Sensory Overload
Complex Embodiment, Digital Media and the Neurodiversity Movement
David Molloy
11743174
davidmsy7@gmail.com
Table of Contents
The cover image, one of a series of paintings on mental health, was used with the permission of the
original artist Haydn Gardner. https://messymiscreation.com/
Introduction
3
Research Questions, Theories and Goals
9
Social Prosthesis
15
Amplified Recognition
25
Corporeal Sensitivity
38
Allistic Resistance
52
Conclusion
63
Works Cited
65
Introduction
Autisticat by strangerdarkerbetter.tumblr.com/
This thesis is about the autistic community’s presence on digital media, its practical and civic effects, and the reactionary subcultures that critique its worldview. For simplicity, the phrase #ActuallyAutistic will be used intermittently to refer to said community. Following an introduction to the autistic spectrum, the text will argue that media has been a significant and consequential presence in the history of autism since its discovery, that the advent of digital media has accelerated the development of an emerging civil rights movement, and that future debates on autistic identity will be closely tied to new media capabilities.
Implicated in this are debates on mediated treatment, consumption, and autistic psychology, covered in Chapter 1, “The Social Prosthesis” - a sensory ethnography of autistic-based media inspired by Michael Callon’s “prosthetic agencement” and Harvey Blume’s 1997 phrase “for many autistics the Internet is Braille”.
Chapter 2, “Amplified Recognition” will assess the online presence of the neurodiversity paradigm, an anti-pathology movement that argues for the acceptance of autism as a natural variation rather than a disorder. Again taking influence from Callon, the chapter will argue that online media are the primary (or at least most readily apparent) tool for the habilitation of autistic identity.
Chapters 3 and 4 (“Corporeal Sensitivity” and “Allistic Resistance”) follow the embodied empowerment of the emerging Autistic Pride movement towards its multi-faceted backlash: powerful charities, celebrity ambassadors, parent groups, publishing houses, conspiracy theorists, far-right reactionaries, memelords, trolls and a subset of the autistic community itself have been symbolised as resisting forces against the neurodiversity paradigm.
The thesis will close with a consideration of digital media’s role in the dramatic upheavel of autistic identity, and the need to consider the phenomenon’s future events with full context and an empathetic approach to the arguments of the #ActuallyAutistic.
Keywords: autism, agencements, actor-network, digital activism, reactionary subculture
Autism
Autism is a developmental disorder that, frankly, risks reductive definitions from even the most skilled insight. There is no such thing as a ‘typical’ autistic person, and behaviours are as prone to diversification as any other group. Consensus is hard to come by in the field, with the exception of diagnostic criteria: difficulty with speech, language, body co-ordination, and social interaction are common. Just as significant and less understood is the sensitivity exhibited in regulating the body’s semantic and physical responses to sensory input.
In critical terms, “assault on the senses” typically describes cultural works that insist on the adage of “more is
more”: Hollywood films that depict the decimation of cities, video games that distract the player seemingly at
all turns, and so on. In autism studies sensory overload is not a metaphor but a significant issue in the culture. At its core it is easy to explain: Imagine a television, then multiply it’s maximum volume and saturation levels to a level deemed appropriately unbearable. The autistic will struggle all the more with the results, especially if the channel playing is one of the handful of thousands available that they find personally aggravating. Then translate said experience to a stereo system blasting the sound of nails on chalkboard, eating food you find revolting, the confusion of being lost in a crowd and so on; the idea is effectively demonstrated.
As a result, the autistic develops a set of coping strategies. The most catchily-monikered is stimming (self-stimulating behaviour), active behaviour to regulate sensory input and aid concentration through repetitive tasks. Common behaviours include rocking, playing with a toy, and flapping hands. The majority of stimming behaviours are harmless, but it can also result in self-injury, particularly with younger children. Another popular aspect of autistic behaviour is the special interest - fixation on a topic they find fascinating, usually expressed early in childhood with a precocious level of detail and a naive sense of priority and scale. The usual cultural gag of this behaviour is the little boy who loves trains, though the topic of an individual’s interest could conceivably be sourced from anywhere.
Popular representation of the spectrum typically makes a distinction between low and high-functioning autistics, based on the individual’s reliance on assistance in everyday life. However, some autistic advocates
believe these categories to be inaccurate at best and harmful at worst for the understanding of their condition.
Neurodiversity
Coined in the late 1990s by the sociologist Judy Singer, neurodiversity is an approach to the study of disability that argues divergences in neurological ability are the result of normal variations in the human genome. An echo of terms like biodiversity and cultural diversity, the concept is in part a reaction to increasing rates of autism diagnoses. Coverage and popular understanding has emphasised pathology and difference, arguably cultivating stigma and silencing autistic voices on the world stage. The idea has led to the emergence of the neurodiversity paradigm and social justice movement, a loose global collective that campaigns for civil rights, equality and inclusion for the neurodivergent, with an emphasis on self-advocacy over neurotypical allies.
Neurodiversity is influenced by the social model of disability, which argues that individuals are not disabled by their impairments but by barriers imposed by society, “leaving disabled people at the mercy of an ideologically driven government with no-one to defend [them] except the big charities who are driven by self-interest” (Oliver 1026). Though most research in this field focuses on physical disabilities and sensory deficit groups - deaf culture most prominently - such ideas are as applicable to the living experience of the autistic:
“Constructed as the embodiment of corporeal insufficiency and deviance, the physically disabled body becomes a repository for social anxieties about such troubling concerns as vulnerability, control, and identity” (Garland-Thomson).
The neurodivergent community and innovative technology have been closely connected throughout history, to the point of tired cliché. The technology writer and neurodiversity advocate Steve Silberman argued that easily accessible and popular technologies have played a key role in assisting autistic people in communication, from amateur ham radio communities in the early 20th century to the visual-based intuitive language of the tablet computer. Harvey Blume made a similar argument in an early piece on neurodiversity, writing that it “may be every bit as crucial for the human race as biodiversity is for life in general… Cybernetics and computer culture, for example, may favour a somewhat autistic cast of mind” (Blume). For example, the prevalence of sensory regulation in autism debates and the need for self-stimulating behaviour as a management technique for anxiety highlights interesting implications for the application of affordance theory as well as the ramifications and positive effects of rapid hypermediation, while autistic “deficits” such as echolalia, local coherence and dysprosody are re-conceptualised through popular facets of intermediation like memes, message boards and YouTube videos.
The internet has also served as a productive catalyst for inter-community debate, an equal playing-field where activists can easily find others like them. Singer has described the web as “a prosthetic device for people who can’t socialize without it”. This has resulted in an abundance of blogs, social networks, charities and activists that seek to represent perspectives from people often assumed to be incapable of nuanced expression at all. Reddit’s culture of providing a network for as many niches as possible has provided subreddits for people interested in neurodiversity, as well as accommodating networks for people on the spectrum and its various intersections, including autistic women, LGBT, teenagers, and parents. Other examples of such subreddits are pages dedicated to dating and relationships, and hobbies popular in the community such as gaming. Online community formation has in turn produced micro-celebrities to go with them. These include: Alex Plank, the founder of the autism forum Wrong Planet and a consultant for the television series The Bridge, which featured an autistic character; Ari Ne’eman, an activist who co-founded the Autistic Self Advocacy Network and was appointed by US President Barack Obama to serve on the National Council on Disability; and Mel (formerly Amanda) Baggs, a nonverbal blogger best known for their 2007 YouTube video In My
Language.
There is also a small minority of people under the neurodivergent banner who disapprove of the approach, such as Jonathan Mitchell (who blogs under the name Autism Gadfly), a critic of the neurodiversity paradigm and advocate for an eventual cure. Other prominent critics of the neurodiversity movement hail from a set of backgrounds seemingly as varied as the movement it stands against. Parent groups, anti-vaccine pseudoscientists, publishing houses, far-right trolls, dog-whistling politicians and William Shatner have all raised mutual ire with the autistic community’s online presence, sometimes with 2 pages of a Google search to back them up.
Structure of the thesis
The themes guiding each chapter are a quasi-narrative device constructed from the influence of several theoretical frameworks: Michael Callon’s agencements, Tobin Siebers’ complex embodiment and Meryl Alper’s
sensory-inclusive ethnography, among others.
Social Prosthesis / Prosthetic Agencement
Borrowing from the cottage industry of proposed “social-emotional prostheses” for autistic children - Chapter 1 will consider new media’s role as a regulatory resource for autistic individuals. Following a brief review of recent research in the field - with particular influence from Alper’s argument for a sensory inclusive
ethnography - the chapter will borrow terms and concepts from disability, autism and sensory studies and assess
the significance of new media theory for a set of treatment-centred digital objects.
The chapter’s introduction will introduce the theories of executive functioning and corporeal reflexivity, two of the most common targets for prosthetic applications. The rest of the chapter will then assess a set of media objects from the agencement framework, as well as #ActuallyAutistic’s critique of the lasting legacy of Applied Behaviour Analysis in the design of autistic apps.
Amplified Recognition / Habilitated Agencement
Chapter 2 will cover the use of new media by autistic communities to renegotiate the normative framework surrounding autistic identity. Taking influence from Michael Callon’s notion of agencements, this section argues that the internet’s stereotype as being particularly suited to autistic tastes is actively being subverted by autistic political actors with intimate knowledge of media frameworks. The culture illustrated, though obscure and niche by design, has potential to have some influence on upcoming cultural agenda.
Corporeal Sensitivity / Complex Embodiment
As an emerging civil rights movement, neurodiversity has bred skeptics and antagonists in response. Like neurodivergents, they have taken advantage of the internet to promote their ideas. The US-based charity Autism Speaks has been long controversial in the autism community for its choice of research goals, inconsistent hiring practices and hostile attitude towards their critics. Although the charity is the most consistently defined anti-program in the neurodiversity community and has suffered a series of minor scandals, its prominence has seemingly not been dulled. Autism-related search engine results overwhelmingly favour the charity’s website, giving the appearance that a divisive US-based charity is a de facto world authority on autism.
In contrast to Autism Speaks - which has noble (if wildly inconsistent) intentions and undoubtedly made a significant contribution to research - misinformation, conspiracy and prejudice are also common on the web. These strains are covered in the Allistic Resistance chapter as an emerging force of artificial hegemony. This undercurrent of autism-related content includes the post-ironic memeification of ‘weaponised autism’ in the alt-right to the more alarming promotion of dangerous “cures” on private parenting support groups and websites that argue autistic people (particularly men) are violent sociopaths who are to be avoided, separated from their children, institutionalised or even forcibly sterilised.
Unfortunately, the malevolent tone of this emerging phenomenon have had some measure of mainstream penetration - Judith Newman’s memoir on the joys of violating her autistic son’s privacy and bodily
autonomy was a bestseller. Anti-Vaccine medical professionals host cutesy YouTube series plugging discredited diets to mitigate the Big Bad of autism. Dissenting autistics have started the #AutisticDarkWeb in a manner echoing the tactics claimed by 2016’s far-right reactionaries. Lest the reader start thinking I am suggesting a conspiracy, far from it. Conspiratorial figures like Hating Autism’s John Best Jr. have already done enough to press the farcical logic of government interference.
* * *
An unfortunately recurring motif throughout mainstream debate on the autism spectrum - from the benevolent organisation donating millions to genetic research to the obscure Facebook group linking autism to monstrous episodes of violence; from reviews of innocuous television shows with autistic characters to ambitious politicos that decry autism as an ‘epidemic’ ruining communities - is the relative lack of openly 1 autistic figures contributing to the debate. What this thesis puts forward is that the community’s prolific subcultural life on the internet - through affiliated blogs, videos, independent courses, and the #ActuallyAutistic hashtag - is providing a case against orthodox views of the autistic spectrum that struggled to find public prominence in the past.
As an example, coverage of the alt-right’s disrespectful conduct towards matters of race, gender and sexuality are by now inextricably welded to the movement’s character profile. The group’s claim of harnessing ‘weaponised autism’ has gone relatively unscratched outside of some exceptions, and autism has made its presence known in other subcultures of interest. This has resulted in the sharp supercession of autism as the
slur de jour of 4chan and reddit, replacing ‘retarded’ as a fresh three-syllable decimation of another’s intellect.
The rapid spread of autism misinformation in the wake of violent attacks is another example of the fake news machine that is of particular interest while the rate of digital-native scandal continues to rise.
Newly-elected Premier of Ontario Doug Ford on a local home for disabled youth: “You can’t destroy a community like 1
this. People have worked 30 years for their home…My heart goes out to kids with autism. But no one told me they’d be leaving the house.”
Research Questions, Theories and Goals
“So, I feel like I should clarify, the “autism is a neoliberal conspiracy” argument isn’t as ridiculous as it sounds, it just kind of ignores…”
http://myautisticpov.com/post/159223907902/so-i-feel-like-i-should-clarify-the-autism-is-a
The primary focus of this study is on a community largely made up of individuals who consider themselves
neurodivergent - usually (but not exclusively) used to identify people on the autistic spectrum. I aim to respect the
individuals making up this community’s ability to speak for themselves and to avoid the use of catch-all analysis and definitive statements on the ‘neurodiverse’ landscape as a whole. It is nonetheless my responsibility to work under a cohesive model of disability and autism culture to avoid untethered, ill-focused research.
Within media studies, autism has for the most part served as a rhetorical device, rather than the subject of nuanced debate (Pinchevski and Peters), in particular as a metaphor for social isolation (Pasek) and upholding stereotypes of autistic individuals as cold and robotic, with a natural affinity towards computers often presented as a given (Danforth et al). In an attempt to fill in such gaps, this study will directly involve internet platforms that emphasise the social, such as blogs, YouTube videos and message boards. Therefore, when the thesis describes the characteristics and social mileus that these platforms host, it will be through the perspective of the social model of disability, which is itself favoured in the neurodiverse community. In this section the social model will be expanded on and compared with the medical model of disability. Terms from the field of autism research - usually describing a perceived deficit - will be introduced in adapted forms throughout the text.
As the study concerns itself with a sensitive topic that is difficult to analyse even in the disability field, this section will begin with a brief note on the interdisciplinary approach undertaken during this study, how it has informed my approach to research, and its relevance to the new media field. This will be followed by an overview of the social and medical models and the questions and ideas that have guided the research.
Interdisciplinary Approach
This thesis was inspired by conversations with my elder sibling, a graduate of Health and Disability Studies who now works as a professional in the field. She introduced me to the social and medical models of disability, and its relevance to societal treatment and expectations of the afflicted. Around that time, the alt-right were attaining an increasingly high profile, and I couldn’t help but notice an interesting prism of
antagonism between online reactionary groups, autism-advocates, scientific charities and conspiracy theorists (to say a few).
Since it’s likely unavoidable even if I try not to, the research will involve the reproduction of statements by passionate actors and their critics (some anonymous) in a contested area. Although my personal sympathies lie with the #ActuallyAutistic community over the pathology framework they critique, the presentation of singular arguments is not intended as tacit endorsement but to provide a clear ethnographic image of the beliefs driving the surrounding debate. I am observing and documenting a movement that merits further study, and as such it is my intention to create a vivid picture of the situation; not necessarily to intrude, co-opt, endorse.
Although I am writing from a new media perspective, the topic requires at least some familiarity with disability studies and the autism rights movement. Although the social and medical model will both be considered, the social model has been more influential to the propulsion of the research. This is not to provide ideological fealty to this perspective over the medical model, exactly; considering this is a new media thesis that largely focuses on a disadvantaged community congregating on the web, it was the most appropriate option. References to the grouping of anti-neurodiversity parents, medical professionals and so on are not intended as blanket condemnations of those raising and caring for autistic people, and is instead intended as representations of particular arguments. Any resultant mischaracterisation and mistake is entirely my own.
Key to the interdisciplinary approach is the ability for digital media to form innovative techniques of embodiment: “a view which takes account of both the physical reality of the body as it is lived by people with disabilities, and of the ways this interacts with the built environment, with institutions, with social and cultural forces, to produce disabled identity and disabled experience” (Limburg 148).
The Social and Medical Model of Disability
In a post marking the onset of Autism Awareness Month, the Facebook page Giraffe Party posted a bingo sheet of clichés and examples of casual prejudice against autistic people with the caption “Autism Awareness Month? More like Autistic BEWAREness! We need something to make us laugh through the worst month of the year” (Fig. 1) . 2
https://www.facebook.com/autisticpartygiraffe/photos/a. 2
As well as being an accessible entry-point into the concerns and frustrations of the autism community, the content of the card is indicative of the misunderstandings surrounding the condition that remain hard to shake off. The neurodiversity movement is based on the assertion that diagnosis is not commensurable to dignity, and the conception of autism as a sliding scale of mild to extreme ‘symptoms’ undermines the paradigm’s central argument, wherein the spectrum takes on the cast of “a three-dimensional universe of behaviors as challenging to define as the notion of human personality itself ” (Solomon).
Although they are far from the only means by which disability has been theorised, the social and medical models are by some measure the two most frequently applied and debated. The social model, developed by the sociologist Mike Oliver in the 1980s, is based on the notion that disability arises not from the individual’s physical or mental impairments (a term wholly distinct from disability), but by the society that fails to consider the accessibility needs of the entire community rather than just the able-bodied. Under this model, the pathologising of individuals with autism strengthens the social constructs holding them back while simultaneously denying their perspective.
Under the medical model of disability, the nature of impairment is described as a situation that needs to be addressed by the individual affected, preferably through professional treatment. Under this model - favoured by famous and controversial charities such as Autism Speaks and by a not-insignificant amount of people on
the spectrum with pressing medical needs - autism’s status as a disorder is deeply established, and therefore requires above all else ameliorative treatment and prevention. It does not necessarily regard the neurodiversity movement as dangerous or mutually exclusive - although there are some operating under this model who have no qualms with dismissing autistic people who critique the medical perspective as delusional or as interlopers whose ability to defend themselves belies the notion that they are ‘truly’ autistic.
This is, to be clear, a vastly simplified version of the two camps, and it must be noted that the medical model is further complicated as a result of tension sparked by advocates of harmful conspiracy theories, particularly those related to vaccines. Advocates working under the social model are themselves not immune to their own idiosyncratic permutations, conflict and factions - with deviations usually related to activist goals, acceptable language and co-morbidity.
https://twitter.com/ellenfromnowon/status/707710248296046592
How has new media been operationalised for the cultivation of prosthetic and habilitated
agency?
This question will explore the prosthetic capabilities of new media for autistic users in detail, with the interplay between Michael Callon’s notions of prosthetic agency and habilitated agency serving as chief influence. Technology presented as an aid to autistic people - in education or social development - is a prolific field. However, the majority of cases operate from the medical model, and are tailored towards the interests of parents and healthcare professionals, not necessarily autistic people themselves.
The research will borrow terms from disability and autism studies used to theorise on the medical and social implications of the conditions’ impairments (for example, theory of mind, local coherence, prosody, etc.), and their central arguments will be re-assessed under agencement theory and ultimately adapted into a form applicable for media studies.
How have recent examples of online autistic identity been informed by online media
frameworks?
The research will present an analysis of the relationship between autistic identity and the internet, with the intent of highlighting the abilities afforded to a community often defined by its unusual social graces. What this section argues is that new media and autism are potentially natural bedfellows, though not in a fashion that’s typically covered by other studies. Although the relatively loose affiliations between weblogs result in a large collection of sites that differ from each other significantly (at times dramatically), a common thread is the idea of the internet as a potential catalyst for future understandings of the condition and of disability broadly; highlighting Callon’s move of prosthetic agencement to a habilitated model.
In other words, what do these tools offer for advocates and neurodivergents that represent a clean break from what came before? Furthermore, how has recent innovations in digital media affected the lived experiences of autistic people? Participatory culture, in particular, is an important theory for this research. An emerging group of organised advocacy is a possible corrective to pathologist thought in academia and societal thought, usually articulated through the lens of parents and healthcare professionals.
The movement’s wish to introduce relatively radical ideas - chief among them that the pathologising of their condition is personally offensive - is widespread but self-contained. The research will assess possible causalities between this obscurity and the greater prominence given to their medical-model counterparts by ostensibly neutral algorithms. In the wake of mass-scale misinformation campaigns directly targeted towards disadvantaged groups, as well as extreme right-wing groups’ proclivity to seek out and antagonise the politically and socially vulnerable, the implications of the modern day media landscape on the neurodiversity paradigm and community merits close attention.
To what extent has the backlash against the neurodiversity paradigm been influenced by/work
in parallel with similar digital-native provocateurs like the alt-right and troll culture?
The third phenomenon the study explores is the subsequent movement of backlash, reaction and critique to the neurodiversity paradigm. In most cases, the groups at the forefront of this backlash are adept at the very
same tools operationalised by the neurodivergent community - social media, search engine optimisation, etc. The arguments presented in these groups vary in background, tenor and goals, with some ideological overlap on the individual level. These include the anti-vaccination movement, “warrior-moms” who allegedly exploit and dehumanise their autistic children, far-right provocateurs as likely to demonise autism as claim it as their own, and groups spreading toxic misinformation on the autistic condition to encourage further stigmatisation and present the case that “autistic pride” is an oxymoron.
This section will consider the immediate present of the autism rights movement, where the introduction of habilitated agencement has provoked responses from a range of actors, each with distinct and overlapping agendas. It is this realm where the potential consequences are particularly significant. It is through these antagonisms that alternative definitions of the autism spectrum, both positive and negative, are introduced. The section will introduce a handful of significant players in the field, assessed and analysed with recent thought on the emerging culture of political instability online.
Social Prosthesis
Prosthetic Agencement
http://doodlebeth.com/autistic-style/
Introduction
Borrowing from the cottage industry of proposed “social-emotional prostheses” for autistic children - this chapter will consider new media’s role as a regulatory resource for autistic individuals. Following a brief review of recent research in the field - with particular influence from Alper’s argument for a sensory inclusive ethnography - the chapter will borrow terms and concepts from disability, autism and sensory studies and assess the significance of new media theory for a set of treatment-centred digital objects. The chapter’s introduction will introduce the theories of executive functioning and corporeal reflexivity, two of the most common targets for prosthetic applications. The rest of the chapter will then assess a set of media objects from the agencement framework, as well as #ActuallyAutistic’s critique of the lasting legacy of Applied Behaviour Analysis in the design of autistic apps.
Sensory-Inclusivity
Sensory ethnography is a development on sensory research in the new media field developed by the cultural
anthropologist Sarah Pink, who argued that the field challenges existing representational and cultural agendas surrounding sensory studies. Meryl Alper argues that in light of recent moves to ethnographically research how senses affect the experience and perception of technology, an inclusive sensory ethnography is required in order to account for neurodiversity in future studies. For example, autistic children have frequently described the integration of media in the act of sensory-regulation (Kirby et al), sometimes as a self-directed act of adaptation towards unpleasant experiences (Ringland et al).
Paterson described touch in particular as being not just a singular mode of perception but an “ensemble” of affective, kinaesthetic and somatic ways of knowing (Paterson). Richardson proposed that encounters with screens in every-day life are affected by the co-constitutive nature of mediated environments and practices embedded within the screen’s interface: “Such a perspective considers the screen interface as quite literally an aspect of our corporeal schematics; that is, through routine use screens have become part of the dynamic arrangement of our embodied experience” (Richardson). This is further complicated by difficulties in unusual sensory capabilities, identified by Dunn as: low sensory registration, sensory seeking, sensory sensitive, and sensory avoiding (Dunn) as well as the cultural and social shaping of sensory dysregulation (Geurts); for example active discouragement and punishment for coping strategies common among the autistic population (Bascom).
Affordances are the characteristics of an environment, tangible or otherwise, that set the terms of engagement by which a user can interact with them. Rather than a rigid rulebook defined by limitations, the role of affordances is defined by “what it offers the animal, what it provides or furnishes, either for good or ill… it implies the complementarity of the animal and the environment” (Gibson 127). In new media studies, affordances are closely related to sensory perception, particularly in regards to sight and sound, but this has extended to touch in the wake of touch-screen technologies achieving greater prominence. Whether such
technologies can accurately be described as haptic and/or tactile remains the topic of continued debate, but the idea holds distinct relevance for this study as a result of its interest in the interactive qualities of sense. Goggin and Newell have noted that “new media technologies have become central to and formative of disability communities” (Goggin and Newell, 2003: 148) while also lamenting that the same technologies are prone to “new forms of exclusion” (Goggin and Newell 2005) or tokenism. Paterson, in his study of haptic media, emphasises the positive potential of VR technologies and its ability to reframe the idea of bodies and sensory perception, writing that such innovations represent “an opportunity to include users with a range of physical and sensory abilities or impairments [and] to experiment with the sensorium […] this wilful engagement with the multi-sensory nature of media has assumed that bodies themselves become laboratories, somatic sites where empirical work can be done on the constituents of the sensorium, where alterations and perturbations of the normate sensorium occur not only as entertainment but also as a way of promoting more empathic engagements with the environment or with others” (Paterson 1554). Goggin, on the other hand, remains skeptical, noting that there “remains an assumption that developments in new media will expand the worlds of all us, including users with disabilities… it is evident that through media, even today, we only appreciate a small fraction of the human sensorium” (Goggin 2017:1575).
Prosthetic Targets
Executive Functioning is a term used to describe a particular set of components in human cognition,
specifically working-memory, planning, impulse control, inhibition and mental flexibility. Deficits in executive functioning are thought to be intrinsically linked to ASD, negatively affecting competence in “self-regulation, self-directed behavior toward a goal, breaking out of habits, making decisions and evaluating risks, planning for the future, prioritising and sequencing action, and coping with novel situations” (Craig).The condition is thought to be connected to disordered cortical connectivity in the pre-frontal cortex (Han et al), and neuropsychological study found that greater divergences in behaviour occurred with older individuals with ASD (Rosenthal et al).
Most professional treatments of executive function involve mediation to at least some degree, most commonly with playing cards and video games, or at least an approximation of either (Kaplan). A study into one such app from the medical model emphasised autistic childrens’ inability to “ignore visual and auditory distractors, or to inhibit ongoing activity on behalf of a new one, or to extract themselves from a routine” and clarified the ultimate goal of such treatment: “beyond acquiring always more knowledge, it is crucial to be able to inhibit reactions that get in the way of learning something new” (Moutier). Treatment that seeks to remove aspects of an autistic person’s behaviour is a frequent target of critique in the neurodiversity community.
Recent research has suggested that autistic behaviours may be more influenced by the environment than previously thought, with some advocating further research into prenatal factors (Kuehn). In other fields, research has assessed the potential of designing for autistic audiences (Gaines), particularly in regard to creating a comfortable, sensory-friendly home environment (Nagib). Sensitivity to sound is of particular interest, with research noting that coping mechanisms among adults with ASD are largely avoidant, as unpleasant noises can feel intrusive, overwhelming and emotionally deleterious (Landon).
Corporeal reflexivity is the display of awareness of one’s body as simultaneously an experiencing subject
and as a physical object accessible to the gaze and interpretation of others. Researchers believe that deficits in this area contributes to stigma and isolation, as a particularly afflicted individual would be left vulnerable to the power imbalance in sharing physical spaces with peers uncomfortable with autistic behaviour such as stimming (Ochs). The use of online media arguably contributes to mitigation of this condition, as the physical body and its behaviour can be removed from the online subject to whatever extent the individual prefers.
Joint attention is the act of sharing the focus of attention with others to a common point of reference, by
either directing or following. Response to direction requires attentional orientation and visual engagement with the target of another person’s gaze, both aspects of ASD-specific impairments (Vivanti et al). Discomfort with eye contact has become one of the most common cultural tropes of autism (Elder Robison), while treatment seeks to increase the regularity of joint attention behaviour as much as possible (Whalen and Schriebman). Autism Speaks has endorsed tablet apps that target eye contact, although a 2015 study noted that no known research has assessed such apps’ efficacy and found it ineffective compared to differential reinforcement sessions (Jeffries et al).
Digital Interventionism
The introduction of Apple’s iPad in 2010 kickstarted a multitude of studies on its communicative potential for autistic individuals, particularly in facilitating speech (Lamarca) and on the benefits of the eventual data-gathering on autistic children for further research (Sweeney). A column for the Thinking Autism Guide from 2010 proclaimed the iPad a “near-miracle” for autistic children (Des Roches Rosa & Rummel Hudson). Several models attempt to explain atypical eye contact in ASD, including hyperarousal (the amygdala struggling to prioritise social information in the environment) and mindblindness (which suggests individuals with ASD are born without an innate module that promotes sharing attentional states with others). Autistic individuals have described the sensation of eye contact with language related to anxiety, threat, violation, sensory overload, energy exertion and confusion (Trevisan et al). Singer has noted the internet’s potential to “liberate” autistic people from intricate conversational turn-taking, body language and eye contact (Singer).
Inspired by the success of the iPad in assisting treatment, further studies have focused on the use of other emerging technologies in autism assessment and treatment, including augmented reality (Syahputra et al) and in particular Google Glass (Sahin et al) as well as computerised analysis of facial expression (Keiho et al). Despite it’s title, the Glass app Empower Me’s website includes some statements that contradict the neurodiversity community’s stance on behaviour control - stimming is dismissed as providing only “short-term comfort”, while the app hopes to substitute “covert” stimming behaviours when desired. Furthermore, the app is proudly gamified, even including a point system for eye contact, which is then added to a realtime data stream for analysis (pictured below). Big Data is presented by the platform as one of its most significant virtues, stating “our aim is to uncover data-driven subtypes of autism, and to customise the experience for each unique child and adult. By being part of the Brain Power family, you are also part of perhaps the world’s biggest humanitarian study of autism and related conditions” (Brain Power). Perhaps tellingly, none of the testimonials provided by the website are by autistic individuals, instead presenting the perspectives of parents, a special needs teacher and an ABA therapist. 3
The still-developing app Molehill Mountain (promoted by the charity Autistica and scheduled for a July 2018 release) proposes an alternative approach that prioritises the input of autistic people. The app, designed to alleviate anxiety symptoms, was the result of a ‘hackathon’ of 150 autistic people, including designers and developers. The app’s website also makes note of surveying autistic users for feedback. Molehill Mountain is an adaptation of a paper-based anxiety tool developed by King’s College London . As the app has not been 4 released, further details are unavailable. Consequently, the merits and drawbacks of its attempt to bridge the gap between autistic needs and the functions of medical-model influenced apps remains to be seen.
http://www.brain-power.com/autism/ 3
https://www.autistica.org.uk/our-research/research-projects/anxiety-app-for-autistic-young-people 4
As the internet gained societal prominence, association with autistic identity continued, often by comparison to the significance of the typewriter and phone for the deaf and blind communities. In other (perhaps overly utopian and certainly of-its-time) words, “for many autistics the Internet is Braille” (Blume). In another analysis, Hacking argues that the internet’s juggling of the social and solitary result in a level playing-field between the autistic and neurotypical worlds. Neurodivergents use online communication tools to express themselves more like neurotypicals, who are in turn denied the ability to use the full range of emotional and intellectual expression the autistic may struggle with (Hacking 2010 653). However, as Ellis and Kent note, this is not to be mistaken for a replacement for offline progress: “if people with disability in this sense become invisible in virtual worlds, this could have implications for the visibility of people with disability in broader society” (Ellis 123).
Online tools have been thought to offer a corrective to what Hans Asperger described as a “failure of community”. Other early researchers described the relationship between technology and ASD explicit to the point of corporeality. An example is Bruno Bettelheim’s controversial description of young boys on the spectrum as lacking humanity, a condition exacerbated by a society “of mechanised plenty” that leaves the autistic mind abstruse and unknowable. Though Bettelheim’s conception of the autistic mind has since been heavily criticised, Pinchevski and Peters note that the implicit dichotomy between technical and social skills remained in the popular consciousness. This trope “not only survived the changing etiology but has now become its leitmotif ” (Pinchevski 2514). This most explicitly was expressed in the metaphorical use of the disabled body and mind in cyborg studies, as a state in need of escape and transcendence. Popular awareness of the metaphor increased with high-profile ‘cyborg hoaxes’, where disability identity is exploited to make naked emotional appeals to “the protective impulses of those they deceive, offering feminine perfection juxtaposed with the stigmas of disability or illness” (Ellcessor 1769). Such hoaxes propose that to be disabled is to cry out for help and pity.
Proposed treatment for ASD commonly appropriates forms of digital media, usually accompanied with the argument that autistic individuals are uniquely suited to such treatments, “an extension of [their] individual psyche and mode of communication and expression […] They illustrate how Wittel’s concept of ‘network sociality’ can transcend between physical and online spaces, calling upon us to rethink and reconceptualise notions of sociality with the inclusion of technology as an integral part of communication and life” (Ng). The use of video games as a form of training is particularly common, with games designed to improve social interaction (Stone et al), posture and balance (Travers et al) and loneliness, although there is no found link between friendship quality and regular online gaming (Sundberg).
Autism-related tablet apps have since become a cottage industry unto itself - Autism Speaks curates a list of over 700 apps on its website, with “research ratings” to denote relevant studies: Anecdotal (no specific or 5
At the time of this writing. Autism Apps | Autism Speaks. https://www.autismspeaks.org/autism-apps. 5
related research), Research (some related research but not direct studies) and Evidence (solid or specific evidence that the app has proven to be helpful). Almost all of these apps are targeted towards children, and appear to be significantly influenced by the principles of Applied Behaviour Analysis. For example, EASe Personal Listening Therapy (rated 6 “Anecdotal”) delivers short bursts of intense sound to acclimatise children to noisy surroundings.
Applied Behavioural Analysis (ABA) is a
psychological discipline that encourages the alteration or removal of socially significant behaviour. In contrast to earlier treatments, ABA begins through functional analysis, assessing the relationship between a targeted behaviour and the environment. ABA became a landmark alternative to institutionalisation after the 1987 publication of Ivar Lovaas’ "Behavioral Treatment and Normal Educational and Intellectual Functioning in Young Autistic Children”, where typically autistic external behaviour is ameliorated through constant drills, in some cases up to 40 hours a week.
It is, in other words, “extreme” work - one that demands a large level of investment and effort from autistic people to alter their behaviour. A paper published in 2015 (Granter et al) wrote on the tendency for modern workplaces to take on the tenor of “extreme” work no matter how routine or banal said work actually is - long hours, intimidating superiors, the anxiety sourced from knowing work is scarce, desirable and unpleasant. Granter and McCann speculate on the possible causal relationships between increasingly high-pressure mid-level work with the rise in popularity in “extreme”, “hypermediated” entertainment. “Extreme” as a
https://itunes.apple.com/us/app/ease-personal-listening-therapy/id472591104?mt=8 6
trope, they argue, is the inevitable result of a society modelled under Beck’s conception of a risk society that is also addicted to the acceleration of its own increasing pace (Noys). In its modern guise, ABA therapy is encouraged to consider the needs of patients in a psychocentric framework to better accommodate the needs of autistic people (Gruson-Wood).
(Pictured: https://twitter.com/RyanHendry94/status/1005113196942909441)
ABA is a controversial topic in the community, with autistic bloggers and activists describing the treatment’s erasure of autistic behaviour as dehumanising and cruel (Devita-Raeburn). Autism blogs regularly critique ABA and Lovaas in particular, as his clinic regularly used physical threats and electrical shocks to discourage stimming, a behaviour he described as monstrous (Chance). These criticisms - which include open letters , vivid and 7 harrowing depictions of violence , and zealous 8 critique of the field’s lionisation of Lovaas (pictured) - made enough of an impact to 9 reach mainstream news websites including the Atlantic and The Guardian. The latter article,
published in 2015, notes the use of Augmentative and Alternative Communication (AAC) devices by nonverbal autistic people as a possible alternative to behaviour-altering treatment, though it concedes that scientific studies of these treatments are not yet at the stage of medical validation enjoyed by ABA, whose status as a “one-size-fits-all” treatment is now being questioned (Parker).
That said, although the field has long moved on from Lovaas’ violent techniques, he remains a sticking point between the neurodiversity community and neurotypical professionals and parents. Some autism researchers in the modern-day continue to advocate for Lovaas-style treatment. The etiology scholar Laura Ellen Schreibman’s The Science and Fiction of Autism from 2006, for example, is otherwise well-written and useful as a resource, but blithely dismisses most other treatments, does not acknowledge the perspective of any autistic individual (other than to repeatedly claim that 75% of autistic children are gravely retarded) and includes an uneasy section where the writer wistfully imagines a scenario where she shocks one of her actual patients into
https://www.autistichoya.com/2017/12/boycotttosiri-letter-to-judith-newman.html 7 http://web.archive.org/web/20160404044726/http://autisticadvocacy.org/2014/11/jrc-survivor-speaks-out-part-1/ 8 https://twitter.com/slooterman/status/1004368134835458048 9
submission (Schreibman). Such debates are reoccurring now in social media discussions on the condition, particularly in ableist hate-speech (Burch).
Social accommodation for autistic individuals note that multi-sensory engagement is a useful resource. A study of insights from the autistic community for higher education found advocation for “escape rooms” with low lighting, noise and/or strong smells, and the option of noise-cancelling headphones (Sarrett). Other proposals for innovative education regularly cite the importance of visuals and multimedia presentation. In one case, a proposed framework was called the “Visual Hybrid Development Learning System (VHDLS)”, intended to influence educational software developers to consider “an instructional design model, multimedia cognitive learning theory, and learning style”, arguing that autistic children are more likely to focus on specific tasks with hybrid visual models “because it provided them with affective pictures (representational) and stimulating effect (decorative) which balances their atypical sensory reaction and thus increases their attention” (Banire et al).
Typically, the predictability of computer technology is the most apparent rationale for their appeals to the autistic, although Katharina Spiel has noted that the majority of available technologies are diagnostic or treatment-based, leaving an “implicit assumption is that there is an increase in quality of life for autistic individuals if they function in a more neurotypical way and technologies are designed towards this goal” (Spiel). As a corrective, it is argued that an appropriate model to study autistic software is a variation on the framework by McCarthy and Wright, where experience spans across four threads: sensual, emotional, compositional and spacio-temporal (McCarthy and Wright); all aspects of lived experience that are commonly affected by ASD.
Ultimately, ABA-assisted applications are a problematic presence in the formation of autistic identity. Although the apps are a good example of the influence of increased market share, fidelity to the medical model and desire to change the behaviour of autistic individuals does not suggest an investment in the formation of highly individualised identity. However, it does suggest the possible validity of one of Callon’s concerns - that the market sphere seeks to exclude those who do not adjust by further entrenching a normative framework, made most explicit in Empower Me’s point system, wherein autistic people are rewarded for acting less autistic.
Conclusion
Michael Callon’s agencements were formulated to enrich understanding of the diversity of individual agency and to mitigate the limited actions applicable to individual humans. Callon’s argument, that the network economy mobilises the transcendent action of homo economicus to a potentially limitless scale, is seen in the
cottage industry of autism-centred online treatments. Essentially, online tools propose the generation of individual agency through interactivity, placing the autistic user in situations where they are required “to be reactive, to use initiative, to be imaginative, and constantly to boost the action in order to test new possibilities and take observable results into account. The creation of connections makes it possible to mobilise, at the same place, the different instruments, equipment, data, and information constituting and multiplying the individual’s cognitive capacities” (Callon).
In practice the scale of development has been double-edged for the neurodiversity community - the influence of controversial treatments such as ABA, funding from large corporations and medical-model charities and a lack of consultation from autistic advocates are regular sticking points. In the case of Brain Power, its stated goals (the elimination of stimming behaviour) and techniques (mass-scale collection of data on autistic people, the gamification of acting ‘normal’) stand in clear opposition to the arguments of the #ActuallyAutistic.
Callon’s text asks if the enmeshing of the market sphere and individualisation (which he describes as an
agencement) creates a context within which the market actively excludes those who cannot adjust to the altered
and newly-consolidated normative frame. The following sections propose that the online autistic community are operationalising the agencement concept within new media platforms to develop an enlightened normative framework of autism which directly contradicts medical-model research. In other words, if Callon is correct that markets will inevitably push out groups who cannot conform, then the autistic community are an example of a group utilising the twin-trends of increased autonomy and online networks that serve as hubs of economic activity to critique and transcend its own cultural cache.
However, it is also apparent that the internet provides a significant avenue for individual agency. Early treatments and assessments classified autism as a ‘failure of community’ - no doubt further complicated by lack of resources and ready accessibility to other autistic voices. The #ActuallyAutistic community - its blogs, forums and community hashtags - encourage agency through the consolidation of online social performance and self-directed, empowering exercises.
For the newly-diagnosed or curious, the social prosthesis afforded by the web - especially when taken to its extremes by Silicon Valley - affords agency through sheer volume. In itself, the choice to join a community hashtag, subreddit, forum, blogging or social media platform is the practice of agencement tailored to the specific needs and tastes of the individual.
The next chapter will study the second stage of agencement, a break from accommodating the drawbacks of autistic impairment to a habilitated identity that shifts the burden of reducing maladjustment away from the afflicted and towards societal expectations.
Amplified Recognition
Habilitated Agencement
People on the autism spectrum have a unique social network, this is primarily using communication with text on the
internet. It is an invaluable community for many of us. There should be increased availability and recognition for this
autism community online so that isolated members of the autism community can join and participate.
Amy Nelson, “Declaration From The Autism Community That They Sre [sic] A Minority Group,
2004
Minty Fresh Memes a.k.a. “Tumblr’s resident dickhead”, 2018. https://boogaloojones.tumblr.com/post/170468852944
Introduction
This chapter will cover the use of new media by autistic communities to renegotiate the normative framework surrounding autistic identity. Taking influence from Michael Callon’s notion of agencements, this section argues that the internet’s stereotype as being particularly suited to autistic tastes is actively being subverted by autistic political actors with intimate knowledge of media frameworks. The culture illustrated, though obscure and niche by design, has potential to have some influence on upcoming cultural agenda.
Autistic Culture
The majority of studies on autism are conducted with the outlook of improving treatment, and rarely consider the notion of an ‘autistic culture’, leaving the term nebulous and difficult to define. In some cases, the question of culture is only considered as the environment the autistic individual is embedded into, where cultural deviation is defined by shifts from parental attitudes (Ennis-Cole et al). Considerations of the autonomous autism culture usually base arguments within a cybernetic frame, where the autistic actor formulates and passes on world views to other social groups primarily through the circular feedback loop of the internet. Memoirs by autistic writers describe childhood play culture and friendship difficulties, but also the pursuit of enjoyment and potential friends through stigmatising behaviours such as stimming or discussing their specific interests (Conn). Assessing the intersections of culture and autism in greater depth is outside the scope of this thesis, but a brief outline of research on online autism culture will provide important context for the study.
Within disability studies, online autistic culture has been assessed as the result of shared experiential background, clustered around axes of identity. Subgroups form around specific disabilities but also shared philosophies. The “Mad Pride” movement formed around critique of the psychiatry profession’s treatment of disabled people, in particular “biomedical assignments of impairment […] This comes not in the form of a general pronouncement of inferiority, but in a direct and specific diagnosis and treatment process” (Lewis). Its antecedents in the United States - with names like the Insane Liberation Front - acted as singular communities who wished to change society with the aid of lectures and publications, not unlike the acid visionaries of the 60s (Chamberlin). In recent years, Pearson and Trevisan have noted that disability activism in the UK has become increasingly influenced by the new media ecology as austerity increases (Pearson et al), while in the US the rapidly growing number of disabled individuals enrolling in higher level education has coincided with a growth in disability activism and resources in colleges (Kimball et al).
In his introduction to the field of disability studies, Lennard J. Davis problematises the notion of the “norm”. In his analysis, he argues that the idea of “normality” is the inevitable result of intersecting historical phenomena. Ancient society’s romantification of the ideal coalesced with the neo-conservative interpretation
of the Gaussian bell curve - which argues that poverty and intelligence are linked through inherited characteristics - and the eugenicist theories of Sir Francis Galton. Davis’ central argument operates under three observations: first, that the categorisation of a possible “ideal” body necessitates the application of a diametric equal (the ‘deviant’); in turn this creates stricter templates regarding what exactly the ‘normal’ body is; and finally, that the statistical notion of the ‘ideal’ marks a significant departure from the classical conception, which was not powered by rank and did not depend upon an imperative placed upon the norm (Davis 5).
Later in the same text, Davis expands on the repercussions for the disabled as an identity group, arguing that postmodern debates on the construction of disability is necessary for future civil rights battles. In particular, the notion of a disabled ‘identity’ is one that needs to be further examined in order to bolster activism, as the civil rights debates surrounding disability deviate from the intellectual tradition of other marginalised groups based on sexuality, gender, class and race (Davis 2013a). Davis is not the only thinker to make this comparison. Anastasiou and Kauffman note the role of pathology in justifying abuse against African-American slaves (drapetomania - supposedly a mental condition that makes slaves run away from their masters) and homosexuality (notoriously once considered a psychiatric disorder that merited treatment, aversion and punishment), although they remain skeptical that a social constructionist approach to disability is entirely justified (Anastasiou et al 444).
Participatory culture and identity expression
A 2013 study into media use by adolescents on the spectrum found that in a group of 91, 98% used computers, particularly for engagement in video game and animation culture. The study also found that young neurodivergents “who visited websites for establishing or maintaining relationships reported more positive overall friendships than those who did not” (Kuo et al 921) although it should be noted that this study was self-admittedly limited in scope by being based in the United States and employing self-reportage. Nonetheless, it shows that new media platforms can serve a role in neurodivergents’ lives that previously was not available to them.
Participation and engagement with media manifests not just in consumption and community formation but also the cultivation of identity and autonomy in public disclosure of identity. Drawing upon work by Erving Goffman on impression management and stigma, research on intersectional disclosure on social media has not focused on disability as much as other minority and civil rights issues. In the case of neurodivergents, a common difficulty with social skills can further problematise the question of disclosing their condition online, especially since the rigid, categorical nature of social media profiles can undermine such attempts. A 2016 study into disability disclosure on social media suggests that, while the positive effects on public understanding from the non-disabled are negligible, new media has nonetheless allowed for a sharp evolution
in disability culture in a manner that aligns with Petronio’s idea of the culture privacy characteristic. Though the study was focused on physical disability, it is nonetheless notable that these groups “reveal how social media includes and provides support for those people with disabilities who lost faith in the possibility of fully revealing themselves and having deep social connections”.
Political engagement in the neurodiversity movement is understudied, and even well-intentioned studies can fall victim to essentialist discourses based on medical and social constructions of neurodivergent characteristics or behaviour. A study on the community’s reactions to the DSM-V altering the definition of Aspergers Syndrome attempted to lessen such a burden on its research by not providing statistical data that demonstrates a predominance of any argument, on the grounds that such data would be unreliable. This is further problematised by the issue of so-called ‘self-diagnosis’, whereby “the seductive image of the ‘aspie’ … attracts young people who see it as a convincing explanation for their own difficulties in socialising and – as is the case in other mental health online communities – regard their membership of the community as a step towards obtaining an ‘official’ diagnosis” (Giles 2014 183). Indeed, ambivalence towards the medical profession is common in mental health communities, however this mistrust does not then lead to dismissive attitudes towards the role of diagnosis, which is still considered a key part of becoming a member of the community (Giles 2011).
The most significant progression is the move towards self-advocacy. This is a reaction against the public understanding of ASD which is largely shaped by academics, clinicians and parents rather than the individuals themselves. Gilles argues that the internet and
its accompanying media has played a key role, stating “the Internet has handed those individuals a powerful voice… It may be that such communities come to assume centre stage in future debate over diagnostic categories” (Giles 2014 192). This is particularly the case for nonverbal individuals who can appropriate the tools of new media to express themselves and lessen the preponderance of so-called “low-functioning” autistic people being used as a rhetorical device, Mel Blaggs’ use of YouTube and blogging being the most notable example.
Tobin Siebers, influenced by feminist thought on situational knowledge, has described the challenges faced by disability studies as a need to develop a theory of complex embodiment that acknowledges the realism of bodies to a larger degree than the social construction model (Siebers 5). Especially in individuals who appear high-functioning, research into autistic identity has been held back by the lack of apparent physical differences or underlying cause, thus leaving the facticity of autism in a seemingly perpetual transitional state. Some social model researchers in response have argued that autistic presence (Murray 2008) is primarily a social construction, and therefore the act of diagnosis and treatment is addressing a cultural product rather than a physical condition, liable to vary in intensification depending on the individuals and culture involved. The definition of an autistic identity or body can vary by country, societal attitude and the personal experience of the patient. Molloy and Vasil note that autistic individuals who were ‘involuntarily’ diagnosed 10 as children typically have vastly different experiences from those who were diagnosed later in life or who had taken a proactive role in their treatment, as the memory of diagnosis will become a key part of their childhood memories (Molloy and Vasil).
The interaction between complex bodies and the socialising effects of diagnosis leaves autistic identity relatively malleable, described by Davis as an “unstable” category that can only complicate existing debates on identity politics (Davis 2013b). This is especially the case on social media, where competing conceptions of complex embodiment can collide: a study found that posts by autism advocacy groups on social media reach larger audiences from the use of emotional language and audiovisual content, and it concedes that this is a condition easily exploitable by distributors of misinformation (Bail). The instability of autistic identity and the growth of autism activism has contributed neurodivergent perspectives to matters of public policy (Orsini), gender studies (Bumiller) and cyberactivism (Parsloe and Holton). Critique of autism activism address the discrepancy between the experiences of high and low-functioning individuals and in some cases question their idealism, as in the trifling but amusing case of a writer to New Scientist who reasonably acknowledged the lack of resources available to families outside of large charities, but also dismissed openly-autistic activists as wannabe “X-Men” who do not (or cannot) understand their own best interests (Arsad). Autism and the internet have been superficially connected to the point of self-parody. In 2011, a leading neuroscientist was criticised by fellow academics and activists for the unsubstantiated suggestion that the rise
No relation. 10
in autism diagnoses and internet addiction were connected , while The Guardian’s Richard Watson was 11 criticised by his own colleagues for speculating that Silicon Valley’s impropriety is explained by autism: “If internet culture is on the autism spectrum, this could explain how some companies can regard privacy as collateral damage. It may also explain how some companies constantly miss the small social cues coming from their customers. It would certainly explain how Facebook continually offends its users, and may explain how some technology companies can’t see that an open, connected and copyright-free world isn’t necessarily better for everyone” (Watson). 12
Writers and thinkers on ASD have often suggested that the Internet is an appropriate fit for the autistic mindset, as it allows for flexibility in social responses, a predictable environment where sensory input can be modulated and adapted to specific needs, down to brightness, accessibility and colour preferences (Masataka). The internet also serves as a potential escape from the “masking” common among adults with autism, where social camouflage and compensation techniques are used to hide immediately apparent signs of autism in order to more easily fit in and make connections with others. A 2017 study found that social camouflaging is typically an exhausting experience that poses a threat to self-perception (Hull et al). Put another way, the internet has proven itself to be the most popular tool used by individuals on the spectrum to renegotiate their identity and make significant contributions to the idea of an “autistic-friendly” world.
Online autistic activism is most prominent on blogging platforms, with a notable degree of loyalty to the catalysing platform. For example, despite the decreasing influence of Blogspot and Wordpress for hobbyist bloggers in recent years (in favour of microblogging platforms, Tumblr and Medium), several influential activists such as Lydia Brown and Mel Baggs have consistently used their original accounts. That said, Medium is a prominent host of neurodiversity content , while Tumblr is notable for its collection of 13 humorous memes and stories on the autistic experience. Tumblr is also a popular host for content that satirises medical-model charities like Autism Speaks. Allism Shouts and Field Notes on Allistics present inverted 14 15
caricatures of the charity’s various controversies, written from the perspective of a “normal” autistic commenting on the unusual behaviour of non-autistic people. Visual character naturally deviates across users, but is noticeably bright, colourful and cartoonish. Images are captioned with detailed descriptions for those with sight difficulties or confusion over the image’s purpose.
# https://www.theguardian.com/society/2011/aug/06/research-autism-internet-susan-greenfield 11
Instead of citing an autism researcher, neuroscientist or anyone involved in Silicon Valley or on the spectrum, 12
Watson’s primary source for his analysis was a quip from the satirical novelist Douglas Coupland. https://medium.com/tag/autism/archive/2018 13 http://allism-speaks.tumblr.com/ 14 https://fieldnotesonallistics.tumblr.com/ 15
