Writing a diary offers an avenue for healing a damaged sense of Self. Diarists record interactions with Others that both confirm and invalidate. Simultaneously, they exercise agency in framing these interactions. In this essay I explore the dialogic nature of 18 diary entries written by “Paul,” an autistic man, who shared them with me during my master's thesis research. Through internally dialogic strategies such as playing with genres, adding layers, and creating characters, Paul captured and resisted invalidating interactions with others. Additionally, by designing his diary to be shared with others, Paul cultivated the space for an I–Thou connection.
I am struggling to listen. The Skype video is pixelated, and the audio drops in and out. Paul speaks in monotone and looks down and off to the side.1 Yet, as I nod mechanically and move on to another interview prompt, I realize that these physical distractions are not the only reason I am struggling.
Paul is the last interviewee for my master's thesis—the one who will appear as a nice round number on my spreadsheet of participants. He is the icing on the cake of a grounded theory that I am already sure has all it needs to taste rich, complex, and full of flavor. Each answer Paul gives is being mentally sorted into recognizable ingredients: “Ah, yes, here is some salt, an egg, a spoonful of sugar to help the suffering go down.”
“I almost killed myself back in December,” Paul says, “you're the first one I've told.” My brain freezes mid-sort, struggling to process what I have just heard. With this sentence, Paul calls me back to this moment, this conversation, this human being. Here is a person sharing his pain. Here is a person speaking to me/with me/through me as part of a continuing effort to develop a tolerable sense of Self. Here is an opportunity to bear witness to a life.
Suddenly I am truly listening. I listen with the hope that my listening can make a difference. At the end of our interview, Paul surprises me for the second time: “I have a diary. Would you like to read it?”
My thesis began as an exploration into how individuals with an autism spectrum disorder (ASD) communicatively construct an autistic identity online. ASD is characterized by communicative, behavioral, and social challenges, including potential limits on verbal speech, sensory issues (e.g., sensitivity to sound or touch), difficulty internalizing social norms, and a limited ability to recognize nonverbal cues (e.g., facial expressions or sarcasm).2 One of the most devastating potential outcomes of ASD is stigmatization, social isolation, and negative impact on mental health.3 While these biomedical descriptions of autism provide helpful background, my research was truly inspired by how segments of the autism community have embraced an autistic identity. Some eschew people-first language—the reason I have chosen not to use people-first language for the remainder of this essay—and identify as an Aspie (Asperger's syndrome) or as Autistic. These members of the autism community draw from neurodiversity discourses, which frame humanity as a spectrum of difference.4 As part of this spectrum, the autistic mind provides a valuable counterpoint to the dominant, neurotypical perspective. I found that through reclaiming the concept of “normalcy,” reframing pathologizing “symptoms,” and claiming agency, members of online groups construct an autistic culture and advocate on its behalf.5
By focusing on this expression of posAutivity,6 however, I shielded myself from the pain that is often its precursor. Intellectually, I understood that autistic people sometimes endure years of feeling broken and misunderstood before they come to embrace an autistic identity. My interactions with Paul, however, demanded that I immerse myself in this struggle. Paul gifted me with his pain. This essay is my response to Paul's unexpected gift. In it, I turn to scholarship on dialogue to understand the nature of Paul's diary, its impact on his ability to heal, and its power to develop our dialogic connection.
RATIONALE: A SCHOLARLY MONOLOGUE
As my doctoral coursework exposed me to ideas from Mikhail Bakhtin and Martin Buber, I began thinking about how my interactions with Paul might be understood as a multilayered experience of dialogue. I recognized the internally dialogized nature of Paul's writing itself, but was also fascinated by how receiving the diary called me to participate in a dialogic relationship. In the following sections, I articulate the concepts that helped me to engage with these layers.
Dialogue in Writing: Authorship
Paul's diary is a compelling example of how authorship constitutes a potentially healing, internally dialogized process. Through authorship, writers place their experience of the external world in dialogue with their internal understanding of it. “We come to know what we know in this dialectic process of constructing a text (a body of knowledge) and thus learning what we are capable of saying (our knowing body).”7 Through this process of translating experience into objectified thought, we author our lives.
Bakhtin paid close attention to how literary structures lend authors power to unsettle dominant ideologies. The novel is a dialogic entity composed of the stratified layers of different languages. Languages represent ideological systems, embedded in speech genres, jargon, and characters’ actions. By orchestrating these layers, authors produce a state of heteroglossia: the symphony/cacophony produced by the intersection/collision of multiple voices. Thus, the novel becomes “an artistically organized system for bringing different languages in contact with one another” for the purposes of troubling dominant discourses.8
For those who occupy a marginalized standpoint, self-authorship is a source of resistance. Creative self-expression is “a political gesture that challenges the politics of domination that would render us nameless and voiceless.”9 Through writing, marginalized people “reject internalized, psychological oppression.”10 Even unexpressed, internalized efforts to become self-defined and self-evaluating are activist activities.11 For instance, bell hooks noted that writing in her diary was an act of defiance, one that taught her “to be vigilant in the nourishment of [her] spirit, to be tough, to courageously protect that spirit from forces that would break it.”12
Essentially, autobiographical writing is a process of Self-objectification. Through writing, individuals situate their experiences in a cohesive structure, authoring a narrative that lends a sense of coherence to their lives. However, while writing allows us to make sense of our world, connection to the Others in our lives provides us with a sense of our own humanity.
Dialogue in Relation: Self and Other
The Self is inherently relational; “it is like a sign in so far as it has no absolute meaning in itself: it, too (or rather, it most of all), is relative, dependent for its existence on the other.”13 Even the agency of authorship is bounded by our relationship to the Other. Although we author ourselves, “the materials of creation are always provided by the Other” who stands outside of us and perceives us as a finished object.14 Others may address us as It, attending only to certain aspects of who we are: our gender, our social status, our ability to conform to the expectations of “normal” interaction. In these cases, we become a “thing among things,” objectified by Others’ experiences of us.15 In moments of grace, however, we participate in dialogic connections with those who address us as Thou—those who remain present to/with us in ways that validate our holistic sense of Self.16
Because the “I” is dialogic, it emerges from the continuously shifting relationship between the utterance of my being and the response of the Other. Thus, each time we situate ourselves in relation to new Others, we activate different versions of our Selves. William K. Rawlins notes that when we select friends, we simultaneously select the co-tellers and co-authors who co-construct the stories of our lives.17 This idea provides hope to those who feel misunderstood; to a certain extent, we can rewrite our Selves by seeking better co-authors. I wondered if this was Paul's purpose in sharing his diary with me.
Exploring Dialogue in the Diary
The diary provides a context for studying both the dialogic nature of self-authorship and the dialogic process of creating a Self in relation to Others. Diaries have been characterized as a series of dated entries designed to capture the present and preserve it for the future.18 There are several hallmarks of the traditional diary, including (a) the use of a single, sustained authorial voice; (b) an “organic text” that “parallels the immersion in life” by remaining unfinished and expressing little concern with plot or “significance”; and (c) a sense of privacy, such that readers experience the “voyeuristic thrill” of entering into a secret world.19 However, researchers have noted challenges to this idealized depiction.
First, diarists sometimes incorporate others’ texts, creating a patchwork of voices. As Ella Ophir notes, it is this “form of diaristic writing that lays bare how individual self-definition is forged through intersubjective reflection and response.”20 Second, diaries do not represent an unmediated transcription of life; they construct a coherent world filtered through the author's perceptions. Experiences are recounted in “diary time,” wherein writers give little space to the common, mundane events that constitute the majority of lived experience, but devote pages to rare, meaningful encounters.21 Further, modern diarists often generate digital files rather than handwritten textual artifacts. Digitization, which streamlines the process of revision, encourages diarists to self-consciously (re)construct their own narratives.22 Finally, researchers have troubled the notion that diaries are inherently private. Their analyses have revealed a sub-genre of “public private diaries,” characterized by a topical (versus chronological) structure and a focus on developing characters, scenes, settings, and themes.23 Though not necessarily intended to be shared, these diaries evoke an imagined audience. In contrast, digital diarists (e.g., bloggers) write with the expectation that their stories will be consumed by potentially responsive strangers.24 In the online environment, “diary writing has shifted… from a solitary venture… to a means of reaching beyond the confines of dailyness, beyond the people with whom one has daily contact, perhaps to discover and perform some different version of oneself.”25
As I returned to Paul's diary, I asked: What strategies had Paul used to author himself? How had Paul's interactions with Others shaped his sense of self, as captured in his diary? While some of the features of Paul's writings matched those of the traditionally organic, private diary genre, others suggested Paul's active attempt to render his private experiences intelligible to an imagined audience. Why had Paul selected me as his audience? More importantly, how might I generate a response as both an academic called to analyze and a human being called to dialogue?
METHODS: BUILDING A DWELLING FOR DIALOGUE
When I first met Paul, he was a 21-year-old graduate student getting his master's in accounting. He had responded to my recruitment post to an online community called Aspies for Freedom (AFF).26 Soon after our interview, Paul sent several emails containing files culled from his digital diary. Eighteen diary entries arrived in my inbox, totaling 28 single-spaced pages.
Reading Paul's diary felt uncomfortably voyeuristic. Reading meant listening to some of Paul's darkest thoughts; it meant witnessing Paul's incremental self-destruction. At the same time, reading meant accepting the dual roles of confidante and co-author. I felt inadequately prepared to accept these roles. As a 20-something master's student myself, I had been trained to dissect, code, and analyze. Yet, how could I “analyze” something so personal? I felt called to simply narrate Paul's story. But what qualified me to tell it? My first experience with autism involved caring for my two-year-old cousin. All signs of his autism inexplicably disappeared before he turned five, but my interest remained. My research had lead me to read others’ experiences of life on the autism spectrum, but as a neurotypical woman I could not claim these experiences as my own. How could I speak with Paul about the nature of his autistic identity, instead of speaking for him?27 Initially, I chickened out. I folded quotes from Paul's diary into my thesis and met the deadlines for a diploma, but I could not shake the feeling that I had failed Paul. Two years later, I emailed Paul to ask if he still felt comfortable with me writing about his diary. “I don't see how you didn't do my writings justice in your thesis paper,” he responded, “but if you want to use my writings in your new research, please feel free to do so.”28
My ensuing doctoral work exposed me to dialogical and phenomenological approaches to research. I began to understand the struggle that had blocked me earlier. On the one hand, I felt driven to understand how Paul's diary “worked.” This kind of analysis would transform Paul into an It, objectifying his lived experiences. On the other hand, I needed to simply listen to Paul—to address him as Thou through my listening. I began to think of my research process as a type of “listening being,” described as a “dwelling place from where we offer our ethical response, our hospitality, to the other.”29 I needed to write/build a dwelling place from which to respond.
Max van Manen's descriptions of hermeneutical phenomenological writing helped me to grapple with this tension by embracing three writing paradoxes. First, “writing separates us from what we know and yet unites us more closely with what we know.”30 What I knew was that Paul's diary, and his decision to share it with me, was deeply significant to both of us. What I needed to know was why. Writing forced me to disembody the knowledge I already embodied, allowing me to reclaim it in a “new and more intimate manner.”31 Second, “writing distances us from the lifeworld, yet it draws us more closely to the lifeworld.”32 Writing about Paul's diary required distancing myself from its contents—from Paul. As Lisa Gasbarrone acknowledges, “the distance between self and other is not a gap to be bridged or a void to be filled, either through domination or inclusion; for it is in this very space that ‘interanimation’ occurs.”33 Distance provided space to engage with Paul's words without absorbing them as my own. I preserved this distance in my writing by alternating between the impersonal voice of analysis and a more personal, reflexive voice, and by sharing longer passages from Paul's diary to preserve space for his voice. Third, “writing decontextualizes thought from practice and yet it returns thought to praxis.”34 Choosing quotes from Paul's diary meant shattering the arc of his story by excerpting moments that were themselves excerpts of Paul's lived experience. Just as the decontextualizing act of writing allowed Paul to (re)locate the significance of his everyday interactions, the decontextualizing act of writing allowed me to interrogate Paul's words to gain a deeper sense of their purpose. Writing meant reconstructing the arc of Paul's story; it meant linking chronologically ordered excerpts by naming the animating forces shaping that arc. Writing returned thought to praxis, or “thoughtful action,”35 by allowing me to make sense of Paul's sensemaking.
I began my writing process using a tool that was familiar to me: thematic analysis. I read each diary entry multiple times. In a first round of open coding, I located en vivo codes such as the words “inhuman,” “abnormal,” and “different.”36 These codes marked critical incidents when Paul produced negative self-descriptions. Additionally, I coded occasions when Paul expressed pride in his identity (e.g., describing his skill with numbers). I also located moments when Paul's writing reflected awareness of an audience. In a second round of focused coding, I further coded these instances to identify strategies of self-authorship.37 Finally, I examined the “last updated” notes Paul included at the end of each diary entry. Close inspection of these time stamps revealed that Paul had edited earlier entries and inserted new ones, (re)constructing his diary for a reader. Why me? What does it mean to accept another's diary? Asking these “wondering questions”38compelled me to (re)examine my emailed responses to Paul's disclosures.
Paul's unexpected confession rattles me. Is he in danger? Did I say the right things? I stare at my blinking cursor, poised to write an email that would send Paul the crisis line phone numbers I have collected from counseling services. What should I write? I recall a moment Paul had related with pride: a story about warning his family that a candle had just ignited the clutter on their Christmas banquet table. After several edits, I send this message:
I'm very glad that you decided to stay with us past December 20th, and that you are feeling better now. Good thing you were there to prevent that holiday fire! I know life gets overwhelming sometimes—especially as a graduate student. I can get really stressed out, and find the counseling services on my campus to be very helpful. If you ever feel down again, I hope you can reach out to someone. Here are a few resources for counseling in New Jersey, should you ever need them. I wish you the best of luck for your Spring semester!sarah39
My words seem inadequate. They are punctuated by the nervous laughter of exclamation points. They do not acknowledge the depth of Paul's pain or its source. Still, a week later, I receive the first of Paul's diary entries.
Chapter 00: Introduction
It is his insistence, his utter conviction, that he is going to say what he has to say, and that the audience, by God, is going to listen. It is the very same quality that makes a star actor, a great public speaker, and a lunatic.—an enemy of the people, arthur miller40
At the start of every chapter, I have included a scene or quote, usually from a book, movie, or TV show. These scenes try to put my experience into the context of what normal people may or may not experience, to improve understandability.
My life was very different from everyone else's for many reasons. I have Asperger Syndrome (AS), but I doubt that every tiny detail of my life can be explained by that disorder. … In my recent past, I have begun struggling between saving the world and working toward becoming more like everyone else. The focus that I have taken should be obvious by my death. I probably want to be like everyone else because I have never been able to blend in with crowds, and as the saying goes, the grass is always greener on the other side. Many Americans are unhappy with a good job, family, and life altogether. But they don't realize how much worse than that it can be. You may want to leave your life behind, but I actually want to experience that life for once. Some people strive for greatness, but I just want a normal life.
…. I apologize if some of my story doesn't make any sense; I didn't review the story after I wrote it. … There may be times when you will want to just stop reading this story, and rest for some time. And that's okay; some very disturbing stuff has happened to me. Just remember that you are able to stop reading. I had to live like this for my entire life.
Welcome to hell. Population: me.41
Reading this opening chapter left me feeling uneasy. Was I facilitating a suicidal person's desire to leave a note? I waited anxiously for each new chapter to appear in my inbox. As I continued reading, I noted how Paul's sense of Self developed in relation to the Others in his life. I also realized that, in writing this diary and sharing it with me, Paul was taking an active role in authoring himself. In the following sections, I explore how Paul's diary “worked.”
SELF IN RELATION: CHRONICLING THE IMPACT OF I–IT ENCOUNTERS
Paul's diary provided an in-depth account of how his sense of Self developed in response to conversations and encounters with family members, peers, and the media. Influenced by these interactions, Paul measured himself against a standard of “normal” that he felt was beyond his reach. Gradually, however, resistance to this damaged sense of Self emerged from his writing.
Through conversations with his parents and through interactions with peers and the media, Paul came to understand himself as inhuman—an object pinned down at the intersection of biomedical and popular discourses of normalcy. This process begins in Paul's account of his initial diagnosis, following a conversation with his mother:
“You aren't playing with the other children, and you like to play by yourself.”
“So?” I had no idea that playing by oneself wasn't a normal thing to do.
“Don't you want to start playing with them?”
“Not really.” That was the truth. I saw no reason to connect with anyone else.
But my parents did. So they took me to [a] doctor, not the doctor that I've been seeing regularly, but a different one. He asked me some questions, and didn't do the normal procedures that my regular doctor did.
In the end, he left me in the examination room, closing the door, and talking to my parents in another room. I didn't know what he was telling them. I didn't know that what would be said would have explained everything, or even what that everything was. And I didn't know that it changed whatever they knew about who, or what, I was.42
Initially, Paul does not differentiate his own behaviors from those of “other children.” Only his mother's questions, and the subsequent doctor's visit, suggest to him that he is not “normal.” However, Paul's diagnosis is withheld from him, denying an explanatory resource that would have helped him to craft a new identity. Instead, Paul's father starts to treat him differently based on this understanding of “who, or what” he is:
He noticed that I was laughing a lot back then, without any apparent reason. He insisted that I explain to him what I was laughing at. It became obvious that he would interrupt me whenever he saw me think of something funny, so I began to censor my thoughts.43
The problem is that when I needed something to think [about] that would prevent persistent sadness, not only was I afraid to think it, but I was [also] unable to come up with something funny to think of. … That was when my depression started. The majority of my thoughts were very dark, to the point that one of my happier thoughts was that I was already dead and in hell. … As for my worse thoughts, I saw suicide as my best option.44
In trying to shape his son's “deviant” behavior, Paul's father places his son in a double-bind.45 Paul's need to think of something “that would prevent persistent sadness” clashes with the mandate “don't laugh.” Trapped in a system of family rules with which he cannot comply, Paul determines that his only way out is self-annihilation.
Eventually, Paul's mother discloses his diagnosis. He initially welcomes this news as a respite from guilt: “My first thought … was that my problem with talking to other people wasn't my fault. It didn't result from something that I did in the past, or at least from something that I had any control over.”46 Yet, conversations with his father continually disparage Paul's autistic identity: “My father was already pointing out the related problems that I had, including my excessive ticklishness, lack of friends, and lack of a drive to exercise.”47 More than this, Paul's father actively tries to “break” him of his sensory issues by continually touching him. Fearing his father's anger, Paul develops elaborate rituals to manage the “tickling” sensation he experiences when touched. Paul describes the physical and psychological damage caused by these interactions:
My dad also touched the backs of my shoulders more repeatedly, sometimes touching one of these areas ten times in a single minute, which forced me to scratch that area 100 times… with enough force to cause bleeding, get some of that blood under my fingernails, and, in very rare cases, get some of my skin under my fingernails.
The irony is my dad was doing what he did because, he claimed, he was trying to force me to relax, which, it turns out, is possible. It's like making a horse drink water. If you hold its head underwater long enough, you can make it do anything that you want it to do. Or the horse will drown, and if you keep trying it with other horses, evolution will favor the submissive horses.48
Suffocated by his father's “help” and aided by biomedical constructions of Asperger's Syndrome, Paul internalizes a broken sense of Self:
I read that people with my condition are usually able to live normal to near-normal lives. This statement implies that people like me are not normal. I didn't think that I wasn't like everybody else at the time. I barely even noticed that I had AS. That, however, was rapidly changing, as I looked to fix this disorder of mine.49
Subsequently, Paul uses his diary to catalogue evidence that he is “not normal.” For instance, Paul describes his response to taking an aptitude test in his Advanced Placement Psychology class. Most of his classmates reported “interpersonal relations” as their dominant aptitude. “These students are viewed as the success stories of modern times,” Paul writes, “with my AS I never could have dreamed to be like those other students.”50 Similarly, after making the observation about texting that “pretty much every human American teenager does it,” Paul elaborates:
In that thought, the word “teenager” was meant to exclude the very young and very old people who don't need to do it. The word “American” was meant to exclude the people in developing nations, who might be too poor to need texting capabilities. And perhaps worst of all, the word “human,” other than animals, was meant to exclude myself. I have never sent a single text in my life. I just see no point in doing it… because of the mental problems that led to that lack of a desire, I wasn't fully human.51
In these passages, Paul articulates the idea that a person's ability to be a “success story” in “modern times” depends on their capacity to establish and maintain relationships. We measure our worth by noting the size of our network. In a communicative environment characterized by the perpetual connection of texting and social media, our sense of being “fully human” becomes linked to the experience of receiving a message, earning a “like,” and generating a re-tweet. However, Paul recognizes that he has neither the ability nor the desire to participate in these communicative practices. As a result, he begins to question his own humanness.
Paul also uses events from popular culture to interrogate his humanity. He follows the television show Parenthood, and compares his own life to that of the teenaged autistic character, Max:
His parents were willing to give him certain accommodations, like special schooling, that helped him. The only accommodation that I had was that I met with a child psychologist for a few months. … Max reentered the public school system, and even developed a close friendship. Looking at his story from the outside, Max appears to be on the path to being able to blend in. And looking at my story from the inside, it appeared that I would never gain that ability.52
A storyline meant to inspire is yet another source of depression for Paul; it is a reminder of the limits of his own support system and of his inability to “blend in.” Additionally, Paul appropriates current events to reflect on his autistic identity. For instance, Paul writes about the significance of watching a robot, Watson, beat out its human competitors on Jeopardy!
It… shows a strange paradox of our time. It shows that we are creating things like Watson, machines that are like people. But at the same time, we are creating things like me, people that are like machines. I'm probably more like neurotypical people than I am like computers. But things like Watson and people like me are making it more difficult to tell the difference between machines and humans.53
This last rumination takes on a different character than previous passages. In comparing himself to a machine, Paul entrenches himself in the position of Other. Yet, Watson beat its competitors. Could Paul find something similarly advantageous about his autistic identity? If the line between human and machine is blurring, is the line between AS and neurotypical also dissolving? As I continued to read Paul's diary entries, I hoped that Paul would find a way to answer “yes.” Viewing Paul's life through his eyes, I experienced vicariously the unfairness of having the keys to one's own identity withheld, and the suffocating, oppressive impact of misguided “help.” As I read on, however, I began to see signs of hope.
Glimpses of Resistance
The last third of Paul's diary entries capture his subtle attempts to reclaim a positive sense of Self. Paul starts to push back against Self-threatening interactions and identifies positive aspects of his identity. This transition begins with a confrontation with his father, who lectures him after Paul pushes his hand away to avoid being touched:
“I brought you into this world, and I can take you out of it.”
Those fourteen words, spoken at about 8:45 p.m. that night, were the longest exact phrase that I can remember. And I almost laughed when he said that. … That man acts so erratically. Within the same week, he has told me never to change who I am, and to change everything about who I am. He wanted me to be my own independent person, and to become a younger version of him. That day, he may have said that he was proud of me for finishing my AP tests; I'm not entirely sure. But he definitely threatened my life that day, for something that I am unable to change.54
To defend against internalizing his father's words, Paul “almost laughs” at them. By characterizing his father's comments as “erratic,” Paul diffuses their power over him; this is a man who does not know what he wants. Finally, by defining his autistic identity as “something that [he is] unable to change,” Paul shields himself from self-blame and instead starts to develop a sense of righteous indignation in response to his father's threat.
Additionally, Paul begins making fleeting allusions to some of the positive elements of his Self. This is clearest in Paul's descriptions of his college accounting class, wherein his fluency with numbers helps him to excel. He recounts the first day of class, when the professor asks the students to calculate compound interest over ten years:
For the third year, the professor guessed that the next amount would be $1,030.20, to which I said, “No, $1,030.30.” The original volunteer used a calculator to confirm my right answers. After that, I just kept saying the following years’ numbers, like $1,040.60, $1,051.01, and $1,061.52. … Minutes before the following class, one of my classmates asked for how I did that. … I told him the truth, which was that “It's not in the book. It's Pascal's triangle.”55
In a subsequent entry, Paul recalls his professor's words: “In that Fall semester, he joked that another student in his Fall class, who was nineteen years old, was too young to be in that class. He said that about a month after my nineteenth birthday.”56 In these brief passages, Paul begins exploring an element of his identity of which he can be proud. After years of longing for the “normal” lives his classmates led, Paul starts to recognize that his propensity for logical and mathematical reasoning gives him an advantage.
Although Paul has begun to identify some positive elements of his identity, he is embedded in a family system that constrains this (re)creation of Self. The tension between embracing and despising his autistic Self peaks in the second-to-last entry, entitled “Things Fall Apart,” in which Paul writes of his reaction to viewing Parenthood's Max run for student body president:
What I didn't expect… was when Max announced to his school that he had AS. … What I expected even less was what he said at the end of his speech: “Some people say that having Asperger's can sometimes be a bad thing. But I'm glad I have it, because I think it's my greatest strength”. … I thought to myself, “I just have to come out with AS? That's all that it takes to win a job?” The way that people have always treated me suggested that if anyone knew that I had AS, they would think less of me.
. … The other thought that came to me after Max's win was, “How could he possibly like the fact that he has AS?” I could understand how the disorder can be a strength, but it created so many problems in my own life that I was planning to kill myself. … To me, this seemed like a paradox, to have AS and to like having it. The fact that someone could fulfill this paradox gave me some hope that I could be okay with it. Through my online research, that's how I found Aspies for Freedom (AFF), an online forum for Aspies (people with AS). I have been reading some of the forum threads on that website, which show that many of these Aspies have become happy with their condition. But I knew that my parents would never let me become happy with my condition, and for a separate reason [belief that the apocalypse was imminent], I knew that I had to leave this world before it died in two months, so I continued with my writing.57
Paul has begun to locate new relational partners/co-authors on AFF who help him to construct a positive autistic identity. At the same time, he cannot escape “real-life” Others who invalidate the autistic elements of his identity. Paul is continuously treated as It, even as he seeks the recognition of Thou. Faced with this “paradox,” Paul continues writing.
INTERNALLY DIALOGIZED: AUTHORING THE SELF
In crafting the previous section, I sought to understand how Paul used his diary to develop his sense of Self in response to the Others populating his life. In the process of reading, however, I began to realize how actively Paul crafted these entries to speak to others. Paul was not just addressing a diary; he was addressing me. Paul is an author in the Bakhtinian sense, orchestrating the heteroglossia of discourses in which he is immersed in order to render his perspective intelligible to an audience. This recognition sensitized me to the tactics Paul used to author himself, including troubling genres, adding layers, and creating characters.
Traditionally, a diary is a private, chronological log of everyday events recorded soon after their occurrence. Yet, several aspects of Paul's writings are inconsistent with the diary genre. First, Paul carefully framed each diary “chapter” using titles (e.g., Order and Disorder; A Sense of the Future; People like Machines) that highlight key themes for potential readers. Second, the “last updated” notes included at the end of each file reveal that Paul returned to his diary to edit old entries and insert new ones. For instance, while chapters 29 and 31 were written in June, chapter 30 was last updated in September. These anachronistic editing activities occurred between September and December 2012. Paul believed that the 21st of December 2012 would herald the apocalypse forecasted by the Mayan calendar. Through revising old writings and generating new accounts, Paul prepares for both the apocalyptic end of the world and the suicidal end of his life. Consequently, “Ch_00: Introduction” is the last entry he writes before speaking with me, updated on 19 December 2012. This is the first and only entry in which Paul addresses the reader directly. In doing so, Paul unsettles the reader's ability to slot this set of writings into a single genre: Is this a diary? A memoir? An extended suicide note? Through his revisions, Paul orchestrates authority over the events of his own life.
Adding Layers: Anecdotes and Hybrid Construction
In authoring his life's story, Paul develops a layered text that places various discourses in dialogue with each other. For instance, Paul uses quotations from books, movies, and television shows to frame several chapters. Interestingly, introductory quotes are typically included in chapters that were written at a later date, when Paul has begun to transform his “diary” into a document written for an external audience. These quotes function much like van Manen's definition of an anecdote: a device that allows speakers to capture indirectly the “unspeakable or ineffable in life.”58 Anecdotes possess the paradoxical ability to tell “something particular while really addressing the general or the universal.”59 By connecting his experiences with anecdotes from popular culture, Paul actively seeks to “improve understandability” for potential readers.60
Paul complicates the impact of these anecdotes by transforming them into hybrid constructions: “An utterance that belongs, by its grammatical (syntactic) and compositional markings, to a single speaker, but that actually contains mixed within it two utterances… two ‘languages.’”61 The most powerful example came in “Ch_36: Activation”:
A man finds himself restrained to a bed. His female captor wishes to teach him a lesson. She explains what she's about to do: “Paul, do you know about the early days at the Kimberly diamond mines? Do you know what they did to the native workers who stole diamonds? Don't worry; they didn't kill them. That would be like junking your Mercedes just because it had a broken spring. No. If they caught them, they had to make sure they could go on working, but they also had to make sure they could never run away. The operation was called hobbling.” The woman then puts a large wooden block between the man's ankles.
Paul, desperate, says, “Annie, whatever you think about doing, please don't do it.” She holds up a sledgehammer, bent on going through with her plans. “Annie, for God's. … God's sake. Annie, please!”
As he says this, Annie says, “Shh. Darling, trust me. It's for the best.” She swings the sledgehammer at the man's left leg.
At this point in my life, I guessed that I was the victim of someone's insanity. But I still don't know who was the one causing my injuries; my father or myself.—misery62
With these final two lines, which he includes before providing the source of the scene, Paul inserts himself directly into this fictional depiction of torture and control. Further, Paul chose “Paul” as his pseudonym, literally transforming himself into the character depicted in the movie. These decisions remind the reader that, even as Paul shares movie scenes that are not of his own creation, he recreates them in the way(s) he has chosen to describe them.
Paul does not simply provide his reactions to everyday experiences; he animates the people who populate those experiences. Bakhtin describes characters in the novels as ideologemes: “each character's speech possesses its own belief system… thus it may also refract authorial intentions… [and] constitute a second language for the author.”63 Through sharing the speech of his parents, teachers, peers, and fictional television characters, Paul presents an ideological system that constructs his autistic identity as abnormal and inhuman.
The nature of the diary genre, which purports to report everyday events accurately, constrains Paul's ability to develop completely fictional characters. Yet, Paul does introduce one character that, in a sense, he controls: Avogadro's number. In “Ch_30: A Sense of the Future,” Paul explains that Avogadro's number, 6.022*1023, is the number of carbon 12 atoms that make up 2 grams, observing that the numbers 10 and 23 are embedded in the “very atoms that make up the universe.” Additionally, he notes that when the first four digits of his Social Security number are added together, they total 23. Further, when the digits before and after the first dash in his Social Security number (xxx–xx) are added together, they total 230, or 10*23. Because his classmates frame Social Security numbers as a governmental conspiracy, Paul associates his and other Social Security numbers with the “Mark of the Beast.”64 In subsequent chapters, Paul transforms 1023 into a character that signifies bad news. He recalls looking at the address on the door across from his aunt's former condominium: 3210. Paul associates this anagram of 1023 with a countdown, symbolizing both the impending apocalypse and his own suicide. The number 1023 becomes a device through which Paul expresses his anxiety in refracted form. In his final diary entry, written after our interview, Paul disavows the number's ominous power as he writes about the progress he has made toward embracing his autistic identity.
Chapter 70: Epilogue
That night, as I do every Christmas Eve, I watched It's a Wonderful Life on NBC. I already knew that one message of that movie was that life is a thing to be valued. But in late 2012, I learned another message of the movie, that life may not be perfect, but it beats the alternative (my dad used to say that so many things about life “beat the alternative”). … I began fully realizing one thing about me; I was still alive. My life may not be what I wanted for myself, but I'm still alive.
I also noticed that after I wrote everything important that happened to me, I started forgetting what happened. All of my traumatic experiences and horrible thoughts were a part of my past, where those experiences and thoughts belong. This realization allowed me to think about my future. … It seems that I had to hit the bottom before I could start climbing back up.
. … And the numbers 10 and 23, while they might be everywhere, are just a coincidence. Whenever I see the numbers together, I think of it exactly like many people see the concept of yin and yang, which is that there must be balance in the world.
On January 1, I created an account with Aspies for Freedom (AFF). This account allows me to communicate over the Internet with people experiencing many of the same problems that I have had in my past. Their experiences, as I see it, are progress. When I read the posts of other people on that website, I notice that these people have come to terms with their Autism. It didn't go away in any of them, but a lot of them have been able to get rid of the negatives of their Autism.
. … All of this recent progress has made me seriously ask myself a question: if I could get rid of my AS, would I? In the past, I haven't thought about that question much; the barriers to its possibility were too great, and my experiences were so bad that I thought of a normal life, one without AS, as an enviable goal. But when I look at the question now, I don't know the answer.
. … But speaking to people anonymously isn't enough. Eventually, I will need to talk with people who know who I am… I have already started with this step. On January 29, I spoke through Skype, face-to-face, with a graduate student who goes to another school. … She was the first person off of AFF that I have told about my AS, my OCD [Obsessive Compulsive Disorder], my depression, or my schizophrenia. And more importantly, she was the first person, other than myself, to know about my suicide plans. I'm over 17 years old, so she is not obligated to tell anything to my parents or the authorities unless I am a threat to anyone. I'm just hoping that she knows that these plans were in my past.
The graduate student helped me to open up with my problems, and I helped her with her thesis. At its most basic level, that's what economics is: people helping each other through trade. … For my next step, I spoke with someone at my school's wellness center. That wellness center has a counseling service, and I met with a counselor on February 14. That meeting was the first time that I told someone in person, not over the Internet, about my problems. I have since returned to counseling on a weekly basis.
. … As of today, I have been alive for over 21 years. In those years, I have learned so much about the world, and so much about myself. I have learned that to ask “What is normal?” is like asking “What is the majority?”. … And I have learned that I am not at all like everyone else, but that that doesn't make me inhuman.65
This final diary entry illustrates the intersection of Self as authored and Self as constructed in relation to Others. In it, Paul tells of how he has begun to situate himself in relation to a group (AFF) that encourages him to construct a positive autistic identity. Further, Paul actively authors a new sense of Self. His father's words, previously used to characterize Paul's oppression, are appropriated to express his newfound sense of hope: “my dad used to say that so many things about life ‘beat the alternative.’” Avogadro's number, once used as a character to symbolize impending doom, is transformed into “the concept of yin and yang.” Through writing, Paul renders experiences into objects that can be relegated to the past, “where those experiences and thoughts belong.” By writing to document his path to self-destruction, Paul writes his way to self-redemption. By sharing his writing with me, Paul initiates a dialogue that might provide external validation for the internal progress he has made.
BEYOND THE PAGES: DIALOGUE BETWEEN DIARIST/PARTICIPANT AND READER/ RESEARCHER
“I spoke through Skype, face-to-face, with a graduate student who goes to another school.” It takes me a moment to register that I am the “graduate student.” The realization evokes the odd sensation you get when you overhear others talking about you—others talking loudly enough to ensure that you will overhear. Paul has transformed me into a character in his story. As I read about the “graduate student,” I recognize that Paul has created a space in which he can speak to me indirectly. He simultaneously invites me into dialogue while maintaining the distance between us. By writing “I'm just hoping that she knows that these plans were in my past,” Paul tells me to stop worrying about him. By sharing his decision to visit a counselor, Paul tells me about the impact I have had on him simply by providing a safe space for self-disclosure. I am a stepping stone in Paul's Self-transformation.
I wonder if Paul recognizes how much I need these words. Reading them reignites the inspiration I felt at the outset of my thesis journey; it validates my decision to be an academic. I think about how, in the process of rendering Paul as a character in my manuscript and sharing it with him, I can speak to him in a similarly indirect way about how receiving his story has impacted me. The process of conducting member checks takes on greater significance; it is an opportunity to validate Paul's story while preserving the productive distance between us. Hoping both to affirm Paul's progress and to invite him into my research process, I write:
. … In your writing, I can see all the struggles you've gone through, often without anyone in your corner who truly understands you and what you are dealing with. … It is stories like yours that motivate my own drive to do research, and your story deserves to be told. As I wrote before, I'm trying to figure out the best way to do this so that your experience doesn't get lost in the midst of all the data of my thesis. I know that it has the power to inspire others, just as it inspired me.sarah66
“I was going to write, ‘I hope that I was helpful with your research,’” Paul responds, “but it looks like I don't have to hope. I'll just say that I look forward to reading your thesis.”67
Actually sharing my thesis with Paul is a nerve-wracking experience. So much of my identity is bound up in this document; I am presenting my academic Self to Paul and asking for approval. It is difficult to swallow Paul's initial response: a list of edits. “No offense,” Paul writes, “but it is obvious that you're still editing the paper. I have found so many typos in just the parts that I have read so far.”68 Yikes. Paul sends even more edits in a follow-up email, along with a series of clarifications. Have I gotten anything right? Paul answers this question with the last line of his second email: “Thank you. For everything.”69
These simple words affirm my worth as a researcher/human. They say, “You've made a difference in my life.” Reading them makes me wonder if perhaps the key to establishing a dialogical relationship is recognizing each person's desire to be helpful. In his final diary entry, Paul described research as “people helping each other through trade.” Framed in this way, the research process enables us to make ourselves vulnerable for the purpose of helping Others. When Others accept our help, they accept us. By creating the conditions for people to engage in mutual helping, dialogical inquiry offers the opportunity to experience mutual validation. “Thank you so much for taking the time to give me such thorough feedback,” I tell Paul. “I hope to find a way to make this thesis turn into something that can help others. If you'd like, I'll keep you updated.”70 “Please keep me updated,” Paul writes, “I want to hear how well you do.”71
DEAR READERS: A DISCUSSION AND CONCLUSION
Throughout this essay, I have discussed the potentially healing process of writing and sharing a “diary.” Through writing, diarists develop a sense of Self in relation to the Others in their lives. More than this, diarists author themselves in the process of creating an internally dialogized text. By documenting invalidating experiences, diarists can mobilize the agency of authorship to “reject internalized, psychological oppression.”72 This is a particularly important resource for Autistics who seek to reclaim their diagnosis as a positive identity category. Through writing, they reject internalized ableism and resist discourses that pathologize their humanity.
Further, by sharing their writing, diarists help to create the conditions for an I–Thou relationship that might validate an emergent identity. Sharing a diary cultivates a space for dialogue in which “listening otherwise” can happen—listening that occurs not “because of some strategic need I have of you, but because I feel with you, ineffably and irrevocably connected but not subsumed.”73 By framing their writing as a diary, writers capitalize on the assumptions attached to this genre. We think of diaries as intimate, private accounts shared only with those we trust. To receive a diary is to receive both the writer's trust and the accompanying ethical imperative to listen. To be listened to in this way is to be validated.
Of particular interest is how Paul troubles the diary genre to facilitate a connection with an external audience. This dual process of writing for one's Self/writing for Others evokes a digital world populated by blogs and YouTube confessionals—“diaries” designed for public consumption. Indeed, the neurodiversity and self-advocacy movements are driven in part by bloggers who document their experiences in an effort to confront their struggles, connect with other autistic people, and demand recognition from the neurotypical community.
However, this dual process of writing for Self/Others is fraught with tension. First, writing to document invalidating encounters may actually strengthen the impact of these experiences if the writer cannot reframe them. For Paul, reading others’ success stories on the AFF website provided the discursive resources he needed to resist the dehumanizing impact of his everyday interactions. If Paul had not encountered these empowering counter-narratives, would he have continued to write an extended suicide note? Second, as one of the reviewers for this essay noted, the ability to write dialogically reflects a certain level of linguistic privilege. Paul's diary “works” as a dialogical tool in part because he deploys sophisticated writing strategies to create an internally dialogized text. Would I have listened to Paul as intently if his writings were not so evocative? Through what other means might members of the broader autism community author themselves? Although writing dialogically requires a certain level of skill, art in general may provide a creative outlet for self-authorship. Websites like The Art of Autism have emerged to showcase “artism” and endorse alternative forms of autistic self-expression.74 Third, while individuals may attempt to enter into a dialogical relationship by sharing their writing, they may find that readers refuse to accept the invitation to dialogue. This is particularly true of digital diaries, wherein writers’ personal stories may be rejected by random readers. In contrast, Paul actively selected me as his reader.
My interactions with Paul caused me to examine critically the tensions inherent in the process of engaging in dialogical inquiry. By interviewing Paul about his autistic identity, I created a confidential space where he could rehearse the vulnerable process of acknowledging his challenges. When Paul unexpectedly told me of his past suicide plans and shared his diary with me, he me made cognizant of the crucial role I play as host of this research space. The interview is itself an intervention; I must respond in a way that validates Paul's emergent identity. But how? As researchers, we balance the dialectical tensions of phenomenological writing. We feel the need to address our participants as Thou, to listen otherwise, and to say, “I don't have to translate your words into familiar categories. … What I do need to do is stand in proximity to your pain.” At the same time, writing requires that we objectify both our participants’ words and our own lived experiences of them. This is itself a form of validation—a recognition that participants’ stories are worth engaging deeply, and that their experiences can contribute to some larger purpose. Dialogical inquiry requires researchers to recognize that it is through the dialectical process of shifting back and forth from the subjective to the objective—from listening to writing—that we develop meaningful responses.
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Sarah M. Parlsoe is Assistant Professor of Health Communication in the Department of Communication at Rollins College. She would like to thank “Paul” for sharing his diary and for reviewing previous versions of this essay. She would also like to thank Patricia Geist-Martin and William K. Rawlins for their mentorship and feedback on initial drafts. Some data used for this essay was collected during her master's thesis research process. Correspondence to: Sarah M. Parsloe, Department of Communication, Rollins College, 1000 Holt Avenue – 2777, Winter Park, FL 32789, USA. Email: (. )