My research explored mothers’ experiences in relation to having a child with autism excluded from school using unstructured narrative interviews and analysis informed by the
LG (Brown & Gillligan, 1993). In this discussion, I draw upon this analysis to answer my research questions:
1
What characterises the stories told by mothers of children with autism who have experienced school exclusion?2
How might these stories further our understanding of the exclusion of children with autism from school?My understanding of these narratives has been shaped by my continued immersion in – and reflections on – the stories told, my knowledge and experience to this point, plus my reading of research literature. I am aware this is my telling of their story and, consequently, there are other ways that this could have been told.I acknowledge other researchers may offer alternative understandings and that my representation is but one way of viewing the stories and their potential for contributing to our understanding of the exclusion of children with autism from school.
I aim to re-story in an attempt to counter the dominant narratives around exclusion in which the child is blamed because their “behaviour violates the school’s behaviour policy” (DfE, 2017 p.57). Instead, I position these stories to view behaviour as a “response for protection and survival” (Johnstone et.al., 2018, p.19). When considering the stories this way, what is described by each of the mothers in the study is a distressing and possibly traumatic event or traumatic series of events. When re-storied, a different possibility for understanding school relationships and exclusion emerges.
Trauma
I acknowledge that the concept of trauma is complex and contested and that tensions exist regarding how the term is understood. The Oxford English Dictionary definition of trauma is something that is distressing or emotionally disturbing. Within psychology, trauma has traditionally been “viewed mostly from a ‘pathologising’ standpoint [leading to] almost always positioning the problem within the person” (Segalo, 2015, p.447). Equally, “medical and psychiatric studies have pathologized trauma through discourses of hysteria and post- traumatic stress disorder and focussed on the abnormality of trauma” (Zembylas, 2007, p.210). Such definitions and labels are, rightly, challenged and resisted as “constructing people, categories and subsuming individuals into a category makes people forget that
human being comprise it” (Zembylas, 2007, p.214). Indeed, such categories and definitions serve to reify the notion of “the ‘normal’, emotionally competent individual” (Brassett, 2010, p.24) thereby serving to “other” and further marginalise individuals that do not meet this norm.
A pathologising medical concept of trauma is equally contested because it both negates and reduces the complexity of the situation and also fails to consider the political, economic and socio-historical contexts in which the individual is located (Wessells, 2008). The DSM criteria on trauma serve to isolate the person from their socio-political context and reduce the phenomenon to an individual experience (Sonpar, 2008). Some academics have instead argued for a socio-political understanding of trauma, one which shifts the focus away from the individualising, pathologizing, othering account of trauma to a construct that exists “relationally within particular historical conditions [and an understanding that] emotions are produced within power relations” (Zembylas, 2007, p.212).
As with the concept of trauma itself, there is equally no single accepted definition of a traumatic event. The Mental Health Foundation (2020) defines such events as experiences that constitute the risk of serious harm or death to a person or someone close to them, whereas The National Institute for Mental Health (2020) defines a traumatic event as “a shocking, scary, or dangerous experience that can affect someone emotionally and physically”. Other researchers have argued that what is important is not the form of the event but whether it is perceived as shocking by the person witnessing or experiencing it; in which case, a traumatic event is considered to be one that creates symptoms of traumatic stress (Breslau & Davis, 1987; Solomon & Canino, 1990). Signs of a stress response can be physical, cognitive or emotional and include rapid heartbeat, confusion, difficulty
concentrating, fear, anger, feeling numb, sadness, and feeling isolated (Department of Health).
There has, however, been a recent move within trauma studies away from a “Eurocentric trauma paradigm” (Andermahr, 2015, p.1). Craps (2013) argues that trauma as is it largely recognised within Western cultures – as resulting from a single catastrophic event outside normal experience – serves to marginalise broader traumatic experiences of minority cultures. In his work around racial trauma, Craps (2013) argues that racism does not fit the classic idea of trauma in that it is not related to a particular event; nevertheless, the experience is potentially traumatising.
Scholars, then, have begun to conceptualize trauma differently, thereby allowing oppressive experiences that do not meet the diagnostic criteria to be considered as traumatic events (Szymanski & Balsam 2011). “Insidious trauma” (Root, 1992) relates to the consistent negative experiences that come from being part of an oppressed group. When considered in light of this definition, I believe the experiences relayed in the stories in this study could be interpreted as potentially traumatic events.
I reflect on the stories in this way both to highlight the circumstances in which the mothers in my study find themselves and to attend to the events that are distressing. I consider these events as traumatic and do so to heighten the importance of them. It is my intention that “by narrating experiences in terms of trauma we can (albeit problematically) open a window upon the inequalities and injustices of conflict” (Brassett, 2010, p.22). I hope that my narration of trauma can allow for “discourses which have productive rather than constraining power over individuals and groups” (Zembylas, 2007, p.212).
In considering all three stories a number of features stood out for me. I was struck by the nature of the school environments that the mothers, children and, possibly, staff were occupying. There is no single resounding definition of school climate with researchers often using a variety of terms (Homana, Barber, & Torney-Purta, 2006). I utilise the definition provided by Cohen, McCabe, Michelli and Pickeral (2009):
school climate refers to the quality and character of school life … based on patterns of people’s experiences of school life and reflects norms, goals, values,
interpersonal relationships, teaching and learning practices and organizational structures (p.182).
Research indicates that a positive school environment enhances the social, emotional and mental well-being of young people as well as promoting learning and securing physical safety (Zullig, Koopman, Patton & Ubbes, 2010). When school environment is positive, people show regard for one another; relationships are nurtured and partnerships develop in which people feel safe and can contribute to a shared vision (Cohen et al., 2009). In contrast to this, each narrative in my study left me feeling these environments were not secure, nurturing or understanding. Rather, they were sites of power, surveillance and judgement for everyone involved and, so, could conceivably be viewed as sites of trauma.
Power and child-blame
For each of the mothers and their children – and potentially the staff – within this study, school is a place of power. Moreover, the climate is hostile at crucial crisis moments as well as over extended periods. Johnstone et al. (2018) hold that power is “mediated through bodily capacities, relationships, social structures, institutions, organisations and everyday interactions” (p.34). It is the negative operation of power that creates situations which are experienced as threatening to safety, survival or well-being. School is a place of legal power where there is a variety of rules seeking to control behaviour and responses and in which failure to comply appropriately has consequences (Johnstone et al., 2018). Equally, it is a place of ideological power where narratives are created and deployed to make sense of behaviour, of both mother and child, to position others, and to silence them (Johnstone et al., 2018). When individuals are silenced they cannot counter, they cannot express and they cannot influence. Exclusion, then, could perhaps be seen as the ultimate silencer.
The mothers’ accounts offer detail about the minutiae of everyday experiences
accumulating around their child and how these microevents are ableist. All three stories are characterised by child-blame. It is the children who are expected to change and conform within an ableist environment. The system positions them as “in need of intervention and cure” (Runswick-Cole and Goodley, 2018, p.5). There are multiple points in the stories in which their children are seemingly “square peg(s) in a round hole”. There are rules to which they must adhere. Rules about what they wear that pay no attention to the difficulties such clothing presents for individuals. Rules of social engagement that create anxiety. Rules and routines that change with minimal notice, where their TA can be sent elsewhere for seemingly no reason and a teacher can insist they move from a chair and then blame them when this creates distress. Here it is possible to see the concept of “misfit” being played out (Garland-Thompson, 2002). Robertson (2014) rightly asserts that the space around us has been created by, and for, those with “majority bodies… non-disabled bodies and minds. This creates a misfit at certain times and places for certain minority bodies and minds” (p.10). In the encounters described by my mothers there is “disjunction” and “misfit”, “the square peg” rejected by others. Garland-Thompson (2002) writes “to misfit into the public sphere is to be denied full citizenship” (p.601). Across all three accounts, this ableism is deployed within the exclusion process; children are blamed, problems projected onto them and they are excluded.
Schools can be viewed, then, as places of power which offer no understanding of the individual child at the heart of the process and which, instead, contribute to an experience that is distressing and potentially traumatic. The mothers recount stories of their children being overwhelmed in these environments and who react, possibly, as a result of these traumatic experiences . In turn, this leads to an event that could be considered as
overwhelming for all involved, child, mother, school staff. It is an event, seemingly, beyond the capacity of the school to cope. The outcome is exclusion, the aftermath, the
consequences of exclusion, also potentially dire.
Power and mother-blame
The mothers in my study are equally subject to this power in which relationships are neither mutual nor transparent. In many ways the experiences of Carol, Jenny and Heather mirror one another, for each reflect experiences of limited power in their interactions with professionals. Each travels a road from seeking support and collaboration with schools and the wider system to a position of despair, betrayal, lack of trust and a place that is a
battleground. This is in line with previous research in which relationships with professionals have been identified as stressful for mothers (Hodge, 2006, Ryan & Runswick-Cole, 2008b). Carol, Jenny and Heather initially have limited knowledge of the system which weakens their position. This is then exacerbated further by the lack of transparency within the system itself plus the difficulties of navigating it (Gazeley, 2012). All three mothers comment on this at varying points: Carol unaware that the exclusions were illegal, Jenny still “two years later, ignorant of the system”, Heather stating “I don’t know how the system works”. In such an environment the unequal power dynamic is evident. It appears that even the legal narrative, the legal structures that are designed to protect, are unable to constrain institutional power which engages in illegal practices. Relationships, therefore, cannot be considered separately from institutional power. Arguably, institutional power can be seen to shape relationships.
In each of the mothers’ stories there are examples of positive experiences and relationships with some professionals. However, such positive experiences are but rare moments in the telling and indicative of a system in which mothers have a reliance upon single individuals with their own situated perspective. These individuals seemingly make a difference until situations change, individuals move jobs, children move classes. They are, therefore, likely to be transient appearing but temporarily. Such provisional support is, possibly, a product of
and local government and, consequently, changing policies and practices within schools themselves. Therefore, any reliance on individuals within the system is ultimately precarious. This instability for both mother and child means it is difficult for them to feel secure because the situation can change without notice and is outside their control.
Generally, all three mothers highlight the problematic nature of relationships with school staff and other professionals, where the knowledge they have of their child is not valued (Hodge & Runswick-Cole, 2008). Rather than equal partners, they have limited agency or volition. Schools demand they come in; they are told, they are blamed. Carol tells of being “permanently pulled in”, of trying to advocate for her son and of her parenting being questioned. Heather identifies the problematic nature of meetings where school staff pay lip service to listening to her but, in reality, she has no impact on the decisions made. Jenny, equally, is “made to feel like some form of monster, inadequate parent”, called into school and told to take her child to the GP, the school here placing responsibility on Jenny to “search for solutions” (Blum, 2007, p.209).
However, this positioning of Jenny is problematic in a number of ways. The insistence that Jenny should acquiesce to a pathologizing construction of Alex brings further threat into relationships. By not taking Alex to the GP, is she then negligent? if she does concede to this demand, this invites further scrutiny and surveillance of the family, especially the mother, by both school and medical professionals. Whilst it has been argued that seeing behaviour as pathology can reduce mother-blame, shifting it “onto an uncontrollable, biological, condition” (Broomhead, 2013, p.15), pathologizing the child brings with it stigma that is attributed to both child and parent. Here “parents are also tainted by virtue of their parenting relationships” (Ryan & Runswick-Cole, 2008b, p200; Blum, 2007). As Malacrinda (2001) writes, where “the measure of a good mother is a perfect child… imperfections are often perceived as outcomes of bad mothering” (p.145).
It seems that all three mothers experience limited power in their interactions with professionals and, yet, experience others as holding them responsible (Broomhead, 2013, Runswick-Cole & Goodley, 2018). The relationship with school professionals is full of contradiction: potentially supportive, seemingly offering advice and guidance, and equally experienced as blaming and threatening. This is confusing, leading to anxiety and
The stories of the mothers in my study provide examples of what Rich (1996) describes as “powerless responsibility”, situations in which mothers must raise their child in accordance with the values and rules of the dominant culture – the patriarchy. With the “partnership” of two sites, school and home, the school colonises the home site through the advice it gives and exercises power through this partnership. Mothers are scrutinised, “watched” and judged by other parents and professionals alike. They are under the “gaze of
others…relinquish authority to others, [and] lose confidence in their own values” (Ruddick, 1989, p.111). Within a patriarchal society, mothering is controlled, subject to standards of normativity which consequently “results in the pathologizing of those women who do not or cannot perform normative motherhood” (O’Reilly, 2016 p.19). These mothers are
constructed and labelled as “bad mothers” who fail to raise children in conformity with the political system of neoliberalism (O’Reilly, 2016). For “bad mothers” the school climate is only ever hostile.
The positioning of mothers in this way may lead to feelings of self-blame and guilt (Blum, 2007; Carpenter & Austin 2007). The psychological impact of this positioning is reflected in Jenny’s narrative. Not only does she experience the blame of others, she also starts to consider whether she herself is responsible and sees herself as having “failed in four schools”. Jenny appears to be struggling with her sense of identity when she questions herself in this way. It is possible to view these experiences, described by all three mothers, as potentially traumatising as such positioning may create distress. There is also a
recognition that experiencing trauma can disrupt identity (Berman, 2016). This is also possibly reflected in Jenny’s self-doubt.
Mother-blame, and the corresponding internalisation of total responsibility, potentially has devastating consequences. Hanley (2006), in her study concerning mothers’ experiences of postnatal depression, argues that “lifestyles in the Western world may be putting too much pressure on some women, causing a form of stress that may have unremitting
consequences…[as] an intolerable burden of care [is placed] upon them” (p.154). Equally, research conducted with carers has indicated “that depressive symptoms are twice as common among caregivers than non-caregivers” and carers “experience more physical and mental distress than non-caregivers” (Shah, Wadoo & Latoo, 2010, p.2). Overwhelming responsibility, therefore, can be viewed as being damaging to one’s mental health. Relationships described in the narratives are potentially traumatising; events too are
Specific traumatic event(s) which are central to the mother’s narratives
Each of the stories is characterised by a school environment that contributes to a set of circumstances which ultimately culminate with a major distressing event prior to exclusion. The mothers each experience partnerships with education professionals as confusing, unsafe and negative and this might be understood as “insidious trauma” (Root, 1992). Within this context, all three accounts describe situations where the mothers are called into school and, upon arrival, find their child in an unrecognisable state. This event is distressing for both mother and child. It is possible to speculate that such events are common. Heather explains that Elizabeth was unable to recognise who she was and that she herself was so distressed by what she was facing that she needed to leave the room to calm down. Jenny struggles to understand what Alex is saying as he is “jabbering away” and distraught. Carol talks of it being “the first time I've ever seen that amount of aggression in his expressions. He was physically shaking”. These situations and events can be viewed as a “crisis point” (Parker et al., 2016) and are distressing and potentially traumatic for both mother and child.
Whilst these events are unfolding, the actions and responses by the school in each of the narratives are broadly similar. Staff confine children in rooms whilst they have “meltdowns”. In Carol’s story we see staff seemingly standing by watching. Jenny tells of staff peering through windows and photographing evidence – an example perhaps of disciplinary power (Foucault, 1972). All three situations end with the mother called to calm their child and then take them away, followed by exclusion, actions summarised by Carol when she repeats the words of the Executive Head: “you’d best take him home, we’ll have exclusion papers for you when you pick the others up”. In each case, their child is seen as the problem while school staff seemingly step back, abdicate responsibility and abandon.
The mothers’ accounts clearly demonstrate how they see the oppressiveness of the school system and that this oppressiveness is experienced as traumatising. Prilleltensky & Gonick (1996) have described oppressive practice as one that
entails a state of asymmetric power relations characterized by domination, subordination, and resistance, where the dominating persons or groups exercise their power by restricting access to material resources and by implanting in the subordinated persons or groups fear or self-deprecating views about themselves (p.129).
The schools insist on conformity failing to see the impact of their oppression and non- intelligible actions on the child. It is possible to view the behaviours of each of the children