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AUTISTIC CYBORGS:
Embodying Culture, Practicing Difference on the Internet
Master’s Thesis in Cultural and Social Anthropology Applied Track
Submitted to the Graduate School of Social Sciences Madina Dyussembayeva 12088730
madinadus@gmail.com Amsterdam, August 2019 Word count: 22.003
Supervisor: Dr. Anja Hiddinga
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Declaration: I have read and understood the University of Amsterdam plagiarism policy [http://student.uva.nl/msca/az/item/plagiarism-and-fraud.html]. I declare that this assignment is entirely my own work, all sources have been properly acknowledged, and that I have not previously submitted this work, or any version of it, for assessment in any other paper.
3 TABLE OF CONTENTS Introduction 4 I. GAZE 6 Biomedical gaze 6 Autistic self-diagnoses 7
Embodied autistic fiction 15
Knowledges that are not yet here 20
II. TIME 27 Crip time 27 Crip ethnography 29 Autistic development 35 Autistic presents 38 Autistic futures 42 III. EMOTION 47 Ugly feelings 47 Discomfort 50 Anxiety 54 Paranoia 56 Irritation 57 Joy 60 Conclusion 66 Bibliography 69
4 Introduction
In the opening chapter of his book entitled Bodies in Technology (2001), Don Ihde writes about technofantasies – “the intersections of technologies and human desires” – and provides this particular example:
But there are actual people who desire this symbiosis of computer and body. The persons described who wanted this cyborg existence turned out to have either
debilitated social skills or disabled-body-related reasons for the desire. In the case of the social cyborgs, the humans were extreme nerds in the sense that they found negotiating the social intricacies, of courtship in an Asian matriarchal society beyond their ability; in the case of the body cyborgs, some extreme physical disability was involved that made a computer synthesis seem preferable to the actual, limited body. (pp. xii – xiii)
Reading this passage, I think back to attending a meeting for autistic adults in Amsterdam last autumn. When other autistic people asked me what I did, and upon hearing my answer, they laughed in disbelief: “Did you say you study social anthropology?”
During my time in the field, I chose Autistic Cyborg as my online alias. In doing so, I was not referencing a particular theory, but being one of the few students in my class who chose to do digital ethnography, and also being, quite frankly, “an extreme nerd,” I had to ask myself if I was – as Ihde suggests – desiring a symbiosis of computer and body or seeking to overcome my disabled condition. What, in other words, was the assistive quality of the Internet in my academic work, and my self-narrative more broadly? Who is the autistic cyborg?
In answering this question, I would like to mobilize the notion of “interdependent crip methodology,” which centers disability and collective access, and in doing so, positions both the researcher and the interlocutors as essentially vulnerable (Price and Kerschbaum, 2016). Specifically, I will build on Price and Kerschbaum’s helpful framework that emphasises notions of gaze, time, and emotion. I will look at the role of these concepts in autistic
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narratives and my own digital ethnographic practice in order to describe how technology, and my interactions with #ActuallyAutistic English- and Russian-medium Internet more
specifically, alter the ways in which I experience and narrate my living body. My field has included closed Facebook and VK groups, autistic meme and art accounts Instagram, YouTube channels; blogs, public pages, and #ActuallyAutistic Twitter and Tumblr; and my primary mode of engagement was participant observation, accompanied by semi-structured interviews, autoethnography and informal conversations.
Lastly, in this paper, I am interested primarily in centering autistic narratives and lived experiences, as opposed to delineating diagnostic criteria and symptoms. This orientation will be reflected in my choice of literature, as well as in preference for identity-first language (‘autistic,’ as opposed to “a person with autism’). I hope that such a theoretical move will help bridge the gap between autistic knowledges and knowledges about autism. I find that the following quote by an interlocutor expresses this idea more eloquently,
I’m accustomed to identifying gaps and silences in scholarship, but I’d never before seen such a gaping hole. And this was intensified because I found myself standing in that hole. Being non-normative in many respects, this was nothing new to me, but I’d never before felt like I was so far out on the margins as I did/do as an Autistic woman.
In Chapter I of this paper, I will engage with the question of biomedical gaze in current constructions of autism, and I will further contrast these constructions with autistic self-diagnoses and embodied knowledges. In Chapter II, I will dwell on the concept of crip time and its role in autistic presents, futures and dominant constructions of human
development. Chapter III will center emotion: I will explore how emotion functions as a sociopolitical category that carries with it the power to transform material reality.
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I. Gaze
There are intimacies and knowledges that exceed the eye-to-eye, that exceed the I-to-I. We might call this the ga(y)ze, the queering of field, reference, and looking. (Yergeau, 2018, p.211)
Biomedical gaze
In Bodies in Technology (2001), Don Ihde writes that in modern sciences, vision serves as “the dominant form of perception.” He writes,
What I have sketched above is a science that perceives and represents. It does so through a preferred visual form of observation that is often, at least implicitly, taken to be monosensory. Its ideal observer is, moreover, placed in as high or godlike a position as possible and is motionless, the point of view from which any world may be seen. (2001, p.56)
Within the framework of autism studies, the notion of the godlike, omniscient observer manifests itself in the concept of the biomedical gaze.
In War on Autism: On the Cultural Logics of Normative Violence (2016), Anne McGuire adopts the Foucauldian notion of genealogy in order to critically engage with the history of autism discourses in Western/ized countries. She contends that current understandings of autism were born out of the 20th century’s efforts to define the norm against different forms of “degeneracy.” She says, “Born in and of the heyday of child psychiatry and child study in the 1930s and 1940s, contemporary versions of autism, as determined by Kanner and Asperger, were responses to an historically particular demand for clear ways of distinguishing and dividing abnormality from normality, pathology from health in the name of a scientifically perfectible human race” (p.36). Additionally, McGuire states that the efforts to draw the line between abnormality and normality against the autistic body worked in parallel with other forms of oppression: “Remarkably, contemporary biomedical practices of measuring and mapping the ‘disordered’ autistic brain are detached and divided out from
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(ongoing) ableist, racist, sexist, and heterosexist histories that draw on comparative anatomy and notions of biological determinism as a means of structuring an empirical hierarchy of embodied life” (p.50).
McGuire further argues that autistic subjectivities have been shaped by dominant discourses of advocacy work, which operate to surveil the autistic body and narrate it as a fixed, knowable “disease” in need of a cure, maintaining that the autism advocate has to work towards eliminating autism (p.68). Such a discourse marginalizes the autistic subject as a deviant who must be discovered by the biomedical gaze, which is disseminated beyond clinical practice through advocacy efforts of “autism awareness.” As such, McGuire writes: “Abnormalcy is unseeing—deviance can and must only be seen—it does not possess the qualification to dwell within the limits of the space of the see-er” (p.93).
Finally, McGuire states that while developments in digital technology have facilitated autistic resistance to the biomedical gaze by enabling alternative meanings and intersubjectivities, they also inevitably exclude some bodies and ways of being. She explains,
Autistics who are incarcerated, institutionalized, homeless, those who live in a geographical context without regular access to the Internet or who do not have financial access to the necessary computer technology are underrepresented in online neurodiversity and self-advocacy communities. The balance of power in these communities is thus invariably mapped along class, race, and gender lines. (p.63)
In this chapter, I will mobilize McGuire’s argument and my own standing as a “native anthropologist” in order to explore how digital autistic communities understand and construct autistic subjectivities within the current cultural framework of “the war on autism.”
The death of the clinic: autistic self-diagnoses
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Autism Spectrum Disorder, in my opinion, is something that should be diagnosed by someone with the authority to do so. Just like physical ailments, you wouldn’t diagnose yourself with skin cancer just because you have a mole that looks odd. Sure you should investigate it and say ‘I have symptoms of skin cancer’, but google searching isn’t equivalent of a diagnosis. If you don’t want to see a psychologist because you don’t believe them or their authority, you really shouldn’t be using the label of autistic at all. It’s not a personality trait and I’m done with being steamrolled by allistics who think they have the authority to diagnose themselves because they’ve read articles on it. It’s incredibly invalidating and before you say i’m ‘gatekeeping’- yes. I am. 100%. Because if you dont have the diagnosis of autism you shouldn’t call yourself as such.
Since my fieldwork officially ended in March, I discovered the post a few days after it had been originally created and, by then, it had more than 200 comments – more than I had ever seen under a single post in the three months of participant observation. It was clear that members of the group almost unanimously disputed the sentiment, finding it elitist and exclusionary. One of them commented,
I was diagnosed at 22 because of the gender bias, I didn’t magically become autistic at that point - I always was. of course in an ideal world everyone would have an official diagnosis if they want one and fit the criteria, but not everyone has access to diagnosis or medical care. IMO I’d never discourage people accessing communities that will support them, you’re entitled to your opinions but it’s important to know the many barriers to diagnosis and the absence of an official dx doesn’t make one allistic
Others found the comparison between skin cancer and autism misleading:
It's really not the same as a skin cancer issue. Skin cancer needs medical procedures. Being diagnosed autistic doesn't and, even though I did self-diagnose myself, I have spent hours researching symptoms, taking tests online, talking to actual autistic people and realising I am just like them. I've always known something was ''off'' with me. I just never talked about it and I didn't really know what autism was like before being exposed to it, and every single time there were signs I was autistic, I searched for signs I wasn't, and there are very few of them
Some commenters expressed themselves more curtly, attaching pictures that read “Your opinions are shit” or simply saying, “Omg fuck off,” later clarifying,
>casually ignores the discrimination that goes into the diagnostic process, the amount of money it costs, the problems it can cause in one’s life... how about no
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Over a few days, the post gathered more than 400 comments in total (until they had to be locked by the moderators, who were struggling to keep up with the sheer number of commenters), and the overwhelming majority of the group members seemed to agree that a self-diagnosis was not only valid but, in some ways, more advantageous than an official diagnosis. One such comment reads,
Shut the fuck up, OP [original poster]. Not only is a diagnosis hard as FUCK to get, but it ALSO affects your autonomy as you get older. Places won’t rent, won’t hire, your kids can get taken away from you, there’s so much fucking red tape. Fuck a cactus.
Likewise,
In addition to finances being a barrier, sometimes a formal diagnosis can bar a person from certain jobs. So, while knowing about oneself increases understanding and acceptance, getting a formal diagnosis doesn't always open up doors. In fact, it can often close them.
Additionally, in an interview, an informant shared that he did not “dare” get a diagnosis because he was wary of encountering barriers for his transition-related medical care:
I've heard of people being denied transition-related surgeries because they're autistic. Like it's assumed they don't know what they need, or something?
This sentiment is especially compelling in light of an action proposed by the UK Driver and Vehicle Licensing Agency (DVLA) in February of 2019, which required all autistic drivers to declare their condition to the agency regardless of their ability to drive. According to Nick Hodge, professor of inclusive practice at Sheffield Hallam University,
The change required autistic drivers to complete a form and detail levels of alcohol and drug use, name their doctor and specialist consultant, as well as what clinics they attend and when. Drivers also had to agree to these medical professionals being contacted for information – even though their doctor’s specific understanding of what it means to be autistic might be limited.
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While #ActuallyAutistic Twitter was able to convince the DVLA to overturn their decision, the agency’s initial action highlights how autistic people’s “ever-precarious status of the good or near ‘fully’ developed human” (McGuire, 2016, p.90) leaves them vulnerable to policies that violate their human rights.
In general, I found the discussion about the validity of self-diagnoses especially valuable not only because it soothed my anxiety about belonging in the autistic community as a self-diagnosed adult, but also because it endorsed embodied autistic knowledge over biomedical discourses, framing diagnostic practices as interactions between embodied entities. This idea is best articulated in a comment that reads,
There are no better experts on autism than autistic people. Therefore, unless a doctor is autistic, no matter how much "experience" they have, they will never know more about it than we do.
Another informant further deconstructed ‘Western’ medical practices as a place- and time-specific intellectual tradition that explains some things while simultaneously overlooking others:
I'm professionally diagnosed, and I went into the field to work. I just think you're too medically focused to understand the important aspects of these folks' experience that's relevant to the diagnosis. One of the great issues facing mental health as a whole is the disparity between the limitations and eugenicist values of the medical perspective and the denial of crucial aspects of the human experience that are barely touched upon within western epistemology, and therefore our psychology. Professionals are not a monolith of the ability to judge these factors, as there are many aspects of any mental health diagnosis that are affected by a person's disposition, and they can be educated to interact with them to engage with and get better mental health care and support.
Likewise,
I’m aiming to be a clinical psychologist to help people who can’t get diagnosed but definitely need a diagnosis, and I can say firsthand that professionals LITERALLY don’t know what they’re doing and can’t logic through anything related to autism.
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Furthermore, some people emphasised the power inequalities that are inherent to seeking and receiving medical care:
They [psychologists] also talk about us all like children and sometimes like we’re subhuman.
Similarly,
Also: A lot of black children go undiagnosed because of racism in the medical community. So not only are you gate keeping, you’re also being racially insensitive. Enjoy your white privilege, Becky.
A response to the message above reads:
I wouldn’t be surprised if OP knows that and is mad that this group has “icky” minorities in it instead of being a pure and wholesome white, cishet [cisgender and
heterosexual] space.
Also, fuck the poors amirite?
I am reminded here of Melanie Yergeau’s reading of autistic futurity in Authoring Autism (2018). She writes, “[I]f an autistic future is bleak, it is racistly and transmisogynistically represented as bleaker—'contaminated’—when its subjects are persons of color, women or genderqueer, poor, and/or nonspeaking” (p.18). This point is also echoed by Paul Heilker in “Autism, Rhetoric, and Whiteness” (2012), as well as by Nirmala Erevelles in “Crippin’ Jim Crow: Disability, Dis-Location, and the School-to-Prison Pipeline” (2014).
As I was going through the comments, I thought about how my experiences with mental health professionals, which I had previously framed as an unfortunate exception, seemed to mirror other people’s stories. I joined the chorus of collective indignation, saying,
Mental health professionals in my country do not recognize autism in adults and generally have the most backwards and misinformed ideas of what autism is. I guess I should just move to a different country, apply for citizenship, acquire housing, a job and health insurance before I can get an official diagnosis. It will probably take only a few decades.
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In fact, although I found no clinical or ethnographic research about the lives of autistic people in Kazakhstan and other post-Soviet states, my findings suggest that the majority of Russian-speaking adults who identify as autistic are, or have been at some point, self-diagnosed. Additionally, there seemed to be no established clinical standard in relation to treating and diagnosing autistic adults. For example, in one of the groups, someone anonymously posted a quote from a psychiatrist that reads,
Lately there has been a fashion for tolerance… Asperger’s Syndrome is, essentially, sluggish schizophrenia.
In the comments, a few people confirmed that this was not a singular, but a systematic occurrence.
There are plenty of psychiatrists like that.
My mother was told that I had schizophrenia and that I had to be urgently seen by a psychiatrist (it was said by a clinical psychologist in a children’s hospital), be hospitalized and start taking medication, otherwise it would be a nightmare, hallucinations and stuff like that. My mother did not take me to a psychiatrist. I have never had hallucinations, paranoia, delusions or anything like that.
I read the same stories in the groups for parents of autistic children. When an obviously autistic child is diagnosed with schizophrenia.
Another person wrote,
I recall how recently a psychiatrist told me that “only children can have autism” and that it later “develops into schizophrenia.” When it came to Asperger’s syndrome, he said, “working with such people is undesirable.” Cool, cool. Asshole.
In a private conversation, an informant shared that they had even been hospitalized and treated for schizophrenia. They say,
I was committed to the hospital, where they gave me haloperidol, which shouldn’t be prescribed to autists, I started having motor seizures, it was fucked up.
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While there appear to be some psychiatrists who are trained to diagnose autistic adults in countries like Russia, finding such professionals often requires the patient to have some prior knowledge about their condition before seeking help, as well as access to other autistic people and their experiences. However, such an opportunity remains inaccessible to many as the majority of doctors who are trained to diagnose and work with autistic adults tend to have private practices in large urban centers.
In my own experiences with moving through various mental health systems, in Kazakhstan and abroad, not only was I never recognized as autistic, but the treatment that I received was often contingent on ways in which a particular professional imagined my body. For instance, when I entered a psychiatrist’s office in Karaganda as a twenty-year old with complaints of derealization, low moods, sensory sensitivities, difficulty concentrating, and episodes of mutism, I received a diagnosis of neurosis, a prescription for anxiety medication, and a confusing directive to “find a husband” as the doctor – a middle-aged Russian woman – insisted on referring to me as an “Oriental woman” whose main and only concern should be a perspective of life-long singlehood.
A year later, I requested an appointment with a psychologist at the student health clinic during a summer semester at the University of Wisconsin-Madison. My main complaint then was sensory processing difficulties as I struggled to pay attention and take notes in a Psychology-101 lecture room, which I found unbearably noisy and crowded, with fluorescent lights that flickered, emitted a static humming sound and caused me to dissociate. The counsellor suggested that I simply “stopped paying so much attention” to the stimuli that I found painful and distracting and, instead, practice mindfulness and breathing exercises in class.
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Herein I offer my experiences not as a way of casting doubt on the abilities or expertise of mental health professionals but to point out ways in which clinical practice presents itself as an interaction between embodied entities that is explicitly rooted in cultural imagery. The symptoms for which I sought help feature prominently in posters that offer “warning signs” and “red flags” of autism, and yet none of the people who consulted me were able to correctly identify me as autistic, be it because of the sociocultural characteristics that I embodied or their own “untrained gazes.”
Furthermore, as an undergraduate student at the time, I had learned about autism in the classroom, and my knowledge included articles such as Baron-Cohen’s “Does the autistic child have a ‘theory of mind’?” (1985) and research in biological anthropology that centered on finding “the origin” of autism. Nevertheless, these texts talked primarily about the things that autistic people lacked in reference to their nonautistic counterparts, while never explaining what autistic actually were, had or experienced. Hence, these texts implicitly address nonautistic audiences and gaze upon autistic bodies from their own normative embodied positions.
As such, I was never assumed to be the target audience for biomedical knowledge as it put me in the category of the object of knowledge. Claiming the autism label based on these texts would be similar to claiming the label of an “Oriental woman” – both have little meaning apart from rating me as abnormal. Therefore, it was not until online research led me to autistic narratives and peer support groups that I learned how to contextualize and communicate my bodily knowledge in ways that were legible in a specific setting.
Lastly, some of the comments featured in this chapter are emotionally charged, and I intentionally decided against censoring. Behind each comment is a history of dehumanization, of being abandoned in times of need, and the ugly feelings (Ngai, 2005) that characterize many
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of these stories appear to be symptomatic of the biomedical system’s many pathologies rather than the supposed “deficits” of autistic bodies. (I will engage with affect as a political phenomenon in more detail in the final chapter of this paper). In the next section, I will engage with the notion of ‘embodied knowledge(s)’ as an alternative to the standard of biomedical knowledge in narrating autistic bodies.
Embodied autistic fiction
In January of 2019, Krystina Nellis, writer and performer based in London, tweeted the following message:
Just heard about something in which an autistic character appears to be being portrayed by an actual puppet and please excuse me I am going to crawl into a hole and hide until 2020 now (@krystinanellis)
The play to which Nellis refers in her tweet, entitled All in a Row, centers on the experiences of a family of an autistic boy with high needs. In the words of the play’s creator Alex Oates, “The autistic character is a nonverbal 11 year old with challenging behaviour, the play's focused on how his parents cope with him going into a residential school..” (@FunkSmuggler). Oates further defended the controversial casting choice in a tweet that reads,
“So I had the idea of a puppet and raised it with all the parents I knew, they thought it was an exciting idea. Puppetry as I'm sure you know is a highly effective branch of theatre with an amazing history.” (@FunkSmuggler)
However, such an explanation did not appease the autistic community on Twitter, who found the play dehumanizing and harmful, forming a hashtag #PuppetGate. Under that hashtag, autistic people shared how the play’s treatment of its autistic character mirrored their own traumatic experiences of sociopolitical disablement. Additionally, many stressed that casting a puppet to play an autistic child was harmful in ways that were not in any way novel, but in fact consistent with the biomedical therapies such as Lovaas’s Applied Behavior Analysis (‘ABA’):
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WRT #puppetgate I just realized why I had such a visceral reaction to the original puppet design (apart from it being straight out of a horror movie). It's because of something I read a while ago, something Lovaas said in an interview about autistic children and personhood. "You start pretty much from scratch when you work with an autistic child. You have a person in the physical sense — they have hair, a nose and a mouth — but they are not people in the psychological sense. " This attitude is seen over and over again.
Autism Momstm perpetuate the idea that their 'real children' have been somehow 'stolen'
by the wicked fairy that is Autism, and they are left with the empty shell, a challenging child who is not what they think a child should be. This idea that we are somehow soulless, empty non-people is damaging and that's what makes #puppetgate SO hurtful. It's this same false concept wrapped up in a would-be cutesy theatrical dressing. The puppet has no soul, no life - LITERALLY. He alone in the cast of characters is LITERALLY not a human, not a person. (@edgar_a_bitch)
Likewise, in his review of the play, Stephen Unwin – English theater director, writer and father of a disabled child – writes that the main issue with the play is not in its portrayal of the challenges that come with loving and caring for a disabled child, but the play’s treatment of the autistic character, Lawrence, as the enemy. He writes,
And please don’t think that I wanted a play that showed Lawrence’s parents in a state of endless bliss. […] What I wanted to see was more flavour, more contradiction, a greater sense of the self-knowledge that Lawrence’s parents would have acquired, the wisdom, the inner calm. The love, indeed. Instead we saw a husband and wife in terminal breakdown, with their young, non-verbal, vulnerable son being seen as the cause.
In short, #Puppetgate demonstrates how In a Row takes the dominant construction of autism as “some extraneous ‘thing’ that comes ‘with’ some people” (McGuire, 2016, p.7) to the extreme. The play does not seek to address autistic audiences or engage meaningfully with autistic experiences in the world – rather, it literally objectifies the autistic body, turning it into a prop against which the family tragedy unfolds. As such, the play is, in fact, in a row with the cultural project of “the war on autism.”
Christa Mullis, in a piece entitled “Reflection: Autistic-coded characters and fans in fandom” (2018), explores how such cultural imaginations of autism manifest themselves in
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fiction in less overt ways. She argues that fictional characters who embody autistic characteristics are rarely explicitly coded as such because of the broader cultural ideas that position autism as something that comes “with” some people but is never embodied. She says, “Autism is not in the realm of personhood, it is the realm of pathology, and it only follows that people aren’t just walking around, in the real world or fictional ones, being autistic” (p.154).
In response to the lack of autistic characters in popular culture, autistic people share their own reimaginations in the form of fanfiction. Mullis writes, “Autistic people recognize the way these characters silently carry themselves, through a world not built for the way their body experiences it, because they also silently carry themselves through it every day” (p.148). One such example, the character of Abed Nadir from the NBC sitcom Community, is especially interesting not only because it was embraced by many autistic people as someone who was and “moved” like them but, according to Mullis, led the show creator to discover that he was likely autistic himself. She writes,
That sense of responsibility which so many other creators fear, and that he freely took upon himself, led to him discovering just how familiar everything about autism sounded to his own life. […] Autism was no longer too far removed from his world - as it turned out, Abed moved like him too. (p.150)
While Mullis’s piece centers autistic characters on TV, the world of online autistic fanfiction is much more diverse. Autistic writers of fanfiction recognize themselves in songs, cartoons, books, and video games, as well as prominent historical figures. For example, in one of the groups for autistic headcanons, somebody posted the following excerpt from Gabriel García Márquez’s A Hundred Years of Solitude:
Actually, Remedios the Beauty was not a creature of this world. Until she was well along in puberty Santa Sofía de la Piedad had to bathe and dress her, and even when she could take care of herself it was necessary to keep an eye on her so that she would not paint little animals on the walls with a stick daubed in her own excrement. She
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reached twenty without knowing how to read or write, unable to use the silver at the table, wandering naked through the house because her nature rejected all manner of convention. When the young commander of the guard declared his love for her, she rejected him simply because his frivolity startled her. […]
It seemed as if some penetrating lucidity permitted her to see the reality of things beyond any formalism. That at least was the point of view of Colonel Aureliano Buendía, for whom Remedios the Beauty was in no way mental retarded, as was generally believed, but quite the opposite. […] Remedios the Beauty, even from the time when she was in her mother’s womb, was safe from any contagion. (Marquez, 2014)
Another writer recognized a character in a Ukrainian song as autistic. The post reads, The protagonist’s friend in the song "Granada" by Mikhail Svetlov is autistic.
Living in Ukraine and being brought up in Ukrainian culture, he realizes that Spain, especially Granada, is much closer to him. He sympathizes with the peasants of Granada and dreams of fighting for them.
He constantly sings the same song "Granada, Granada, my Granada", which he wrote himself. Even dying, he whispered: "Grana ...". Maybe it was echolalia, maybe a special interest, maybe stimming.
Even according to the words "my friend drove in a saddle" and "my comrade left his saddle for the first time," it can be inferred that the friend was constantly riding a horse. Perhaps it was more comfortable for him that way. Maybe horse-riding was also his special interest.
An entirely different example is offered by a Tumblr user sassysportacus:
Mæja Litla Jarðarber, aka everyone’s favourite Icelandic strawberry, is on the autistic spectrum! Specifically, I believe she has ASD (Autism Spectrum Disorder, previously known as Aspergers) and in this post I’m going to explain why.
Reason 1: she seems to be particularly sensitive to loud noise.
[screenshots that show the character covering her ears in response to shouting] Please, SOMEONE get her a pair of noise-cancelling headphones!
Now, reason 2: STIMMING!!!!
If you look closely, you will notice that she actually has the ribbon on her wrist throughout the 2005 show. My headcanon is that she keeps it there for stimming purposes. Also, as aleinn pointed out to me, at least in the 2005 stage show and the 2012 film/series, Mæja has her hair in plaits, so it’s possible that she also uses her hair to stim.
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Even if I don’t outwardly make any facial expressions when I’m forced to hug, hold hands, etc. I know I can certainly relate to Mæja’s facial expression here. Now she doesn’t seem completely averse to touch, at least in 2012, but most of her (positive) physical contact is with Gedda so it’s very possible she’s an exception to the NO-TOUCHY!!!! rule, because exceptions are possible.
This is just a minor thing, but here is Mæja dancing with Eva Appelsína at the end of the show. Notice how they’re not making contact? As someone who often has to find alternative ways of showing affection to my friends (eg handshakes and high fives) I interpret this as Eva respecting Mæja’s boundaries and this being their equivalent of a hug.
Reason 4: She has trouble making friends.
Now, the official reason given for her lack of friends (before she meets Gedda, of course) is that she’s the smallest fruit in the basket so they all tease her for it. However, as someone who went through a phase of having no friends, to having One Friend At A Time, to eventually having groups of friends, I feel like Mæja and I have been on the same journey and therefore I’m including it here. Like Mæja was singled out for being short, and therefore Different™, many of us are singled out as Weird Kids™ and therefore we are targets. I never experienced bullying to the extent that Mæja did, but I feel like many of us on the autistic spectrum can probably relate to her! She seems quite anxious as well so that’s a Mood™
Not only are these characters presented as complex and multifaceted, but their stories are dynamic and embedded in their particular environments. For instance, in the text that talks about the character of Mæja, the writer does not stop at noticing the sensory sensitivities of the character but also adds: “Someone, get her a pair of noise-cancelling headphones!” Likewise, Mæja is depicted as someone who is possibly aversive to touch but also has her own way of expressing affection. And while the writers also acknowledge potential challenges that are part of autistic experiences – friendlessness, bullying, or being unable to relate to the culture one is born into – they are not seen as fated or pathological.
Hence, in these texts, the autistic body is portrayed as a specific way of being and interacting with one’s environment that is inherently ordered: behaviors, however unusual at first sight, have origins and explanations, which creates potential for transformation. Herein, I argue, lies the fundamental difference between the biomedical gaze present in All in a Row and the ways in which autistic people imagine themselves in fictional characters: whilst the first
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text sees autism as an unintelligible and unchangeable entity that is frozen in time and space (not much different from death), autistic headcanons see autistic characters as having journeys, phases, novel solutions and creative abilities.
Furthermore, in reaching across time and space, autistic fanfiction creates the genealogy of autism that exists independently of the gaze of the nonautistic observer. Such a genealogy is in line with the ethos of neurodiversity, suggesting that autistic neurotypes are, and always have been, part of the natural human diversity, whether or not autistic ways of being were explicitly labelled as such. In such a way, the world of autistic fanfiction – and embodied autistic knowledge more broadly – rejects the authority of the biomedical gaze, reframing current rhetorics of “an autism epidemic” as a historically contingent moment rather than the absolute truth.
Knowledges that are not yet here
It is from this assumption – that autistic people have existed long before being discovered by the biomedical gaze – that I begin my fieldwork. I have argued previously that the biomedical knowledge operates from the perspective of a nonautistic observer, by which I do not necessarily mean that the narratives produced by nonautistic people in relation to autism are always and inevitably incorrect. It is, however, the kind of knowledge that is perceived and interpreted through the bodily characteristics of a nonautistic person, who is neither neutral nor omniscient. Autism consultant Cos Michael expresses this idea in a tweet that reads,
Sometimes it really feels as though #autistic people are in a fishbowl, whilst anthropologists look in, wondering how fishbowl society works (@autismage)
I reply to this tweet, saying,
As an autistic anthropologist… I felt this. Neurotypical vision is not some magical instrument that is able to understand lived experiences of autistic people, and science must contend with this very real limitation + listen instead of just looking (@autisticcyborg)
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As such, my objective in this section is not so much to ‘resist’ nonautistic conceptualizations of autism, as that in itself inadvertently reifies the binaries that are imposed on autistic people – but to reject its universality. Therefore, I practice observation that is guided by confusion1 in order to capture what is yet unknown – embodied knowledges that arise in interactions between my self, digital technology and autistic people who use these technologies in order to participate in digital activism, advocacy and peer support.
By confusion I mean the kind of orientation that Viktor Shklovsky terms “ostranenie” or “estrangement.” He argues that “the purpose of art” is to “lead us to a knowledge of a thing through the organ of sight instead of recognition” (1925, p.6). Whilst Shkolvsky understands ostranenie as a primarily artistic device, I suggest adopting his technique of estrangement as a tool in ethnographic practice, in which both the ethnographer and the ethnographies are ‘estranged.’
Such an orientation is in line with Melanie Yergeau’s idea that autism constitutes a kind of rhetorical queerness, which she understands broadly as something that is “not yet here” (2018, p.18). In the introduction to her book, Authoring Autism: On Rhetorics and Neurological Queerness, she writes,
I am invoking ethics, philosophy, cognition, and politics. I am invoking not only the ways in which autism has been figured as lacking in these domains, but also the ways in which autistic people seek to queer those domains, to fuck up that which is already fucked up. (2018, p.6)
Alternatively, as Moira Gatens explains in her book entitled Imaginary Bodies: Ethics, Power and Corporeality (2003), “We do not know the limits of this body or the powers that it is
1 I was inspired by Jessica Dore’s July 2019 Tarot Offering, specifically her powerful reading of the value of confusion in the production of knowledge (www.jessicadore.com/july-2019-tarot-offering/)
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capable of attaining. These limits and capacities can only be revealed by the ongoing interactions of the body and its environment” (p.57).
In fact, as I review my field notes, I struggle to find an overarching theme or a neat “autism theory” that would fit all my findings. My fieldwork encompassed a variety of media and communicative arenas, and over the course of the last six months, I have met people from different parts of the world who had different bodies, stories and ideas about their own selves. It seems to me that what makes these individuals into a community is not a claim of essentialism but exactly the opposite: diverse perspectives serve to destabilize the very idea of autism as an easily detectible and narratable thing. As one tweet puts it,
Imagine if ASD was described like types of cupcake. You have some with icing, some with sprinkles, some chocolate, some vanilla but they’re all cupcakes.
‘But how cupcake is it?’ ‘What?’
‘Like is it a little bit cupcake or severely cupcake?’ ‘It… It doesn’t work like that?’ (@lynchauthor)
Such an orientation is readable across different segments of #ActuallyAutistic Internet: for instance, it is common practice for closed Facebook groups to ask its prospective members about their views on intersecting forms of oppression, such as racism and transphobia, and strictly enforce the use of trigger and content warnings in order to accommodate various sensory and affective needs. The groups’ admins often say that they seek to include and educate rather than rate and exclude, and that everyone is welcome to share their stories as long as they do not discriminate against anybody else.
Likewise, autistic creator Agony Autie (Sara Jane Harvey) dedicates much of her videos to the idea of diversity, seeing it as a strength, and urging her viewers to be their authentic selves and ‘embrace the stim.’ In one of her live streams on Instagram, she expressed gratitude
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to the autistic community for empowering her to speak on its behalf at conferences and other events (a task that she tackles brilliantly), but also encouraged more people to share their voices, stressing that her perspective “as a white woman” was just one of the many. In another video, she joins an impromptu street performance in San Francisco: she has blue hair and is wearing a turquoise sweater, and dances effortlessly to the beat of the music while holding a cane. Later in the video, she is seen sitting in a mobility scooter as she speaks with the performers and explains to them what it means to be autistic. She says,
You know the diversity in age, class, race, [but] neurodiversity, we’ve not been taught. That’s brain diversity. […] We are creative. And we’ve all been pathologized? Like we’re the broken ones? Fuck that shit. Look at what we’re doing. They want us in a 9 to 5 mold. It’s suffocating – so we go off and do our own thing.
She continues,
I’m privileged as a white autistic woman, even with my disability, I have privilege. There’s members of my community, and they are being killed for being autistic.
Likewise, in one of her live streams, she stresses that people who live on the streets, people who are homeless, are “us” – many of them are neurodivergent and belong in our community. It is this underlying idea – that progress means little unless “each one of us” is accepted – that facilitates constant innovation, the kind of “body politic” that explicitly rejects uniformity and strict hierarchies.
In turn, my old self-story that used to center on the question of, “What is wrong with me?” slowly dissolved as I learned to see myself in this new light. Before framing my way of being as autistic, I had learned to disassociate myself from my body, which I regarded as unintelligible and untrustworthy because its signals were never aligned with any of the possibilities that existed in sociocultural imaginations in which my body was embedded.
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In such imaginations, for example, eye contact was not understood as optional, and while I always had a vague awareness that it was uncomfortable, unnatural and sometimes downright painful, I learned to forget that bodily fact in order to mold myself into the only “genre of the human” (McKittrick, 2015) that I knew. ‘Louder’ manifestations of my neurology, such as meltdowns, were not as easy to suppress or forget, and I reached for the epithets that other people used to narrate my character: weird, spoiled, or even insane. All in all, it was a constant exercise in failing that inevitably produced the kind of subjectivity that adopted inadequacy as its central cosmology: I thought my body was simply irrational, a kind of glitch in the system of human genetics, and that my life was to unfold accordingly: a bleak and joyless obligation.
While such a self-perception is rooted in particular social relations and discursive possibilities, it would be wrong to suggest that I could narrate my way out of their influence with conscious volition alone. As Anne McGuire puts it,
The emphasis on the self-making individual should not be confused with a radical free will. Any notion of radical freedom disappears with the recognition that there are limited subject positions available for habitation in a given discursive regime. Coming to inhabit a set subject position is necessary insofar as it, in Butler’s words, ‘qualifies a body for life within the domain of cultural intelligibility’ (Butler, 1993, p. 16). (p.73)
Therefore, it is through interactions with other autistic people on the Internet that I found the basis for what Moira Gatens calls “a working framework from which to think and live other ways of being, of being political” (p.50).
For instance, one of the more subjectively meaningful discoveries was learning about my sensory sensitivities and preferences through other people’ stories. One such story, shared in a closed Facebook group, articulated a particular tactile response that I found familiar but never before thought of putting it into words. The post read,
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So there's this one song I've been listening to a lot recently and every single time it gets to the end i get EXTREMELY emotional. It was the weirdest thing because I couldn't describe which emotion I was feeling, just that it was BIG and made me cry a lot. I've never cried at a song before.
It finally hit me the other day that i'm crying because the crescendo overloads my senses. I'm not sad, I'm autistic and that feeling is panic. […]
It's not like... bad sensory overload. I can't even describe it really. It's similar to what I've heard people describe ASMR experiences as, but ASMR videos make me want to scream.
In the comments, we discussed these bodily sensations further:
I also get super overwhelmed when other people have specific intense emotions, especially embarrassment. Sometimes I have to leave when someone else embarrasses themselves because it makes me feel SO weird,
and I responded:
YES!! I cannot tolerate second-hand embarrassment either. Same goes for someone else experiencing humiliation, it just feels so bad in my body.
With this newfound sense of comfort and validation in my sensitivity, I shared my findings in a Russian-language community in response to an anonymous question about synesthesia. Through these interactions, I made friends with Kristina, with whom we shared a rare type of synesthesia that causes us to “mirror” bodily sensations that we observe in other people (a feeling that is articulated in the comments above). What started as a series of texts about the ways we perceived different sensory stimuli and numerous exchanges of “yesyesyes!” and “omg I thought I was the only one?!” led to a newfound sense of intimacy and trust that eventually grew into a friendship. When a few weeks after our first online conversations, Kristina and I met at the Arbat in Moscow, the conversation flowed so effortlessly, and I felt so overwhelmingly normal, that the world itself looked new.
Conclusively, through a conscious refusal to narrate autistic bodies in prescriptive and primordial terms, autistic narratives come up with novel and multiple meanings, stories and
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conditions of possibility. As Ben Belek explains in his piece entitled “Articulating sensory sensitivity: from bodies with autism to autistic bodies” (2018), “When material artifacts are creatively joined together with language to create articulations of previously undistinguishable sensations, the world which they inhabit itself transforms, gradually becoming more differentiated and consequently richer” (p.11).
As a result, I inevitably abandon the idea of my body as a given and, instead, consider it with vital curiosity. This new, friendlier gaze gives me a sense of creative control over my life: like a writer of autistic fanfiction, I look back at my younger self, and instead of seeing pathology and doom, I think: “Please, SOMEONE get her a pair of noise-cancelling headphones!”
27 II. Time
In June of 2019, Mel Baggs, multiply disabled writer and artist, published a blog post titled “I need time. This is about accessibility.” In that post, Baggs contends that for many cognitively disabled people, time is the matter of equal access and human rights, but that it often gets overlooked or provided reluctantly as an act of benevolent assistance. Baggs writes,
You need to give me time to think. Time to understand. Time to respond. Time to have a back and forth conversation. Time to put things together. TIME.
And the time needs to be without pressure. Without judging me for needing more time. Without making me explain why I need time. Without treating me as
demanding. Without acting like your time is so utterly valuable that to give me even five seconds is a giant favor. Without acting like cognitive accessibility is a favor at all. Without all kinds of bizarre conditions in order to qualify as worthy of your time. Without treating me like I’m asking for special treatment. Without using the fact you gave me extra time to demand other things of me later.
[…]
Time is certainly important to those of us who need more of it. And it’s an accessibility issue just as important as wheelchair ramps, curb cuts, or Braille. It seems like such a little thing but nobody wants to give it.
Baggs’s argument elaborates on how shared needs and ‘ways of thinking’ become foundation for “cognitive kinship” for people who may be divided along the lines of medical labels. Sie2
says, “It’s the way thinking works and the obstacles we face in the outside world that
determine our similarities and differences, far more than what diagnosis someone decided to give us.”
Works in disability studies articulate the concept of “crip time” to designate experiences of “disability in time” (Kafer, 2013, p.25). In “Stories of Methodology: Interviewing Sideways, Crooked and Crip,” for instance, Price and Kerschbaum offer the following definition: “crip time unpredictable; it speeds up and slows down, jumps, bends
2 Although I was not able to find information about Baggs’s pronouns on the website, a few sources cite Baggs’s preference for gender-neutral pronouns “sie” and “hir.”
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and twists” (2016, p.33). Similarly, Ellen Samuels, in a work entitled “Six Ways of Looking at Crip Time” (2017), writes,
When disabled folks talk about crip time, sometimes we just mean that we're late all the time—maybe because we need more sleep than nondisabled people, maybe because the accessible gate in the train station was locked. But other times, when we talk about crip time, we mean something more beautiful and forgiving. We mean, as my friend Margaret Price explains, we live our lives with a ‘flexible approach to normative time frames’ like work schedules, deadlines, or even just waking and sleeping. (n.p.)
In Feminist, Queer, Crip (2013), Alison Kafer looks at crip time as “queer time,” both on the intimate level of interpersonal relationships, as well as more globally – in terms of crip development and futures. Adopting what she calls a political/relational model of disability, Kafer explores how dominant temporal regimes, such as expectations of “normal human development” and the promise of a cure as the only acceptable imagination of disabled futures, create “the political experience of disablement” (p.9). As such, she positions disability “as a set of practices and associations that can be critiqued, contested, and transformed” (p.9).
For my own inquiry, time features both as a possibility for connection and belonging, as well as a source of significant tension between normative expectations and embodied limitations. Thus, in this chapter, I dwell on the notion of crip time on three levels of analysis: firstly, I look at time in my digital ethnographic practice through the lens of
interdependent crip methodology. Secondly, I consider how autistic development challenges dominant understandings of “normalcy” and, ultimately, compounds implicit assumptions about being and becoming human. Lastly, I look at time in autistic narratives on the level of historicity – I explore what it means to be autistic in the postcolonial moment in
contemporary Central Asia and how digital autistic communities work to imagine autistic futures.
29 Crip ethnography
In the section on time in their “Stories of Methodology: Interviewing Sideways, Crooked and Crip” (2016), Price and Kerschbaum challenge conventional assumptions in qualitative research that position the researcher as what they call “super-capable,” instead highlighting the importance of interdependence. In recalling their own experiences with qualitative interviews, they powerfully argue for a methodology which positions “all interlocutors as vulnerable, disrupting the assumption that the interviewer must be […] ‘firing on all cylinders’” (p.35). Specifically, Price and Kerschbaum discuss the crip significance of
breaks, both literally (such as taking time for reflection and retreat during interviews), as well as “breaking the conventional interview frame” more broadly (p.33). They say,
Being able to participate in a conversation depends not only on knowing how to participate but also precisely when to make an utterance, move one’s body, make an interruption. But disability almost always changes the rules, and not always in ways that make people comfortable. (p.34)
Before I embarked on this project, I had read Price and Kerschbaum’s piece and even referenced it in the proposal’s section on methodology. In my arrogance, or perhaps what people in the community term internalized ableism, I paid little attention to their discussion of breaks, choosing instead to align myself with a time-related framework that existed in Internet research, which tended to prioritize immediacy over interdependence. Specifically, in such a framework, immediacy is the line that separates ‘archiving’ from digital ethnography. As Annette Markham explains in her piece on digital ethnography, “understanding culture has never been a matter of collecting everything and then analyzing it later” (2013, p.440). Therefore, the goal of synchronizing my practice with the rhythm of my interlocutors for the research to have any ethnographic value overshadowed my own time-related needs. And it is from this assumption of my “unlimited access” (Price and Kerschbaum, 2016, p.33) that I drew a research plan that seemed to conveniently forget the awkward fact of my corporeality.
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My proposed timeline seemed unambiguous: I would spend the required ten weeks collecting data across multiple social media sites, then I would start working on writing to eventually produce a polished work by the designated deadline. Unsurprisingly, the reality of my practice turned into something completely different: where the plan so ambitiously drew straightforward, linear progressions, my actual research practice was unpredictable,
sometimes running in circles, other time taking leaps or ceasing completely. As a result, I spent a little over five months in the field and had to significantly scale down the grandiose research scope of which I conceived in my original plan.
In general, not only did I find it difficult to move at the same speed as multiple feeds, conversations and timelines that I followed, it was also increasingly taxing to witness what seemed like a cacophony of tragedies, both big and small: autistic children abused by their caregivers, people being fired from their jobs, news of research that endorsed the efforts of “finding the cure” for autism. With few distractions in my life outside the field and few opportunities for retreat, I became fully absorbed by my online presence, and as I turned off the phone by the end of the day, there was often a sense of sensory and cognitive overload. Instead of taking these sensations as a clue to slow down and take a step back, however, I insisted on doing more out of fear of missing something important – the conviction that I “had to be there” left me in a perpetual state of alertness and unrest.
Four weeks into my fieldwork, I fell into a depressive episode and had to limit the time I spent online. As my body started growing slow and listless, much of my
communication and observations became delayed, which in turn came with a profound sense of shame at failing to be a real researcher. In “Stories of Methodology…”, Margaret Price describes a similar conflict in her practice when she writes, “I realize now that I felt as though I were struggling against all my qualitative-interview training which assumed that I, as the researcher, would have nearly unlimited access available to me, and that the participant must
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never be disturbed in any way to meet the researcher’s needs—in short, that the researcher(s) would never be disabled” (p.33). Similarly, the difficulties I was experiencing did not stem from any kind of external pressure, but more so from an internalized understanding of what it meant to be an ethnographer, a scholar, or any kind of professional in general – in my
conceptualization of these roles, there was no space for disability.
When I look back at my fieldwork now, I recognize that the modes of observation that I was trying to achieve did not agree with how I or other autistic people usually moved in the world, either online or offline. In my interactions with the autistic community, as well as other online disability communities, I came to find that community members were
refreshingly aware and accepting of temporal limitations and disparate needs that may exist for disabled people. For example, it is not uncommon for somebody to drop out in the middle of a conversation because they are “out of spoons”3 – in fact, a few of my informants
cancelled interviews or took breaks from social media during my fieldwork. And while I could not point to a single temporality that would serve as an over-arching framework for all autistic people, below I will reference some of the most commonly discussed time-related concepts articulated in the autistic community.
Perhaps one of the most popular temporal themes in autistic narratives is executive dysfunction. While it is not exclusive to autistic people – executive dysfunction is part of the diagnostic profiles of various disabilities and neurodivergencies, such as ADHD, depression and brain damage– the number of times I saw it referenced during my time in the field was exceeded only by discussions of sensory profiles. In a much-liked and widely circulated
3 Spoon theory, originally created by Christine Miserandino, refers to the limited amount of mental and physical energy that a disabled or chronically ill person is able to expend throughout their day
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Tumblr post, user hawkeyedflame defines executive dysfunction in autistic and other neurodivergent people as a difficulty or inability to initiate tasks. They write,
It feels, for me at least, like I’m constantly waiting for something and I can’t start X because I’m waiting. I never know what exactly I’m waiting for, but that doesn’t stop me from wasting hours and days not doing the things I need to do, even if I have a desire to do them.
Likewise, another popular Tumblr post, which travelled through my Facebook feed multiple times, reads,
If you’re one of those people who thinks executive dysfunction only happens for things we don’t like (school, cleaning,) then please consider the fact that I’ve been meaning to plug my phone in for 20 minutes and I’m now at 2% and still putting it off to write this post (@t-i-a-r-n-a-c-a-p-a-i-l-l)
Interestingly, while I did not explicitly address this issue in interviews and private
conversations, executive dysfunction was consistently emerging as an important theme for many of my informants. Over a number of email exchanges with M., who is a high-achieving professional in her field, she reveals that her experiences with executive dysfunction present a narrative conflict in her social role as a “successful Autistic.” She writes,
It’s also difficult to present a whole picture of my experience because I’m seen as the resident language savant (though I’m not entirely comfortable with viewing myself as a true savant) and people see me present lectures and seminars which I can do quite well, but they don’t see the other side of me that can’t read a bus timetable or find what I need in the supermarket. People also don’t realise that I often don’t even know what day it is. I have everything I need to do written down in my calendar but I
usually don’t know if it’s Tuesday or Sunday. All I know is that it’s ‘today’ and the list of things to do ‘today’. It’s hard to get people to understand that executive function stuff because there is such a cognitive dissonance around my abilities and challenges.
Likewise, Star4 – who I met after he left kind and encouraging comments to one of the
Instagram posts about my experiences with inertia – shares how learning about executive dysfunction helped him re-cast his relationship with time and with his own body. He writes,
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Learning that executive dysfunction has a name and other people experience it totally changed my life, for example. I set up ways to work with it instead of just trying to use brute force to get stuff done. I have calendars and alarms and lists and I schedule things instead of just assuming I should be able to remember or get things done. I even have alarms to remind myself to eat and sleep, which has let me get on a regular schedule which is AMAZING.
Maxfield Sparrow, author of the popular blog entitled Unstrange Mind, draws parallels between various manifestations of autistic neurotypes, such as special interests5 and
echolalia6, and autistic inertia (which he also calls “task paralysis”) by suggesting that all categories share a common temporality of involuntary fixation or “stuckness.” He writes,
[…] inertia in autistics is not dissimilar to Newton’s inertia, in that not only do we have difficulty starting things if we’re stopped but we also have difficulty in stopping things if we’re started. As I told my boyfriend yesterday, when I start researching for a paper, I have a hard time stopping the research and starting the writing. So I will end up with enough research material for seven papers before I ever manage to make myself stop researching and start organizing my material and writing it out. It does mean that my papers tend to be really good since I know far more than I end up putting in writing. But it also means that it doesn’t matter how early I manage to start working on a paper, I will always be scrambling to finish it at the last minute (2016, n.p.)
Similarly, Facebook page Girls Autistic Journey writes, Moving forward, why it takes time.
When I watch a film or something happens in my life with other people. It takes me time to process this information, I often get parts of what happen or snippets of the film playing in my mind. I believe this is how autistic people (might not be everyone) process information, this takes time and some things play over and over for longer than others.
So when people say autistic people can’t move on, this is not true, we do move on but in our autistic way, not in a non-autistic way.
Please understand and respect the way autistic people move forward.
5 Cynthia Kim, author of the popular blog Musings of an Aspie, defines a special interest as “an intense interest in a broad subject or a narrowly focused interest.”
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Like many autistic people, I experience difficulties around executive function, autistic inertia, sensory overload, and burnout, all of which become less manageable during bouts of
depression, grief or major life change. I found that common understandings of these experiences, and a willingness to discuss them honestly, did not alienate me from my interlocutors but, in fact, created some of the most profound connections and vulnerable conversations.
Furthermore, acknowledging how taxing it was to keep up at times, I began to be more cognizant of the value of repetition. In April, which celebrates Autism Acceptance month, I started a public page on VK in which I shared some of the findings from my
fieldwork and translated them into Russian. While it was an archive of sorts – I was, after all, collecting and storing material – it also provided ground for new conversations and
discoveries. In one of the posts, I translated a few tweets from hashtag campaign
#WhyDisabledPeopleDropOut and included my own experiences. Even though I published the post a few days after the hashtag was no longer trending on Twitter, I found that these tweets communicated something so comforting and compelling that it was, in a sense, timeless.
What I did, in the end, was what Kafer calls “bend the clock” (2013, p.27) to meet my body: during weeks of depression, I slowed down to observe and collect data, and when change in seasons brought with it a shift in mood and energy levels, I started making more posts, carrying out interviews, sharing pictures and observations. I was learning to accept that if I were to miss something important online, I could go back in time to read the archive or ask group members to fill me in. After all, my being in the world does include missing out on opportunities and events because of exhaustion and overload, sleeping too much or not at all, asking for deadline extensions, freezing, being stuck, growing restless or hiding in what YouTube creator Autistic Werewolf calls “an autistic lair” for weeks and months. Everything
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that I know stems from this way of living, and while the things that I notice could be different, who is to say if they are any less valuable?
Conclusively, I found that the distinction between archiving and ethnography was neither unambiguous nor particularly useful. Specifically, when a community seeks to accommodate people who move at disparate speeds – people who may need more time to process emotions, people who experience fatigue, or people who could have a lower need for socialization in general – studying such a community would inevitably require different tools, lens and modes of engagement. This could mean including materials and voices that were created or had spoken prior to the researcher’s entrance to the field, repeating, translating, asking questions, being stuck – in short, crip time can be central both to practicing and understanding cultures. To echo Baggs’s argument, “This is about accessibility.”
Autistic development
In a video titled “I’m Autistic Yay!!! (Learning To Talk At 21)”, Rian Phin speaks about growing up autistic and how, as the title suggests, they became comfortable with socializing at the age of 21. Even though Rian does not explicitly reference societal expectations of development, the way in which they frame their story is through juxtaposition with what they should have known at a certain age and what their life was like in reality. For instance, at the very beginning of the video they describe social skills as something that they “should” but may not always have:
I know I’m not responding to this “appropriately” [air quotes], or I don’t know how to respond to this because I am autistic, and then just being like, “And that’s tea!” […] I know that I should know what to do but I don’t, and then sitting there as a full-grown adult, like, “I don’t know what to do right now, or say, or how to get through this.”
