Abstract
This narrative inquiry shows the barriers and possibilities that the current US education context poses for two mothers of pre-kindergarten sons with autism. Specifically, this work is contextualized within the growing universal pre-kindergarten reform which provides a mixed delivery (public and private) implementation. Presented with the context of choice among school sites and the expectation of mothers to provide energy for the reform through their involvement in the universal pre-kindergarten “machine,” mothers of children with autism experienced unique challenges. An in-depth Bakhtinian analysis examining the mothers’ uses of heteroglossia and polyphony shows the complexities of how they presented an oscillating “double-consciousness,” working between machine expectations and narratives of “recovery,” meaning desiring normalization in line with the expectations of early childhood experts, children, and local policies. Neither the machine metaphor nor the narrative of recovery was sufficient to negotiate the challenges of education for the families, and mothers used strategies of recycling, resisting, and re-appropriating discourses to navigate. While universal pre-kindergarten was effective in improving the academic performance of children with mild autism, it did not always support the goals of inclusive and democratic education. Therefore, mothers began to question their choice of public school context and began to consider private universal pre-kindergarten sites, even though this might jeopardize the Individualized Education Plans that they worried their children needed, particularly for social purposes. The implications address both the mechanism for shifts from public to private choice in the current US education context, and the need for a reparative project that critically addresses relationships between homes and schools.
The field of early childhood has long examined the complex webs of power and privilege that are embedded in beliefs, practices, and policies related to mothers and mothering (e.g. O’Brien and Swadener, 2006; Polakow, 2007). Mothers of young children with mild forms of autism are set up for challenging journeys within contemporary education contexts in which they are treated as educational consumers yet given significant responsibilities by educators and medical experts toward their children’s recovery (Novinger et al., 2005). Recovery in this article refers to the notion that children and families are working toward goals of normalcy in communication and adaptive behaviors, working themselves out of the need for an Individualized Education Plan (IEP), for example. At the same time, mothers of children with autism are said to promote “neurodiversity” (or acceptance of all ways of cognitive being) in the classroom by supporting an inclusive stance in their child’s classroom (Altiere and von Kluge, 2009). It is this paradox of the slippery foci of mothers’ roles in relation to contemporary school reform in the early years that is the topic of this article. Mothers’ narratives of their experience reveal how the educational system framed them and how they framed themselves as actors within the system. The research question examines how universal pre-kindergarten (UPK), the trickle-down culture of K-12 neoliberal schooling, and associated discourses of ableism in the United States pose significant challenges to two mothers of young children with mild autism, who are set up to perform labor in the project of producing highly skilled technical workers for the global knowledge economy.
Local early education “choice” policies significantly impact the lives of children with mild autism and their families and intensify ableism, which centers “smartness” as the desired educational outcome. Narratives focused on neoliberal choice policies mask elements of family narratives, such as experiencing early education as a caring, democratic, and inclusive space for all children (see Farquhar, 2012). For mothers in this study, mixed delivery (public and private) pre-kindergarten experiences positioned them to choose the best for their children.
Neoliberalism and early education
Neoliberal policy promotes marketization, privatization, and middle-class choice in education (Hursh and Henderson, 2011). In this research, parents competed for UPK spaces through a lottery, and children (and families) become valued for what they might contribute (Cannella and Swadener, 2006). The discourse of “choice” itself is authoritative, or assumed. It shifts away from the idea that everyone can shape society and that democratic values are embodied and expressed in everyday interactions (Biesta, 2011). These policies are often driven by ableist assumptions that include business-like notions of competition, winners/losers, ability-normative assumptions, the necessity of global competition, students-as-future-productive-workers, measurement through test scores, ability aligned with knowledge production, ability linked to economic productivity, and (dis)ability located within individuals (Valente and Collins, 2016). Therefore, I use the term neoliberal/ableist in this article when describing these policies.
The metaphor of the “machine” has long been used to describe the “inputs” that families make toward the behavioral “outputs” or actions of the child with autism (Danforth and Naraian, 2007). In the neo-Marxist version of the machine metaphor, mothers of both the middle and working classes (with their “available time” due to gender role expectations) provide the “energy” or labor to keep the machine moving efficiently toward the desired outcomes of recovery, defined in narrow academic terms (Griffith and Smith, 2005). Mothers’ narratives in this research reveal both the utility and limitations of this machine metaphor that do not account for the sophisticated dynamics embedded in the complex lives of mothers of children with autism attending UPK.
Pre-kindergarten policy context
In West Virginia, Policy 2525, West Virginia Board of Education (WVBOE) (2014) provides a framework for a free and inclusive state-funded hybrid public–private service delivery system for all 4-year-old children and 3-year-olds with identified special needs whose parents choose to send them. UPK, currently practiced in 10 states and DC (Center for Children’s Initiatives and Center for Educational Equity, 2017), has experienced support by broad education-business coalitions seeking to produce children as workers in the global knowledge economy (Bushouse, 2010; Rose, 2010). Neoliberal/ableist policies play out in UPK classrooms through trickle-down expectations of teachers and parents for securing “readiness,” efficiency-minded orientations toward curriculum and teaching, hybrid public–private systems of pre-kindergarten service delivery, and middle class–oriented parent involvement expectations centered on mothers’ work (Sherfinski, 2013).
Children with autism and their families often seek inclusive and democratic education in which their rights to belong in the classroom are well met (Purdue et al., 2009). But instead, they encounter the educational culture of “expertise” premised on individual proficiency such that each child needs intensive expertise not only from professionals but from mothers who devote their lives to remediating their biological differences, rather than by contributing to changing the disabling system and policies (Purdue, 2009). It has been suggested that schools become “autistic” under policy frameworks focused on narrow cognitive goals (Lilley, 2015). In other words, communication and behavior among educators who are constrained by accountability contexts may be stifled to the point that parents may feel extremely shut out. The context of choice in the United States may position parents of children with disabilities to see private schooling as preferable to public with its assumed lack of bureaucracy and increased resources and prestige better able to support children’s educational attainment and recovery from autism (Sherfinski and Mathew, in press). However, the promise of not only academic attainment but warm, intimate classrooms commonly associated with smaller private and charter schools may be enticing, especially to mothers of children with mild autism.
Autism context
Autism is a spectrum condition involving a vast range of communication and social interaction deficits, restricted interests, and IQ scores (Grinker, 2008). Thus, it is important to recognize embodiment when considering notions of democratic education and inclusion that privilege oral communication and expressions of cognition that might position individuals with autism as lesser candidates for democratic participation. Indeed, a focus on language in the oral sense may diminish democratic ideals that seek the good of the group and relations based on difference. However, links between respected hi-tech entrepreneurs like Bill Gates and autism add complexity to how children with mild autism are viewed and positioned—at once deficient and poised to climb the ladder of success (Jack, 2014).
Neoliberal parent involvement/choice creates a paradox that challenges mothers by creating a romantic narrative of recovery from their children’s autism. Meanwhile, the “refrigerator mother” contradiction 1 of the 1940s lingers in society (Douglas, 2014) and mothers continue to be blamed for disrupting the social and emotional foundations of their children’s development even while paradoxically they are required to work intensively for the recovery of their own children in the neoliberal system (Malacrida, 2003).
While the intensive accountability culture may seem removed from the concerns of children and families with autism, it contributes significantly to the “autism” of pre-kindergarten and subsequent schooling. High stakes teacher evaluations that rest on teachers’ performance as measured by students’ outcomes may weigh heavily on professionals’ anxieties for a cure and influence how teaching and assessment occur (Billington, 2006). This squeeze on teachers can position them to privilege cognitive over social goals, displacing the supports most important for children’s recovery. Differences among students are not often viewed as assets for producing school readiness (Connor and Gabel, 2010). In classrooms, disabilities can be silenced in ways similar to class/race silencing; however, at the same time interventions necessarily involve pointing out autism (Smagorinsky, 2014). While some teachers do recognize the stigmatization involved in “fixing” students (Valle, 2014), graduating from formalized IEPs is still an important goal for children with mild autism and their families (Broderick, 2009). At the pre-kindergarten level, while some children with mild forms of autism have not (yet) been labeled, those highlighted in this study began to receive services as toddlers and are seeking an eventual release from “special education” toward co-equal membership in general education classrooms.
Conceptual background
The stories that mothers tell about their children’s futures are influenced by policy contexts but also tied up in the resources and scaffolds that they provide; the cultural context of motherhood and (dis)ability are significant influences on these processes (Lewiecki-Wilson and Ciellio, 2011). By focusing on mothers, a “top down” model of socialization seems to emerge; this is problematic because it may not adequately portray the agency of teachers, administrators, and children in this socialization. However, the presence of these individuals is “voiced” within mothers’ narratives.
I conceptualize informants’ voices as expressions that can help researchers make sense of different yet related discourses that occur within interviews and field observations, rather than perceiving their words as reflections of the “true” psyche. When inspected, it was clear that mothers’ narratives (from interview data and observations) took up different “languages” (heteroglossia) and resonated with many voices (polyphony) (Bakhtin, 1981). These aspects of language which include local navigation of UPK policies and social constructions of autism in past, present, and future iterations govern how meaning is taken up in stories. One can quote another’s speech and thus “talk back” to their ideas, take on the speech patterns of an expert teacher or therapist to align with them, or be sarcastic of another’s speech (e.g. a teacher’s, principal’s, another mother’s, or policy discourse) in order to dissociate from them. For mothers in this study, as reported in the findings, examples of heteroglossia and polyphony emerged as ways to make meaning and to become double-conscious in the sense of valuing social aspects of being in line with democratic and inclusive education while simultaneously being able to “work” or at least better come to grips with the neoliberal system.
In a Bakhtinian framework positioned within discourses of the collective, differences emerge in relation to the group, rather than being constructed in the individual (Morris, 1995). Specifically, in narratives of “recovery” promulgated through the culture of expertise, there are contradictory logics that come together to position mothers in certain ways that influence thought and action in everyday life. The social positioning of mothers is deeply influenced by language stemming from collective experiences that construct difference, even while language alone is problematic because logocentric views are challenged in the context of autism (Boldt and Valente, 2014, 2016).
Agency in this framework is socially situated, culturally informed, fluid, and deeply impacted by the context and environment. In the work of Skinner et al. (2001) in Nepal, for example, the culturally informed heart/mind (seat of consciousness and emotions) was where people collectively stored the words and deeds of others; the externalizations of these discourses informed the agency of individuals and shaped narrative “tellings” in the context of modernization.
Internally persuasive discourses are the site in which new meanings are produced; they are double-voiced in the sense that they are partially the self and partially others’ discourses such as the authoritative discourses of mothering (Morris, 1995). Heteroglossia allows individuals the possibility of attaining an “outsider” view on familiar discourses such as the expected roles of mothers and specifically mothers of children with disabilities in early education by troubling the oft unquestioned ties between language and ideology such that mothers might gain a relativized and de-familiarized understanding of embedded ideologies when multiple discourses are positioned together. For example, mothers may “recycle” or appropriate the speech of a therapist they admire, or mock a school policy or teacher in order to dissociate from them by re-appropriating their discourses. In some cases, this agency may resist, rupture, or transform common conceptions of autism, splitting one’s allegiance to the machine metaphor through a measured protest in language against authoritative discourses of mothering while occasionally challenging narratives of recovery as well.
Context and method
This analysis relies on the narratives of two mothers, taken from a broader 6-year study of inclusive early childhood education practices in West Virginia UPK that is ongoing. These mothers had young children with autism and reflected the unique racial/ethnic and social class patterns of intersectional identities apparent among families attending UPK in the community. Following scholarship on Bakhtinian analysis by Skinner et al. (2001), I use a situated view of individuals constructing knowledge in community contexts to examine the mothers’ stories. I had rich data available from the mothers and the community representing varied and emerging aspects of discourses related to mothering and “recovery” in UPK, which I describe in detail later in this section. I was drawn to their stories because they clearly revealed the tensions and challenges the mothers negotiated in grappling with persuasive policy discourses and local cultural aspects. By choosing only two stories, I am able to discuss the narratives with sufficient depth.
The mothers
Ji Liu 2 is a middle-class Chinese-American mother of two children, Jonathan, who recently attended UPK, and Meredith, who was just 1 year away from UPK at the time of the study. Jonathan was diagnosed with autism when he was 2 years old. Ji has been a stay-at-home mother since her son was born. She worries that others would call her selfish, but relishes the few hours alone when the children are at school because her life with them is so intense. This is part of why she hesitates to volunteer much at school; however, because Jonathan is so attached to her and has a difficult time separating, it has likewise been in his best interest not to spend time at school volunteering. The family has had an exceedingly difficult time with UPK placements, struggling specifically with behaviors and communication between home and school. Ji continually grappled with pulling her son out and sending him to a private center; financial constraints held her back from doing so.
Courtney King is the White, working-class mother of Jude, who recently attended a UPK site. Jude was diagnosed with autism when he was 3 years old. Brought up in a poor, rural community, Courtney was the first in her family to attain a degree but due to a tight job market, she works full time as an administrative assistant. She was a single mother when Jude was a baby and toddler and is now married to Max, who works the night shift at a factory and takes care of the children during the day when Courtney is at work. Courtney helped out in many ways in child care, but volunteerism in the P-5 elementary school was challenging due to a rigid volunteer slate as well as her full-time work schedule and long commute.
Narrative analysis
Narrative inquiry has the potential to shift the theoretical conversation on educational policy and recovery from autism because mothers’ “practical wisdom” (Clandinin and Connelly, 2000) can show how the new knowledge of labeling and educational shifts are composed as chains of stories, embodied, and expressed. Labov’s (1982) method of textural analysis allowed me to carefully examine the mothers’ narratives of experience by discerning commonalities among narratives, highlighting the significant sections of the narratives and interpreting meanings embedded within narratives. I drew upon the Bakhtinian theoretical framework to consider how discourses are recycled, reconstructed, and re-appropriated within particular UPK contexts and over time.
From November 2011 to December 2012, I used traditional case study methods of in-depth interviews, artifact collection and classroom observation (Yin, 2009) to ground a study of early education access in the community of Mayville, West Virginia. The two mothers presented in this article relate specifically to autism in the community under study. Inclusive education access emerged as a key struggle for many families and professionals in the community (Sherfinski et al., 2015). As all children 3 years and above with IEPs had the right to UPK, all of the public UPK sites were inclusive in that a minimum of four children with IEPs were placed in each of these classrooms. The community research is longitudinal in nature. After the original case study, I revisited this community for 6 months in 2015 and then performed more intensive ethnographic classroom observations (189 hours), individual and focus group interviews for an academic year in 2015–2016.
The original full set of 40 participants was selected purposively to capture roles that reflect UPK in Mayville. This purposive sampling came from ongoing conversations with general and education community members and included racial/ethnic and national origin backgrounds representative of the community as well as families of children with disabilities to reflect UPK as a “fully inclusive” reform. Five of the 26 families originally included had children with identified disabilities or were in the process of evaluations.
Specific data for the two highlighted mothers first included a questionnaire and orienting conversation. During this conversation, they shared resources including notes, websites, and advice they drew upon in making educational decisions for their children. There were two semi-structured interviews. The first lasted approximately 1.5 hours in both cases, almost double the participant average of 45 minutes. The first interview questions were about mothers’ life stories; how the mothers sought early education, care, and UPK; their account of the UPK experience; what meetings and visits with teachers and other educators were like; how their experience compared to that of other families/children; and how they participated (or not) at school. The second interview lasted approximately 1 hour (Courtney) to 1 hour and 15 minutes (Ji). The second interview questions focused on classroom activities, inclusion, and home–school relationships and how these specifically related with mothers’ notions of “good” or “high” quality given cultural and contextual realities. The interview process conceptualized the participants’ voices as expressions that served pragmatic purposes of making sense of various discourse. The interviews created spaces for probing participants’ experiences and ideas (Brinkmann and Kvale, 2014). Classroom observations of 1 day each provided a sense of practices. I was able to have two follow-up conversations with one of the mothers, Courtney, which served as a form of member checking and continuing the conversation.
As supplementary data, I interviewed five additional mothers with children attending these mothers’ schools, interviewed four additional community members with children with autism not at these schools, observed in four community classrooms with students with autism (140 hours), and interviewed the teachers in these plus five additional community classrooms that included children with autism. I also interviewed a total of eight community administrators; two of these were county-wide early childhood administrators intimately familiar with the mothers’ classrooms and schools. Following the Bakhtinian-influenced framing of Skinner et al. (2001) of their narrative analysis situated in longitudinal community research, while I acknowledge that all of these data and time in the field have influenced my analysis, I focus on the two mothers’ narratives emerging mostly from the interview data.
After reading the questionnaires and interview transcripts several times and initial coding, I constructed interim texts based on mothers’ narratives (Clandinin and Connelly, 2000), specifically by analyzing their use of heteroglossia and polyphony. While the data rely mainly on the cases of two mothers, their narratives also draw on the refracted voices (Lawrence-Lightfoot and Hoffman Davis, 2002) of policies, educators, parents, and children present in the research. These voices emerge through the mothers’ utterances and are shown in order to examine the inter-relationships existing in communities.
Findings
The findings show instances in which mothers were positioned by the “machine” and used their personal experiences to recycle, resist, and re-appropriate discourses of narrow academic attainment. They did this complicated discursive work through the predominant narrative of “recovery” all while experiencing the embodiment of being mothers expected to energize the machine. Table 1 serves as an advance organizer, showing and comparing the discourses of the machine metaphor to the main narrative of recovery articulated by the mothers; the data show an oscillation between these two modes. Mothers’ narrative themes, about negotiating IEPs and being involved in classrooms and schools, showed heteroglossic elements of “the machine” and “recovery” metaphors in an internally persuasive discourse shown later in this section. While Table 1 necessarily divides discourses which were in reality messy and “moving,” it shows how Bakhtin’s theory can highlight complex discursive processes that contribute to how mothers are positioned and how they recycle, resist, and re-appropriate discourses of “the machine” and “recovery.”
Complex discursive practices.
IEP: Individualized Education Plan; UPK: universal pre-kindergarten.
The following vignettes examine how the mothers used language to invoke meanings of policy in ways that added complexity to and sometimes troubled notions of the machine as well as how they embodied authoritative discourses in off-center ways.
IEP rules
Over time, the mothers’ surveillance of school settings became forced through some unfortunate incidents that violated their trust, as in Ji’s case:
[I had] gone in [to the principal] and complained. Because [Jonathan] had an IEP. I was supposed to be receiving a note home every day as to how his demeanor was, how transitions went, did he use his fork and spoon …. I would ask the teacher, “How is he doing? Who are his friends?” And she would respond, “I don’t know. I don’t know what he does.” (Ji Liu, Interview)
Courtney had a similar example, which I describe in detail in the next section on “Being Involved,” in which her son had missed his social relationship goals. For both mothers, neoliberal/ableist policy discourses privileging academic attainment over social development were recycled by teachers, resisted by mothers and administrators, but also re-appropriated as mothers’ understandings of parent involvement. For instance, Ji indicated, “According to the principal who went in and observed, Jonathan was spending half, three-quarters of his day on the computer and missing his IEP targets for social interaction” (Ji Liu, interview). The state’s UPK Early Learning Standards Framework (ELSF), which underwent a recent alignment to become more in tune with K-12 standards, was focused on academics and language more than social skills. According to the teachers in the study, ELSF required intensive and ongoing assessment of each child by the teacher, whether or not they had an IEP. Both teacher interviews and classroom observations revealed that in the teacher’s busy day, the required assessment could easily trump an individual’s IEP implementation. While parent involvement could help fill in some of the gaps in the classroom, Ji could not volunteer because her son would not act “independently” at school because he was quite attached to her. Courtney could volunteer, but as I mention in the next section, her school split volunteering roles to match parents to academic tasks not to children, thus removing some parents from their own child’s classroom. Instead of being there to help enforce her son’s life skills education, Ji and Courtney were positioned to trust teachers to be accountable to IEP provisions.
Ji upheld the authoritative discourse of middle class parent involvement by recycling that discourse yet also re-appropriating it to resist neoliberal ableism; she confirmed her need to be at school not because it is expected by school people (in her “special” case it was not) but because the teacher needed surveillance to honor the IEP. Indeed, Ji recycled the teacher’s words to show that she interpreted a lack of care for her son’s social skills. In doing so, she used the dominant narrative of “recovery” while simultaneously embodying the expectation for mothers to energize the machine. While she now more intensely aspired to be more involved like “normal” parents, she felt that her voice was dismissed by the teacher’s unwillingness to consider her son individually. She asked the teacher about his friends, indicating that she worried about the potential for social exclusion, which was confirmed by the teacher’s response revoiced in her interview. Courtney also worried deeply about social exclusion, citing an incident from a short-term stint in another school setting in which her son was sitting in front of a mirror like a “zombie,” away from the other children, when she stopped in to pick him up early.
Ji began to question the point of having an IEP as Jonathan’s behaviors became more normalized through “recovery” and Jonathan’s teacher the following year saw him not as one to be placed on the computer, but as “an awkward little duck” (ventriloquated by Ji) who was very bright and perhaps not in need of an IEP for autism. The conversation between Ji and the teacher might be seen as a huge step toward the goal of recovery, but there was a persistent fear given Ji’s knowledge of societal discourses stigmatizing autistic behaviors as deviant and dangerous that caused her to resist the teacher’s use of social readiness and associated “smartness” discourses to re-appropriate meanings of recovery:
People who don’t know us … have no idea [he has autism] …. And that’s an awesome feeling, because lord knows we’ve put in enough work … It’s a good thing, but then it’s a scary thing. Because then, if he does something strange and bewildering, people go, “He’s crazy” or “He’s acting out.” … My fear is that as he goes on with school, things will come out that he does and I don’t want him to be reprimanded for acting that way. (Ji Liu, Interview)
Grappling with societal discourses and the authoritative expectations of parent involvement and the narrow focus on achievement embodied in her experiences in and outside of school, Ji improvised her speech through the re-appropriation and broadening of “normal appearance means disability-free” to create a new discourse that might allow her child to remain “safe” by retaining his IEP (see Tobin, 2000). In so doing, Ji diminished her son’s cognitive potential in order to privilege the social and maintain his need for an IEP: “I don’t want to put him down for being bright … but I’m worried … I know he’s bright, but I need to know that he’s going to be able to socially function” (Ji Liu, Interview). Although in Courtney’s case her son was not yet in danger of losing his IEP, because of Jude’s progress both socially and academically (Courtney noted that people always say, “I don’t think Jude is autistic!”), she feared that he might lose services in the future.
Ji referred back to the many times when she needed to mete out what happened at school and call the teacher to interpret because Jonathan could not fully communicate his anxieties but would whimper at bedtime. Likely, this ability to slip out of academic-oriented parent involvement roles and into social support advocacy was made possible by Ji’s articulated worries about unpredictable social difficulties and misinterpretations of his quirks by school people. But conflictingly, in a group of classroom mothers, Ji criticized the district UPK Creative Curriculum for being too “loose” and “disorganized.” These mothers noted that a nearby private UPK site was required to teach Creative Curriculum but after school had special tutorials in which the children practiced skills like name writing using worksheets. Ji and the mothers of typical children together made a pact that if they could afford it, they would leave the public site for the private. In this way, Ji embodied a contradictory position that fueled the machine while she worked discursively toward ensuring Jonathan’s inclusion and ideally recovery. I do not have data on Courtney engaging with other mothers about curriculum but it was not that she did not crave this. She considered pulling out of public school for a private option or a homeschooling cooperative that might allow for more intimacy with professionals and/or other mothers like she had experienced in early intervention. Like Ji, she used internally persuasive discourse to address how she was positioned as the mother of a child with autism.
Being involved
Ji’s involvement as a volunteer in the classroom was hard-won. After years of Jonathan’s violent tantrums at drop-off because he was “so emotionally tied to me,” Ji was able to work out a compromise at school that bridged her providing academic support for the class and affirming the mother-son bond that so often had proved a challenge for the classroom. Ji recycled the authoritative discourse of “good” school mothers desiring to support the project of narrow academic attainment, but tempered this with an acknowledgment of the social positioning of her child or herself as off-center. She told the teacher, Mrs Gray, “I want to do this, but I don’t know if it’s going to be to his detriment, if it’s going to disrupt you.” Mrs. Gray encouraged Ji to try, and during station time, Mrs Gray explained carefully to Jonathan that his mother would work with other children and if “we get through this, the next time around we’ll have Mommy volunteer at your table.” Toward the end of the school year, there was the class picnic, whereas in the past, Ji could never have left early without causing a “45 minute meltdown.” This time she came and left, and Jonathan adjusted. More assuredly, she acknowledged that he was “growing up” and “figuring it out.” In this way, Ji somewhat hesitatingly recycled neoliberal/ableist notions of children’s growth and development to negotiate embodying the machine in the classroom. In this example, she voiced “whispers” from the past that spurred reluctant action in the present. While lagging temporally, recovery and the machine eventually converged and Ji saw that as welcome relief, for the moment. At the same time, she indicated that even though she is presently pleased, as the mother of a child with autism, she can never quite relax under the current system and needed to stay positioned for active resistance: “I’ve made myself very clear to the people in the office … I’ve been in there enough screaming and yelling …”
Courtney’s school situation was a bit different. She discussed the paradox that all mothers were expected to be involved but that as the mother of a child with autism she was “locked out” of parent involvement by a “double-speaking” school that required her involvement. In other words, she was barred from contributing to recovery at public school. Courtney had experienced the warm effects of close parent–teacher relationships in the past. She referenced back to welcoming teachers in the Birth-Three early intervention program who discussed the importance of parent involvement: “And I think if you stay involved and talk to those people that are taking care of your kid and build a relationship with them, you’ll feel better about it and they’ll receive better care” (Courtney King, Interview). In these relationships, which reminded Courtney of her own rural “nurturing raising,” mothers’ feelings were taken into account as well as the children’s. “Good” education and “good” mothering both were re-appropriated by Courtney—for her, they were about everyone being present and feeling good. Furthermore, the benefit of home–school relationships was children being better taken care of because of the connections. In contrast, when Courtney discussed public school, the role of parent involvement shifted from social relationships to reading with children in another classroom. Courtney interpreted this as a rift between what the schools say (that they want involvement) and what they do (place parents away from their children and assign them academic tasks): “They say they want you involved, but I still just don’t feel it …. The schools are locked down during the day. Your child goes in, your child comes out …” She was pushed to resist teachers and school by associating school with an “icy” feeling that historically and contemporarily had been directed toward mothers of children with autism. Eerily, Courtney’s comments hearken back to the days in which children with autism were locked up in institutions, away from their families. This makes sense as a kind of personal and social defense mechanism legitimizing the labor of mothers in social movements and individual acts toward their children and others with disabilities:
I’m not a helicopter parent, so I just want to clarify that on record …. I just am afraid of institutionalizing children at a young age, or at all …. Still there is just times where I feel his needs are neglected even though I’m that proactive. (Courtney King, Interview)
Courtney resists common media and school-based critiques of parents who worry intensely about their children being called hovering “helicopters,” showing her awareness of how she might be viewed and covering her speech accordingly because she knows that mothers of children with autism have sometimes been portrayed as over-compensating for their historical image. Instead, she re-appropriates involvement as rights to parental choice that typifies the neoliberal policy agenda. This positions the school itself as anti-inclusive and anti-democratic and repositions mothers of children with autism as warm and caring not only to their child but to all children. However, because her embodied attempts at involvement resulted in no changes in relationship for her or her child, she grew further to resent public schooling, pulled away and began to consider other options that ironically denied Jude the protection of his IEP designed mainly to support his social development and communication skills. Revoicing Jude’s interpretations of time for socialization and play at school as resistance to narrow academic goals, Courtney said,
When Jude comes home I’m like, “Did you guys go outside today?” “No, we didn’t.” … On a nice day. For whatever reason …. but Wilesville is a good school, they have good test scores [laughs]. (Courtney King, Interview)
At the end of this utterance, Courtney recycles the neoliberal/ableist discourse and then laughs wryly. The laugh, according to Bakhtin (2009), is a form of re-appropriation and resistance that defeats fear. In laughing at the high local test scores published in the newspaper, Courtney showed evidence of having examined cultural discourses in addition to testing culture and parent involvement. For her, neoliberal/ableist discourses of school quality were not such a simple matter. She expressed later in the interview that she is cautious, but ready to make another choice of school site. Because her son’s autism is mild, she boldly indicates in her interview that she is “willing” to forego her rights to special education in order to choose a private option instead. This is an option that Ji also considered before her circumstances started to improve. As in the IEP theme, when it came to being involved at school, mothers’ embodied positions within the machine conflicted with the narratives of recovery they sought for their children; using Bakhtin’s heteroglossia and polyphony show how mothers negotiated these in context.
In sum, for children with mild autism, their development was said to be “splintered” with some areas ahead of age norms and others well below. As they passed through UPK toward kindergarten, the academic skills on which the children often performed well were privileged and social development diminished in importance in the eyes of school people. Thus, while the children and mothers were becoming normalized at school, their rights to modifications and therapies that addressed the child and family were removed or diminished.
In this context, the mothers were expected to contribute to their children’s education in middle class ways. However, mothers quickly found that being “involved” was challenging because their ideas about recovery were in conflict with policy aims, assessments, and teaching practices, and their classroom presence could distract from their goals toward achieving normalcy. Mothers’ labor fueling the UPK machine ironically excluded mothers of children with autism from being active participants. Instead, the participants’ embodied energies were diverted to a different machine, “special” education and “special” mothering, in which readiness for kindergarten was conceptualized on a new timeline and its targets adjusted accordingly. In this work, mothers engaged in recycling, resisting, and re-appropriating discourses of neoliberal ableism. They did not always believe they were without agency; indeed, at times they saw themselves as supporters, nurturers, diplomats, silent observers, choosers, networkers, reformers, and barracuda-like advocates for their children, families, and selves emerged in individual storylines as part of their “good mother” roles. However, this linear and individualistic self-positioning was in conflict with mothers’ lived realities, which presented more of an emergent, contextual, and complicated engagement with schools. It could be painful for mothers to be trapped in the neoliberal/ableist assumptions they wanted to resist for their children and others’ children. While there was limited evidence of this occurring, a democratic and inclusive environment would instead conceptualize the subjectivities of parents, teachers, and all children as fluid rather than fixed and hierarchical.
Discussion and conclusion
This article discussed through a Bakhtinian perspective how mothers struggled between being positioned by and positioning themselves within contemporary societal discourses such as the “machine” metaphor, and how they create narratives of recovery as a strategy when that metaphor does not quite cover their experiences as mothers of children with autism.
These narratives were situated within the US context of increasing educational privatization. Presently in some US communities, parents enabled by voucher programs (for attendance at private schools) may sign away their children’s rights to Individualized Educational Plans (IEPs) available under the federal Individuals with Disabilities Education Act (IDEA) as they feel pressured to enter the supposed better environments of private schools (Strauss, 2017). In choice-based structures, parents of children with disabilities experience diminished educational quality and supplemental services that are their rights under federal law (Burch and Smith, 2015). These problems ultimately affect life in classrooms and may have contradictory effects for children with autism and their families.
In this research, threads such as benevolent privatization, “helicopter” parenting, the “talented technological” autistic, the violent autistic, and the extinction of outdoor play played a part. The mothers highlighted worked within challenging school structures and with and around discourses that contributed to how mothers of children with autism could and could not participate educationally for the benefit of their children. In UPK classrooms, the mothers’ voices were sub-voices because they could never fully transform classroom practices to recognize the personhoods of their children. In this case, the machine metaphor of neoliberal/ableist schooling in which mothers are a codified part was not the most persuasive for mothers, who used visions of narrow academic tendencies paying off to assuage the need for public school when private alternatives might better supply the full range of supports. These data add complexity to thinking about the identities and roles of parents in education as limited to categories related to geography, culture, prior involvement with schooling, and the like.
Instead, the discursive work of mothers of children with autism reveals an oscillating double-consciousness in that they understand “what counts” at school but they also understand the vital importance of social normalcy for their children in the long run. In public schools pressured to follow the proficiency route, mothers navigated the split between academic and social learning that they perceived as problematic for their children. In the gap between academic and social learning, private schooling options became more compelling to mothers seeking to bring together both academic and social aims. This was key given the reputation among mothers in this study of private school settings as being small, intimate, morally focused, better technologically resourced, and academically rigorous. Thus, while the IEP and label are protective measures, it seems reasonable that mothers would trade them for private school when provoked.
As Altiere and Von Kluge (2009) have suggested, an asset of families of children with disabilities is their propensity to disrupt the neoliberal/ableist competitive emphasis on accounting for smartness that obscures neurodiversity in classrooms. However, what has not been said here is that school structures may close in on mothers and children such that their “involvement” at school is bracketed and any inclusive and democratic potential that quite logically might come from their presence and participation may be erased.
Clearly, this study was quite limited in its scope of only two mothers. However, the insights gained suggest that additional studies of autism and school choice are in order.
Unanticipated at the outset of this study were that mothers’ narratives provided a basis for questioning notions of democracy and inclusion that focused solely on individuals. By considering the effects of linear framings of “recovery” and the challenges they bring when related to neoliberal/ableist expectations, re-narrativizing collective education in reforms like UPK might offer new ways of thinking about democracy and inclusion in order to see (dis)ability as fluid, relational, and situated within groups that include families and classrooms.
This Bakhtinian analysis confirms that new discourses as well as a broader assemblage of practices might better address academic and social spheres as they apply to all children and families in early education. It may also open a space for mothers to feel more included and there may be less need for mothers themselves to actively break down the monoculture of neoliberal/ableist classrooms because there would be a more collective effort to do so. De-bureaucratizing might be done through challenging and shifting roles among mothers, teachers, specialists, paras, and children in order to re-invigorate classrooms with richer attention to multiple domains of learning.
Mothers pointed to narrow academics and concerns for social development in the face of contemporary autism discourses highlighting entrepreneurial success for those with technological skills. A heteroglossic perspective, while fluid, indeterminate, and contextual, gives important insights into the complexities of the mothers’ lives in context. Using this perspective led to a deeper understanding of how recovery, rather than being anchored in the neoliberal/ableist project, should instead be a reparative project in which the multiplicity of identities and bodies matters in UPK policies and practices. Re-asserting attention to nuanced readings of the emotional and social climates of public school classrooms seems to be important now more than ever. With potentially high stakes for families of children with autism, considering how internal structures and dynamics in pre-kindergarten and K-12 public schooling would contribute to a healthier environment for all children and their families is crucial. In this regard, assessment and accountability structures that hold mothers accountable for their children’s recovery must be re-thought. Following these data and analysis, reparation is particularly needed with regard to mothers of children with autism and their children in early childhood settings. In this project, a reparative early education is one that does not deny any of the educational domains, but rather opens up more mutually constitutive possibilities of neurodiversity.
Footnotes
Acknowledgements
My sincere thanks to Dr Sera Mathew, Hilary Bougher-Muckian, and the JECR reviewers whose thoughtful questions and suggestions strengthened this article significantly.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
