voiced her opinion on the state of mental health in Singapore, proposing that Singapore should take steps to become a more ‘mental health-ready state’ by enabling greater and affordable access for mental health treatment and reduce workplace discrimination for those with mental health issues. 
Although these state-led initiatives are a right step forward for Singapore and its attitude towards mental health concerns, there are certain parts of the population they unintentionally overlook. For instance, the ComMWT assesses the psychological impact of the population as a whole; studies were conducted on three broad categories (General Population, Youth and Older Adults). The report was thus rather generic in its findings and lacked in-depth analysis into any sub-population. Here, the ComMWT does not specifically look into the needs of these caregiving parenting; instead, they are rounded up into the ‘General Population’ category. Concrete analysis regarding the challenges caregivers of children with ASD face and the additional help they need thus slips through the ComMWT’s broad approach. Moreover, another pertinent issue arises: these caregiving parents come from varied socio-economic backgrounds, and those with lower income are at particular risk of slipping through the initiatives’ cracks.
At the grassroots level, CaringSG tries to provide additional support . It is an informal support group which is caregiver-led, and aims to foster a community amongst the special needs caregivers in Singapore. Since its establishment in 2020, it has worked to build an inclusive community for caregivers who might feel ostracised and overly stressed due to their vicissitudes. They organise workshops specifically curated for caregivers of people with special needs. These workshops aim to aid these caregivers on how they can better handle their predicaments and have helped alleviate some stress these caregivers feel on a daily basis – especially in these unprecedented times.
However, CaringSG is nonetheless still a non-profit organisation, which means that very little can be done to sustain and promote the wellbeing of its beneficiaries on its own. Although organisations like CaringSG provide much-needed support for caregivers on the ground it is not enough to just rely on them to eradicate or at least ameliorate the problem. Moreover, the programmes offered by CaringSG are short term, ranging from six months to a year. Thus, we cannot assume that the problems that caregivers face will be diminished by that short time frame.
Furthermore, the organisation estimates that there are about 350,000 caregivers in Singapore . This organisation alone is not able to handle the needs of all of these caregivers. Lastly, the programmes offered by this organisation are mostly run by volunteers. Hence, the success of these programmes could be jeopardised for it is heavily dependent on the number of volunteers who are actively able and willing to participate. It is thus unwise to depend heavily on such informal support groups.
One way to tackle this issue is to buttress these ground up initiatives. The government could step in and make extra efforts to support organisations like CaringSG through increased funding and manpower. Perhaps the government could consider setting up a permanent counselling service with trained staff as opposed to a volunteer-run system. Moreover, given their vulnerable nature, the government could consider a ‘fast-track’ system for these parents in which they are able to get immediate counselling services and perhaps even special financial support for those in need.
Until substantial and targeted policies are promulgated to lessen the burden, parents of ASD children could possibly cultivate some daily practices and habits that could potentially aid them in their conundrums. Firstly, they must ensure that their own physical needs are taken care of . Although seemingly obvious, parents often forget to care for themselves in the midst of caregiving, especially in the most basic tasks of eating and resting well. This is completely understandable as it is imbued in their psyche to do so. However, they need to remember that they can only care for their children when their own health is taken care of.
Additionally, it is important to have an outlet to address emotional burdens they may experience. This can come in the form of support groups or seeking mental health treatment if the problems persist for an extended period of time. Caregivers should also always set aside some time for themselves to rejuvenate and replenish their spiritual well being. This can be, for example, taking short breaks and making time for their favourite hobby . While doing so, parents could perhaps allow their children some ‘screen time’, which acts a form of distraction for the children to reduce the need for the parents to constantly oversee them. Albeit being difficult, they should avoid feeling guilty for not ‘taking care of their child’ when they take such breaks. Indeed, what caregivers do on a daily basis is extraordinary and a feat that cannot be done by everyone. These factors, although seemingly minute, have colossal impacts on their mental wellbeing.
Contrary to physical health, mental health is not as obvious as it is hard to ‘see’ someone with mental health issues. Hence, it is in society’s best interest to be acquainted with signs of mental distress. Although no one expects everyone to be an expert on this topic, possessing basic knowledge of the ‘tell-tale-signs’ would be adequate to tackle these issues. We as a society have to be receptive to their needs and caution ourselves from bruising it off or discounting their feelings. We could simply check in with those who we think or have had episodes of mental distress or trauma.
These individuals are not looking for expert advice. All they want and need is for someone to listen to how they feel and share what they are going through. If need be, we can always direct these afflicted individuals over to a professional. That said, we need to remember that not everyone has access or the resources to consult these professionals. Thus, we as a society have to work together to act as a ‘pseudo-professional’ who is just there to be a listening ear. Helping one another is the only way we grow as a society to make it more inclusive - after all, we are only as strong as our weakest link.
With this April being World Autism Month, it is also most opportune to raise awareness on and commemorate the sacrifices that the parents and caregivers of children with ASD face daily. Perhaps, this month could be revitalised to include caregivers as part of the commemoration, so that their contribution remains unforgotten. The term ‘lest we forget’ can be applied here too.
Bahmid is a Year 2 PPE student who is currently trying to navigate through his university life. He has a keen interest in socio-political issues and can often be seen indulging in a book whenever he is not drowning in assignments. Outside of school work, he is usually engrossed in discussions (read: arguments) amongst his friends about the latest happenings in the sporting world (mostly cricket and football).