Abstract

Many autistic people consider repetitive and sensory practices such as stimming central to their identity and culture. In this paper, I argue that stimming is an improvisatory practice because it constitutes an articulation of autistic aesthetics and sensory preferences, is a crucial component of autistic culture, and consists of moment-by-moment negotiations with environmental and sensory barriers. Autistic people often stim with the help of technologies such as music and stim toys or tools to mediate between inner worlds and outer environments that may over/underwhelm us. I argue that during the COVID-19 pandemic, where the objects we touch (and our bodies) have become potential locations for transmission of the virus, our relationship with stimming (and our stim tools) has changed. This article connects critical improvisation studies, discourses on autistic stimming, and affordance theory to present a framework for understanding autistic stimming during the COVID-19 era: as improvisatory responses to the opportunities and barriers presented by the pandemic. I argue that stimming during the COVID-19 era is a continuously mediated response between our body-minds and the affordances of our environment, and I maintain that this process is a lived improvisation.


Introduction

Stimming is an embodied, repetitive, and sensory practice with which many autistic and other neurodivergent people engage. Medical culture constrains stimming through strict clinical designations and pathologizing definitions, referring to it as stereotypies or "self-stimulatory behaviours." Autistic people, however, often define stimming more broadly as repetitive sensory practices used to regulate emotional states, to cope with external sensory stimuli, or for purposes of self-expression. The word stimming is frequently used by the autistic community and is reclaimed from the medical term "self-stimulatory behaviours." Similar practices exist among other neurotypes, including people with Attention Deficit Hyperactivity Disorder (ADHD) or Fetal Alcohol Spectrum Disorder (FASD). However, in many cases, these repetitive practices are referred to as fidgeting. It is also important to note that neurotypical people sometimes stim as well—many will chew on their pens, or shake their legs. These behaviours offer examples of stimming but are free from the pathologizing gaze of the medical establishment. In this paper I argue that stimming as an improvisatory practice drives embodied cultural expressions highlighting autistic aesthetics and sensory preferences.

In medical and popular culture, autism and autistic people are often associated with repetitive behaviours, rigidity, and routine, and notions of autistic repetition and restriction are central to the diagnostic criteria. To be diagnosed by a clinician in Canada, an individual must exhibit at least two out of four traits exhibiting "restricted, repetitive patterns of behaviour, interests, or activities," including traits such as "insistence on sameness," sensory sensitivities, or "stereotyped or repetitive motor movements, use of objects, or speech." 1 Within this pathology paradigm and deficit model, autism and its associated traits are only determinable by the clinician who makes the diagnosis. As Jessica Lester and Trena Paulus assert: "historically, disabilities have been constructed as biological truths, with the medicalization of bodies resulting in problems… that only legitimated agents (e.g. health professionals) are capable of discovering, naming, and treating." 2 Therefore, stimming within this model is only discoverable, nameable, and definable by clinicians who consider stimming to be symptomatic of a disorder that requires treatment, cessation, or cure. Within this model, non-clinical conceptualizations of stimming, including those constructed by autistic people, are considered invalid.

Given the power dynamics at work in clinical diagnosis, that is, the pathology paradigm, the idea that autistic people have creative abilities remains disputed. Neurologist Oliver Sacks once questioned the artistic credibility of Stephen Wiltshire and Jessica Park, arguing that their works cannot be considered "truly creative" because their artistic and creative practices are too "imitative to be taken seriously as creative art." 3 Sacks and other public intellectual voices employ simplistic and stereotypical constructions of autistic people as non-agentic and one-dimensional cognitive and creative thinkers. While autistic people like myself may exhibit routine-oriented or repetitive behaviours, constructions of autistic creativity fail when ownership is not attributed to autistic people, but to non-autistic or medical gatekeepers. In fact, we are true agents of creativity and our cognitive capacities lead to many spontaneous acts of material and immaterial production. Our stimming, by definition, is repetitive but repetition is not (as is commonly assumed) antithetical to improvisation. Spontaneous interactions, I argue, are at the root of stimming and the repetitiveness (or "restrictiveness") of stimming generates similarities employed in improvised practices such as the rhythmic elements in music and dance.

In this paper, I counter the medicalized frameworks discussed above and examine autistic stimming as an improvisatory practice that is embodied, relational, and a crucial component of autistic culture. I examine how stimming is improvisational by applying critical improvisation theory to my own experience with stimming and to experiences of stimming as described by other autistic people. My argument engages the topic of stimming, critiques and opposes pathology paradigms, and adds to current autistic scholarship that relates to embodiment, aesthetics, and creative expression. To these ends, this paper consists of two parts. In the first part, I describe how stimming is improvisational by applying theories of improvisation to autistic discourses. In the second part, I discuss how autistic stimming has been re-negotiated as a result of the barriers presented by the COVID-19 pandemic.

Part I: Stimming and Improvisation

In the most simplistic of terms, improvisation is making something up on the spot or doing something without prior planning. Improvisation is often associated with improv comedy, improvisation in jazz, or other relationships of improvisation to artistic practice. For many scholars, however, improvisation exists both in art and in social practice (i.e. other aspects of daily life). Scholars Daniel Fischlin and Ajay Heble point to improvisation as a tool for social change. Other scholars, like Gillian Siddal and Ellen Waterman, consider improvisation as a negotiation between our body-minds and environments. Drawing on the work of George Lewis, they remark:

the practice of improvisation in everyday life is ubiquitous. Moment to moment we are faced with choices. Events occur and we must respond to them: from operating a vehicle, to answering a student's question, to responding to a stranger's anger erupting in our vicinity. In our moment-to-moment existence we have few formal and explicit rules to follow, rather we acquire a 'feel for the game'. 4

This scholarship moves the context and meanings of stimming from simplistic pathologizing contexts to a larger, ideological framework where improvisation reveals linkages between creativity and everyday life.

For many, improvisation generates a cultural location extending the boundaries of cultural practice: it is not only an artistic medium but a way of living and relating to the world. Stephen Nachmanovitch's landmark book Free Play: Improvisation in Life and Art recognizes how improvisation "extended the scope and relevance of music making until the artificial boundary between art and life disintegrated." 5 I locate stimming in this disintegrated cultural space where it can be many things: an artistic expression, an expression of emotion, a tool for social change, and a self-regulatory mechanism for over- or underwhelming sensory experiences. Following Nachmanovitch, improvisation is about "spontaneous expression," and more of a "psychological story rather than a story about the technique of one art form or another." 6 Stimming is the language that binds autistic culture together telling an elaborate story of autistic assimilation, trauma, shame, ableism, interpersonal and state-sanctioned violence, as well as autistic history, joy, and pride. Our stories are told not only through our words but through our body-minds in moment-by-moment spontaneous interactions with ourselves, our environment, our communities, and our cultures. Stimming in both life and art is a collectively improvised "psychological story."

As discussed by many improvisation scholars, the ubiquity of improvisation often obfuscates what is and what is not improvisation—leaving the field open to critique. For instance, if our everyday lives consist of constant, unplanned improvisations such as making coffee or talking to someone on the phone, then how can a specific argument be constructed from within a topic that is so overwhelmingly broad? In other words, if everything can be considered improvisation, then why is stimming, in particular, improvisatory? As discussed in the introduction, it is essential to discuss stimming in relation to improvisation because it expands our repertoire of understanding about a topic that is so commonly associated with improvisation's supposed opposites: repetition and routine. Improvisation theory offers an oppositional epistemology to the medicalization of autism and its associated vocabulary and discourses are valuable in expanding anti-pathological understandings of stimming.

Furthermore, stimming draws from cultural texts, social conventions, and sensory and aesthetic preferences similar to many artistic practices. Stimming is often discussed by both autistics and non-autistics through the vocabulary of music and sound. For example, state compliance and obedience are narrated in special education and clinical discourses through the use of sound metaphors. Industrial education systems demand silence from deviant bodies, and school-aged autistic children are silenced through the practical usage of the special education adage "quiet hands." On the other hand, autistic activists including Julia Bascom use the phrase "loud hands" as a rallying cry for stim-acceptance. In this context, stimming (both conceptually and sometimes literally) has volume and is loud. A study conducted by Steven Kapp and associated researchers surveyed thirty-two autistic adults about their stimming practices. The study notes one of the common themes reported by autistic adults revealed that "stimming provides a soothing rhythm that helps them cope"(emphasis added). 7 The study's participants articulated several valuable discoveries; for example, the rhythmic aspect of stimming is precisely what helps concentration: "It helps you talk to yourself at a rhythmic pace, so when I'm doing this I can sort of think in the rhythm that I'm moving my hand." 8 Another participant observed stimming "metronomes everything in your body to sort of go at that speed. So it just sort of helped quell everything, because you're at the same rhythm with everything." 9 These participants highlight the value of stimming as having the potential to generate a sense of rhythmic order, connecting the mind, body, and external environment.

As an autistic person, I stim to mitigate and mediate overwhelming "sensory landscapes." 10 I consider this practice improvisatory because it consists of constant and moment-by-moment negotiations with my environment and surroundings. Many autistic people have differing sensory processing mechanisms, meaning that our sense preceptors are often either hyper or hypo sensitive. For example, I am hypersensitive to sound and certain sounds are unavoidable and overstimulating. Stimming is my response to overwhelming soundscapes that trigger pain, and is my way of regaining control and regulating my sensory system. In Negotiated Moments: Improvisation, Sound, and Subjectivity, Siddall and Waterman articulate that improvisation is an embodied practice that exists relationally and responds to environments from within cultural contexts. Stimming exists in how our bodies relate to the external world through momentary, often not-fully-conscious expressions. As Siddal and Waterman state, improvisation is "ineluctably embodied; its creative and political force is manifested through sounds and gestures that are the traces of experience at once relational and contextual." 11 This relational and contextual understanding of improvisation is crucial to understanding stimming as not only a biological or neurological thing but as a relational, often socio-cultural expression.

Siddal and Waterman write that improvisation is "a form of recollection and repetition: we call on learned repertoires of sounds and gestures and mobilize them in the moment." 12 Recollection and repetition inform how we stim, where we stim and where we hide (or are forced to supress) our stims. Stimming reflects our cultural background, intersecting identities such as race and gender, formal and informal training, media we consume, interests, and other socio-cultural factors. Due to this complexity of engagement, many in the autistic community refer to their stimming as a language and means of communication. For example, in the video "In My Language," Mel Baggs articulates that the purpose of hir stimming is not to create symbols for others to interpret, but "is about being in a constant conversation with every aspect of my environment, reacting physically to all parts of my surroundings. Far from being purposeless, the way that I move is an ongoing response to what is around me" 13 Jen Meunier (Gzhibaeassigaekwe) defines their stimming as "Body expressiveness in a language broader and deeper than the linear word can convey." 14 Rather than being pathologized, stimming can be conceptualized as a language and an aspect of autistic culture. Stimming can be understood as an articulation and embodied expression of external and internal worlds.

The idea of embodied communication is paralleled in improvisation studies discourse. In the prologue of The Improvisation Studies Reader: Spontaneous Acts, Ajay Heble and Rebecca Caines write that improvisation can be "a key feature of interpersonal communication and social practice." 15 This concept is also articulated throughout dance improvisation discourse, and particularly contact improvisation discourse. Itay Yatuv, in his TedTalk "Contact Improvisation: An Intuitive, non-verbal and intimate dialogue," states that when contact improvisation takes place between two or more people, there is an exchange of physical and sensory information between the participants. He refers to this process as "non-verbal communication," which aims for "complete two-way communication." 16 Stimming for many autistic people, as discussed above, is a non-verbal language and often is a primary method of communication.

Autistic activist Jim Sinclair has written about a notion called "interactive stimming," which xe argues is crucial to "autistic socializing." 17 Xe describes interactive stimming as "a kind of spontaneous sharing of pleasure in fixations and stimming." 18 Nancy Bagatell, in her ethnographic study of autistic adults, describes this further by comparing interactive stimming to a synchronized musical act—ballet. She writes:

at one meeting, I observe two men sitting near each other and one man was tapping his fingers in a rhythmic pattern while the other men rock back and forth in time. At first glance these motions appear disconnected but after a few minutes, I noticed how synchronized and almost balletic their movements were. 19

This notion of ballet and balletic movements certainly reflects autistic online exchanges of stimming practices on social media sites. For example, many hashtags have emerged on social media platforms such as #embracethestim and #stimacceptance to provide an online space for people to share their stims. One user points to the improvisatory nature of stim dancing, writing that "Stim Dancing is a mixture of balance, taught physiotherapy & improvised dance with stimming, ticking, movements & gestures with the purpose to express emotionally and release." 20 Many autistic people have incorporated stim toys, rocking, or engaging in the emergent genre of stim dancing that subverts normative notions of dance and bodily movement. Stimming is a way to reclaim autistic bodies in a society that silences us and that offers acceptance only if we quiet our movements and fully embody (from head to toe) the familiar special education (and Applied Behavioural Analysis [ABA]) adage of "quiet hands." I would argue that what Bagatell describes in her paper as "interactive stimming" is a spontaneous act of collective improvisation and that online interconnected autistic discursive (and textual) exchanges are a form of interactive stimming and collective improvisation.

In an interview with improvisation scholar Tracy McMullen, Judith Butler asserts that improvisation "involves a certain relationship to rule-bound behaviour," and that "improvisation has to either relax the rules, break the rules, operate outside the rules, [or] bend the rules." Butler argues that improvisation "exists in relation to rules, even if not in a conformist or obedient relation." She argues that although we may not always follow or obey the rules—such as gender roles—they still act upon us. She asserts that it is in this relationship with norms and rules that "there is sometimes a possibility of a kind of free play—an improvisational moment." 21

Many autistic people have undergone the traumatic process of ABA. Often considered the "gold standard of autism therapy," ABA was developed by clinical psychologist Ivar Lovaas, who in 1974 worked on one of the most extensive conversion therapy programs in U.S. history entitled the Feminine Boy Project. 22 Implementing the ideas of conversion therapy for queer youth, Lovaas designed ABA with the aim of making autistic children "indistinguishable" from their non-autistic peers. In one of the only studies on the stimming of autistic adults aptly titled "'People Should be Allowed to do What They Like: Autistic Adults' Views and Experiences of Stimming," one of the participants observed from their experience that in ABA, "they basically condition them [autistic people] like Pavlov's dogs to stop stimming." 23 They declare that:

To me it was abuse, because stopping those children stimming when they're trying to calm themselves down or cope with a situation, because even if they manage all the environment around them, there might be situations that they find stressful, and if they haven't got the ability to calm them down, then they could be relying on other people for the rest of their lives or have a breakdown. 24

In circumstances where stimming is not permitted, stimming means breaking the rules and resisting authority. One participant notes:

I remember as a child spinning all the time and loving spinning and loving swinging and feeling that movement all the time, but then I also realized that there was a point where it wasn't acceptable to be spinning anymore… so it actually still feels glorious if there's nobody around and I can skip or spin and it's like I'm breaking the rules." 25

Like improvisation, stimming exists in relation to the rules, specifically unwritten social rules. The practice of reclaiming identity through stimming is to resist the social rulebook. As stated by Melanie Yergeau, by stimming, autistic people are "resisting—ardently and fixatedly resisting." 26

Part II: Stimming and the Affordances of the COVID-19 Era

Autistic people often stim with the help of technologies such as music and stim toys or tools, to mediate between inner worlds and outer environments that may over- or underwhelm us. Our relationship to our environments and to our sensory objects (such as fidget toys) has changed because of the new affordances of the COVID-19 era. As articulated by John Gibson, the "affordances of the environment" are what the environment "offers" us and "what it provides or furnishes for good or ill." 27 Affordance theory provides a navigational and relational understanding of how individuals interact with physical and social spaces. I argue that stimming is an improvisatory interaction with the affordances of our environment. In other words, we stim according to the opportunities or barriers that are presented to us by our environments. In this COVID-19 era where objects we touch are potential locations for viral transmission, the way we interact with stimming has transformed—and this transformation is ongoing. I therefore argue that this continuously mediated response between our stimming and the affordances of our environment is a lived improvisation.

At the beginning of March 2020, I discovered that many of the stims I regularly turned to were no longer accessible. The ways I had comforted myself through stimming: both through bodily expressions and engaging with sensory items (such as fidget toys) now signified potential locations for viral transmission. For example, I no longer could use my chewelry 28 necklaces in public because I feared that someone might cough on them. My awareness that the surface of the silicone beads could carry respiratory particles changed how I interacted with this stim tool, even at home. As a result of this change to my stimming practice, I resorted to chewing on my fingers and biting my hands—self-injurious stims 29 made even more dangerous due to the pandemic.

As initially articulated by John Gibson, affordances refer to the opportunities (or lack thereof) that our environment provides and how our interactions shift according to what the environment affords us. 30 Don Norman, author of The Design of Everyday Things defines affordances as "a relationship between the properties of an object and the capability of the agent that determine just how the object could possibly be used." 31 When we stim, we may interact with objects, including fidget toys or stim tools, and the new affordances of the COVID-19 era have the potential to transform the way we interact with these physical objects. The pandemic necessitates that we interact with objects (and their surfaces) differently depending on their properties and how they may impact perceived viral transmission. 32 According to Gibson, "the composition and the layout of surfaces constitute what they can afford," 33 and there are surfaces that many of us now avoid touching, including traffic light buttons and door handles.

Can Aslan writes that "the global pandemic might change how we interact with daily objects," 34 and that this hesitance to touch door handles may result in "the doors of the post-covid-19 era [being] required to afford opening or closing with forearms rather than hands." 35 Aslan articulates that the changes of the COVID-19 era can "dramatically influence" how we interact with specific objects, and these changes in interaction can "result in a considerable change in the properties of product… thus giving birth to new affordances." 36 Many autistic people incorporate stim toys (or fidget toys) or other physical items in their stimming. The pandemic has significantly changed how we engage with certain items in public—so what "new affordances" may emerge as a result of these changes in interaction?

In "A Theory of Microactivist Affordances: Disability, Disorientations, and Improvisations," Arseli Dokumaci writes about how disabled people must navigate "inhabitable environments" through small improvisatory and spontaneous actions. She explains that: "just as performers counter the constraining and enabling effects of site 'in a work of invention' so too do disabled people disorient existing affordances of the world in a work of invention." 37 She uses the example of improv actors working under direction that restricts what they can do: perhaps they are allowed only limited space, are confined to a small stage, or may only speak using certain words. Inaccessible environments and physical objects similarly constrict disabled people, but through natural processes of invention and navigation, we generate what Dokumaci terms "micro-activist affordances." She writes that these new affordances can "transform an action as micro and mundane as buttoning a shirt into an act of anarchic spontaneity"(emphasis added). 38

Just as there are specific things that we are now less likely to interact with (such as door handles), certain objects necessitate further interaction, including masks. Dokumaci argues that normativity is "sewn into the very form of the garment," and I argue that her analysis also applies to mask-wearing during the pandemic. Like many other autistic people, I find many masks to be sensorily overwhelming and therefore inaccessible. Certain properties of specific fabrics make my face itchy and others make it difficult to breathe. As a result—at least during the first months of the pandemic—I stayed in my home rather than venturing out and risking sensory overload in public. After many months, I eventually found masks that were somewhat tolerable and rather than engaging with my usual stims, I made sure that I chewed gum every time I went outside. I argue that this slight adaptation to my environment's affordances is an improvisatory act of "anarchic spontaneity." I have not used my chewelry for more than a year now—and these items that were once so precious to me are currently sitting on a shelf in my bedroom closet, collecting dust.

The "normate template," is sewn into our sensory-unfriendly masks and is also embedded into broader sensory landscapes; how our cities and environments are constructed, and how people with non-normative sensory processing are excluded in environments that are not compatible with their sensory profile. One of the primary ways autistic people use stimming is as a self-regulatory mechanism and adaptive response to inaccessible sensory landscapes. These are environments, for example that were designed by people without sensory processing differences, and therefore are inaccessible and incompatible with non-normative sensory profiles. Navigating these inaccessible sensory landscapes is embodied: my body bends and twists how it needs to tolerate what the environment has afforded. My stimming is usually unplanned and spontaneous—I often don't realize that I am stimming. My body naturally moves to navigate the changes in an environment: if it is too bright, I might shake my leg under a table; if it is too loud, I may bend my hands back and forth; if there are many people around, I may scratch my thumb with my middle finger from the inside of a jacket pocket. I stim to self-regulate and to avoid sensory overload, meltdowns, or shutdowns in environments that are inaccessible.

The uncertainty of the COVID-19 era is discussed as a source of stress by autistic people in online spaces and stimming is situated as an adaptive response to the strain that results from significant and abrupt changes. In an article called "Dancing in Times of Trouble," Dianne McLean writes that "these are uncertain times for everyone but autistic people often find it much harder to adjust to changes in routine than those who are neurotypical." They assert that stimming helps navigate this uncertainty:

The other thing that helps is moving to the music. This is something I have done off and on my entire life. These days it has a name—stim dancing and it's used by many autistic people all over the world as a way to regulate their emotions. It's a fantastic outlet and best of all, anything goes—move however you want. Naturally, I recommend stim dancing as a way of releasing tension to everyone regardless of your neurotype… So as the world events unfold you will find me here with my loud music dancing to the end of the world. 39

In an article published in Undercover Autism, entitled "Why there has never been a better time for me to be autistic, and for you to learn what it's like…," the author explains that stimming is a "rational" response in this time of uncertainty:

Repetitive behaviours are likely to be increasing across society during this time of uncertainty. Maybe the reader has their own examples? Perhaps you are nervously tapping your leg up and down more at the moment? Or smoking more? Or biting your nails? Maybe that relaxing bath with the essential oils every evening is vital for your wellbeing? Perhaps you've taken up knitting again and find the repeated motion of the needles and the sound of them clicking together rhythmically is soothing? Don't be surprised if your autistic friends, colleagues and family members feel the same and please don't jump to the conclusion that an increase in repetitive behaviours always means that something is wrong with them. There is something wrong at the moment—the Covid-19 pandemic—and it feels perfectly rational to me to increase my coping strategies because of that. I have a huge selection of coping strategies at my disposal and I try and use the healthier ones. 40

Grocery stores—which were already a sensory nightmare for many of us—have become another environment that has become more difficult to navigate. As Michelle O'Neill states: "One-way grocery lanes, Plexiglas and hand sanitizing stations can be confusing additions for someone whose sense of safety depends on their environment remaining predictable." 41 In a blog post titled "A Journey to Hell and Back," autistic blogger Dianne McLean writes about navigating a grocery store. They point to the massive sensory overload that grocery stores can cause, noting that "supermarkets aren't sympathetic places for those of us whose sensory systems are wired towards hypersensitivity." They write that:

The laundry aisle is a nightmarish assault on my sense of smell and the scents drift out way past the actual physical placement of these products. And don't get me started on the fresh mussels! The clashing of the trollies as they get shoved back into line and the rattling and clanging as people push through the entry barriers. The constant beeping of the scanners at the checkout and the low hum of conversation all add up, layer upon layer of sound, into a confusing and physically painful experience. The lighting is horrendous. It's too bright and for some unknown reason my local supermarket decided it would be a great idea to polish their concrete floors, so now the light bounces up from underneath as well! 42

Furthermore, many people are generating "creative choreographies" 43 around the constrictions of working from home. These include improvising at-home office setups, and fidgeting has been called upon by scientists and public health experts as a potential solution for resulting discomfort. In a study by the UC Davis MIND Institute and UC Santa Cruz, lead investigator Julie Schweitzer notes that with mounting pressures and anxieties surrounding COVID-19, "working or attending school from home is a challenge… and fidget devices might ease anxiety." She further lists a few ways that fidgeting can be helpful for at-home workers, citing that it can help "improve people's attention" and improve "emotional regulation." 44 In a BBC article titled "COVID-19 How to Work From Home Comfortably," Bryan Lufkin writes about something called Non-exercise activity thermogenesis (NEAT). 45 He cites a study from another journal (Best Practice & Research Clinical Endocrinology & Metabolism) that describes NEAT as "the energy expended for everything we do that is not sleeping, eating or sports-like exercise. It ranges from the energy expended walking to work, typing, performing yard work, undertaking agricultural tasks and fidgeting." 46 Lufkin continues by specifically highlighting "fidgeting" and "tapping your toes" as some crucial ways to maintain energy levels during at-home-working situations. He writes that "the main goal is that you're moving intermittently and varying your posture throughout the day to avoid strain." 47 These studies reiterate what many autistic people have been saying for years—that stimming can be a valuable way of navigating environmental and sensory barriers.

Implications for Further Study:

Morénike Giwa Onaiwu emphasizes how stimming could put autistic people—particularly autistic BIPOC people—at further risk within the newly imposed public health rules around the pandemic. Onaiwu writes that accessing essential services could put autistic people, particularly those who stim at risk for "fine, arrest, or even physical harm… all because people do not understand that we might present differently." She continues by stating that:

In some places they are using apps to determine whether or not a person who [sic] has symptoms of COVID-19, where they are and where they are going, whether a person is sheltering in place or not, and checkpoints if you are leaving your home. This could put a person at risk of having more interactions with police officers, and we are individuals with communication disabilities! So this is already an uncertain time with a lot of stress and anxiety for everyone, but for us, it is heightened, and even more so if in addition to being autistic you are a nonspeaking individual and/or a person of color and/or queer and/or a person with very visible noticeable stims. 48

The risk of state violence, both within healthcare institutions and by police has been amplified for people with visible stims, particularly autistic BIPOC people. For the purposes of this paper, I cannot expand on this multitude of experience, or adequately emphasize the importance of how institutionalized ableism and racism have been heightened because of the pandemic. These are topics that require further inquiry and that are beyond the scope of this paper.

It is also crucial to reiterate here that for many of us, stimming can be self-injurious. These are stims that may cause bodily or mental harm and that can sometimes result in serious injury. The aim of this paper is not to provide advice about self-injurious stimming— cures and treatments for self-injurious stimming dominate the literature already. However, what I hope I have provided is an alternative framework for understanding stimming—one that resists the prevailing attitude that all stimming is self-injurious. What I also hope to provide is an alternative to the common idea amongst some autistic activists that all stimming is good stimming. Although the latter seeks to reclaim stimming, and to frame it in a positive light, many authors and creators do not account for how privilege (particularly white privilege) plays a role in who is able to stim openly while remaining safe from ableist (and often racist) violence.

During the COVID-19 era, not only are we faced with more ableism, many of us are at further risk of police violence and medical trauma, resulting from a lack of understanding of our divergent behaviours. In crises, we are improvisers: constantly adapting for our survival and to avoid bullying, abuse, violence, discrimination, and death. We are also perpetual stimmers: displaying or masking our stims, engaging in self-injurious or artistic stims, creatively expressing ourselves, or responding to trauma or stim suppression. Regardless of the magnitude of the crisis or the nature of the stim—we are stimprovisers.

Bibliography

Endnotes

  1. Ibid
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  2. Jessica N. Lester and Trena M Paulus, "Performative Acts of Autism," Discourse & Society 23, no. 3 (2012): 260.
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  3. Joseph Straus,"Autism as Culture," In The Disability Studies Reader. Ed. Leonard J. Davis. Taylor and Francis, 2016: 472.
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  4. Tracy McMullen, "Improvisation within a Scene of Constraint," In Negotiated Moments: Improvisation, Sound, and Subjectivity, Ed. by Gillian Siddal and Ellen Waterman (Durham: Duke University Press, 2016): 21.
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  5. Stephen Nachmanovitch, Free Play: Improvisation in Life and Art (New York: Penguin Putnam Inc., 1990): 16.
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  6. Ibid., 22.
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  7. Steven K. Kapp, Robyn Steward, Laura Crane, Daisy Elliott, Chris Elphick, Elizabeth Pellicano, and Ginny Russell. "'People should be Allowed to do what they Like': Autistic Adults' Views and Experiences of Stimming." Autism 23, no. 7 (2019): 2.
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  8. Ibid., 5.
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  9. Ibid., 5.
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  10. "Sensory Diet," Musings of an Aspie, February 28, 2014, https://musingsofanaspie.com/2014/02/18/sensory-diet/.
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  11. Gillian Siddall, and Ellen Waterman, Negotiated moments: Improvisation, Sound, and Subjectivity. (Durham: Duke University Press, 2016): 1.
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  12. Gillian H. Siddall and Ellen Waterman. Negotiated moments: Improvisation, Sound, and Subjectivity. (Durham: Duke University Press, 2016): 3.
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  13. "In My Language." YouTube Video. Posted by "silentmiaow" https://www.youtube.com/watch?v=JnylM1hI2jc.
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  14. Lydia X.Z. Brown, E. Ashkenazy and Morénike Giwa Onaiwu. All the Weight of Our Dreams: On Living Racialised Autism. (Onaiwu, USA: DragonBee Press, An Imprint of the Autism Women's Network, 2017): 430.
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  15. Rebecca Caines and Ajay Heble, The Improvisation Studies Reader: Spontaneous Acts, (London & New York: Routledge, 2015): 2.
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  16. "Contact Improvisation: An Intuitive, Non-Verbal and Intimate Dialogue: Itay Yatuv at TEDxBGU," YouTube video, Posted by "TedxTalks," https://www.youtube.com/watch?v=Gi-OaiQvnTU.
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  17. Bakan, Michael B., "The Musicality of Stimming: Promoting Neurodiversity in the Ethnomusicology of Autism," Musicultures 41, no. 2 (2014): 146.
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  18. Nancy Bagatell, "From Cure to Community: Transforming Notions of Autism." Ethos 38, no. 1 (2010): 39.
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  19. Ibid., 39.
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  20. Instagram post (cherishkay.photo, April 27, 2020).
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  21. Ibid.
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  22. Melanie Yergeau, Authoring Autism: On Rhetoric and Neurological Queerness, (Duke University Press: Durham and London, 2018): 29.
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  23. Steven K. Kapp,, Robyn Steward, Laura Crane, Daisy Elliott, Chris Elphick, Elizabeth Pellicano, and Ginny Russell, "'People should be Allowed to do what they Like': Autistic Adults' Views and Experiences of Stimming," Autism 23, no. 7 (2019): 6.
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  24. Ibid., 6
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  25. Ibid., 7.
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  26. Melanie Yergeau. Authoring Autism: On Rhetoric and Neurological Queerness. (Duke University Press: Durham and London, 2018): 3.
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  27. James Gibson. "The Theory of Affordances." In The Ecological Approach to Visual Perception (Hillsdale, NJ: Lawrence Erlbaum, 1979): 119.
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  28. Chewable jewelry or "chewelry" are necklaces made out of silicone beads that you chew on for sensory stimulation.
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  29. Self-injurious stims are stims that may cause bodily or mental harm, and that can sometimes result in serious injury.
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  30. James Gibson. "The Theory of Affordances." In The Ecological Approach to Visual Perception (Hillsdale, NJ: Lawrence Erlbaum, 1979): 119.
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  31. Can Aslan, "Affordances of the post-COVID-19 era" UXCollective, May 10, 2020, https://uxdesign.cc/affordances-of-the-post-covid-19-era-5c93eeaa43ad.
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  32. For more information please see: https://www.mcgill.ca/oss/article/covid-19-health/how-long-does-covid-virus-live-surfaces
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  33. James Gibson. "The Theory of Affordances." In The Ecological Approach to Visual Perception (Hillsdale, NJ: Lawrence Erlbaum, 1979): 119.
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  34. Can Aslan, "Affordances of the post-COVID-19 era" UXCollective, May 10, 2020, https://uxdesign.cc/affordances-of-the-post-covid-19-era-5c93eeaa43ad.
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  35. Ibid.
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  36. Ibid.
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  37. Ibid., 492.
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  38. Ibid., 501.
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  39. Dianne McLean, "Dancing in Times of Trouble," Rainbow Daisies, March 22, 2020. https://rdaisies.wordpress.com/2020/03/22/dancing-in-times-of-trouble/.
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  40. "Why there has never been a better time for me to be autistic, and or you to learn what it's like," Undercover Autism, March 28, 2020, https://undercoverautism.org/2020/03/28/why-there-has-never-been-a-better-time-for-me-to-be-autistic-and-for-you-to-learn-what-its-like/.
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  41. Jane Skkrypnek, "Pandemic poses serious problems for children with autism, say Victoria parents," Vancouver Island Free Daily, October 31, 2020, https://www.vancouverislandfreedaily.com/news/pandemic-poses-serious-problems-for-children-with-autism-say-victoria-parents/.
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  42. Dianne McLean, "A Journey to Hell and Back…" Rainbow Daisies, December 24, 2020, https://rdaisies.wordpress.com/2020/12/24/a-journey-to-hell-and-back/.
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  43. Dokumaci, Arseli. "A Theory of Microactivist Affordances: Disability, Disorientations, and Improvisations." The South Atlantic Quarterly 118, no. 3 (2019): 493.
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  44. "Toy or therapy device? UC Davis Health researchers study effectiveness of fidget tools," UCDavis Health Newsroom, July 29, 2020, https://health.ucdavis.edu/health-news/newsroom/toy-or-therapy-device-uc-davis-health-researchers-study-effectiveness-of-fidget-tools/2020/07.
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  45. Bryan Lufkin, "COVID-19 How to Work From Home Comfortably," BBC, May 8, 2020, https://www.bbc.com/worklife/article/20200508-how-to-work-from-home-comfortably-ergonomic-tips-covid-19.
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  46. James A. Levine, "Non-exercise activity thermogenesis (NEAT)," Best Practice & Research Clinical Endocrinology & Metabolism 16, no. 4 (2002): 679-702.
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  47. Bryan Lufkin, "COVID-19 How to Work From Home Comfortably."
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  48. Sarah A. Cassidy, et al. "An Expert Discussion on Autism in the COVID-19 Pandemic," Autism in Adulthood 2, no. 2 (2020): 111.
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