Sensory ethnography is an approach towards sensory research in new media developed by the cultural anthropologist Sarah Pink, who argued that the field challenges existing representational and cultural axioms surrounding sensory studies. Meryl Alper argues that in light of recent ethnographic research on how senses affect the experience 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, sometimes as a self-directed act of adaptation towards unpleasant experiences.
Paterson described touch as being not just a singular mode of perception but an “ensemble” of affective, kinaesthetic and somatic ways of knowing. 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”. This is further complicated by difficulties in unusual sensory capabilities (identified by Dunn as: low sensory registration, sensory seeking, sensory sensitive, and sensory avoiding) as well as the cultural and social shaping of sensory dysregulation as in the active discouragement and punishment towards behaviours common among the autistic population.
Affordances are the characteristics of an environment, tangible or otherwise, that set the terms of engagement by which a user can interact with their surroundings. Rather than a rigid rulebook defined by limitations, the role of an affordance is constituted 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 as haptic media (such as touch-screens) achieved greater prominence.
Goggin and Newell have noted that “new media technologies have become central to and formative of disability communities” while also lamenting that the same technologies are prone to “new forms of exclusion” 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”.
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”.
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 ludonarrative-based exercises. A study into one such app from the medical perspective 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”. The ultimate goal of such treatment was presented thusly: “beyond acquiring always more knowledge, it is crucial to be able to inhibit reactions that get in the way of learning something new”. Treatment that seeks to ameliorate, if not outright remove, part-and parcel aspects of autistic behaviour is a frequent target of critique within the neurodivergent space.
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. The use of online media arguably contributes to mitigation of this condition, as the physical body and its behaviour can be removed from the contributions of the online subject to whatever extent the individual prefers.
Autism-related tablet apps have 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 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 “Anecdotal”) delivers short bursts of intense sound to acclimatise children to noisy surroundings.
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 rewards 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. Singer has noted the internet’s potential to “liberate” autistic people from intricate conversational turn-taking, body language and eye contact.
Inspired by the success of the tablet in assisting treatment, further studies have focused on the use of other emerging technologies, including augmented reality (Syahputra et al), Google Glass as well as computerised analysis of facial expression. Despite it’s title, the Glass app Empower Me’s website includes some statements that contradict common neurodiversity arguments 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). Harnessing the algorithmic power of Big Data is presented by the platform as a significant virtue, stating that their goal “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”. 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.
The still-developing app Molehill Mountain (promoted by the charity Autistica and released shortly after the completion of this text in June 2018) proposes an alternative approach that prioritises the input of autistic people. Molehill Mountain is an adaptation of a paper-based anxiety tool developed by King’s College London. 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. As the app has only been recently released, further analysis is forthcoming. 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.
Proposed treatment for autism 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”. The use of video games as a form of training is particularly common, with games designed to improve social interaction, posture and loneliness, although there is no explicit link between friendship quality and regular online gaming as compared to other hobbies.
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”. 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. However, as Ellis and Kent note: “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”.
Online tools have been thought to offer a corrective to what Hans Asperger originally described as a “failure of community”. Other early researchers made the link between technology and autism particularly explicit. An example is Bruno Bettelheim’s controversial description of young boys on the spectrum as lacking humanity, a condition exacerbated by the newly industrial societal structure – a society “of mechanised plenty” – that leaves the autistic mind ever more abstruse. However much Bettelheim’s idea has been criticised since, 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”. This most explicitly was expressed in the metaphorical use of the disabled body and mind in cyborg studies, a state of constant need to escape and achieve transcendence. Popular awareness of the metaphor increased with high-profile ‘cyborg hoaxes’, where disabled identity is exploited in making emotional appeals to “the protective impulses of those they deceive, offering feminine perfection juxtaposed with the stigmas of disability or illness”.
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 was 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 and usually against their own will. A paper published in 2015 wrote on the normalisation within modern workplaces to take on aspects of “extreme” work no matter how routine or banal said work actually is: long hours, intimidating superiors, and the anxiety 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 risiing popularity in “extreme”, “hypermediated” entertainment. “Extreme” as a trope, they argue, is the inevitable result of a society modelled under Ulrich Beck’s conception of a risk society that has become addicted to the acceleration of its own increasing pace. In recent years, ABA therapy is encouraged to consider the needs of patients in a psychocentric framework to better accommodate the needs of autistic people.
ABA is a controversial topic in autistic space, with bloggers and activists describing the treatment’s erasure of autistic behaviour as dehumanising and cruel. 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. These criticisms — which include open letters, vivid and harrowing depictions of violence, and critique of the field’s lionisation of Lovaas — made enough of an impact to reach mainstream news publications 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, which has benefited from a “one-size-fits-all” reputation.
That said, although the field has ostensibly moved on from Lovaas’ violent techniques, they remain a sticking point between the neurodiversity paradigm 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, was useful as a resource for general knowledge in the early stages of my research, but the book itself is a startling example of catastrophism over the autistic condition. Schreibman blithely dismisses most other treatments, does not acknowledge the perspective of any autistic individual and repeatedly claims that 75% of autistic children are gravely retarded. Disturbingly, she also writes a passage where she presents a patient from her past, who struggled with physical behaviour to the point of risking harm to herself and others. Schreibman then writes a what-if ending where she gave electric shocks to the patient, and writes regretfully that the hospital’s rules prevented her from doing so. Such attitudes are reoccurring now in social media discussions on the condition, particularly in ableist hate-speech.
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 [that] there is an increase in quality of life for autistic individuals if they function in a more neurotypical way”. 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; all aspects of lived experience that are commonly affected by autism.
Michel Callon’s agencements were formulated to enrich understanding of the diversity of individual agency and to mitigate the limited actions applicable to certain sets and subsets of people. Callon’s argument, that the network economy mobilises the transcendent action of homo economicus to a potentially limitless scale, is seen in the industry of online autism 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”.
In practice the scale of development has been double-edged for the neurodivergent space: 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 challenges conventional wisdom. In other words, if Callon is correct that markets inevitably alienate those who cannot conform, then the autistic community are an example of a group utilising the twin-trends of increased autonomy and online networks to critique and transcend its own cultural cache.
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 section 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 maladjustment away from the afflicted and towards societal expectations.
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This series is adapted from my Masters thesis in New Media and Digital Culture for the University of Amsterdam, edited for narrative consolidation and fixing pesky mistakes I made along the way. The thesis was written with the supervision of Dr. Marc Tuters and assessed by Dr. Richard Rogers. The thesis was completed in June of 2018, just over a year before the writing of this introduction; naturally, some of the items covered have developed in significant ways since and I plan to cover these in later posts, along with relevant media/perspectives I overlooked, underanalysed or misunderstood during writing.
My research is about the autistic community’s presence on digital media, its practical and civic effects, and the reactionary subcultures that critique its worldview. 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. The first chapter will be published tomorrow (8 July), and the following three chapters will be published early on the following Mondays, followed by a piece reflecting on the subject a year on from the thesis’ completion.
Autism is a developmental disorder that risks reductive definitions from even the most skilled insight. There is no such thing as a ‘typical’ autistic person, and the condition’s associated behaviours are as heterogenous as any other group. Consensus is hard to come by in the field, with the possible exception of diagnostic criteria: difficulty with speech, language, body co-ordination, and social interaction are common. Just as significant and less understood is atypical sensitivity exhibited in 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”: Think of Hollywood films that depict harrowing devastation, virtual-reality video games that unintentionally induce nausea, meticulously designed noise that still functions as NOISE, and so on. In autism studies sensory overload is not so much a metaphor as a significant part of one’s life. At its core it is easy to explain: Imagine a television, then multiply it’s maximum volume and visual saturation levels to a level deemed appropriately unbearable. With different ways of processing such input the autistic will struggle all the more with the results if the channel playing is one of the handful of thousands available that they find personally aggravating, or they may tolerate or even enjoy the experience if there’s something within the blast that they find interesting or comforting. One man’s trash and so on; the only way to tell what an autistic person will or will not struggle with sense-wise with any certainty is you ask them, and it’s no guarantee that others will react the same way.
The action of finding comfort in repetitive, sometimes unusual sources like ostentatious sound or visuals is one of a series of behaviours known as stimming (self-stimulating behaviour), active behaviour to regulate sensory input and aid concentration through repetitive tasks. Common physical examples include rocking, playing (or ‘fidgeting’) with a toy, and flapping hands. The majority of stimming behaviours are harmless and not necessarily related to sensory difficulties, 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 tendency is the little boy who loves and collects information on 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.
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 the pathology of autism, 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 reliance on neurotypical allies.
“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” .
The neurodivergent and cutting-edge 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”.
As but two examples of autism’s relevance to media studies, the prevalence of sensory regulation highlights interesting implications for the application of affordance theory in communicative tools as well as the ramifications and positive effects of rapid hypermediation. Meanwhile, autistic “deficits” such as echolalia, local coherence and dysprosody are re-conceptualised through popular facets of intermediation like memes, message boards and increasingly picayune and specialised YouTube videos.
The internet has also served as a productive catalyst for inter-community debate, an ostensibly 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.
Online community formation has in turn produced micro-celebrities to go with them. These include: Alex Plank, founder of the autism forum Wrong Planet who also works as an actor and consultant for autism-themed television; 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 Baggs, a nonverbal blogger best known for their 2007 YouTube video In My Language.
There is also a subset of people under the neurodivergent banner who disapprove of the approach, such as Jonathan Mitchell (who blogs under the name Autism Gadfly), a prominent 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 (see part 3).
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 autistic figures contributing at the forefront. What this text 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 the popular perception of the autistic spectrum with a desire to radically reshape how neurodivergence is conceptualised.
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 recent 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 takedown of another’s intellect. The rapid spread of autism misinformation in the wake of violent attacks and disease outbreaks is another example of the fake news machine that is of particular interest while the rate of digital-native scandal continues to rise.
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 or impose unto the reader a ‘correct’ interpretation.
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. Some arguments will be presented with redacted identification to protect privacy. Any resultant mischaracterisation and mistake is entirely my own and I will be happy to amend anything within reason.
The cover image, one of a series of paintings on mental health, was used with the permission of the original artist Haydn Gardner. Visit https://messymiscreation.com/ for more of his work.