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.
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”. 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 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.
A quick note on research approaches
“So, I feel like I should clarify, the “autism is a neoliberal conspiracy” argument isn’t as ridiculous as it sounds, it just-” http://myautisticpov.com/post/159223907902/so-i-feel-like-i-should-clarify-the-autism-is-a
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.
Blume, Harvey. “Neurodiversity.” The Atlantic, Sept. 1998. The Atlantic, https://www.theatlantic.com/magazine/archive/1998/09/ neurodiversity/305909/.
Garland-Thomson Rosmarie. (1997) Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. New York, NY: Columbia University Press
Oliver, Mike. “The Social Model of Disability: Thirty Years On.” Disability & Society, vol. 28, no. 7, Oct. 2013, pp. 1024–26
silentmiaow. In My Language. YouTube, https://www.youtube.com/watch?v=JnylM1hI2jc.
Silberman, Steve. “How Autistic People Helped Shape the Modern World.” WIRED, https://www.wired.com/2015/08/neurotribes- with-steve-silberman/.
Singer, J (1999) Why can’t you be normal for once in your life? In: Cocker, M, French, S (eds) Disability Discourse. Buckingham: Open University Press, pp. 59–67.