Understanding the Experiences of Young Children on the Autism Spectrum as They Navigate the Irish Early Years’ Education System: Valuing Voices in Child-Centered Narratives

Abstract

This article, which focuses upon narrative inquiry as a means of including the voice and experience of children on the autism spectrum, draws upon a doctoral study that explores the experiences of young children as they and their families navigate the Irish Early Years’ Education System (both preschool and primary school). It focuses, in particular, on the need to acknowledge and appreciate the experiences of these children within their homes and educational settings, their immediate microsystem. It also urges an increased awareness of how the development of these children’s voices is heavily impacted by the roles and actions of others. Six parents shared stories of navigating the Irish Early Years’ Education System with their young child on the autism spectrum. Their children’s voices were incorporated into these narratives using visual storytelling methods. This research adopted an ecological or intercontextual interpretive stance, thus providing valuable insight into the coconstructed experiences of those who identify as “different” or “other,” in this instance, young children on the autism spectrum and their families. In terms of the present article, this ecological stance encompasses the central aim of the overarching study; the critical restorying of parents’ lived experiences of navigating the Irish Early Years’ Education System with their child on the autism spectrum which is thus, underpinned by narrative inquiry and voice.

Keywords

narrative inquiry social justice photo-elicitation narrative analysis methods in qualitative inquiry

Introduction

This article draws upon a doctoral study that explores the experiences of young children (aged 3–6 years) on the autism spectrum as they and their families navigate the Irish Early Years’ Education System (preschool and infant class in primary school). Children on the autism spectrum have the right to have their voices included, listened to and acted upon in all matters concerning them. This inalienable right is congruent with Article 12 of the United Nations (1989) Convention on the Rights of the Child. Including these children’s voices proved a point of much contemplation throughout the research since direct access to this group was not possible. Nevertheless, gaining the perspectives of these children in relation to their educational experiences remained of paramount importance. Therefore, innovative and creative methodologies were necessary to authentically integrate their voices throughout the study.

The concept of a child’s voice is typically defined in two ways. The first represents its literal interpretation and comprises of the child’s ability to physically vocalize what they need or want to communicate (Waite, 2012). The second definition of voice encompasses, the many ways that a child’s experiences, perspectives, and ideas can be communicated, through, for example, gesture, facial expression, laughter, and bodily movements (Moloney & McCarthy, 2018; National Council for Curriculum and Assessment, 2009). This interpretation of voice emphasizes the significance of how these experiential elements have been socially constructed (Bakhtin, 1981; Whyte, 2015) and goes beyond a child’s physical capacity to communicate verbally. This social interpretation of voice is inextricably linked to the child’s lived experience and identity. Individuals with communication difficulties, for example, children on the autism spectrum face considerable challenges as they attempt to construct their voice and identity within a society that typically devalues any form of communication that is not spoken or written (Boggis, 2011; Lloyd et al., 2006; Teachman & Gibson, 2018). Consequently, there is an absence of voices representing the perspectives of children on the autism spectrum in research. Unfortunately, this is reflective of much research relating to autism, which often omits the voice of the individual on the autism spectrum (Broderick & Ne’eman, 2008; Krcek, 2013; Mattron, 2011).

The Challenge of Including the Voice of the Young Child on the Autism Spectrum

While much research relating to autism focuses on children’s behavior and families’ experiences of this, few studies explore the experience of the child on the autism spectrum (Keenan et al., 2010; McPhilemy & Dillenburger, 2013), effectively, silencing their voice. Consequently, research tends to present the parent’s experience in terms of how they are affected by their child’s autism (Benson, 2018; Gorlin et al., 2016; Whitehead et al., 2015), leading to typically homophonic findings where the affected parents’ perspective emerges as the singular dominant voice. This study is cognizant of concerns raised by many within the autism community regarding certain research methodologies used in autism research (Broderick & Ne’eman, 2008; Krcek, 2013; Mattron, 2011; Willey, 2014). Careful consideration was afforded, therefore, to the challenge of including the voice of the young child on the autism spectrum in the study. Drawing upon their specific exploration of the “questions arising” from researchers’ responses to such challenges, Pellicano and Stears (2011, p. 271) argue that findings which exclude the voices of the individuals on the autism spectrum can be deemed unethical and unreliable. Although the present study stands firmly in solidarity with such researchers, it acknowledges the methodological and ethical issues preventing any guarantee of the direct inclusion of the voice of the very young child on the autism spectrum in research. These methodological and ethical issues are elaborated on by Teachman and Gibson (2018) in their pioneering work exploring the construction and communication of the voices of individuals who communicate using augmentative and alternative methods. In outlining the reasons for including the perspectives of individuals who were 15 and older, they state that this older age-group would be “more likely than their younger peers to have developed the requisite communication skills to support” their ethical and practical participation in the study (p. 3). This informed conclusion, together with their recognition and appreciation of the value of families’ shared narratives, greatly influenced the research design for this study. Indeed, it resolved much of the internal conflict that had arisen from the challenges faced in designing a study that would authentically include the perspectives of these young children on the autism spectrum.

Unfortunately, within the Irish context, due to lengthening waiting periods between referral, autism diagnosis, and intervention, many children with communication needs are typically of school-going age before they begin to use alternative or augmentative communication methods (Connolly & Gersch, 2013; Gilroy et al., 2018; Moloney & McCarthy, 2018). Consequently, the present study aimed to best realize access to young children’s voices through engagement with the narratives of the most significant people in their lives, their parents. Narrative inquiry, in particular parental narrative, was utilized as a means of including the voice and experience of these young children on the autism spectrum, as they and their families conavigate the Irish Early Years’ Education System. Again, the work of Teachman and Gibson (2018) was paramount here, as their insightful interpretation of the role of families in the co-construction and representation of the child’s voice, particularly the nonverbal child, somewhat validated the methodological choices of the study. Their reflections upon the lived familial experience of children demonstrated that the family’s involvement in the children’s narrative would not just be considered acceptable but could, in fact, prove optimal. In this respect, the present study also resonates with the work of autism advocates who promote the inclusion of the collective voices of the autistic community, their family members, and immersed practitioners in research as a methodological imperative, thus, representing the need for a co-constructed narrative of autism (Holder, 2013; Pellicano & Stears, 2011). The value of this stance is further underscored in the following reflective journal extract:

As I continue to research the use of family narratives as a methodology, I can feel a shift in my positioning on the topic. If the family narrative is interpreted as representing one particular voice, ethical issues arise. However, if the multitude of voices socially constructed within family contexts are recognised and appreciated, Bakhtin’s concept of polyphony is realised and each voice can be validated and empowered. This confirms my emerging belief in the value of shared, co-constructed narratives, rather than my original quest for independent perspectives. (Reflective Journal, January 11, 2018)

From this point onward, “a realistic, honest approach” to the inclusion of voice was adopted throughout the research that identified and rationalized the absence of independent narratives from young children on the autism spectrum (Zhang, 2015, p. 102). It thus recognizes and embraces authentic co-constructed voice and narrative within the family’s shared lived experience of education through the use of visual elicitation methods and the integration of artifacts. It illustrates how these methodological tools are an effective means through which the voice and experience of children on the autism spectrum can be constructed and embedded in research.

A Relational Narrative Inquiry: Valuing Voices

Guided by Bronfenbrenner’s (1979) Ecological Theory of Child Development, the premise of this article is that reality is co-constructed among social actors within and between social contexts. Within this ecological ontology, the lived experience, identity, and voice of each child are collectively co-constructed. This experience is significantly influenced by the relationships, interactions, and wider narratives encompassing the child within their immediate microsystem (e.g., their home or educational setting). This methodological stance also provides insight into the co-constructed experiences and perspectives of those who identify as “different” or “other,” for example, children on the autism spectrum and their families. The critical and ecological stance is further concerned with the way in which narratives about this different way of being are constructed, transmitted, and assimilated. The narratives of those at the center of navigating the Irish Early Years’ Education System (parents of children on the autism spectrum and the children themselves) are central to this article. The critical restorying of these families’ lived experiences underpins both this study and narrative inquiry as a whole and prioritizes the centrality of voice throughout.

Throughout the study, the link between narrative modes of inquiry and the interpretation of voice(s) emerged inextricable. Thus, reiterating Eakin’s (1999) powerful words that “narrative is not merely an appropriate form for the expression of an identity; it is an identity” (p. 100). Although narrative inquiry typically focuses solely on individual stories (Andrews et al., 2013; Clandinin & Connelly, 2000; Kim, 2016), the intention to extensively explore the coconstruction and communication of the perspectives and voices of young children on the autism spectrum necessitated a broader range of stories and breadth of experience to inform the data collection and analysis process. Echoing the work of earlier narrative inquirers (e.g., Atkinson, 2009; Hendry, 2009; Hones, 1998), gaining an understanding of these narratives in their individual and collective form became central to the methodology and associated methodological tools.

Sample

Participants were selected using a non-probability purposive sampling technique. It was important that participants were parents/guardians of young children (aged 3–6 years) on the autism spectrum who were, or would be, attending preschool settings in Phase 1 (May–July 2018) of the study and transitioning to primary school following phase two of data collection (May–July 2019). This inclusion criterion ensured that the longitudinal educational experiences of these young children would be incorporated, thus encompassing both preschool and the infant classes in primary school. It therefore allowed children’s and families’ experiences across the entire Irish Early Years’ Education System to be interpreted. Six parents of children on the autism spectrum agreed to participate in multiple, in-depth interviews over the course of the study between May 2018 and July 2019. Of the six participating parents, three were known to the authors through prior engagement in an existing parent network. Having seen information relating to the study online through autism community networks, the three remaining parents volunteered to become involved. Five of the participating parents had more than one child on the autism spectrum. Therefore, the six parent narratives indirectly represent the experiences of nine children aged between 3 and 6 years, all of whom presented with various modes of communication. While four of the children were verbal, five communicated non-verbally using alternative and augmentative communication (AAC) methods. Three of these children predominantly used Picture Exchange Communication System (PECS) to communicate with their families and significant others. One child used Lámh¹ for the most part, and one had recently transitioned from PECS to an electronic AAC device. Throughout the data collection process, parents were enabled to talk extensively about their lived experiences of navigating the education system, for their young child/children on the autism spectrum. While small, the sample size (n = 6) proved to be a considerable strength of the study. It (a) enabled a deeper engagement with the families and their narratives over a prolonged period of time and (b) allowed continual, in-depth interpretation of the stories of these parents and their children, an integral element of narrative inquiry (Chase, 2018; Clandinin & Connelly, 2000; Kim, 2016).

Data Collection: Child-Centered Life Stories

Given that the primary aim of the research was to explore and interpret the experiences of these young children and their parents, data were collected through narrative interviews. While the parents’ narratives comprised the main data, developing an understanding and interpretation of the children’s experiences of the Irish Early Years’ Education System was paramount. Consequently, interviews were viewed as shared experiences where the voices of these young children and their parents were continually prioritized and emphasized. This required active listening strategies where the importance of contextual and indeed, intercontextual awareness, was paramount to effectively explore and interpret both the individual and collective nature of the lived experiences of children and their parents. In-depth narrative interviews were undertaken in surroundings familiar to the parents to encourage them to talk with ease about theirs and their children’s stories (Muylaert et al., 2014), revealing their authentic experiences. In the first phase of data collection (May–July 2018), parents were asked to freely describe their children’s life stories from birth onward. To remain true to each child-centered narrative, the researcher did not use an interview schedule and interjected only when member checking was necessary for clarification and confirmability. To ensure that the children’s experiences were included in the child-centered narratives, parents were asked to self-select and use visual elicitation methods with their children as narrative stimuli prior to participating in their second and third interviews. Elicitation methods typically included photographs (including the outside of the school/preschool, the inside of their classroom/educational setting, their tutors/teachers/Special Needs Assistants (SNAs), lunchtime, playtime, and a range of educational activities). Two parents also used items of significance to the children. Interestingly, both of these items, a flashing light and a guitar, represented the importance of sensory integration in their children’s educational settings. The use of visuals and artifacts offered each child the opportunity to share their experience and perspective of their educational journeys on their terms. Brenda explains,

…initially I was going to just show the pictures but I knew I would have to initiate things that way and then I would be asking the questions “where is this?”…“who goes there?”…“do you like it?” It would be all me and just one-word answers from him maybe. So, I just left the pictures here and there and he would bring them to me instead. And that way we were getting his side of it.

Parents were encouraged to document their children’s responses, whether verbal or nonverbal. The importance of noting sensory expression (e.g., excitedly hand flapping or anxiously covering ears) was emphasized also. Parents incorporated their children’s responses to visual elicitation into the interview process, thus revealing children’s experiences and narratives. In this way, the study sought to reach and authentically include remote voices, those of young children on the autism spectrum (Allen, 2012; Bagnoli, 2009; Croghan et al., 2008; Teachman & Gibson, 2018; Teachman et al., 2014). The integration of visuals and artifacts relating to the children’s educational journey thus far allowed the child-centered narratives to be coconstructed, bolstering the processes of shared narrative, elicitation, and formation that comprise the “initiating parent voice” concept (see Te Whāriki, Ministry of Education, 1996/2017; Whyte, 2015).

Role of Researcher: Reflecting on Bias and Privilege

The study adopted a human-as-instrument processes of analysis where the notion of subjectivity was deeply and personally embraced, while maintaining its link to an informed theoretical perspective—one that was multifaceted and included social, educational, and personal aspects (Pezalla et al., 2012). This study reiterates the views of other narrative researchers who value deep engagement as a methodological strength and appraise researcher voice as an asset (Andrews et al., 2013; Clandinin & Connelly, 2000; Kim, 2016; Lyons & LaBoskey, 2002). Gaining insight into the field of narrative inquiry revealed the significance of appreciating researcher identity while also prioritizing the participants’ voices. The following journal extract illustrates how this tension between researcher identity and participant voice was identified and resolved early in the research:

My own identity, my voice as a parent of a young child on the autism spectrum, as a teacher within the Irish education system, must be recognized among the multitude of voices involved. This recognition can strengthen the research. It embraces shared trust, understanding and power; the central tenets of partnership…myself and the six participating parents are storytellers who share a narrative. Our child-centred stories represent what many would accept as the very fabric of narrative inquiry and embody the essence of this study. The communal relationship built around the construction and re-telling of our stories, this almost tribal experience of narrative, has become a metaphor throughout…(Reflective Journal, February 3, 2018)

Indeed, understanding the development and influence of all dominant voices was a critical aspect of the entire research process, increasing its scope to include a broader analysis of the collective life stories and revealing the multitude of voices molding each child-centered narrative. Within this study, this narrative fabric is created and interpreted using interwoven strands of meaning which are enmeshed with the many changing issues and changing bodies of knowledge that are actively in flux within these children’s personal and wider stories, a central tenet of narrative inquiry (Cavarero, 2000; Coulter et al., 2007; Hyvärinen, 2008), thus, highlighting the importance of understanding identity in relation to ourselves, our families, our communities, and our changing world.

Informal, in-depth interviewing techniques, verbatim transcription, continued member checking, and purposeful reflection all facilitated the reduction of any biased selectivity of data. Early in the research process, Chenail’s (2011) interviewing the investigator strategy² supported in-depth reflection on the multifaceted role of parent of a child on the autism spectrum, practicing educator, and researcher. While this self-interview highlighted any potential issues relating to bias that could underpin particular questions or narratives, the potentially neutralizing effect that this triangulated positioning could have on the production of bias during interviewing or reflecting also came to the fore. In her first interview, Ellen effectively articulated this neutralizing effect:

I suppose you are in a great position really…you’re a parent, a teacher, a researcher. You get it. You’re not going to fall into the trap of blaming one side for any problems that might arise. You can see both sides.

A commitment to reflexivity was integral to embracing and validating the immersed researcher role. Purposeful reflection allowed researcher subjectivity to be “re-viewed as a resource that can be tapped in order to contextualize and enrich…research process and its products” (Gough & Madill, 2012, p. 374). The importance placed on reflection in understanding all the facets of the story of our experience is reiterated by significant contributors to narrative inquiry (e.g., Clandinin & Connelly, 2000; Kim, 2016; Lyons, 2007). This research embraced such authors’ avocation of deconstructing and reconstructing story while giving significant consideration to the emotive element of the narratives and associated reflection. It therefore supports the notion of “positioning our own emotional responses as legitimate research data” (Morris & Davies, 2018, p. 229). Accordingly, reflecting upon emotions of, for example, privilege, that emerged within, resulted in a shift from researcher privilege and guilt as a “troubling experience” (Clarke, 2016, p. 26) toward an acceptance of its capacity to encourage “crucial interrogation of the place of the self in the research process” (DeLuca & Maddox, 2016, p. 284). The following exchange, where Hannah discusses the challenges associated with accessing in-school support (i.e., SNA), highlights:

Hannah:

and your son, was he able to get a place in mainstream? Did he get SNA access?

Researcher:

Yes, he was granted access and started the year before last.

Hannah:

God, he’s one of the lucky ones. It’s next to impossible to get SNA access now. If a school doesn’t have a unit. There isn’t a hope. You can’t blame them really. One teacher to 30 children…imagine it like….

Significant changes to inclusive early childhood education were introduced in Ireland in 2016, through the Access and Inclusion Model (see Department of Children and Youth Affairs/DES, 2016; Department of Education and Skills, 2017) and a review of SNA allocation in primary school (National Council for Special Education, 2018). As a result, beginning an educational journey following these changes to inclusive education policy, the lived experience of these children and families could differ significantly from that of those who had gone before them. While unanticipated and unsettling, the resultant feelings of privilege and guilt were none the less, central to gaining an ecological and critical understanding of the intercontextual meanings and actions intertwined in such emotions. This critical awareness within and surrounding the narratives, referred to by Clandinin et al. (2007) as “wakefulness,” was the keystone of both the data collection and analysis processes.

Ethics and Trustworthiness

As with any research, informed consent was integral to this study, representing a communicative process through which the participants were enabled to make an informed and voluntary decision to participate or not in the research (Gray, 2014; Hennink et al., 2011). The need to completely inform participants of different aspects of the research in comprehensible language throughout the process was paramount (Bryman, 2008; Creswell, 2009; Robson, 2002). By use of an information letter, participants were advised of the nature and objectives of the study, what their participation would involve (a series of interviews, elicitation of children’s voices using visuals and artifacts), researcher identity, how the findings would be used (i.e., publications, presentations, and doctoral thesis), and how their anonymity and the confidentiality of information provided would be assured. Because informed consent requires ongoing negotiation of the terms of agreement as the study progresses, participants were asked and gave full commitment to this continuous, co-operative process. Protecting the participants’ rights, well-being, safety, anonymity, and confidentiality was essential. Therefore, codes were used instead of any identifiable details on data transcripts and so on and every effort was made to ensure that the “restructuring” of participant stories did not breach confidentiality or anonymity agreements (Cohen et al., 2000; Creswell, 2009). These ethical considerations increased the trustworthiness of the research with such emphasis on truth and trust manifesting as the achievement of rigor as the study progressed, a concept that warranted much consideration throughout. The following journal account details the paradoxical relationship between rigor and narrative inquiry in the early stages of the study,

At the outset of this journey, I believed that the concept of rigor, traditionally accepted as the quality assurance of quantitative research, stood almost in opposition to my immersed narrative stance…as I reflect on my earlier writing I am met with the recurring argument that because qualitative research did not lend itself to rigid boundaries, there was a paradoxical relationship between rigor and such research…rigor was not my concern…. (Reflective Journal, November 7, 2017)

However, congruent with Connolly (2007) and Petrone (2017), the need to redress the conflict between such opposing stances in and around the field of narrative inquiry quickly became apparent upon entry into the field. As the research developed, rigor came to be understood as and equated with trustworthiness. The second author’s role in interrogating the data, hypothesizing, deconstructing, and reconstructing the narratives was of critical importance here as it enabled the confirmability and reliability of the findings. The trustworthiness of the findings was increased through this systematic approach to understanding the narratives (Amankwaa, 2016; Gioia et al., 2013; Stewart et al., 2017). However, this commitment to trustworthiness was not an attempt to reduce or eradicate issues surrounding subjectivity. Instead, the relationship between subjectivity and trustworthiness was embraced, as the following field note extract demonstrates,

…this emphasis on truth and trust acknowledges and, in a sense, validates the presence of my subjective voice. This can bolster my subjective stance through recurring processes of analysis and reflection. Thus, demonstrating rigor while also accepting my embodiment as the primary tool in this reflective analytic method…(Field Notes, May 24, 2018)

Analyzing the Narratives

The application of the I–Thou and I–It framework of analysis allowed each of the child-centered narratives to be understood in terms of the influences of important interactions and relationships on their lives. Buber’s (1923/1970) extensive work on existence and the world of relations explores the ways in which lived experience is interpreted. His first interpretation of existence is defined as an “I and It” relationship between the individual and its immediate experience or subjective experience of a phenomenon, for example, a family’s experience of autism. The second way in which existence is interpreted is through the more comprehensive “I and Thou” association which focuses upon the wider world of relational contexts and the connections between the “I” and “Thou” in every living relationship (Noddings, 1984, 1991). As parents provided the main accounts of both their child’s and their own experience, the term I typically referred to their immediate personal experience, whereas the use of pronouns: he, she, and sometimes, them, was typically used to denote a particular reference to their child. Nonetheless, the I–Thou analytic tool was applied to all such references, ensuring the placement of the child at the center of the narratives collected; the I within a complex, interconnected system of I–Thou and I–It interactions and relationships.

Following the I–Thou narrative analysis, a separate “analysis of narratives” (Polkinghorne, 1988) was undertaken on each of the child-centered stories. Clandinin and Connelly’s (2000) advice in relation to the interconnectedness of themes and issues within and across narratives prompted a search “for patterns, narrative threads, tensions and themes, either within or across an individual’s experience and the social setting” (p. 132). While such analysis is not widely advocated within the field of narrative inquiry, Clandinin and Connelly (2000, p. 131) do offer guidance on how such analysis can, and should, be conducted, especially by novices within the field. They describe the conversion of field texts into research texts as complex, but necessary, and in common with others (e.g., Braun & Clarke, 2006; Bryman, 2008; Creswell, 2009; Robson, 2002), highlight the importance of “careful coding” strategies in this transformative process. While this method upheld the paramountcy of each narrative, there was scope for a broader analysis of the collective life stories, thus revealing the many shared elements of experience. Consequently, a foundation was established, upon which each of the child-centered narratives could be built and presented.

Discussion of Methodological Findings

Through deep engagement with parents and their child-centered narratives, the children’s experiences emerged and by extension their voice was heard and embedded within the study. Furthermore, the use of visual elicitation methods and an I–Thou framework of data analysis proved integral to enabling the ecological development of the children’s voice and consequently their narratives. As indicated through the findings presented in this article, both their voice and narrative were organized in and impacted heavily by place and time. Through a consequent critique of the ways in which these young voices were constructed and communicated, the significance of the roles and actions of others dominated, demonstrating “lives lived in relationship and across time and place” (Craig, 2009, p. 105). We now present an overview of these central elements of place, time, role, and action in relation to the methodological findings of the research.

Children’s Perspectives on Place

The concept of place, central to both Bronfenbrenner’s (1979) ecological theory of child development and much theory surrounding the development of identity and voice (Arendt, 1998; Bakhtin, 1981; Daiute & Cynthia, 2003) featured strongly in each child-centered narrative. As the central research question sought to understand the experiences of young children and their parents as they navigated the Irish Early Years’ Education System, gaining the children’s perspectives in relation to the places where their educational experiences occurred was of paramount importance. As mentioned previously, the nine children at the center of this study were aged between 3 and 6 years and presented with various modes of communication. Thus, their voices emerged through the use of photo-elicitation and artifacts which were incorporated into the parent’s narratives.

The ways that children were understood varied in respect of the place they or their parents occupied at any given time. From a methodological stance and reflective of the work of many theorists on narrative research methods (Clandinin et al., 2007; Georgakopoulou, 2003; Kim, 2016), understanding the importance of place, within and surrounding narratives emerged an integral element of these stories also. The research findings reinforced this point. As mentioned, through photo-elicitation methods, the children’s perspectives gradually emerged with the significance of place dominating their responses. In this way, authentic child-centered narratives were gathered, interpreted, and reconstructed.

On some occasions incorporating the images of, for example, the children’s preschools and schools produced a wider discussion relating specifically to the child’s experience within these settings and thus further emphasized the importance of the children’s perspectives within the narratives. In such instances, parents began by referring to the images used to engage with their children about navigating the education system and then elaborated to present their child’s perspective. Below, Alice speaks about her son’s preschool, all the while holding a photo of the front of the brightly colored building in her hand. She looks at it closely, smiling, and reflects,

James just runs in the door. You see there’s never an issue about autism with them. They’re not coming over to you with every small thing because they get it, they understand it…. They show the same love and attention to James as we do as parents. They love him as a child, as himself. No wonder he gets excited when he sees the place.

Michael refers to an image of his youngest son Adam’s preschool. He speaks in admiration of its remarkable structure asserting that “the actual physical structure of the playschool is amazing; a three storey Victorian old house. On the grounds then there’s probably 15 acres. So, you get me? Amazing.” Interestingly, he makes an association between the physical aspects of this place and the educational philosophy behind it,

The name of the place even, it has its philosophy there in the title; freedom. Adam gets that freedom there…. They have geese on the farm, chickens, like Adam feeds the pigs and stuff. Look at it like. No wonder he loves it. There’s just more interaction rather than being stuck in your typical classroom. Totally different to other preschools.

At other times, parents recollected their children’s responses, in particular, locating these within the wider child-centered narrative to include their own perspectives also. An extract from Sandra’s narrative presents her son, Brian’s reaction to the autism specific preschool he attended the previous year. Sandra incorporated both an image of the preschool and a DVD of Brian’s memories into their collective story of educational navigation:

I still remember when I saw it first…he left here at twenty past eight in the morning and he didn’t get home till three every day…and he loved it he absolutely loved it. He loved the bus, he loved the staff, he still cries when I show him the DVD they did for him. He loves looking at all his memories. Do you know he actually said “why did I have to leave why mammy?” He had to get a cognitive development test you know at the end of the 2 years and I remember I was nearly crying because he had to leave there because he didn’t have an intellectual disability. Like I know that sounds terrible but it was such a good place. I just was half hoping he could stay because it was his world.

Later, Sandra used an image of an empty primary school classroom to highlight the differences between hers and Brian’s perspective on place. For Sandra, this empty classroom was representative of deeper issues preventing the inclusion of her son in primary education and highlighted for her, some of the differences between early years and school settings and special and mainstream education provision, culminating in what she felt was a complete lack of understanding of her son and other children like him by certain educational professionals,

I was like, there’s nothing in there like nothing, not even books or anything…. I was shocked, I wasn’t expecting it…. I started bawling crying, I was there shaking saying “my son is a person you know”. I said “come on you have a school there you could surely go in and get a few tables and chairs or books” and she said it had to be specialized equipment and I said it didn’t. They just needed something, anything.

From Brian’s perspective, however, the same empty classroom was simply “his school” and invoked only positive reactions within him:

My friends, were all like, “look at the way Brian looks at that same room. He is loving it and he doesn’t seem to mind one bit that there is nothing there and no work for the moment.” And if you show it to him, he doesn’t. It’s his school…. He really didn’t care he just loved it. I said “do you know what? This is bothering me and it’s not bothering him at all, so, I took a leaf out of his book and I said at the end of the day if he’s happy that’s all that matters.”

The images that exhibited the inside of the children’s preschools and schools all included stills of the children at play, eating lunch, working at tables, and so on. Therefore, the children’s interaction with these places, rather than the places themselves, became the clear and immediate focus of the resulting narrative. Ellen’s discussion surrounding an image of her son, Harry, completing puzzles at preschool demonstrates this. As she skims through different photos, she stops on one in particular, her expression becoming more animated as she speaks, before a look of concern crosses her face as she contemplates his future beyond preschool:

I knew he would just soak it up, he is so clever, he is like a sponge. He can read words already, you can hear him at the numbers and stuff. He loves academic type things so I know he’ll excel along those lines in school. That’s my big thing like. If he had to go to a unit because of his autism that that would affect his education. That’s my worry because I think he’s really clever and will probably do very well academically.

As Ellen’s narrative indicates, photographs depicting the children among their peers appeared to hold significance for the parents involved. Moreover, such images encouraged parents to examine their children’s inclusion in these educational places. Below, Brenda explores this concept further in relation to her son Sam’s preschool experience, highlighting in particular how important it was for her and for him to know other children who would be starting school with him:

Now, Sam didn’t really have any major reaction to most of the images, but he did keep pointing at his preschool, well especially at Elaine, the manager. You see we’re half connected to her, so it made all the difference for him. She knew him since he was a little baby…so then there wasn’t all this drama about him having autism or whatever…. And he did so well there. You see he was with the other children who were going to be in school with him in Junior Infants, that meant everything to us, and I think, in his own way, it meant a lot to Sam.

One of the parents, Hannah, used images that had been given to her by the principal governing the early intervention autism unit to help her twin sons, Noah and Max, make the transition from home to preschool. A photo of her sons’ classroom elicited an extensive response from her, relating especially to the prospective inclusive educational experience of her children:

They gave us these images [showing buildings, classroom, teacher, SNAs, etc.] in advance to make things easier for them going in. See here, the classroom has everything labeled, they have their own areas…. And I’m delighted and I think they will be delighted because they will bring other pupils in every week to be with them like and the whole school learns about autism and when the boys go in then they are with the whole school, at play time mostly but maybe at other times too. They will know their names and that they have autism and they will all understand what that means. And that can only be good for my boys.

Hannah’s words highlighted a central feature of many narratives: a gradual move from their function representing the background to a story toward the creation of a new foreground (Kim, 2016). The importance of time emerged dominant across the narratives and therefore warranted further exploration of the children’s perspectives in this regard.

Children’s Perspectives Over Time

As with every narrative, temporality was an integral factor in both understanding and critiquing the coconstruction of these children’s voices. This temporal approach emphasized the sentiment of the moment narrated, ensuring the moment could be interpreted as active rather than passive (Bruner, 1986), thus presenting the “historicity” of the children’s current educational experiences over the course of the research and beyond (Kim, 2016, p. 75). Change over time so deeply encompassed within the chronosystem (Bronfenbrenner, 1979) emerged as a central tenet in all the child-centered stories. While illustrating how children’s voices developed over time was a positive outcome of the methodological design, so too, was the recognition of these changes by the parents involved. In the following extract, Alice discusses her son James’ reaction to an image of his preschool, highlighting how this response has changed over time. She describes the changes in James’ reaction to the images of his preschool, crediting his educators for the development of his positive perspective:

I mean he didn’t say or do anything but he looked at it, and looked happy. That’s because he associates it with things he likes doing. Before, he wouldn’t have stood and looked, he wouldn’t have acknowledged it. I mean James is gone from kinda doing nothing…that sounds horrible but he did nothing…he didn’t play with anything, he didn’t like anything, you wouldn’t be able to say “James loves….” He didn’t like anything. And now it’s like he loves Sesame Street songs and rhymes, he can clap his hands and stomp his feet with the songs. He’s saying parts of the alphabet like “a” and “h” and “s” and that’s all from school. Like I’d love to be here saying “oh I did that” but I didn’t.

An excerpt from Hannah’s interview echoes Alice’s deeper understanding of her child’s responses and emphasizes the importance of artifacts in her own realization of this. An image of her son, Noah, completing a matching activity is used as a stimulus to discuss both his and her own positive educational experience:

One day, one of the tutors commented that Noah was doing really well with matching pairs and now at the time Noah wasn’t responding to his name, he was in his own little world…. I was thinking, how could this be Noah. And then she sent me the video and there he was matching absolutely everything, based on size, based on colour. It was unbelievable. It was like I was after getting a smack into the head. I was shocked. I was looking at it and looking at it and looking at it saying “oh my God”…. To look at these pictures to see the stuff he can do is just unbelievable and to see the little face of my son and he absolutely loving it.

Over time, the photo-elicitation methods led Sandra’s son, Brian, to speak about happy and sad times in his school. He had always told his mother he didn’t like break times but on this occasion, he elaborated further on the reasons for this, while repeatedly referring to the gate that surrounded his school’s autism unit:

So he picked up the photo of the outside of school and then I was kind of quizzing him about playtime and about the breaks and he said they would be in but if they were out that there is a gate around them and they aren’t allowed pass the gate to go out and the other children aren’t allowed pass the gate to go into them. I nearly died, I nearly dropped there and then. So I rang the school and I said “when it’s break time why can’t they be out playing in the yard with the other children?” and he [the principal] was like “sure they can’t be out around the yard with everyone!” and I was like “are you serious? Why can’t they like?!” and he actually said “because they are in the unit.” Imagine, that was his only reason. I was stunned I actually said “just because these children are in the unit does not mean they are animals like. Let them play with the other children for God’s sake”…. So Brian ended up going in and he absolutely loved it…the minute he went in there he was like “mam, I played this cool game today” like I mean he was telling me stuff about friends in school, I had never heard that before.

This excerpt highlights the importance of incorporating the children’s own perspectives into the parent narratives and also demonstrates how these children’s voices can be represented to bring about social change. With such extracts, it was important to move beyond the didactic I–Thou relationship to encompass They, thus, enabling a critical and ecological narrative analysis that focused upon not only relationships but the actions that impacted these (Andrews et al., 2013; Kim & Latta, 2009), oftentimes involving the “othering” of children on the autism spectrum. This multirelational approach accounted for both the reproductive element of such imbalanced power relations but also represented the potential constructive power of these child-centered narratives. Critical reflection on these narratives enabled the study of such grand narratives produced in society, while also realized the original aspiration of the study, to have the capacity to influence and, perhaps, constitute such framing narratives on the inclusive education of young children on the autism spectrum.

Conclusion

As mentioned at the outset, the child’s voice in this study is understood as encompassing the many ways that a child’s experiences, perspectives, and ideas can be communicated, through, for example, gesture, facial expression, laughter, and bodily movements (McCarthy & Moloney, 2010; Moloney & McCarthy, 2018). It is clear from the methodological findings that through the use of parental narrative, photo-elicitation, and artifacts, the voices of the nine children on the autism spectrum at the center of this study were activated, gathered, and embedded in this study. Their experience and voice is expressed in terms of how they “run in the door,” “get excited when they see the place,” “clapping their hands, stomping their feet to songs,” “saying parts of the alphabet,” “feeding animals,” “interacting with their peers,” and “being loved by and loving the staff.”

The methodological findings further underscore the intercontextual and ecological nature of the lived experience which frames the study (Bronfenbrenner, 1979). Within this ecological stance, the lived experience and identity of every child is collectively co-constructed and relies on the relationships, interactions, and wider narratives experienced by and impacting on children within their microsystem. This study not only recognized the significant influence of interactions within the child’s social context, it also emphasized the role of parents in the symbiotic shaping of the child’s identity and consequently, their voice. Without this recognition of the inextricable link between the lived experiences of children on the autism spectrum and the co-construction of their voice and identity, there is a genuine risk of imposing an identity on our children that is based entirely on the perspectives of others. Adults must be aware of the many values, beliefs, and narratives that guide all of our interactions with our children as our responses to these interactions collectively construct their voices. The use of visual elicitation methods, together with the I–Thou method of narrative analysis within this study, enabled these children’s voices to come to the fore. Including these children’s perspectives also stimulated changes, not only within the adults involved but, in some cases, within the wider social context of these families. If, as suggested by Bronfenbrenner (2005, p. 101), all our actions create “conditions characterizing the lives” of these children, our research must be intercontextual and carried out in partnership with important stakeholders in these children’s education to ensure that our actions enhance, rather than impair, these young lives. Then, and only then, can the voices of children on the autism spectrum be truly heard.

Footnotes

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.

ORCID iD

Sarah O’Leary

Notes

References

Allen

(2012). Photographs and stories: Ethics, benefits and dilemmas of using participant photography with black middle-class male youth. Qualitative Research, 12, 443–458.

Amankwaa

(2016). Creating protocols for trustworthiness in qualitative research. Journal of Cultural Diversity, 23(3), 121–127.

Andrews

Squire

Tamboukou

(2013). Doing narrative research (2nd ed.). Sage.

Arendt

(1998). The human condition (2nd ed.). University of Chicago Press.

Atkinson

(2009). Teachers responding to narrative inquiry: An approach to narrative inquiry criticism. Journal of Educational Research, 103(2), 91–102.

Bagnoli

(2009). Beyond the standard interview: The use of graphic elicitation and arts-based methods. Qualitative Research, 9, 547–570.

Bakhtin

M. M.

(1981). The Dialogic Imagination: Four essays. In Emerson

Holquist

(Trans.). University of Texas Press.

Benson

P. R.

(2018). The impact of child and family stressors on the self-rated health of mothers of children with autism spectrum disorder: Associations with depressed mood over a 12-year period. Autism, 22(4), 489–501.

Boggis

(2011). Deafening silences: Researching with inarticulate children. Disability Studies Quarterly, 31(4), 13–17.

10.

Braun

Clarke

(2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.

11.

Broderick

A. A.

Ne’eman

(2008). Autism as metaphor: Narrative and counter‐narrative. International Journal of Inclusive Education, 12(5–6), 459–476.

12.

Bronfenbrenner

(1979). The ecology of human development: Experiments by theory and design. Harvard University Press.

13.

Bronfenbrenner

(2005). Making human beings human: Bioecological perspectives on human development. Sage Publications.

14.

Bruner

(1986). Actual minds, possible worlds. Harvard University Press.

15.

Bryman

(2008). Social research methods (3rd ed.). Oxford University Press.

16.

Buber

(1970). I and thou. Touchstone. (Original work published 1923)

17.

Cavarero

(2000). Relating narratives: Storytelling and selfhood. Routledge.

18.

Chase

S. E.

(2018). Narrative inquiry: Toward theoretical and methodological maturity. In Denzin

N. K.

Lincoln

Y. S.

(Eds.), The Sage handbook of qualitative research (5th ed., pp. 546–560). Sage Publications.

19.

Chenail

R. J.

(2011). Interviewing the investigator: Strategies for addressing instrumentation and researcher bias concerns in qualitative research. The Qualitative Report, 16(1), 255–262.

20.

Clandinin

D. J.

Connelly

(2000). Narrative inquiry: Experience and story in qualitative research. Jossey-Bass.

21.

Clandinin

D. J.

Pushor

Orr

A. M.

(2007). Navigating sites for narrative inquiry. Journal of Teacher Education, 58(1), 21–35.

22.

Clarke

(2016). Shrouded in privilege: Reflexively exploring a troubling experience in team research. Reflections: Narratives of Professional Helping, 22(4), 26–37.

23.

Cohen

Manion

Morrison

(2000). Research methods in education (5th ed.). Routledge Falmer.

24.

Connolly

(2007). Exploring narrative inquiry practices. Qualitative Inquiry, 13(4), 450–453.

25.

Connolly

Gersch

(2013). A support group for parents of children on a waiting list for an assessment for autism spectrum disorder. Educational Psychology in Practice, 29(3), 293–308.

26.

Coulter

Michael

Poynor

(2007). Storytelling as pedagogy: An unexpected outcome of narrative inquiry. Curriculum Inquiry, 37(2), 103–122.

27.

Craig

(2009). Learning about reflection through exploring narrative inquiry. Reflective Practice, 10(1), 105–116.

28.

Creswell

J. W.

(2009). Research design: Qualitative, quantitative and mixed methods approach (3rd ed.). Sage Publications.

29.

Croghan

Griffin

Hunter

Phoenix

(2008). Young people’s constructions of self: Notes on the use and analysis of the photo-elicitation methods. International Journal of Social Research Methodology, 1, 345–356.

30.

Daiute

Cynthia

(2003). Narrative analysis: Studying the development of individuals in society. Sage.

31.

DeLuca

J. R.

Maddox

C. B.

(2016). Tales from the ethnographic field: Navigating feelings of guilt and privilege in the research process. Field Methods, 28(3), 284–299.

32.

Department of Children and Youth Affairs. (2016). Better start access and inclusion model. www.aim.gov.ie/

33.

Department of Education and Skills. (2017). Circular 0013/2017—Circular to the management authorities of all mainstream primary schools special education teaching allocation. https://www.education.ie/en/Advanced-Search/?q=0013/2017

34.

Eakin

P. J.

(1999). How our lives become stories: Making lives. Cornell University Press.

35.

Georgakopoulou

(2003). Plotting the ‘right place’ and the ‘right time’: Place and time as interactional resources in narrative. Narrative Inquiry, 13(2), 413–432.

36.

Gilroy

S. P.

McCleery

J. P.

Leader

(2018). A community-based randomized-controlled trial of speech generating devices and the picture exchange communication system for children diagnosed with autism spectrum disorder. Autism Research, 11(12), 1701–1711.

37.

Gioia

D. A.

Corley

K. G.

Hamilton

A. L.

(2013). Seeking qualitative rigor in inductive research: Notes on the Gioia methodology. Organizational Research Methods, 16(1), 15–31.

38.

Gorlin

J. B.

McAlpine

C. P.

Garwick

Wieling

(2016). Severe childhood autism: The family lived experience. Journal of Paediatric Nursing, 31(6), 580–597.

39.

Gough

Madill

(2012). Subjectivity in psychological science: From problem to prospect. Psychological Methods, 17(3), 374–384.

40.

Gray

D. E.

(2014). Doing research in the real world (3rd ed.). Sage Publications.

41.

Hendry

(2009). Narrative as inquiry. Journal of Educational Research, 103(2), 72–80.

42.

Hennink

Hutter

Bailey

(2011). Qualitative research methods. Sage Publications.

43.

Holder

D. E.

(2013). Voices from the spectrum: The positive impact of autism on the family in three societies. Caribbean Journal of Psychology, 5(1), 40–51.

44.

Hones

D. F.

(1998). Known in part: The transformational power of narrative inquiry. Qualitative Inquiry, 4(2), 225–249.

45.

Hyvärinen

(2008). Analysing narrative and storytelling. In Alasuutari

Bickman

Brannen

(Eds.), The Sage handbook of social research methods (pp. 447–460). Sage Publications.

46.

Keenan

Dillenberger

Moderato

Rottgers

H. R.

(2010). Science for sale in a free market economy: But at what price? ABA and the treatment of autism in Europe. Behaviour and Social Issues, 19, 121–141.

47.

Kim

J. H.

(2016). Understanding narrative inquiry: The crafting and analysis of stories as research. Sage Publications.

48.

Kim

J. H.

Latta

M. M.

(2009). Narrative inquiry: Seeking relations as modes of interactions. Journal of Educational Research, 103(2), 69–71.

49.

Krcek

T. E.

(2013). Deconstructing disability and neurodiversity: Controversial issues for autism and implications for social work. Journal of Progressive Human Services, 24(1), 4–22.

50.

Lloyd

Gatherer

Kalsy

(2006). Conducting qualitative interview research with people with expressive language difficulties. Qualitative Health Research, 16, 1386–1404.

51.

Lyons

(2007). Narrative inquiry: What possible future influence on policy and practice? In Clandinin

(Ed.), Handbook of narrative inquiry: Mapping a methodology (pp. 600–631). Sage Publications.

52.

Lyons

LaBoskey

V. K.

(2002). Narrative inquiry in practice: Advancing the knowledge of teaching. Teachers College Press.

53.

Mattron

(2011). Changing perceptions: The power of autism. Nature, 479, 33–35.

54.

McCarthy

Moloney

(2010). Development of a framework for action for the inclusion of children with special needs in early childhood education settings.

55.

McPhilemy

Dillenburger

(2013). Parents’ experiences of applied behaviour analysis (ABA)-based interventions for children diagnosed with autistic spectrum disorder. British Journal of Special Education, 40(4), 154–161.

56.

Ministry of Education. (2017). Te whāriki: He whāriki mātauranga mō ngā mokopuna o aotearoa: Early childhood curriculum. Learning Media. (Original work published 1996).

57.

Moloney

McCarthy

(2018). Intentional leadership for effective inclusion in early childhood education and care: Exploring core themes and strategies. Routledge. http://www.education.ie/en/Schools-Colleges/Information/Early-Years.pdf

58.

Morris

Davies

(2018). Being both researcher and subject: Attending to emotion within collaborative inquiry. In Loughran

Mannay

(Eds.), Emotion and the researcher: Sites, subjectivities, and relationships (pp. 229–244). Emerald Publishing Limited.

59.

Muylaert

C. J.

Sarubbi

Gallo

P. R.

Neto

M. L.

(2014). Narrative interviews: An important resource in qualitative research. Journal of the School of Nursing, 48(2), 184–189.

60.

National Council for Curriculum and Assessment. (2009). Aistear: The early childhood curriculum framework. http://www.ncca.biz/Aistear/pdfs/PrinciplesThemes_ENG/PrinciplesThemes_ENG.pdf

61.

National Council for Special Education. (2018). Comprehensive review of the special needs assistants scheme. http://ncse.ie/wpcontent/uploads/2018/05/NCSE-PAP6-Comprehensive-Review-SNA-Scheme.pdf

62.

Noddings

(1984). Caring: A feminine approach to ethics and moral education (2nd ed.). University of California Press.

63.

Noddings

(1991). Stories in dialogue: Caring and interpersonal reasoning. In Witherell

Noddings

(Eds.), Stories lives tell: Narrative and dialogue in education (pp. 32–69). Teachers College Press.

64.

Pellicano

Stears

(2011). Bridging autism, science and society: Moving toward an ethically informed approach to autism research. Autism Research, 4(4), 271–282.

65.

Petrone

D. A.

(2017). Informing practices in narrative inquiry: A review of complementary perspectives. Linguistics and Education, 37, 89–91.

66.

Pezalla

A. E.

Pettigrew

Miller-Day

(2012). Researching the researcher-as-instrument: An exercise in interviewer self-reflexivity. Qualitative Research, 12(2), 165–185.

67.

Polkinghorne

(1988). Narrative knowing in the human sciences. State University of New York Press.

68.

Robson

(2002). Real world research: A resource for social scientists and practitioner-researchers (2nd ed.). Blackwell Publishing.

69.

Stewart

Gapp

Harwood

(2017). Exploring the alchemy of qualitative management research: Seeking trustworthiness, credibility and rigor through crystallization. The Qualitative Report, 22(1), 1–19.

70.

Teachman

Gibson

B. E.

(2018). Integrating visual methods with dialogical interviews in research with youth who use augmentative and alternative communication. International Journal of Qualitative Methods, 17, 1–12.

71.

Teachman

Gibson

Mistry

(2014). Doing qualitative research with people who have communication impairments. SAGE Research Methods Cases, 3–24. http://doi.org/10.4135/978144627305013514660

72.

United Nations. (1989). United Nations Convention on the Rights of the Child (UNCRC). Author.

73.

Waite

(2012). Paperback Oxford English dictionary (7th ed.). Oxford University Press.

74.

Whitehead

Dorstyn

Ward

(2015). Psychological adjustment in families affected by autism spectrum disorder. Journal of Developmental and Physical Disabilities, 27(5), 703–717.

75.

Whyte

(2015). The initiating parent voice: Placing the child at the heart of the dialogue about learning. Early Childhood Folio, 19(2), 8–13.

76.

Willey

L. H.

(2014). Pretending to be normal: Living with Asperger’s syndrome (autism spectrum disorder). Jessica Kingsley Publishers.

77.

Zhang

(2015). The voice of the child in early childhood education research in Australia and New Zealand: A systematic review. Australasian Journal of Early Childhood, 40(3), 97–104.