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

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 Lámh ¹ 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 strategy ² 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:

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.

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.