‘Seeing is believing’: Exploring the perspectives of young autistic children through Digital Stories

Abstract

Young autistic children are amongst the most scrutinised and assessed in their everyday lives, often leading to characterisations and descriptions that focus on their difficulties and challenges rather than on their abilities, strengths and positive experiences. Consequently, much discussion about autistic children tends to forget that they are children first. While research has considered the transitions of autistic children from primary to secondary school, and from secondary to post-compulsory contexts, there is almost no research focusing on transitions for young autistic children from nursery to primary schools. There is also very limited representation of their voices and experiences being explored, promoted, and valued directly as evidence in their own right. We aimed to address this gap through a project funded by the Froebel Trust and co-constructed with practitioners and families. The project used an innovative Digital Storytelling methodology to explore the experiences and perspectives of five 4-year-old autistic children, and their families, as the children prepared to make the transition from an inclusive day nursery to primary school. This paper provides an overview of the rationale, methodology, and findings of the project to address two related questions: How do we listen to those children who ‘have no words’?; and what do we learn from them when we do?

Introduction

‘Oscar is not able to give his own views’ (EHC plan dated May 2018)

This statement provides a powerful indication of the nature of the problem that we highlight, and seek to address, in this paper. It comes from Section A of Oscar’s ¹ Education Health and Care Plan (EHC plan); Oscar is a 4-year-old autistic ² boy and one of the participants in our project, which involved academics, early years practitioners, autistic children and families. The EHC plan is a statutory document in England that aims to describe a child’s areas of special educational needs, the provision that must be made to meet those needs, and the child’s strengths and interests (Department for Education (DfE)/Department of Health (DoH), 2015). In preparing the document, local authorities are required to seek the views of parents and children to contribute their perspectives alongside the formal assessments of various agencies and professionals (DfE/DoH, 2015). Section A of the plan must also include the child’s perspective. These mandates are contained within the Special Educational Needs Code of Practice: 0–25 years (DfE/DoH, 2015) and represent a strengthening of the role of children and families’ views in making decisions about education following the Children and Families Act (2014). Specifically, the Code of Practice (2015) states that:

Local authorities must ensure that children, their parents and young people are involved in discussions and decisions about their individual support and about local provision. (emphasis in original, p.20)

And, crucially, that:

Local authorities must not use the views of parents as a proxy for young people’s views. Young people will have their own perspective and local authorities should have arrangements in place to engage with them directly. (emphasis in original, p. 22)

Nevertheless, it is clear that these requirements did not extend to Oscar insofar as the representation of his own voice was concerned. Indeed, Oscar is not alone in having his views overlooked in this context. Recent evidence about how children’s views are included in ECH plans indicates that out of 184 plans reviewed, very few explained the methods for accessing views and there were doubtful claims about the first-person nature of many children’s views gathered (Palikara et al., 2018). Moreover, the plans were highly variable in detail and quality and tended to focus disproportionately on areas of difficulty or challenge:

‘Although most of the EHC plans included some information on children’s abilities/strengths, the analysis of these units showed that they were rather limited in scope and revealed little about what the child was good at.’ (n.p.n)

Beyond the EHC planning process, autistic children’s participation in social research aimed at understanding their experiences ‘. . .lags behind that of their non-autistic peers [such that]. . .our understanding of autistic children’s experiences from their perspective is limited’ (Ellis, 2017; p.24). This is within a context where there is an acknowledgment of the importance of making extra efforts to support and enable disabled children’s representation and voice due to the ‘double denial’ (Lundy, 2007; p.935) that they experience, that is, being denied participation due to assumptions about the lack of competence of being a child and being disabled. However, there are examples of autistic children being specifically excluded from projects focusing on children and young people who do not use speech for communication (Raibee et al., 2005). The authors stated that this was because the issues under scrutiny were ‘. . .more specific to communication impairments’ (p.391). Given that autism is diagnosed according to social and communication difficulties this exclusion seems especially surprising. Elsewhere, autistic children are described as particularly ‘hard to reach’ in relation to their participation in decision-making due to their own ‘complex needs’ in communicating (Franklin and Sloper, 2009; p.4), thereby reinforcing a medical model discourse that the child is to blame for their own failure to communicate or participate in typical ways.

Le Francois and Coppock (2014; pp.165–166) argued that the rights of children diagnosed with psychiatric disorders (which includes autistic children) or, in their words, ‘psychiatrised children’, is ‘a neglected area. . .of childhood studies’. Brady (2014; p.226) suggests this neglect is largely because behaviours are viewed in such a pathologised way that children are ‘regarded as incompetent, impulsive, irrational, incapable of being responsible’. Such a view aligns strongly with other critiques of narratives that have tended to represent disabled children as being dependent and in need of care (Davis et al., 2017). In short, children are denied to be ‘knowers’ (Le Francois and Coppock, 2014; p.166) in their own lives; viz. denied the rights to be children with agency, competencies and skills, interests and preoccupations in the same way as other children. In early childhood research, such a stance is completely at odds with the widely espoused view that all children, including very young children and those with more complex needs, are agentic and ‘active co-constructors of meaning in their own lives’ (Pascal and Bertram, 2009; p.255). Thus, young autistic children seem to be multiply marginalised when it comes to their participation and the representation of their voices in activities, processes, and research that claim to be interested in their experiences. Quite simply, Oscar was not accorded the status of a knower in his own life and this was something we wanted to change.

Taking a Froebelian lens to autistic children’s transitions from nursery

The transition to a new school can be anxiety-provoking and difficult for all children, but can be experienced as especially challenging for autistic children and their parents due to the many changes in routines and expectations that take place (Stoner et al., 2007). This is also a time when the EHC plan is crucial since it becomes one of the main tools for communication between the preschool and the new school about the transitioning child and their support needs. Nuske et al. (2019) conducted a systematic review on the difficulties and strategies for success for autistic students transitioning to new schools. Out of the 27 studies identified, ten focused on the preschool to Primary transition, and yet none included the views or perspectives of the children themselves. The existing evidence, therefore, about young autistic children’s transitions to Primary school comes only from teachers and parents; children’s voices are once again absent. Consequently, there is a major gap in our knowledge about the role of children’s perspectives during this critical time, along with questions about how their voices and perspectives can be accessed and what is useful to know.

We were fortunate in being awarded funding from the Froebel Trust for our project and so at the heart of our approach was respect for the core Froebelian principles of early childhood relating to:

• - the integrity of childhood in its own right;

• - the uniqueness of every child’s capacity and potential;

• - the holistic nature of the development of every child;

• - the relationship of every child to family, community and to nature, culture and society;

• - the role of play and creativity as central integrating elements in development and learning; and

• - the right of children to protection from harm or abuse and to the promotion of their overall well-being (The Froebel Trust, not dated).

In agreement with others (e.g. Hoskins and Smedley, 2019), we are aware that such principles are increasingly denuded in practice in the early years largely due to the focus on accountability, academic skills, standardisation, and ‘school readiness’ that is ingrained within the Early Years Foundation Stage (EYFS) statutory framework in England (Standards & Testing Agency, 2018). As Hoskins and Smedley (2019; p.74) suggest, Froebelian principles provide a ‘counter discourse’ to this narrative by focusing instead on the holistic nature of childhood that prioritises child-led play, exploration, and expression.

Such a holistic focus also aligns strongly with the primacy of the child’s perspective and, therefore, the importance of finding ways to access children’s voices. As Mortimer (2004; p.170; our emphasis) makes clear:

‘When we communicate with young children we need to attend to their whole development and lives and not just certain aspects of it. . . unless children are allowed to make their needs known in whatever way is available to them we cannot possibly ‘listen’ to those children who have no words’.

While there are many examples of creative, usually visual, methods being used in early childhood research to access children’s views and perspectives in different ways, these often rely on a verbal discussion of a drawing, photograph, painting, collage etc. to make meaning (e.g. Nyberg, 2019; Pascal and Bertram, 2009; Waller and Bitou, 2011), including when the discussion or line of questioning is supported by symbol-based communication or cue cards (e.g. Franklin and Sloper, 2009; Lewis et al., 2008; Raibee et al., 2005). Even Clark and Moss’ (2001) widely used, multi-method Mosaic approach includes a structured interview with children (Tisdall, 2016). Blaisdell (2012; p.12) highlights important tensions between the laudable aims of the Mosaic approach to provide a child-centred space for enabling children’s voices to be heard, and the more directive, adult-led initiation of activities contained therein, including the requirement for children to ‘participate appropriately’. This means that those who may respond or behave differently (from adult expectations) are likely to be excluded.

Consequently, we drew inspiration from Morris’ (2003) work. She states that if we want to include children with significant communication and / or cognitive difficulties then we need to focus on them specifically and adapt our ‘research tools to suit each child or young person’ (p.344). Our own work especially chimes with Morris’ (2003; p.345) idea of ‘being with’ young children as a methodological approach to getting close to their experiences. For Morris (2003) this meant spending time with and observing the child, writing up notes, asking them questions where appropriate, and gathering a range of views from people who know the child well, in line with more embedded and ethnographic approaches to understanding children’s experiences (e.g. Davis et al., 2017). We extended the idea of ‘being with’ through using a Digital Story methodology which, rather than relying on researcher reports of the child’s views and experiences, aimed to access children’s worldviews more directly by representing children’s actions and behaviours via short videos, which were filmed using standard digital video cameras and small Wearcams attached to the children’s tops.

Digital Stories for enabling voice and participation in the early years for autistic children

Digital Stories is a methodology for enabling and empowering the voices and perspectives of (usually) marginalised groups; grounded within the ancient oral storytelling traditions of African and Jewish cultures (Lambert, 2010). Using stories to reveal meaning, without the requirement for literacy, promotes perspective-taking and engagement in ways that move beyond the confines of written documents (Lambert, 2013). The power of the digital (primarily video) in this storytelling context is that experiences and perspectives can be created, shared, and jointly witnessed without reliance on the spoken word. Instead, different ways of communicating with the world become available and of equal value in expressing preferences, interests, skills and desires. We suggest it is a methodology that potentially allows us to ‘be with’ autistic children (Morris, 2003) who may have ‘no words’ (Mortimer, 2004) to find out more about their perspectives on the world. Moreover, as we and others have argued (Guldberg et al., 2017; Parsons et al., 2015), Digital Stories can serve as powerful evidence in their own right about the valued practices and experiences that shape our understanding of the capabilities and interests of autistic children. Thus, we felt this was an approach that aligned very strongly with our aspiration to position children like Oscar as knowers in their lives. More widely, we wanted to position the children as knowers within the context of planning for the transition to primary school, and so wanted to include their views and perspectives alongside those of families and practitioners who are all involved with the process. Specifically, the project was designed to explore the voices (experiences, perspectives, interactions) of young autistic children as they prepared for the transition from nursery to primary school, and promote the perspectives of young children with autism, explored via Digital Stories, as valid evidence of experiences in their own right. As well as enabling us to get closer to the children’s perspectives on their world, this process helped us to develop a framework that can be used to support practitioners to think more holistically about autistic children, which is summarised in the Findings section below.

Methodology

Team and context

Our team comprises researchers in Education and Psychology from the University and early years’ practitioners from Aviary Nursery: a fully inclusive day nursery in the South of England. We are all members of the Autism Community Research Network @Southampton (ACoRNS), which is a unique, education-focused initiative aimed at bridging the gap between research and practice through co-constructing the evidence base by placing children’s voices and perspectives at the centre of what we do (see Parsons and Kovshoff, 2019 for more details). We applied together for the funding from the Froebel Trust and have shared in the development and implementation of all aspects of the project. Aviary Nursery operates on a free-flow basis where child-led and initiated play and exploration are prioritised.

Participants

The project was focused on five 4-year-old autistic boys ³ who transitioned to primary school in September 2018: Oscar, Henry, Oliver, Luke, and Riley. Information relevant to diagnostic status was accessed via the children’s ECH plans. The children were chosen for participation based on knowledge of the nursery staff regarding diagnostic information about the children coupled with knowledge of the families and their potential willingness to engage in this process with us. Many discussions took place with families before the more formalised process of informed consent began (information sheets and consent forms etc.), and families remained in regular contact with the team at the nursery throughout the project. As well as the centrality of children’s voices and perspectives, the Digital Stories methodology also enabled us to recognise and reflect that nursery staff and parents play crucial roles in mediating and facilitating transition processes for and with children. Thus, it was critical that their views and perspectives were included too, both about the child and also the practices and experiences that support or hinder successful transition experiences. Eight parents /carers participated in on-camera interviews and off-camera discussions: mothers and fathers for two of the boys, mothers for two of the children, and the mother and grandmother of the fifth child. Four staff members from the nursery participated in on-camera interviews: two early years’ practitioners (1 male, 1 female), the Inclusion Teacher (male), and the Nursery manager (female; co-author KI). Most other Aviary staff were involved indirectly though being filmed interacting with children.

Procedural ethics

With a project methodology that involves videoing young children and making those videos available for others to see, there were major ethical considerations to be managed. We discuss these further in the ‘Ethical considerations and conclusions’ section in the Discussion and focus here on the more procedural aspects. All of our work was completed with full ethical approval from the University of Southampton (Ref# 31478.A3). Informed consent from staff and families included agreement that individuals’ first names could be used in the videos, including the children’s first names. Children’s assent to participation was navigated on an ongoing basis via staff who knew them well. A particularly innovative aspect of the project was the use of Wearcams which provided footage of children’s interactions and choices from their own perspectives ⁴ . Mostly children quickly forgot the cameras were there, and were happy to wear the small cameras on a vest. In the process of conducting the research, we were mindful of those children who were not the five focal children but their peers at the nursery. Permission from parents of these children was also obtained for the children to be shown in the videos. Regular discussion between the lead staff at the nursery and parents was ongoing throughout the project. All video footage was securely stored and backed-up on the University server.

Procedure

Data curation: filming the stories with children and staff

In May 2018, Aviary staff were introduced to the idea of Digital Stories during a workshop that explained the purpose of the stories, who would see them, the importance of ensuring the child’s perspective and experiences stay at the heart of the stories, and their roles in supporting the creation of the stories. Children’s video clips were then collated over May and June 2018, two or three days a week, based on the children’s individual timetables. The footage was targeted at showing children’s engagement with their environment and their everyday activities as they prepared for transition. The videos captured children’s normal day routine activities, such as free play time, indoor and outdoor activities. The main in situ researcher (EK), spent considerable time in the school to build relationships with children and staff in the early days of the project, and was in constant collaboration and consultation with the staff thereafter in order to ensure that children’s experiences and transitions processes were appropriately and accurately represented.

We used digital cameras throughout the nursery to film children’s choices, explorations and interactions with staff and other children, as well as the Wearcams that children wore during their everyday activities. We also interviewed staff and parents on camera about their experiences of, and hopes and fears for, educational transitions. Working with colleagues from the nursery from the start meant that a trusting and willing relationship already existed and so working with the children and families progressed very smoothly.

Data analysis: editing and producing the Stories

The project team worked closely together to decide what the main Stories with the children should be. Given the extent of the footage gathered for each child this was not a trivial undertaking and proceeded through a number of steps, summarised in Figure 1.

Figure 1.

Process of digital story creation.

Initially, the research team ⁵ coded the video clips, transcripts of interviews, and observations of children based on the Froebelian principles listed earlier in relation to children’s everyday or ‘horizontal’ transitions (Kagan and Neuman, 1998). An example of this coding is shown in Table 1. Next, the team reviewed the coded clips and generated ideas for planning and structuring the Stories based on the main (re-occurring) themes for children. Based on this information, we then started creating concept maps for each child drawing on the evidence from the videos, transcripts, and observations. The concept maps focused on summarising the likes and dislikes of the child, as well as the main challenges they encountered, thereby informing the areas where support was needed. Oscar’s concept maps are included as Figure 2 to show this part of the process.

Table 1.

Excerpt of coding from video and interview transcripts, and observations of the child, according to Froebelian principles.

Nature of transition	Froebelian Principles	No. Participants where code applies		Code Frequency Across Transcripts		Exemplary Coding
		Interviews	Observations	Interviews	Observations
Horizontal Transition	Integrity of Childhood in its Own Right, Child Voice & Child Agency	7	4	51	61	“So it’s sort of bit of both, I follow his interests, and then I plan for what I’m gonna do, what he’s showed me what he likes doing on that day, or what he’s been doing for the last few days.” Key Worker 1 Interview “And he’s gotten better at being able to, kind of, almost adapt as well, in the sense of, “Ok, well the picture’s not there, in my folder or,” something along those lines, he will got to like that area so much more, be more demanding of, “No, what I want is in that cupboard and I want it now”, and will now try and climb up steps or onto a chair to get to something, whereas before it would just be very much, “I’m gonna have a meltdown on the floor because you’re not listening to me or not understanding me”, uhm, and, he’s gotten better as well with communicating with his grandparents,” Parent 3 Interview “Child 2 asks to go outside to the observer, and then asks the staff member with him, saying “garden”, which the staff member notes. She asks Child 2 to go and get his coat, and they go out once this is accomplished.” Child 2 Observation

Figure 2.

Concept mapping for Oscar’s Digital Story showing likes and dislikes on the left and challenges on the right.

The concept maps informed the selection of illustrative clips to form the Stories. This was inevitably a more selective process because we had many hours of footage for each child to distil into short videos. Therefore, we focused on choosing clips that showed children’s preferred activities, and where support was needed, in a range of interactions and spaces (as much as possible), as well as using the different lenses and perspectives presented via the standard camera and the Wearcams. These clips were edited together as a rough draft and shown to staff and families for feedback. Children’s mothers, fathers, and grandparents and four staff members, were invited to comment (on camera) about what they saw in the video clips of the child, discuss the children’s likes and areas of need, and share their thoughts and concerns about the upcoming transitions. Additionally, the staff also explained how they supported children’s everyday transitions at the nursery and how they prepared for the children’s transition to primary school. The children’s Stories (see below) were finalised following this step of the process and new stories generated that included comments from staff and parents talking about experiences of everyday transitions as well as the upcoming transition to primary. In addition, we developed a Story about the Digital Story process itself as a way of gathering feedback from staff and parents about whether this had been useful for them.

Our original plan for the project did not include any direct follow-up with any of the children once they had started in their new schools, however this option became possible with two of the children during the course of the project and hence we were also able to spend some brief time with them in end of November - early December 2018 (this part is shown in a different colour in the original Figure 1).

Findings

Overview of the autism transitions Digital Stories

We developed 16 Digital Stories through the main period of curation and analysis, and then added a further five Stories when we followed-up Oscar and Henry in their new schools, making 21 Stories in total. A brief summary of the main categories of Stories created, along with their URLs from our website, is included in Table 2. The Stories are important ‘evidential artefacts’ (Parsons et al., 2015; p.251) in their own right and so readers are encouraged to view them alongside reading this paper.

Table 2.

Overview of the different categories of Digital Stories created with hyperlinked URLs.

Main category of story	Brief description	URL
‘I am. . .’ (5 stories)	A story for each child based only on footage of and with them, without any accompanying adult narrative or interpretation, thereby allowing a holistic focus on each child as a unique individual.	https://autismtransitions.org/i-am/
‘This is. . .’ (5 stories)	Stories from the perspectives of parents and the staff at the nursery talking about the child, who they are and what they like to do.	https://autismtransitions.org/this-is/
Every day Transitions (2 stories)	Focusing on practices that the nursery staff used for children’s every day transitions (e.g. PECS or a visual timetable used to signal that it was nappy change or snack time), and staff reflections on these.	https://autismtransitions.org/everyday-transitions/
Preparation for School (3 stories)	The nursery staff discuss how they prepare for children’s transitions throughout the year. Parents also express their thoughts about their child’s upcoming transition, including their worries and concerns. This footage highlights the importance of dialogue and communication and looking beyond the autism label.	https://autismtransitions.org/preparation-for-school/
Thoughts about the Digital Stories (1 story)	The nursery staff and parents shared their thoughts about the aims of the Digital Stories and their roles within the project. Nursery staff indicated that the project had already impacted on practice; parents talked about how much they valued the stories of their children, the difference the stories had made to them, and how important the stories could be in supporting transition and planning practices for others in the future.	https://autismtransitions.org/thoughts-on-digital-stories/
Follow-up (5 stories)	Oscar and Henry are seen settling into their schools, their daily life there, the progress they have made and their relationships with peers. An additional, very short, story was created for Oscar, in which his class teacher and the school’s SENCO talked about his upcoming transition to a special school.	https://autismtransitions.org/follow-up/

Given the rationale and aims for our project, and our aspiration to access and foreground the views and voices of young autistic children, we focus in more detail here on what we call the ‘I am. . .’ Stories. There are five of these, one for each child, based on footage of, and with, them and without any adult voices shown in the videos so as to prioritise, as far as possible, the children’s perspectives. Each is around 5 minutes long. The Wearcam footage formed some of the strongest evidence for these stories. We first bring our own story full circle by focusing specifically on Oscar to illustrate the powerful insights we gain about his views through this methodology. We then provide an overview of the ‘I am. . .’ Digital Story framework that emerged based on all of the children.

Example Story: I am. . .Oscar

Box 1 contains a clip-by-clip ‘transcript of action’ of Oscar’s story, though we strongly recommend that the Story itself should be viewed to see and hear Oscar’s actions and perspective. Oscar’s Story shows his agency in making choices, initiating interactions, and using self-talk during self-directed activities. Oscar’s obvious enjoyment when he bends down to pick a daisy from the grass outside, proceeds to pick off the petals, and giggle when he bends to pick another one provides a powerful indication of the value and meaning of that activity for Oscar. We see Oscar’s love for sea animals and dinosaurs in his choice of books and toys; we see him interacting and participating with peers and staff on his own terms, inside the main building and outside in the sandpit, forest, and playground. He is supported by staff in some activities, while at other times he explores freely, showing evidence of imaginative play with his plastic dinosaur. We see how Oscar responds when he is unhappy with something, and how staff support him to re-engage. It is clear what Oscar likes to do, how he interacts with others, and his unique actions on, and explorations of, his world. Oscar is, we argue, able to share his own views.

Box 1.

Transcript of action from ‘I am. . . Oscar’ (5:33 minutes).

Story starts with Oscar standing by self in the garden holding a daisy

Sat inside, rolling plasticine, with support from Gareth

Inside, banging on a drum by self [other children are singing and there is music in the background]

Wearcam: Picking daisies from the grass outside: humming, babbling and giggling to self

Inside, sat on floor by self, playing with sea creatures

Inside, sat on the floor, looking at book by self, with sea creatures

In sandpit outside, by self, playing with the sand

In sandpit with Gareth: Gareth following the lead of Oscar; Oscar is scooping the sand towards him, Gareth playfully bangs the sand with his hand

Wearcam: scooping sand in the sandpit with spade; murmuring to self

Playing with bubbles inside, other children present. Wearcam shows physical movement in response to the bubbles and we hear Oscar making ‘chchchch’ noises

Sat inside with Gareth using a cutter to make plasticine shapes (hand over hand)

Sat inside, using scissors to cut some playdough [staff and peers sat alongside but not interacting with them]

Wearcam: rolling and breaking playdough with fingers; staff providing positive reinforcement through counting the number of pieces made ‘six. . .seven’

Wearcam: Oscar is outside reaching into one of the toy bins to choose dolphins, and a shark and then a Ray; we hear him vocalising as he chooses

Wearcam: Plays with dinosaur outside: pretend play - moves it as if flying; we hear Oscar making playful noises as he does so

Wearcam: plays with a different dinosaur inside

Outside, Oscar drops a plastic jug on the ground and runs to the sandpit where he sits down and flaps his hand. Staff member comes across and says ‘Oscar’. Oscar lies down in sand on belly. Staff has PECS sheet: ‘Looking. Time for drink and snacks’.

Inside, Oscar is sat next to Gareth, coming to the end of an activity. Gareth repeats ‘It is finished, it is finished’.

Outside, with Felix, Oscar bounces the branch of a tree first by himself and then, following Oscar’s lead, Felix joins in

Wearcam: Outside in the playground. Gareth’s voice: ‘Oscar’s one, Oscar’s bat, Oscar’s ball. . . are you ready? [affirmative response can be heard from Oscar]. . .here it comes. . .ah. . .close!

Wearcam: Gareth’s voice: ‘climbing the tree Oscar! Yeah! [claps] And again! Well done, there you go, climbing the tree!’

‘I am. . .’ Digital Story Framework

Following the story creation process described earlier we then deconstructed each of the ‘I am. . .’ Stories to identify the common features contained within them, that is, what they really show us about the children. We followed the same process for the ‘This is. . .’ stories, which were the Stories told about the children by the adults (staff and family) who knew the child well. For each Story we produced a transcript of action like Oscar’s in Box 1, or a transcript of what was said in the case of the ‘This is. . .’ stories. Using a thematic analysis approach we identified repeated core elements of the stories, which were: Spaces; People; Objects and Interests; Communication and expression; Independence and agency; Skills; Interactions; and Support. These elements we describe as the ‘I am. . .’ Framework and are listed in Table 3 alongside a core question to guide a more holistic understanding of the child, as well as a brief description of each Framework category.

Table 3.

‘I am. . .’ Digital Story Framework with core questions and brief descriptors.

Core Framework element	Core question to drive more holistic understanding of the child	Examples of applying the Framework in practice
Spaces	Where does the child like to be or explore?	Outdoor: the sandpit, mud kitchen, water play, gardens, forest school, painting, trampoline, climbing. Inside: at tables or on a sofa, or any child-led activities.
People and interactions	How do children like to spend their time and who do they interact with?	Children will interact in different ways with staff and peers. They may also like to spend time by themselves. Interactions can be child-led or adult-led.
Independence and agency	What does the child choose to do for themselves?	This can include: exploring, requesting, initiating, choosing or deciding, acting upon an interest or desire.
Objects and interests	What is the child really interested in and like doing?	Look out for preferred books, toys, use of play equipment, clothing, use of outdoor spaces, and the importance of touch or sensory stimulation and responses.
Communication and expression	In what ways does the child express themselves?	This could be verbal or non-verbal and directed at the self or others.
Support	What behaviours show where the child needs support?	Include some indication of the areas where the child needs support to encourage their progression.
Skills and capabilities	What is the child good at?	There are many things that could be shown here e.g. cutting, threading, painting, pouring, making, counting, talking, sharing, running, bouncing, picking, throwing, climbing, initiating, responding, sitting, joining-in.

Discussion

Children’s perspectives and unique insights are strongly represented in the ‘I am. . .’ Digital Stories, especially via the innovative Wearcam footage which shows their agency in making choices, interactions, and communication and expression. The Stories were powerful in showing how children liked to explore and spend their time in ways that moved beyond written reports. As Riley’s grandmother said when viewing the ‘I am Riley’ Story:

‘Yeah, seeing is believing it, so they say, and it’s true. You know, if you see it wrote down you think ‘Oh, yeah’, but anybody could write that sort of thing. But actually seeing it, is so much better.’

There was quite a lot of self-talk captured via the Wearcams, and this is not something that is easily accessible for practitioners to hear in the everyday to and fro of the nursery. The Wearcam footage was vital, therefore, in revealing how much children were saying, and how much they were enjoying activities during the day. For children, including Oscar, whose voices are often underestimated or considered too ‘hard to reach’ (Franklin and Sloper, 2009), the ‘I am. . .’ stories offer a very strong challenge to the notion that they cannot express their views and preferences in their own ways.

Crucially, we suggest that the stories provide a more holistic sense of who the children are in contrast to the more standardised, written and deficit-focused narratives and reports that focus on what they can or (more usually) cannot do (Hoskins and Smedley, 2019; Palikara et al., 2018). This is supported by comments from parents on how valuable the Stories had been for them and could be for others. For example, Oscar’s Mum, Anita said:

‘I think the Digital Stories are amazing, I loved them so much. It’s brilliant to see his perspective on things, how inquisitive he is. . .I think it would be amazing for schools and professionals to watch prior to the child’s start. . . There is too much pressure on the parents to have to try to explain what their child is like, because you can’t explain in words a person, and watching the stories would almost fast forward that getting to know them time, they wouldn’t have to spend like two months getting to know that child. I don’t like the pressure of explaining what my son is like myself, because I worry that I’m not portraying accurately enough. . .It will be lovely for the school to watch the child playing, what they are like when they are comfy and what level they can reach.’

Our Stories included some of the things that children found challenging, including Luke not liking noise and Oscar getting frustrated with a transition time and running to the sandpit for refuge. These aspects of their lives are important too but were not foregrounded in the Stories. The main point of the Stories was to provide a more holistic representation of the child that was not dominated by their difficulties or label. Paula Kluth (2010; p.195) draws upon Cathy Apfel’s work to suggest there should be a ‘birthday present rule’ when it comes to how we talk about and understand autistic children:

‘when you read a description of learner, examine a report about him, or listen to his team discuss his profile, you should be able to generate an idea for a birthday gift for him. If you can come up with a great gift idea, you should be able to come up with good ideas for teaching materials, positive behavioral [sic] supports, and lesson formats too’.

We suggest that the ‘I am. . .’ Digital Stories are a meaningful and powerful way of being able to do this. We challenge any viewer of the Digital Stories not to be able to make suggestions for gifts that these children would really enjoy and to then be able to use those interests to engage and include them in a new primary school setting. In the context of preparing to transition to a new school, such information is vital for planning activities and the environment for ensuring that children are included successfully.

The Stories are also very revealing about the child-led and initiated play preferences and activities of these five autistic children, and how Aviary staff provide an environment that enables freedom of expression, choice, and exploration. This environment supported children to manage the everyday transitions between home and school, and between spaces and activities. Much research about young autistic children documents their preference for solitary or functional play, and their difficulties with imaginative and creative play (e.g. Jarrold, 2003). Indeed, solitary or functional play in autistic children is usually considered so diminished and ‘disordered’ that it requires adult intervention and being taught what to do (e.g. see Kossyvaki and Papoudi, 2016 for a review). The challenge for researchers and for educators is the lens through which we interpret and characterise such play. A good example comes from Andersen et al. (2004; pp. 380–381, our emphasis) who described one of the autistic children in their study thus:

‘. . .[he] tended to favour solitary play on the climbing frames and often wandered around alone and without apparent purpose. . . [his] teacher aides also intervened at times when he was displaying unoccupied behaviour, encouraging him, with varying degrees of success, to engage in some activity’.

By contrast, our ‘I am. . .’ Stories show individual (solitary), playful expressions and exploration of the surrounding environment as well as reciprocal and creative engagement, social initiations and responses. We do not place a judgement on individual activities as lacking or atypical. Rather, what the Stories show is how important these spaces and activities are for children to express their voices and agency: we see them choosing to skip along the plastic crates by themselves, play with their plastic dinosaurs or sea creatures, and feel the flow of sand or water through their fingers. We also hear the children’s voices while they do these things: giggling, singing, murmuring, babbling and chattering. There is evident enjoyment and, therefore, intrinsic value in these activities for the children in this context.

Bruce (1991; p.59) reminds us that solitary play is one of the ‘crucial features’ of free-flow play, alongside play being ‘an active process without a product’ and ‘intrinsically motivated’ for all children. Our ‘I am. . .’ Stories show that these features should and can apply equally for autistic children. In other words, in line with the core ethos of the sociology of childhood, autistic children should have as much ‘freedom. . . to choose’ (Liebschner, 1992; p.66) in their play as other children, and to have their agency respected and voices heard (Murray, 2019). Such a focus on the holistic nature of childhood, and the importance of understanding the child’s perspective, does not have to be diametrically at odds with what early years practitioners are expected to do for the EYFS either; we are certainly not naïve in relation to the powerful influence of the EYFS and the expectations it places on early years practitioners to track progress and academic achievements and to find out what children ‘can do’ (Standards & Training Agency, 2018; p.15). As Pascal and Bertram (2009; p. 253) observe:

‘. . .we have found that listening [to young children] can challenge assumptions and raise expectations. Seeing and hearing children express their interests and priorities can provide unexpected insights into their capabilities’.

This is what we observed too. Knowing about children’s capabilities, and providing spaces that can be explored based on children’s interests and initiations, enabled practitioners to successfully support and include children in ways that were meaningful and positive for the children and their families. A focus on capabilities and strengths could help to reframe the narrative about autistic children in the transition between schools as Oscar’s Mum, Anita, suggests.

We are not naïve either with regard to the many pressures on early years’ settings and how time consuming the creation of the ‘I am. . .’ Digital Stories could be. We are currently piloting the embedding of the ‘I am. . .’ Digital Story methodology in everyday practice in person-centred planning meetings in early years’ settings, and hope to report on that in due course. As a starting point, however, our ‘I am. . .’ Framework offers a thinking tool for reflection on practices and about the ‘pedagogic culture’ of the nursery (Arnott and Duncan, 2019; p.1). The Framework is intended to orient practitioners and professionals towards finding out who the child is and avoiding deficit-focused assumptions based on the autism label.

This has already made a difference in practice. For example, an Educational Psychologist who contacted us following a taught session at the University with trainee Educational Psychologists and their tutors commented:

I just wanted to thank you for your session yesterday morning. . .I was particularly struck by the camera footage and the emphasis on individual perspectives. I’ve just, this morning, written a statutory report for a 5 year old who has been given a diagnosis of autism, and I’m now about to start my second such report of the day. With both, I’ve really held the “birthday gift” in mind, and I’ve been thinking about the value judgements inherent in one of my statements about “not yet playing alongside other children” (which I’ve just changed for “does not choose to play alongside other children”). I much prefer the new way of thinking that came out of your session yesterday.” (Educational Psychologist)

Ethical considerations and conclusions

Although powerful from the perspectives of families and staff members, and already making a difference to the thinking of professionals involved in working with autistic children, we necessarily need to reflect critically on the Digital Stories in relation to ethics and the limitations to the representation of children’s choices and voices. The roles of the children themselves in the Story creation process inevitably raises some appropriately challenging ethical questions. For example, it is highly unlikely that the children would have understood what function the Wearcams were fulfilling in this methodology or been aware that videos showing their interactions and choices would be shared with others. They could not know that their first names were being used in the videos and would be made available publically. Adults who knew the children well remained the key gatekeepers as to what was ‘knowable’ about the children, and played central roles in constructing the Stories. Thus, there were real limitations in terms of how far children’s participation and consent could extend. However, all of the adults involved in the process knew that this was the case and operated with integrity and respect for the primary aim of the project, which was to enable children’s views to be seen and heard in ways that they had not been before. The parents’ comments shown in the ‘Thoughts about the Digital Stories’ video (see Table 2) suggest that we achieved this in a way that was very much on the side of the child. Moreover, in acknowledging that children should be able to participate in ways that are more embodied and so, by definition, do not require the need for representation of processes linguistically, it is a logical consequence that some aspects of children’s participation would not be possible. This was also the case in relation to the lack of children’s involvement in choosing clips of themselves for the Stories.

We fully acknowledge that there is a very careful, and ongoing, tension between taking a more risky methodological approach like this in order to promote an inclusive agenda that tries to do things differently, and maintaining the status quo of the marginalisation of mostly unheard voices. On balance, we chose to take the risk, with the informed consent of families and staff members, because of a commitment to social justice. In so doing, we are also very mindful of Ware’s (2004) caution that it may be tempting for observers to over-interpret the actions of minimally verbal participants. However, our Digital Stories do not seek to do this; instead we offer the Stories as lenses on the children’s actions and interactions with very little interpretation (other than by staff and parents) about what was going on. Our methodology was based on deep immersion in the nursery, and a building of knowledge about the children based on discussions with parents and staff as well as spending substantial periods of time with the children. We worked very hard to ensure we remained critically reflective throughout the process and respectful of the nursery staff as well as the children and families.

Nevertheless, and inevitably with any representation of reality, it could be the case that we have over-interpreted what was presented in the video footage. We would suggest though that the idea of ‘over-interpretation’ can itself be critically challenged. We were regularly told by staff and by parents that in having the opportunity to review the actions and interactions of the children through the video there were important aspects that had been missed ‘in the moment’. It could be the case then that ‘over-interpretation’ could be reframed (at least in some instances) as offering a space for revealing new insights into children’s capabilities that might have been otherwise missed.

Finally, critics may rightly have some doubts as to the extent to which the Stories get closer to showing children’s perspectives and a more holistic sense of who they are compared to other, usually written, accounts of their lives which may tend to focus on specific or narrow aspects of progress or attainment. Just as the Digital Stories approach offers a tool that moves beyond written words to enable children to have a voice where they may otherwise have none, it follows that written words cannot do justice to what we learn about children who ‘have no words’ when discussing the Stories. Through the Wearcams we argue that we did get closer to children’s perspectives compared to other more disembodied or observational methods. However, readers will need to make up their own minds about this claim and we therefore end with a reminder to watch the Stories directly because, as Riley’s grandmother said, ‘. . .seeing it is so much better.’