The mismeasure of a young man: an alternative reading of autism through a co-constructed fictional story

ABSTRACT

The combination of academic article and the fictional story it contains represents an attempt to convey our combination of qualitative participatory research and collaborative creative writing as used in a project with a group of young people with disabilities. Through our story involving the fictional character Jasper, we have tried to distil some of the essence of his real-life inspiration, Peter, a young man with autism. At the same time, we recognise the impossibility of “pinning down” any character as a representation of any psychological condition. By questioning the boundaries between science and art, and by considering alternative ways of creating research reports, we present the story as an alternative reading of autism. We suggest that the value of fiction in this context is that it allows a reframing of problems while presenting readers with an accessible means of connecting with others across disciplinary, methodological, and social divides.

KEYWORDS:

• Autism
• co-construction
• fiction
• literature
• narrative
• psychological problems
• stories

Introduction

Historically, the domain of the psychological has engaged with theories and ideas about personhood as a more-or-less scientific endeavour, routinely observing, classifying, and regulating people as its subjects and explaining human development through measuring degrees of normalcy and tracking linear trajectories from dependent child to independent adult (Lee 2005). Indeed, the mismeasure of man (Gould 1981), woman (Tavris 1993), and child (Burman 2008) remains anchored by metric evaluation and biological determinism as psychology’s scientific credentials have gained further traction within popular 21st century discourse. Whilst a growing body of critical psychologists continue to open up spaces for re-thinking how one might conceptualise the development of humanity as a more collective, inclusive, and socially just endeavour, the psychologisation of everyday life persists (De Vos 2012). Indeed, since the psychological gaze constitutes such a fundamental point of cultural reference and body of expertise for understanding ourselves and each other (Rimke 2000), this could be said to have the effect of severely limiting opportunities to “contest the forms of being that have been invented for us, and begin to invent ourselves differently” (Rose 1998, p. 197). Moreover, as the subjects and objects of psychological research have become naturalised and codified by the “serious stamp of science” (Freud, in Britzman 2011, p. 37), innovative attempts to reframe understandings of what constitutes valid data and methodologies for understanding the complexities of lives lived are frequently consigned to the margins of so-called “proper” research. Despite this, generations of researchers (see Denzin & Lincoln 2011 for a wide range of examples) have continued to cut across disciplinary norms to provide alternative means of knowledge production and representation both within and outside of the discipline of traditional psychology (Parker 2004).

The central focus of this article is the presentation of one of a series of short stories co-constructed with young people with a range of (dis)abilities who have been involved in a 30-month participatory research project with a group of academics, including the authors of this article. The aim of the research project is to represent the life experiences of marginalised young people, telling their stories in ways that attempt to engage a much wider audience than might be achieved through conventional academic routes.¹ To this end, we have co-created fictionalised accounts, which allow the young people to distance themselves from their own issues while bringing closer the audience with whom we wish to connect. The project has used a participatory methodology whereby the young people and academics work together to collate information from wide-ranging sources, including interviews conducted by the young people themselves, interviews with significant others in the young people’s lives, creative writing activities, and observational fieldnotes. The data have then been re-worked into fictional representations by members of the research team working together with the young people concerned to create stories that reflect their experiences. While we do not claim literary merit for these stories, and indeed Jasper’s Answer has many failings as a coherent literary narrative (Leavy 2013 provides an itinerary of components to consider), we can claim that all elements of the story can be directly traced to our data.

While the arts and the sciences have been considered uncomfortable bedfellows, as science has attempted to disentangle itself from its roots in superstition and magic, this uneasy relationship offers much fertile terrain to explore some of the enigmas that continue to evade scientific explanation and “reason” (Timimi & McCabe 2016). Such enigmas are represented in the stories produced in our research project, including the one introduced in this article. Combining art and science also offers new possibilities for exploring how different understandings of psychological phenomena shape people’s sense of themselves in relation to others and the world. For Barone and Eisner (2012, p. 5), “arts-based research is a means through which we seek new portraits of people and places,” engaging in making “trouble” and broadening “our awareness of what we had not noticed before” (Barone & Eisner, p. 6). We argue that creative portrayals of psychological phenomena offer an important pathway for people to connect with intangible subjects that are not amenable to measurement, logical statements of fact, or formula, and therefore help to “create a language for talking about what was hitherto unknown” (Hacking 2009, p. 1467). Each of our fictional stories from our research project offers a glimpse into the life of another individual whose traits may appear both odd and familiar. Ultimately our use of fiction is an attempt to help people connect with others and embrace similarities rather than fixating on differences; as a means of transcending the dichotomy that locates marginalised research subjects as either inside or outside traditional research domains, psychology’s long-established problems, or our own experiences.

Further, our methodology, combining participatory research with fictional outputs, offers a more complicated version of how the lives of the researcher and researched can be conceptualised as an empathic movement between these two spaces, and as a means to counter the dominance of psychology’s expertise over those experiencing individualised problems. Therefore, we are not interested in measuring objects, capturing our subjects, or even telling the whole story. What does engage us, however, is the capacity of fictionalised research reports to bring alternative knowledges into view, allowing research narratives to become more easily accessible and connect with those situated outside of the traditional parameters of science and expertise. As Frank (2010, p. 41) reminds us, stories “make the unseen not only visible but compelling. Through imagination, stories arouse emotions.” As Leavy (2015, p. 56) points out, “one of the main advantages of fiction as a research practice … is the development of empathy in readers”; this “empathic engagement” (de Freitas 2003) is precisely our ambition in presenting these stories to a wide range of readers to include social workers, teachers, schoolchildren, and the general public.

Stories as sources and products of knowledge

Our work attempts to join that which “captures the variegated nature of humanity”’ (Goodley 2016, p. 156). Arthur Frank’s (2010) reticence to build a categorical theory of narrative and proposal that one should let stories “breathe” resonates with our intent to engage with young people with disabilities and craft stories about their lives as artistic representations of “being in the world.” Nonetheless, Richardson and St. Pierre (2005, p. 961) still contend that “there is still one major difference that separates fiction from science writing. The difference is not whether the text really is fiction or nonfiction; rather, the difference is the claim that the author makes for the text.” Therefore, we reflect on the processes of co-researching and writing with a group of marginalised children and young people as a method of enquiry (Richardson & St. Pierre 2005).

It is difficult to define our methodology as existing within the parameters of social science or conventional literary work. Rather, we are researching in between the spaces that have traditionally marked disciplinary, professional, generational, or normative boundaries, as we actively work to unsettle the formulaic technical application of research method. Our work insists that we engage with the complicated “truths” that make it impossible to refer to a particular body of expertise, force apart a singular authorial voice, or somehow predict how others will engage with the products of our knowledge building. Indeed, by engaging in a range of activities with our participants and accumulating eclectic data, our work is concerned with creating dynamic texts as a result of doing research and writing stories differently. By sharing the stories with diverse audiences, we hope to provide a portal through which to glimpse alternative ways in which we might come to understand ourselves and connect with others. For Frank (2010, p. 13), “socio-narratology attends to stories as actors, studying what the story does, rather than understanding the story as a portal into the mind of the storyteller.” Here we argue that what our stories do is offer an alternative resource that enables audiences to connect with different lives rather than construct stories that attempt to offer a faithful biography of a/typical development or individualised psychopathology. We do this in the hope that we are able to create a dynamic creative space within which the children and young people (who feature as protagonists) become “knowable” as fictional characters living with real challenges that shape and are shaped by the broader socio-cultural and relational contexts of their lives. Therefore, we present this story not as the “last word”² (Bakhtin 1984) but rather as a means to create a dialogical space that instigates critical debate about the merits of engaging with different subjects, objects, and products of research, both within and beyond the academy.

Our alternative research report was developed as a critical, narrative response to children and young people expressing a desire to harness the transformative nature of stories and foreground their experiences as competent citizens and researchers, regardless of disability or disadvantage. That is not to say that sources of disadvantage were disavowed or that the emotional effects of living within a disabling society (Reeve 2006) remained absent from all of the stories that underwrite the research project. Rather, the focus of authorial decision making in the story we include here was grounded by an ambition to connect with others through fictional characterisations of participants’ lives rather than construct protagonists or storylines according to psychological categories and labels. Therefore, Jasper’s Answer is not a coherent account of but a creative response to re-thinking the subjects and objects of the conventional research report. In contrast to treading the well-worn footprints of scientific discourse and focusing on the psychological object of autism or identifying the autistic subject, as researchers on this project we offer the “making up” of stories using metaphor and imagery as a creative and critical response to the construction of the atypical “kinds” (Hacking 2007) of child/ren and childhood/s most commonly referred to and puzzled over within psychology journals. We hope to carve out a space where participants of the project are able to invent themselves differently, in addition to unsettling the status and legitimacy of conventional research paradigms and asking different questions about what it means to be human or a subject of research.

The writing of Jasper’s Answer: serious play and de-constructing the scientific enigma of autism

The story presented, Jasper’s Answer, is based on one young man referred to in this article as Peter (a pseudonym). While Jasper is a fictional character, Peter is a 19-year-old man with autism, who has been a participant in our research project for two-and-a-half years. The character of Jasper, including the details of clothing and the “bag of knowledge,” emerged from Peter’s own creation of a character during a creative writing workshop with a children’s author. While this was a fictional character construction, the character’s appearance, concerns and interests all reflected those of its creator. Thereafter one of the current authors of this article worked on the story, with additional reference to data sources including: interviews with Peter and his mother; interviews with Peter and other young people; Peter’s and his peers’ feedback on the story as it developed; informal observations; and recorded interactions between Peter and other young people in the group. For the creation of this and other stories, we have engaged in the “selection” and “combination” of elements of these empirical datasets—interview transcripts, observational fieldnotes—as a means of “bring[ing] readers into the work of fiction while allowing writers to reimagine what ‘real worlds’ are” (Leavy 2015, pp. 57–8; following Wolfgang Iser 1997).

While the story portrays a moment in the life of a young man who happens to have a diagnosis of autism, the subject of autism is not referred to directly or even alluded to indirectly; instead we merely offer a window into what life is like for Jasper and his family as he navigates an entirely different riddle. That is not to say that we cannot begin to conceive of Jasper’s Answer as a metaphor for understanding autism but that, in this instance, we choose to utilise this story as a means to instigate an alternative dialogue about Jasper’s life, not his label. It is important to note that by not labelling him as autistic we suggest that he is not outside the boundaries of “normal.” A reader might identify with aspects of Jasper: ultimately the project aims to draw on similarity between people rather than difference to promote understanding and empathy.

The story begins with a description drawn from Peter’s observed response to a reading of a different story, entitled Nick’s Riddle, which had been constructed with and about another young person using similar methods. As the theme of the project is “stories to connect,” the intertextuality of the stories is intentional. A riddle is a type of poem that describes something without actually naming what it is, leaving the reader to guess. We argue that a limitation of psychology is that it attempts to identify and measure intangible shades of human difference through the naming of psychological constructs and the identification of the source of difference as products (and deficits) of either nature or nurture (biology/society). Often our research meetings, with children and young people, have been characterised by moments of wonder and surprise on the parts of both adults and young participants, as the young people express insights, emotions, and perceptions that would appear to be at odds with what we might expect from scrutiny of their different diagnoses. The stories we have produced can be regarded as capturing some of this unpredictability and “trouble” (Barone & Eisner 2012), driven by a narrative curiosity and engagement with lives lived—rather than comparative categorisation. Considering an alternative story of personhood, viewed through the lens of an extended riddle, bypasses the need to categorise behaviour and identify reasoned explanations of causation as we work to better understand the enigma of autism through the words and the world of one of our project participants. The story is followed by a commentary which is intended to be both explanatory and reflective.

Jasper’s answer

Jasper taps his chin thoughtfully and frowns as he listens to the story. When the soft voice fades away, Jasper continues to look thoughtful. Then he adjusts his pale blue bow-tie, hitches up his dark blue trousers, squats on the floor, and begins to rummage through his battered bag of knowledge.

What’s in the bag of knowledge? Let’s see … in the bag of knowledge are his magnificent papers so he can take notes. His laptop. Various books to entertain him … let’s see what else is in there. Oh yes, and of course his magnificent pen so that he can take his meticulous notes.

The answer must be in here somewhere. All the time he is muttering to himself. How could a raven be like a writing desk? What does she mean, there isn’t an answer? There must be an answer, or there shouldn’t be a question. And what’s all that about Lewis Carroll being Jack the Ripper? Lewis Carroll wasn’t even Lewis Carroll—he was really called Charles Dodgson. It’s all very confusing.

As Jasper opens his laptop his gaze is instantly fixed to the screen. Sandra watches him from the corner of the room, knowing she won’t be able to communicate with him for some time. She begins to tidy up the notes and pamphlets that have spilled out of the bag of knowledge, and from amongst them she picks up a sketch. With a jolt she realises that it is a picture of her. Using deft pencil strokes, Jasper has caught the upturn of her nose, and she seems to have a slightly anxious expression. She turns over the thick cartridge paper—Jasper always likes to use top quality paper—and sees that on the back of the sketch he has drawn her from behind. With his box of drawing pencils, all in the correct order from hard to soft and all sharpened to perfection, he has carefully represented the complicated way she plaits her hair at the back of her head.

Sandra smiles to herself, and wonders. Who else would draw a portrait from the back and the front? Jasper sees things in 3-D even when most would think 2-D is enough. An extra dimension. When Jasper dives into his bag of knowledge he is looking for something extra. Jasper always says: If you’re going to do it, you’d better do it well. If you’re going to make something, make it last. If you’re going to help someone, help them change their lives. 3-D, not 2-D. The best. Larger than life.

“So how is a raven like a writing desk?” Jasper asks Sandra, for the fifteenth time.

Sandra sighs. “I don’t know, Jasper. Sometimes there isn’t really an answer.”

“Nonsense,” says Jasper. “You just have to think about it.”

Later that day, Jasper is covered in flour. An apron protects his front, but his thick black hair has a snowy sprinkling. Sandra doesn’t like to bother him when he is absorbed, but he cheerfully greets her and offers her a cupcake, still warm from the oven.

As she has come to expect, the cake is perfect. It was such a delight when the college said yes. Even though it was some distance away, it was as though he was destined to go to that particular college. Without any malice, Jasper sometimes reminded her,

“Actually they were the only ones who would take me in. No-one else would, they didn’t want squat.”

But the catering course is going well. One day Sandra hopes he will get the chance to run his own restaurant. Just give him a chance and it will serve the best food, especially the best cakes, in town.

In the meantime, after they have each eaten a cake, there is the problem of the question without an answer. She can see it is nagging at him, and he continues pacing up and down, tapping at the laptop keyboard every time he walks past, then peering into his bag of knowledge. Sandra has an idea.

“I know. Why don’t we do some creative baking? Sometimes you have to stop thinking, and just do something.”

Jasper brightens up instantly, his natural enthusiasm flooding back.

“OK. Yes.”

“Mm,” Jasper puts his hand to his chin in his thoughtful pose. “I shall need my art equipment first, and then I’ll need several baking tins. Mm. Ah yes …”

As Jasper continues to think, Sandra lays two sheets of beautiful white paper on the table. She finds his set of 15 pots of paint, all in the correct order from white and yellow to indigo and black, a pair of sharp scissors, and some glue. Then Sandra pulls out flour, butter, eggs, and all the baking equipment she can find, crowding them on top of the kitchen cupboard.

When she decides he must have everything he could possibly need, Sandra knows that Jasper would prefer to be left alone. She closes the door carefully behind her, and turns her thoughts to the dogs, who are going to need a walk.

Three hours later, Sandra edges open the door to see how Jasper is getting on. Before she can stop them the three dogs bound into the room. Sandra stares in horror at the open pots of paint and the carefully constructed little paper models scattered across the table.

Jasper turns to face them, straightens up, and firmly holds up one hand.

“STOP. RIGHT. THERE.”

The dogs skid to a halt. No-one else can command them like that. Sandra sometimes thinks that Jasper and the dogs understand one another better than anyone.

Somehow the glue and the flour have melded together and Jasper has turned into a hedgehog. His hair is in white-tipped spikes sticking out all around his head. Not only that, but he now has black paint specks on his face and over his apron. His neat bow-tie and his carefully ironed trousers are daubed with something sticky.

Jasper smiles broadly and holds out his arms with his palms upwards.

“You just have to look at it from a different perspective,” he explains in his clear, expressive voice. “Come over here.”

Even Maddy, the most mischievous of the dogs, pads quietly over to where Jasper indicates.

With a flourish, Jasper straightens his blue bow-tie, flicks the tea towel over one shoulder, smooths down his blue trousers, and opens the fridge. He draws out two cakes. As the fridge door swings shut, Sandra sees that one cake is beautifully crafted in the shape of a writing desk with its lid raised. The other cake looks exactly like a black bird ready to take flight.

Jasper looks down in satisfaction. The dogs sit silently with their heads cocked.

“You see, it’s the inside that matters, not the outside. They’re both the same on the inside.”

Commentary on the story

The description of character Jasper includes recognizable physical traits of his inspiration Peter, who frequently inhabits the periphery of our meetings, wandering around deep in thought and tapping his chin. While Peter does not wear a bow-tie, there is something of the professor or “geek” about Peter’s demeanour which is not uncommon in people with autism. This character, and further the story, creates a kind of “dramatic reality” (Pendzik 2006) that “exists between reality and fantasy: it partakes of both and belongs to neither.” In therapeutic uses of creativity, a “dramatic distance” between patient and character is crucial to the presentation of a “problem” to be addressed. In narrative therapy, “re-authoring” the story allows people to take ownership of their life by viewing it as a story, and therefore writing it as they wish.

The presentation of Jasper’s direct thought (Leech & Short 2007) in the second paragraph is a recorded verbatim quote from Peter at the creative writing workshop, in reply to the question, “what’s in the bag of knowledge?” The free direct thought (Leech & Short) presented in the third paragraph, on the other hand, is a paraphrase of comments made by Peter in response to the reading of Nick’s Riddle at a different research meeting. “H’mm let’s see” is a stock phrase used by Peter, which – as is the case with all frequently used such phrases for all speakers – provides him with thinking time without losing the floor. Reflecting the character of Jasper, Peter can be observed writing tiny, meticulous notes on pieces of paper during all our meetings. He told us, “I take notes on the research I do. I make them especially small so I can fit as much as possible on there.”

The production of a fictional character who so closely resembles its creator indicates a level of self-awareness that is not always associated with autism. For example, autism is often defined in psychology as a lack of “Theory of Mind,” which is believed to develop in typically developing children at around the age of 5 (Baron-Cohen, Leslie & Frith 1985). Children and young people with autism have been shown to consistently fail theory of mind tasks, which apparently suggests they are unable to understand that another person will not necessarily see and think exactly as they do. Peter’s creation of a character he knows is fictional to be used in stories to educate others would seem to contradict this theory.

Several of the young people with autism can be observed muttering to themselves in our meetings. One young man explained that he is often distracted by things that others around him cannot see and he talks to imaginary people. Some describe being bullied for this behaviour that others seem to find inexplicable. Yet, one such person in our project has written for us an immensely entertaining piece of drama based on these imaginary interactions. Once again, the transformation of psychological data into art, by the protagonist himself, is a rich source of insight into his observed behaviour.

Nick’s Riddle included the lines, “Nick is quick. He solves riddles in no time. ‘Why is a raven like a writing desk?’ Nick knows.” That story also refers to Alice in Wonderland, where the riddle originates, and its author Lewis Carroll (1865). After hearing the story read aloud to the group, the young people engaged in a discussion about a theory linking Lewis Carroll to Jack the Ripper. Peter, on the other hand, was fixated on answering the riddle, which is the focus of the story here.

Peter becomes completely absorbed in researching on the internet, playing video games, or writing his notes. At our project meetings, it can be difficult to retrieve him and encourage him to join in the activities. Every parent of a child with autism on our project who we have interviewed has an acute sense of their child’s idiosyncrasies, as is true of most parents, but it seems to be the way in which children with autism do not focus upon how others perceive them that makes their behaviour stand out and concerns the parent the most. Individual preferences of young people with autism can be accepted or challenged by those around them. It is worth exploring the reasons for wanting to change behaviours and for whose benefit it might be. In this representation, Sandra simply accepts Jasper’s preferences, which might be seen as a more helpful response.

The character of Sandra has been left deliberately vague to enable a reader to envisage her as a parent, carer, sibling, friend, or employed assistant. Equally the setting could be a regular family home or a residential setting. While this lack of detail may not be effective in terms of literary evocations of character and place, it allows for “interpretive gaps” which readers can fill and “actively develop empathic connections to the characters (and the kinds of people they represent)” (Leavy 2015, p. 56).

The “extra dimension” here is a positive take on Peter’s attention to detail. This might be seen as a deficit in traditional psychology, but here it is presented as a quality to be appreciated. For example, the Social and Communication Disorders Checklist (Skuse, James & Bishop 1997; Skuse, Mandy & Scourfield 2005) frequently used to assess autism consists of a set of 12 questions, each presenting a negative characteristic, for example, “difficult to reason with when upset”; “very demanding of other people’s time”; or “cannot follow a command unless it is carefully worded.” White (2013) suggests that this latter inability to follow instructions hinges on the autistic child’s lack of assumed knowledge within the instruction, rather than an inability to carry out the task. Regardless, the explanation still views the lack of understanding as a socio-communicative deficit, whereas our rendition constructs Peter’s disposition as a strength. Jasper’s mantra “if you’re going to do it, you’d better do it well … etc.” is an (almost) direct quote from an interview with Peter. His desire to get as close to perfection as he can is reflected here, but also his commitment to helping others achieve their potential.

When we shared this story with Peter, he said, “3D not 2D. I don’t get it.” We reminded Peter that in one of our workshops he had drawn the face of one of the group members on a head-and-shoulders-shaped piece of card, and then had turned over the card and drawn the back of the woman’s head. His response was: “Really? Sounds interesting.” We were left wondering if he actually remembered this event at all, and it raised questions yet again about capturing different perspectives in qualitative research, researcher appropriation of data, the extent of collaboration in collaborative participatory research, and more.

Sandra’s claim that “sometimes there isn’t really an answer” is a metaphor for the riddle of autism and any other diagnosis of behaviour that falls outside the norm. One might argue that psychology tends to ask the wrong questions, and an appreciation of difference would be a more useful way to explore traits associated with autism.

Peter has described the pending acquisition of his catering certificate as a monumental achievement in his life. Although Jasper here is portrayed as “without malice,” and Peter is a remarkably gentle individual, the verbatim quote referring to Peter’s experience of finding a college course was delivered with some anger about the injustice of being refused admission based on his diagnosis. Having overcome the challenge of being accepted at a college, he is passionate about catering and especially making cakes. He stated in an interview: “There’s nothing better than making a delicious cake, decorating it, and taking it out to someone. It’s very therapeutic.” Given the circumstances, his use of the word “therapeutic” indicates that perhaps more attention could be paid to the perspective of the autistic individual, who could be seen as self-prescribing the most appropriate treatment if we “just give him a chance.” Peter might be termed an “expert by experience” (a term now coined by the Care Quality Commission); that is, he is the expert on his own life and what can best help him because he has lived it.

Peter and many other of the young people with autism and other learning difficulties in our project have described a strong affinity with animals. Peter’s conversations often included reference to his three dogs, featured in this story, and he described how he felt he and they understood one another intimately. He said, “They actually think they’re human. Or at least they’re pretending to be humans to fit in with us.” In the context of Peter’s own problems with fitting in, this could be seen as an illuminating comment on his own condition.

Peter was somewhat indignant at the use of metaphor, querying how Jasper could have turned into a hedgehog. A classic trait of autism is an inability to understand metaphor (as explored in popular literature such as The Curious Incident of the Dog in the Night-time, Haddon 2003). However, in the same conversation, referring to the dogs in the story, Peter said, “Beagles are notorious for tearing things up, aren’t they? They’re basically coiled springs.” His own use of metaphor indicates that an interpretation of his objection to the hedgehog metaphor as a deficit in understanding is not appropriate. It is debatable whether Peter’s use of the term “bag of knowledge” was intended metaphorically or not.

By the end of the story Jasper has answered his own question. His conclusion reflects our own position: taking different perspectives into account is crucial in qualitative participatory research, and accepting difference can help us all to navigate the world.

Externalising problems and reframing challenges

Our research project tried to reveal challenges met by some of the young people who have participated with us as disadvantaged or disabled citizens. We suggest that reframing problems and challenges as external to the individual, particularly through using creative methods, is a more authentic representation of life from the perspective of the individuals themselves. According to the Oxford Dictionary of English (2010), a problem is “a matter or situation regarded as unwelcome or harmful and needing to be dealt with and overcome.” Psychological constructs such as “intelligence,” “abilities,” or “attitudes” are often determined or measured through a series of questions and evaluations, such as the Social and Communication Disorders Checklist (Skuse et al. 2005) referred to in the story’s commentary. Such tools and technologies enable data to be collated and compared across diverse populations with the effect of categorising individuals; whether the categorisation is for the benefit of the individuals or for the society that accommodates them is questionable. A manifestation of a desire to categorise came from volunteers at our own research project workshops, wanting to know about diagnoses attached to our young participants. The volunteers argued they needed to understand their “condition,” “needs,” and “abilities” to prepare their own responses and provide suitable support. This remained a dilemma: seeing our young researchers as individual people rather than as examples of a condition left some helpers feeling uncomfortable and unprepared.

As we began the process of listening to children’s and young people’s stories about their lives, it soon became apparent that despite our participants being positioned at the edge, or even outside of, the parameters of normalcy and the conventions of everyday social life as subjects carrying labels such as the “looked after,” “autistic,” “dyslexic,” “depressed,” “intellectually disabled” child or young person, the explicit naming and identification of social and psychological problems or challenges remained curiously absent. This presented the academic wing of the research team with an interesting ethical and methodological dilemma to explore and opened up a dialogic space within which we were able to interrogate and reflect upon how young people themselves defined and faced the extraordinary realities of challenges in their lives.

We suggest that stories such as Jasper’s Answer attempt to reframe psychology’s individualised problems as individuals navigating experiences and subjectivities in relation to other people and social contexts. The stories open up new possibilities for our characters to challenge dominant discourses that position them as targets of psychological categorisation and intervention as they explore their relationships with others and the world. As Frank (2010, p. 5) reminds us, “stories always pose that question: what kind of truth is being told? Stories never resolve that question; their work is to remind us that we have to live with complicated truths.”

The story considers a possible future for Jasper, perhaps one that is at odds with the possible futures that may have been mapped out for Peter according to his diagnosis. Although Peter is indeed an excellent baker, his journey to any kind of fulfilment of this vocation has been beset by difficulties of “fitting in” to educational establishments along the way. His expressions of empathy (wanting to “change people’s lives”), his uses of metaphor, and his willingness to help, are all characteristics that contradict the negative checklist of autistic traits. For Jasper, his absorption in tasks and his insistence on details lead to creativity and success; rather than relegation to the margins of society. We agree that “stories do not just have plots. Stories work to emplot lives: they offer a plot that makes some particular future not only plausible but also compelling” (Frank 2010, p. 10, original emphasis). By picking up on “those aspects of lived experience that fall outside the dominant story” (White & Epston 1990), we are offering an alternative story that Peter himself, but also others who come to know Jasper, might interpret as a plausible and compelling future.

Concluding thoughts and ongoing dilemmas

This research project aimed to explore and address issues of inclusion, and representations of marginalisation in children’s literature and wider society. The children and young people participating with this project sometimes indicated that they were cast in roles that located the source of psychological “problems” inside their brains or bodies. To counter this, the co-creation of alternative narratives allowed the young people a greater measure of agency in the production of knowledge about the “realities” of being and living in a society that marginalises them. The story Jasper’s Answer is grounded in an understanding of autism that seeks to provoke further debate about what constitutes a “valid” response to understanding some of the challenges that children and young people experience, both as research participants and as subjects of “proper” research.

Our reflections on the construction of Jasper’s Answer remind us of the heuristic value of uncertainty, offering the means to explore ambiguous relations of power, responsibility and agency that can catch us “off guard.” Along with Patti Lather (2009, p. 18) we seek to resist “the tendency to avoid the difficult story” or Britzman’s (2000) “easy story” to tell, and aspire to chase away the myth of the “all knowing” competent researcher. Instead we foreground these moments of uncertainty and ambiguity as a provocation of the possibility that a researcher’s reflexive voice can ever be enough. Methodologically, the story encourages re-thinking who is able to engage in the production of knowledge about themselves and others like them. After all, Peter is an expert informant in the creation of Jasper and his story.

So ultimately by employing fiction, methodologically we facilitate the amplification and dispersal of our young participants’ voice/s while acknowledging that “voice always evades capture” (MacLure 2009). Our stories, rather than getting any closer to “the truth,” aim to help us—our participants, ourselves, and our readers—to understand not “what people are” but “who people can be” (Banks 2008).

Additional information

Funding

The research project Stories to Connect was funded by the U.K. Arts and Humanities Research Council.

Notes on contributors

Candice Satchwell

Dr Candice Satchwell is a reader in education and literacies at the University of Central Lancashire, United Kingdom. She has conducted research with a wide range of different groups, in and out of educational settings. She is particularly interested in literacy as a social practice and uses of story-telling in research and in life.

Gail Davidge

Dr Gail Davidge has research interests across the disciplines of psychology, sociology, education, and childhood studies. She is particularly interested in narrative research and developing critical understandings of inclusion and “voice,” especially in terms of exploring children’s subjectivities and opportunities to participate in education and everyday life. She is currently a postdoctoral researcher at the University of Manchester, United Kingdom.

Notes

^1. More information about the project, including innovative methods of disseminating the stories, can be found at our website http://stories2connect.org/

^2. Here we are referring to Mikhail Bakhtin’s ideas that in claiming to have the last word on something through the telling of stories, this forecloses what another person may become, as discussed by Frank (2010, p. 16).