Who cares? Caregivers’ perspectives of non/encounters with autism in Singapore

Abstract

In the densely-populated city-state of Singapore, encounters between people with and without disability happen in close proximity and high frequency, setting the scene for deeper exploration of the role of non/encounters in shaping urban care. To do so, this paper draws on a thematic analysis of interviews and ‘go-along’ ethnographic observations with 18 caregivers of persons with autism, spotlighting three caregivers’ narratives. Using the term ‘non/encounters’ to emphasise the importance of both encounters and non-encounters as well as their relational nature in shaping experiences of urban care, this article demonstrates ways in which co-users of urban spaces can play a role in sharing care responsibilities alongside familial caregivers. In uncovering the intangible structures of social norms and past memories that shape non/encounters beyond their immediate moment of occurrence, this article informs how urban care can be experienced and achieved. Firstly, I illustrate the role of research in constituting and facilitating caring encounters. Next, I detail caregivers’ experiences of exclusionary encounters within ableist spaces, while exploring the possibilities of care within repeated encounters. Influenced by past negative encounters, I elucidate caregivers’ desire for non-encounters to minimise experiences of exclusionary encounters. Drawing from urban studies, disability and care research, this article emphasises the importance of a disability perspective in conceptualisations of urban care. Consequently, this paper contributes to urban care literature by demonstrating the conceptual relevance of non/encounters in a non-Western context, positioning care as a shared responsibility of the urban citizenry.

Introduction

‘I feel safe when there’s nobody around. When there’re people around, I’m on my feet. Because I need to supervise very closely and be careful of what could happen next.’

–Carol, research participant

Carol, reflecting on how she feels in public spaces with her children with autism, highlights how encounters with strangers are central to how cities are experienced. Densely-populated cities are key sites for encountering differences (Valentine and Sadgrove, 2014), where encounters between persons with autism, ¹ their caregivers, and the public, take place. Understanding the role of encounters expands the possibilities of urban care beyond the work of individual familial caregivers to encompass a shared responsibility of the wider urban citizenry. Thus, this article views care beyond specific ‘hands-on’ acts of caregiving done by individuals (Tronto, 2013: 148) to include the ‘provision of practical [and/or] emotional support’ by the state, institutions and wider society (Milligan and Wiles, 2010: 737). Urban care hence acknowledges interdependency amongst individuals, entailing ‘caring about’ our fellow urban citizens by recognising and meeting the needs of others (Tronto, 1993).

Using encounters as an analytical lens to uncover how caregivers experience and hope to receive care within urban spaces, I propose encounters and non-encounters as modes of urban care. This article contributes to understandings of encounters as an analytical concept and demonstrates the importance of a disability perspective in understanding urban care. Focusing on the Singapore context, this article contributes to the research agenda for a ‘more global urban studies’ where there is an impetus for urban theorisations to come from a greater diversity of sources beyond simply inheriting theories from the West (Teo et al., 2024: 420).

With global population densities projected to increase alongside urbanisation trends (World Bank Group, 2023; World Economic Forum, 2022), the case of Singapore can provide critical insights on how autism is encountered in high frequency and close proximity within densely-populated urban settings. While it ranks as the third-most densely-populated country globally (World Bank Group, n.d.), the city-state remains an under-studied context in our understandings of encounters and disability. With the inevitability of encounters between social groups within urban space, a deeper examination of encounters in Singapore can provide critical insights to inform our understanding of how we care in everyday urban life.

As a democracy with ‘“Asian” values’ (Han, 2007), Singapore’s approach towards care for persons with disabilities emphasises individual and family self-reliance (Choon, 2010; Zhuang, 2016). In this context, care is relegated to the private responsibility of caregivers (typically family members), neglecting the role of the urban citizenry. Yet, government narratives present care as a national priority, exemplified by the ‘SG Cares’ movement launched in 2016 to promote goodwill amongst Singaporeans, envisioning a ‘caring and inclusive home for all’ (SG Cares, n.d.). The national aspiration of a caring society extends to the state’s disability inclusion agenda, exemplified in its third Enabling Masterplan, ‘Caring Nation, Inclusive Society’ (Ministry of Community Development, Youth and Sports, 2016).

To understand how this policy narrative of care plays out in everyday urban life, this paper begins by conceptualising non/encounters as a mode of urban care and situating this research within existing literature on encounters. To demonstrate the role of urban citizens in shaping everyday urban care, I utilise a disability perspective to explicate the intangible structures shaping non/encounters. Thereafter, I explain the research methods while highlighting the role of researchers in contributing to care through the research process. Finally, I illustrate the ways in which urban care (or lack thereof) is experienced by caregivers’ recounting of inclusionary and exclusionary encounters, as well as non-encounters, with the latter being caregivers’ preferred mode of urban care. In so doing, this paper demonstrates the importance of recognising the role of everyday urban citizens in caring for persons with disability.

Non/encounters as urban care

Proponents of a feminist ethics of care view care as embedded in all social relations, where care is ‘society’s work’ (Lawson, 2007: 5). Tronto (2013) envisions a ‘caring democracy’ as an ethical ideal, where all citizens are relationally engaged in assuming care responsibilities and receiving care. In reality, the marginalisation of care to the private sphere results in a ‘privileged irresponsibility’ where privileged individuals are able to choose not to care about the needs of others (Tronto, 1993: 120). By extending care beyond the private realm, we expand the possibilities on how and with whom care responsibilities can be distributed.

In the urban context, ‘care-full cities’ can be created through everyday spaces and practices done not just by individual caregivers, but by wider community (Power and Williams, 2020; Williams, 2020: 3). In questioning ‘who cares’ for persons with disability in the city, this article focuses on non/encounters as one way in which care responsibilities can be shared by urban citizens. In using the term ‘non/encounters’, I emphasise the role of both encounters and non-encounters in constituting urban care, where the latter has been under-explored. While encounters refer to interactions between different social groups co-present in the same space, non-encounters encompass the relative lack of social engagement between co-users of spaces who consciously act to maintain social distance as strangers (Blonk, 2021). The stylistic choice in ‘non/encounters’ challenges conceptions of encounters and non-encounters as distinct categories of analysis. Non/encounters thus refer to a full spectrum of co-presence within urban space, encompassing a wide range of social engagements. These include, but are not limited to, meaningful interactions, fleeting acknowledgements, avoidance and exclusion. Over time, the accumulation of non/encounters shape possibilities and expectations of future non/encounters, emphasising the temporal and relational nature of non/encounters. Attending to the ways in which non/encounters provide opportunities for inclusion and exclusion of persons with disability and their caregivers, this article builds upon existing recognition of the role of encounters in providing opportunities for the ‘differences and boundaries of inclusion and exclusion [to be] negotiated between individuals, contested or reaffirmed’ (Wiesel et al., 2013: 2391).

Disability scholars have explored the role of urban encounters in the social construction of difference and inclusion, but also as a mode of urban care (Blonk et al., 2022). Encounters are shaped by rules that establish a boundary within interactions, and these implicit social rules tend to be difficult for persons with autism and intellectual disabilities to follow (Bredewold et al., 2016; Cockain, 2018). Wiesel et al. (2013) illustrate diverse forms of encounters that occur between urbanites with and without intellectual disability in Melbourne, which can be exclusionary, transactional, unfulfilled and fleeting. Of particular relevance to this study are exclusionary and fleeting encounters.

Exclusionary or ‘ableist encounters’ shape and reinforce existing spatial exclusion through verbal and non-verbal forms of communication that signal persons with disability as ‘out of place’ (Johnson, 2020: 543; Kitchin, 1998). Conversely, fleeting exchanges that involve superficial interactions may seem insignificant, but the cumulation of these encounters serve as public acknowledgement of an individual’s membership to society (Wiesel et al., 2013). When repeated over time, these fleeting encounters allow persons with and without disability to ‘[become] known’ to each other as less of a stranger, but as regular co-users of the same spaces (Bigby and Wiesel, 2019: 43), which are crucial for the social recognition of persons with disability (Bredewold et al., 2020). To have ‘transformative potential’, Wiesel et al. (2013: 2391, 2401) highlight how encounters need to be ‘convivial’ in order to facilitate the inclusion of persons with disability, where strangers engage in a common activity. These diverse forms of encounters elucidate how encounters sustain and create difference, but also entail a ‘disruptive capacity’ that opens up opportunities for change (Johnson, 2020; Wilson and Darling, 2016: 9). Analysing encounters and their political potential (McFarlane, 2016) thus provides ways of understanding experiences and possibilities of urban care.

On the other hand, less attention has been paid to the role of non-encounters in urban care. While Bigby and Wiesel (2019) conceptualise non-encounters as the simple absence of any interaction, Blonk (2021: 7) positions non-encounters as a ‘grey zone’ between convivial encounters and a lack of social interactions. While there is potential for encounters to take place between physically proximate strangers, they do not actually occur as strangers actively deliberate their actions and choose to use subtle cues to signal their intention to avoid encounters with the aim of maintaining social distance (Blonk, 2021). This builds on Goffman’s work on ‘civil inattention’ – ‘a display of disinterestedness without disregard … a competence to refuse relations without creating non-persons’ (Hirschauer, 2005: 41). To understand non-encounters as a mode of urban care, this article adopts Blonk’s (2021: 7) theorisation of non-encounters as forms of ‘micro-recognition’ that affirms existing relations of strangership. An alternative conceptualisation foregrounds the disappearance of sociability in what was previously experienced as convivial encounters, ascribing non-encounters with a lack of care (Straughan and Bissell, 2022). This perspective highlights the temporal dimension of non/encounters, where past encounters influence one’s experiences of new non/encounters, as I elaborate in the next section. Little is known about how non-encounters can be experienced as a possible form of care, especially in the context of disability. Thus, this article examines the role of both encounters and non-encounters as valued forms of care to provide a more holistic understanding of how disability is experienced and cared for in urban society.

While existing studies (Bigby and Wiesel, 2019; Blonk, 2021; Blonk et al., 2022; Bredewold, 2021; Straughan and Bissell, 2022) have proved the usefulness of non/encounters in understanding disability and care in Western contexts, little is known about its relevance in Asian contexts including Singapore. Thus, this work builds on existing work on the Chinese, Taiwan and Hong Kong contexts that highlight how family-centric and reputation-sensitive cultures lead to increased care burden and emotional labour for families (Chou et al., 2007; Cockain, 2023a; Wang et al., 2011a) alongside the existing disconnect between persons with and without disability within encounters (Cockain, 2021a, 2023b).

Disabling intangible structures shaping non/encounters

Informed by Gleeson’s (1999) conceptualisation of disability as socio-spatially constructed, paying attention to what shapes non/encounters can reveal underlying structural inequalities in urban space (Wilson and Darling, 2016). Non/encounters with disability are not only shaped by material structures (e.g., urban design, physical accessibility), but also intangible structures (e.g., social norms, policies, memories). For example, Schweik (2009) critiques the 19th-century ‘Ugly Laws’ in American cities, highlighting the role of policy in penalising and preventing public encounters with disability, while Feldman et al. (2020) raise the importance of social relations in making persons with disability feel stigmatised within encounters. Policies and social norms thus function to govern ways of behaving and interacting within urban space in both explicit and implicit ways.

Yet, non/encounters do not simply occur spontaneously but rather entail individuals’ active negotiation of structural constraints. For example, to manage experiences of stigma within a context of ableist social norms, persons with disability may engage in ‘passing’ – the complex psychological and performative work by individuals to conceal, exaggerate, or impose markers of disability identity (Brune and Wilson, 2013; Cox, 2013). The act of ‘masking’ has also been used by persons with autism as a method of ‘social camouflaging’, hiding their autistic traits to present as neurotypical and avoid discrimination (Chapman et al., 2022: 2). Similarly, caregivers facilitate experiences of inclusion and exclusion as they negotiate between social expectations and their child’s autistic behaviour, needing to manage stigma that both they and their children experience as a result of their close relationship and proximity (Choo, 2023; Koro-Ljungberg and Bussing, 2009; Power, 2008). Consequently, caregivers may choose to actively obscure their child’s autistic symptoms or if concealment seems difficult, pre-emptively announce their disability to manage the expectations of people they encounter (Cockain, 2018). Such responses demonstrate the ‘normalising power of … passers-by’ and space in governing the behaviour of persons with disability and their caregivers, which often aims to make encounters more comfortable for the non-disabled (Cockain, 2021b: 634). Adopting a disability perspective to understand non/encounters thus reveals the intricate ways in which urbanites shape their relationship with urban space and their co-users of these spaces, where non/encounters are shaped by intangible structures and individuals’ active negotiations of these constraints.

Non-material constraints also operate on a personal level in the form of memories, affect and habits, which inform expectations on future non/encounters. Attending to these intangible structures provides due recognition of the temporal dimension of non/encounters. For persons without disability, their pre-conceived notions of disability both shape and are challenged by encounters with persons with disability (Cockain, 2023b). For persons with disability in deinstitutionalised settings who have longed for social encounters outside of institutions, non-encounters may be regarded as affirmations of stigma towards them (Bredewold et al., 2020). On the other hand, the disappearance of convivial encounters for delivery workers during the COVID-19 pandemic is associated with lower levels of well-being due to loss of social interactions (Straughan and Bissell, 2022). Yet, as this article will show, persons with disability and their caregivers who have a wealth of past experience with exclusionary encounters regard non-encounters as forms of ‘micro-recognition’ from strangers, as they are acknowledged and respected as fellow users of public space (Blonk, 2021: 10). These examples demonstrate how non/encounters are also about encountering what was previously there but is now absent, and vice versa (McFarlane, 2016). Non/encounters are thus not distinct events (Cockain, 2021b), but necessitate going beyond the immediate moment to reveal their spatially and temporally relational nature (McFarlane, 2016), where non-encounters can also be experienced as a form of urban care. Hence, understanding the intangible constraints on non/encounters provides a more holistic picture of urban care needs.

Methods

This article is part of a wider study that seeks to understand the landscape of care for autism in Singapore. The findings draw from a thematic analysis of integrated narrative and place-based data from interviews and ‘go-along’ ethnographic observations (henceforth ‘go-alongs’) (Kusenbach, 2003). Go-alongs are ideal for studying encounters as they reveal the spatial practices, perceptions, biographies and relations within the environment, overcoming the static limits of interviewing (Kusenbach, 2003). This has been useful for understanding the unique spatial experiences of disability (Cockain, 2018, 2021b; Feldman et al., 2020; Thorneycroft, 2020; Vanolo, 2023). Eighteen participants were recruited using snowball sampling from attending autism community events and personal volunteering networks, all of whom happened to be mothers of children with autism aged between five and 23, reflecting the gendered nature of caregiving where fathers are under-represented as primary caregivers (Williams and Crooks, 2008). Ethics approval was granted by National University of Singapore’s Department of Geography as part of a study conducted between 2016 and 2017. All participants provided informed consent and completed an interview, and 13 also participated in go-alongs. While their children were also present during go-alongs, caregivers were the focus of this study and consented on their behalf as their guardian.

To provide a cohesive narrative within space constraints, this publication features quotes from three caregivers, Carol, Corrinne and WeiPing, ² to best represent shared themes that have emerged across all participants, and to reflect a diversity of caregiving experiences across the autism spectrum, children’s ages, availability of caregiving support and additional caregiving demands (e.g., caring for other children). They completed both an interview and go-along. Additional explicit consent was sought from the three participants in the drafting of this article, and they confirmed the continued and pertinent relevance of the data, reflecting scholars’ observations that disability inclusion in Singapore has yet to be achieved (Zhuang et al., 2023, 2024, 2025; Zhuang, forthcoming). They were also given the opportunity to review the paper and request for any corrections, which was taken up to different degrees due to their limited capacity. This review process was impractical to complete with every participant due to limited resources and to avoid imposing an ‘epistemic burden’ on voluntary participants (Pierre et al., 2021: 2) who were already inundated with caregiving responsibilities.

While the autism terminologies used in this article may seem outdated for some, person-first language was preferred by most participants. Caregivers also actively used labels such as functioning and severity levels to describe and differentiate their caregiving experiences. These preferences can be attributed to caregivers’ awareness of stigma towards autism in Singapore, and their recognition of the use of these medicalised terminologies in public discourse (Johnson, 2020). As Carol explains, in Singapore, ‘autistic person’ can mean ‘crazy’ or ‘stupid.’

I was introduced to WeiPing via my personal volunteering network. She is a full-time caregiver for her non-verbal 21 year-old son whom she positions as ‘severe’ on the autism spectrum. Like WeiPing, Carol left her full-time job to dedicate herself to caregiving for her three sons aged 14, 13, and 9—her two oldest sons have ‘mild’ autism and communicate verbally. Meanwhile, I was referred to Corrinne by another participant. While balancing a full-time job, she is a caregiver of two children, including her 20 year-old non-verbal son whom she describes as ‘moderate’ on the spectrum. These aforementioned characteristics are shared by the other 15 participants in a variety of permutations, as reflected in their common experiences.

Research encounters

The research process provided multiple opportunities for encounters – from introductory calls, interviews, go-alongs, in-person and online communications to review publications, to casual meet-ups. Caregivers’ expectations of research encounters were shaped by the extended temporalities of past encounters with ‘drive-by research’ (Carpiano, 2009: 267), where researchers were only interested to collect findings without contributing back to the community, prompting initial hesitance amongst some participants. As WeiPing explains, ‘caregivers already have so much on their plate, the last thing they want to do is to help a student get a good grade.’

Recognising the temporal relationalities of encounters, I communicated my genuine intention to contribute to the community and shared my past and ongoing encounters with autism as a volunteer, enabling me to eventually be regarded as a ‘friend of autism’ (WeiPing, interview). This helped to cultivate an openness toward new research encounters, mediating between expectations from past encounters and possibilities for future encounters. Some caregivers remarked that our encounters were a rare opportunity for them and their children to interact with someone ‘neurotypical,’ and were grateful to have research being done on their lived experiences. Here, I delve into our encounters during interviews, go-alongs and during the publishing of the op-ed to illustrate how research encounters can constitute possible forms of urban care.

In-depth interviews were conducted in a ‘therapeutic’ manner, where ‘simply telling your story to someone who is truly interested,’ can be beneficial for respondents and the researcher, especially when researching with vulnerable populations (Murray, 2003: 233). For caregivers, these encounters served as a rare occasion where their stories were being heard, with interviews lasting up to four hours. As Carol explains, ‘caregivers need to be affirmed of our efforts, either big or small’, expressing caregivers’ need for care too. This reinforces the need to attend to caregivers’ narratives, where listening to their perspectives can constitute acts of care from researchers. Interview and go-along locations chosen by participants were part of their routines, providing useful insights on the restrictive nature of their daily geographies due to their child’s need for repetitive and rigid routines (Wiles, 2003). Interviews were conducted at home, at workplaces during lunch hours, or eateries near schools. Go-along locations include playgrounds, shopping malls, supermarkets, hawker centres, libraries, public transportation, community or sports centres where their children had classes.

While most interviews were conducted one-to-one, some caregivers were unable to find time and space away from their child. Interviews accommodated distractions whenever their child required attention, and sometimes had to be conducted on the move to avoid disrupting rigid caregiving routines. While the need to multi-task may lead to less-focused responses, the flexible mode of interviewing allowed us to prioritise caring for their children and avoid triggering any stressful situations such as a meltdown, which could occur when caregiving routines are disrupted. As a way of facilitating accessibility in caregivers’ research participation (Castrodale, 2018), participants were able to co-shape their participation, with research activities incorporated within daily caregiving routines rather than vice versa. By listening and providing space for caregiving to continue during our encounters, my work as a researcher also entailed acts of care for my participants and their children, exemplifying the relevance of research encounters in our understanding of care.

Go-alongs provided first-hand insights into caregivers’ urban non/encounters as I tagged along on an activity with their child in their daily routines. Through casual conversations in situ, I was able to access a deeper understanding of caregivers’ lived experiences, and their interpretations and practices within the environment as they recounted memorable incidents that had happened before (Carpiano, 2009; Castrodale, 2018: 48). While questions were prepared, I provided room to explore new questions (Porkertová et al., 2024). In accessing everyday spaces with caregivers and their children, I experienced stigmatising stares, gaining first-hand insights to the ableist expectations embedded within spaces of non/encounter, and the strategies caregivers enact in response (Cockain, 2018; Thorneycroft, 2020). The ethnographic element of go-alongs complement interviews by providing access to the unsaid and intangible, including spatially-embedded ‘taken-for-granted attitudes’ that have become natural for caregivers (Cockain, 2018: 714). As both a participant and observer, I occasionally found myself taking part in caregiving during these non/encounters especially when participants’ needed assistance, at times linking arms with participants’ children to guide them in navigating public spaces and facilitating non-encounters with passers-by as we avoided bumping into strangers (Figure 1). These research encounters required trust-building, reciprocity and cooperation between caregivers, their children and myself (Castrodale, 2018), demonstrating the relational nature of care (Lawson, 2007).

Figure 1.

Linking arms with a caregiver’s child during a go-along at a train station (author’s own image).

As a form of ‘convivial encounter’, go-alongs played a significant role in bringing strangers together for a common purpose and activity, providing the opportunity for my participants and I to explore shared identifications alongside transient and potentially longer-term relationships, which are key to social inclusion (Fincher and Iveson, 2008; Wiesel et al., 2013: 2401). Indeed, my relationships with a handful of participants have gradually evolved from participant-researcher relationships to personal friendships over time.

As opportunities to understand caregivers’ lived experiences, these research encounters were forms of ‘meaningful contact’ that shaped my understanding of autism and caregiving (Valentine and Sadgrove, 2014: 1992). Sharing my insights in an op-ed published on a local digital media platform (Choo, 2018), I extended the opportunity to members of the public to access and respond to caregivers’ stories. Hence, my research serves as a bridge in creating indirect encounters between caregivers and the wider community, opening up opportunities for new forms of urban care to occur, including in digital spaces. In recognising research as a mode of encounter, we can expand our understanding of the diverse ways in which urban care takes place. In the following sections, I illustrate experiences and/or absences of urban care through specific forms of non/encounters, including inclusionary and exclusionary encounters, as well as non-encounters.

Findings

Inclusionary and exclusionary urban encounters

As spaces supposedly ‘accessible to the widest range of mind-bodies’ (Freund, 2001: 703), public spaces provide opportunities for caregivers and their child to interact with wider community and spatially-embedded social norms. Caregivers describe their encounters as judgemental, stressful, and at times, encouraging, within which they respond with both reactive and pre-emptive tactics (Cockain, 2023a). As their children were unable to speak up for themselves, caregivers took on the additional responsibility of advocating and supporting their child’s autistic needs (Johnson, 2020).

The pressure of ableist norms is most strongly felt by mothers when their child experiences a meltdown in public. For WeiPing whose son had the tendency to hurt people during meltdowns, ensuring the safety of all present was paramount, which left her with little capacity to pay attention to her surroundings, as she explains:

because our episodes are quite drama[tic] … my immediate response has always been to make sure that he doesn’t hurt anybody else, doesn’t hurt himself … doesn’t hurt me too badly … So I’m always focusing on the issue, that by the time he calms down, when I look around, eh? It’s like nothing happened. But I’m pretty sure when it happened … there [was] a crowd somewhere looking.

With the fear of judgemental eyes, WeiPing was constantly worried of being called out for their son’s non-conforming behaviour and appearing on local news platforms. This highlights the emotional stress that familial caregivers experience in managing public perceptions of their child’s disability (Wang et al., 2011b).

Similarly, Carol describes how her son plays differently at playgrounds which is ‘stressful’ because of ‘the public eye’, where they are subjected to stares and rude remarks. On the receiving end of criticisms for parenting (Koro-Ljungberg and Bussing, 2009), Carol is told by strangers to correct her son’s autistic behaviour, and their family was requested to leave the space (Cockain, 2023a) for being ‘very violent’. For Carol, such exclusionary encounters ‘[are]n’t pleasant and … spoil the whole outing’. Likewise, WeiPing’s son has also been criticised as ‘shenjingbing (crazy)’ by strangers. These unpleasant interactions emphasise the role of encounters in reaffirming differences and establishing boundaries of spatial exclusion (Wiesel et al., 2013), where feelings of fear become associated with spaces of encounter (Burch, 2021).

With the eroding distinction between urban public and private spaces (Nissen, 2008), encounters with members of the public can continue to take place even in the space of the home which is typically regarded as private. This can be attributed to the high population density of urban living where encounters happen often and in close proximity to others. The frequency of encounters happening within residential settings are particularly pertinent in Singapore, where majority of Singaporeans reside in high-rise public apartments, sharing community living spaces within estates with high living densities. This includes Carol, who describes her residential life as ‘stepping on eggshells’:

My neighbours are below, hearing their voices, running around, pom pom pom - they also get frustrated. And when [my children meltdown], they start to kick, stomp on the floor, it is very stressful for me because I have to be accountable to my neighbours … I am scared of being criticised and complained about, as I feel like we are intruding into their space.

In retaliation, Carol’s neighbours use sticks to hit the ceiling. With such tense encounters occurring even within the space of the home, caregivers cautiously monitor their children’s movement and noise to mediate between the needs of their children and neighbours (Wiles, 2003). As encounters within the urban environment occur at high intensity and frequency, caregivers are consistently wary of how people around them might feel about their child’s autistic behaviour across public and private spaces. While caregivers in geographically larger countries have the option of retreating to more rural locations to avoid stressful encounters (Vanolo, 2023), this was not possible in the densely-populated city-state of Singapore.

Due to these past experiences of judgemental encounters, caregivers associate these spaces of encounter with stress and the potential for drama, prompting them to adopt a ‘calculated approach’ in navigating them (Burch, 2021: 86). One way in which caregivers actively mediate exclusionary encounters is by establishing a physical distance between their child and fellow users of the space. Hyper-vigilant of potential encounters with strangers, Corrinne’s awareness of her son’s tendency to throw sand at the playground prompts her to establish a boundary between her son and fellow users of the playground. She describes:

sometimes he throw[s] sand, it will upset people. So before he even throw[s] sand, I will tell people please stay away from him. I don’t mind that he doesn’t have chance to socialise with others, I just want to make sure that people are safe and he is safe.

Recognising that their children’s behaviour tends to be misunderstood by strangers, caregivers play a key role in mediating judgemental encounters that occur within public spaces. Time of access is a key strategy employed by caregivers to reduce the risk of encounters within the city’s high population density, choosing to access urban public spaces at less crowded timings (Choo, 2023). For Corrinne, this meant going to the playground at the hottest time of the day in the afternoon, when other families tend to avoid being out. As a bridge negotiating between differences in autistic and neurotypical ways of using space, caregivers are prompted by past negative encounters to adopt pre-emptive strategies to prevent reoccurrences, at times choosing to facilitate experiences of non-encounters by creating the very boundaries of exclusion between themselves, their child and the public. Non-encounters are thus informed and shaped by ‘anticipatory logics’ developed from past encounters (Wilson and Darling, 2016: 6), reiterating how non/encounters have intangible structures and extended temporalities (Straughan and Bissell, 2022). Paying attention to the care work that occurs during and as a consequence of stress-inducing encounters elucidates the exclusionary nature of urban spaces where care is absent.

Acknowledging the extended temporalities of encounters also allows us to recognise the impact of repeated encounters, which were experienced as positive encounters of care. When encounters recurred with the same people, certain members of the public may become less of a stranger, such as ‘coffee shop uncle’ who has seen WeiPing and her son in their neighbourhood coffee shop weekly as part of their routine. As WeiPing recounts her son’s meltdown:

we had soup noodles on the table … I was afraid that he would flip the table[…] so I had to grab him, because … he will try and scratch me. So you grab his hands. If he can’t use his hands, his legs will come up and try to kick you … his crying is very loud … after the whole incident, he calmed down after quite a while, and coffee shop uncle came, and then he (pats shoulder) … we are not close but he has seen us every weekend.

As her son appeared visibly different to strangers with his stims, ³ WeiPing described ‘heart-warming’ experiences when he was offered food from supermarket workers and food sellers:

some uncles or aunties … don’t know what autism is, but they know that there’s something wrong with him and are very kind to him [and] will jialiao (add toppings) because of him … for free!

These acts of care between WeiPing, her son and familiar strangers demonstrate the possibility of understanding and rapport that can be built over repeated encounters. These accumulated ‘moments of everyday recognition’ constitute a process of ‘becoming known’ (Bigby and Wiesel, 2019: 42–43), functioning as acts of caring solidarity.

However, such positive encounters are rare, as Corrinne describes the public’s usual responses to her son’s meltdowns in public:

they will stay away or look, ‘why [is he] like that?’ Very rarely, once [in] maybe six months there will be somebody who will ask, ‘can I help you?’ Which is okay because when he’s having a meltdown no one can help.

While offers of assistance are appreciated, caregivers recognise that it is difficult for strangers to help effectively when their child is experiencing a meltdown. Hence, such encounters remain as fleeting exchanges or ‘moments of everyday recognition’, where strangers demonstrate their acknowledgement towards autistic ways of using urban space (Bigby and Wiesel, 2019: 42). Importantly, these positive encounters evidence the potential for encounters to cultivate the acceptance of differences, highlighting the need to examine ways of facilitating positive encounters in cities.

Non-encounters as urban care

Influenced by past negative encounters, caregivers actively pursue and hope for non-encounters. Here, non-encounters are perceived to support individual caregiving practices within urban spaces and are regarded as a form of urban care which caregivers hope to receive from co-users of these spaces. To facilitate non-encounters, caregivers demonstrate spatial competence in navigating urban space to carve out ‘micro-landscapes of care’ (Choo, 2023; Golledge, 1993; Milligan and Wiles, 2010: 739). For example, caregivers map out ‘safe places and comfort zones’ (Power, 2008: 840) such as corners of shopping malls, toilet cubicles, the last row seats of cinemas by the exits and off-peak hours to facilitate non-encounters as their child’s behaviour would be perceived as less intrusive within these time-spaces. Additionally, caregivers physically restrict their child’s use of space to facilitate non-encounters in public spaces, as illustrated in Figure 2 below, where Corrinne’s family position themselves in front and beside of their son to guide and limit his direction of movements, preventing his interactions with strangers at the public library. This exemplifies how both encounters and non-encounters consist of caregivers’ active negotiation and mediation between expectations informed by their perceived social norms and their child’s autistic tendencies, allowing them to avoid emotionally charged social interactions where possible (Koro-Ljungberg and Bussing, 2009). In carving out micro-spaces for norms and difference to co-exist within urban space, caregivers effectively care for both their child and urban strangers through non-encounters.

Figure 2.

Caregivers in front of and beside the child in their care to ensure they do not disturb others in the public library (author’s own image).

As negative feelings from past encounters actively shape caregivers’ expectations and hopes for future encounters (Wilson and Darling, 2016), caregivers did not express hope for more positive encounters, but instead a preference for non-encounters, where strangers ‘learn how to walk away with an empathetic heart, instead of staring with a judgmental look’ (Carol). Non-encounters are perceived to enable caregivers and their children to avoid being subjected to stigmatising attitudes from urban strangers, constituting an act of urban care that caregivers hope to receive. A common desire amongst caregivers is to facilitate non-encounters through the design of autism-specific spaces to limit their encounters with the public, which remain rare in Singapore. This could be done in the form of autism-friendly hours of access or autism-friendly spaces, which Kenna (2023: 379) considers as a ‘visible’ form of ‘executive planning of dedicated time-spaces for neurodiversity’ or the creation of ‘inclusionary bubbles’ (Cockain, 2023a: 1920). Carol explains:

Cinemas, indoor play … should have a slot for special needs kids, everybody make[s] noise [and] it’s okay … we don’t have to feel stressed … So that all normal kids that go, it’s at their own risk … so parents won’t feel that we are outcast, we won’t feel that our kids are alien.

Carol’s hope for non-encounters reflects a wish to escape from a socio-cultural context of oppressive judgements towards autistic behaviours, where families share experiences of stigma (Chou et al., 2007; Choo, 2023). Similarly, Corrinne envisions an autism-friendly space, describing:

I’m dreaming maybe. It would be lovely to go to restaurant, with a corner that say[s], ‘for special needs families’ … So patrons know that this corner is crazy. They may be screaming. But it’s actually quite normal, because they’re in that special corner … And it feels very safe to be there.

By having public spaces that are designated for autism, caregivers envision a space where they can be free from judgemental encounters, allowing them to feel accepted and safe. This reflects how societal attitudes actively shape experiences of encounters, but also a desire for non-encounters. The use of an ‘autism’ label is thus seen as helpful in managing expectations from the public and facilitating non-encounters, where strangers’ decision not to engage can be regarded as an act of respect for differences (Blonk et al., 2022). Such forms of civil inattention express respect and consideration towards a ‘normality of doing things differently’ (Hansen and Philo, 2007) and highlight the role that non-disabled allies can play in caring for disability (Ostrove et al., 2019) through non-encounters. Paying attention to the intangible structures shaping non/encounters reveal the interconnections between encounters and non-encounters, where regarding them as distinct categories of analysis would provide only a limited understanding of urban sociality.

Conclusion: Towards a ‘caring and inclusive home for all’

Using the case of caregiving for persons with autism in urban Singapore where care is framed as a national value, this article has illustrated the diverse forms of non/encounters which are experienced as urban care, contributing to the dearth of literature on encounters and autism in Singapore and non-Western contexts. Moreover, the findings highlight the importance of a disability perspective in shaping our understanding of urban care. Bringing a disability perspective to urban studies, this article has explored the relationship between disability and the city – by examining how we care for persons with disability, we obtain critical insights for understandings of urban care. As Zhuang et al. (2023: 33) posit, ‘disability is the space from which to think through a host of political, theoretical and practical issues that are relevant to all’. In other words, we cannot be a caring society without caring for disability.

By paying due attention to caregivers’ voices, this article has demonstrated the conceptual relevance and diversity of non/encounters, including research encounters, inclusionary and exclusionary encounters, as well as non-encounters – all of which are highly interconnected. In their experiences of non/encounters, caregivers emphasise feelings of alienation and stress as they encounter the wider community, expressing shared hopes for an urban space where they can feel safe and a sense of belonging through positive encounters and non-encounters. In analysing these three forms of non/encounters, this article expands the temporalities of non/encounters to explicate the intangible structures that shape them, demonstrating the importance of studying non/encounters beyond the immediate moment. In so doing, we understand the critical role that ableist socio-spatial norms and spatially-embedded memories play in shaping geographies of non/encounters, and the critical role that non/encounters play in the production of disability and care within urban spaces. By paying attention to the intangible aspects of non/encounters with autism in Singapore, this article contributes to our understanding of urban care while examining how the policy narrative of a ‘caring city’ plays out in the urban everyday.

So how can cities care better? From the narratives represented above, it is clear that the everyday citizen can play a key role in building inclusion and exclusion within non/encounters. By recognising non/encounters as everyday acts of urban care, I expand the possibilities on how and with whom care responsibilities can be distributed, where the urban citizenry can all play a role in caring for disability. By re-thinking how we encounter disability, we can work towards the creation of urban spaces that encompass disability not as a difference to be ‘corrected’ but simply part of our spectrum of human experiences (Chouinard, 1999: 155). By reducing caregivers’ experiences of exclusionary encounters, individuals can actively shape intangible elements of non/encounters, thereby challenging ableist structures that limit urban care. Collectively, we have a shared responsibility to care for disability, as Carol summarises:

society just has to accept that there are such people around, learn to be harmonious and not to ostracise when you see that they are a bit off … and to give caregivers the kind of look, ‘hey, how come your kid is behaving this way?’

As researchers, we are not exempt. We can begin by first reflecting on our own research encounters and exploring ways of using research to create opportunities for inclusive non/encounters to occur as we care for our fellow urban citizens.