Last month, I was alerted by Google that a year had passed since I cycled for over an hour in the Dutch heatwave to deliver the thesis that I had spent the previous 10 months working towards. I felt weird about it then and still do now – yes, it was a relief to finally get the exhausting amount of work off my back, but the process kicked a ball down a hill that refused to stop moving even past the deadline. Certain sentences haunted me, arguments I had underdeveloped, inconsistencies in terminology, large glaring gaps in logic that screamed “DAVID DID A LAZY”. Yes, I successfully managed to write an entire thesis on autism in the media without mentioning Rain Man once, but those sentences with passive voice? oof.
Forgive the tooting of horns, but I did pretty well, all told. I graduated with a very good grade and got a job the week after I finished the course. I’ve been very fortunate, not just to successfully start the next stage of my life but to move into a field where I could spare myself having to think about autism day in, day out. The research I undertook showed parts of humanity that at times genuinely disturbed me, and I didn’t know how to express that to family, my closest friends or even to myself. By contrast, my job at the minute usually requires proofreading press releases about construction equipment – the most worrying thing I typically have to deal with on a regular day is listening to a bunch of Brits talk about football: a circle of hell for sure, but a mercifully light one compared to what came before. It’s hard to imagine a situation further from the postmodern academic wormhole of neurodivergent chaos I enmeshed myself in for months on end.
But… I kept thinking about it. Or rather, the neurodiversity paradigm continued to truck along, and I had acclimated my sensitivities to the ongoing developments of what I had covered. The Autistic Dark Web continued to be a thorn in the sides of autistic-led Twitter, wearing its reactionary influences far more clearly on its sleeve. The British driving authority proposed that autistic drivers must declare their diagnosis for risk of a fine before backtracking. Measles outbreaks continue to crop up as a result of anti-vaccination scaremongering. The so-called “Gender Critical” use autism as the flimsiest of excuses to justify their transphobia (when they’re not using it to demonise neurodivergents). Cultural representation of autistic characters remains pitifully overwrought. The systematic abuse of autistic people in care homes remains a serious issue while posts such as this that advocate cruelty against the autistic reach the upper levels of Reddit karma-farming every other day.
I also encountered stuff that was a little more positive, if still acknowledging the difficulties. A classmate sent me this interesting piece on autism’s place in cultural theory that I think about often. Katherine May articulated many of the frustrations I had felt, only much more well written and vital. I had the pleasure of meeting Steve Silberman in Sheffield – NeuroTribes was the book that kickstarted my original idea, and getting it signed by the man himself seemed a nice capper. Public figures like Greta Thunberg and Chris Packham refuse to shy away from their autism as they indefatigably try to mitigate wrongs against the environment.
I initially wanted to go into these particular episodes in greater depth – both as a mea culpa outlining where I had failed when writing the original thesis, and as a purging of sorts, an exercise to get the rapid turning of the autism gear in my brain to subside ever so slightly. In the act of writing this, though, I’m not sure I entirely feel up to it. What can I say about these issues that hasn’t been better articulated by those who’ve dedicated so much more of themselves to the cause than I ever have, ever could? How could I depend on the resources afforded to me by the university that I have now been locked out of? It’s nice that my student card doesn’t expire for another 4 four years of cheap bus tickets, but I’d trade that for some access to scientific studies, please.
There’s also that ever-lingering elephant in the room. Sensory Overload was an academic exercise, at times an incredibly typical one (I cite Foucault, for fuck’s sake). Therefore, outside of some sneaked-in gags and admissions of personal sympathies I wrote the entire thing in a dispassionate voice, the observer on the side that may have a horse in the race but won’t tell you if they are in possession of hooves. I’ve only ever ‘come out’ as on the spectrum to very few people – I could probably count them on one hand – and my experiences when I did so were rarely positive. I told one friend, who immediately suggested I was trying to make up for my inadequacies as a white man and pretend I was special. Another friend took on the information and spent a few more months hitting and gaslighting me regardless. I’m not so oblivious that I didn’t assume others would surmise that there was something going on. I remember two mutual friends having a discussion on a Facebook thread over how much I reminded them of Sheldon from the Big Bang Theory. I was not tagged, but speaking of autistic people as though they are not in the room and can’t peg on to their little social obliviousness theory has been common in my experience.
All of these episodes are well over five years ago, with the toxic people in my life long cut off, but I’d be lying if I said it didn’t leave some lingering resentments.That would be petty, however, compared to a much more complicated problem. I spent five years in higher level education, with a year in between degrees working in retail. After the social nightmare of secondary school, I barrelled into college with a clear goal of fitting in and making friends, and made a 24/7 effort to do just that. I was masking, obviously – taking constant conscious notes from the people around me, using their world to inform how I participated in class, how I approached people, how I dealt with customers. I embarrassed myself a lot – a lot – but I did get the hang of it, living life in a way that for years was alien to me. When I struggled through a year abroad, an abusive friendship, a final year marred by student politics and a very serious depressive episode, they presented themselves as episodes where my coping mechanisms just stopped clicking, and it was my job, so I thought, to reformulate my mask and get on with things.
This is something that many non-autistics do not understand, as it can sound faintly ridiculous. I had work, I got along with people, I did well in class, all true. But it was EXHAUSTING, and not just in the manner associated with garden-variety introversion. I’ll spare the details, but I had burnt out from the whole thing more than once.
This does not mean I regret my experiences or that the friendships I’ve made to this date were sought out insincerely. That would be clearly bollocks. My friends are dear to me and the stuff I’ve learned while I struggled to be a human in a neurotypical world have helped me become a better person. If anything, I regret the times I’ve hurt others while I struggled with my own pain, the creative work I was putting out into the world that I knew in real-time didn’t square with my values or work ethic but I farted out anyway. Those times highlighted how unintuitive the enterprise is to people like me, how difficult it can be to articulate that without sounding adrift or self-pitying when that is not my intent. Although it was first and foremost an academic thesis, with the primary goal of getting a good grade, Sensory Overload reads to me now like an attempt for me to articulate those feelings I had long struggled to recognise, albeit through the arguments and lived experiences of others as though I were a human aggregator.
I doubt that I will dive into a project this laser-focused on autism again for a good while. I doubt I have the stamina to be as academic, to take on such weighty topics without descending into juvenile humour every few sentences. I could sit here and write a point-by-point breakdown of where I went wrong in the thesis, but it would be pointless rehashing of the arguments I made over a year ago, not to mention kind of self-cannibalizing and insulting to the prospective reader, as if they don’t understand the concept of time passing and perspectives shifting. Ableism remains a day-to-day occurrence, and I may go deeper into it, but I don’t feel any real impulse at the moment.
I have not yet decided what I’ll do next with this site. I have playlist ideas, and I’ve been juggling creative ideas around for a while without anything sticking just yet. In the last couple of years I have been very inspired by certain #extremelyonline creators who’ve seemingly founded an exciting, new avenue of self-expression, mostly on YouTube, which I know I don’t have the fortitude to even consider. Sensory Overload reads to me like I had found a voice, but an authoritative, academic one that doesn’t reflect my day to day world, the David that laughs at the sex number and has medium-to-warm takes on superheroes. Look, I’m just saying, if cinema is dead, is that such a bad thing? fun stuff, you know.
When I decided to write an ‘epilogue’ to Sensory Overload, it was intended as a consolidation, instead it reads more as a journal entry, trying to make sense of what occurred a year before when I was too tired and stoned to understand what was going on. Like the main event, I imagine I’ll look back on this piece a year from now and wish I had a better grasp of what I was going for. Or, hopefully, maybe I’ll be too busy working on the next thing to notice. Maybe by then I’ll understand enough about Foucault to know not to cite him to look smarter.
The increase in autism diagnoses coupled with the remaining ambiguity over the condition’s etiology has left the field vulnerable to misinformation, flawed and/or fraudulent studies and conspiracy theories. The most notorious of these is the theory that autism is linked to the use of the MMR vaccine. Despite current scientific research indicating a genetic link to autism, the discrediting of the original study, and Andrew Wakefield’s license being revoked, the theory persists in the public eye due to vocal parent groups, physicians and scientists along with unsubstantiated media reports and even litigation sponsored by some advocacy groups. Prominent celebrities and autism charities, including the Autism Research Institute, Defeat Autism Now!, Cure Autism Now, Autism Speaks and SafeMinds have also received criticism for taking supportive or equivocal stances towards the theory, with some suffering resignations from opposing staff members as a result (Mnookin).
It is also apparent that the vaccine theory has benefitted from the increasing scale of the world-wide web. Misinformation benefits from the ability to form social circles on any topic with accompanying selective media habits that best serve their worldview. “Selective exposure to content is the primary driver of content diffusion and generates the formation of homogeneous clusters, i.e., ‘echo chambers’. Indeed, homogeneity appears to be the primary driver for the diffusion of contents and each echo chamber has its own cascade dynamics” (Del Vacario et al). A study of online misinformation networks found that fact-checking becomes less prominent towards the core of the network, falling commensurately with increasingly dense connections between users.
Anti-vaccination support on the internet is reliant on scientific-sounding arguments and the endorsement of certified physicians and celebrities. The community is most prominent on YouTube, although it is difficult to analyse reception as some videos opt to disable likes, dislikes and comments. A content analysis of nearly 500 anti-vaccine websites found that persuasiveness was based on manipulating parents’ latitude of acceptance on theories related to an understudied condition, and on inoculation theory, which attempts to ensure loyalty by immediately discrediting the counter-position (usually with weakened or inaccurate depictions of the opposing side’s position), thus “inoculating” the audience from opposing arguments.
Anti-vaccine websites are mostly independent, though some have been given titles like National Vaccine Information Centerand National Autism Association that give the impression of being governmental or authoritative. Along with reproducing anti-vaccine claims, these websites promote other spurious treatments, including expensive supplements and so-called “magic stones”, as well as an Amazon Smile program. The movement also includes medical professionals who claim to be concerned over vaccines’ safety, including the Oregon-based paediatrician Dr. Paul Thomas, an author of anti-vaccine literature and a YouTube personality who posts regular recordings from his clinic along with a playlist of vaccine scaremongering.
Anti-vaccination also receives support from the conspiracy theorist Alex Jones and his site Info Wars: “Many historians say the lead poisoning of the citizens of Rome exacerbated its downfall. Today, vaccines are strongly contributing to the same sort of downfall of modern civilisation”. The movement relies on emotional language related to the pathology of autism in order to make an impact, for example referring to the rise in autism diagnoses as an “epidemic”. Although there is no evidence to support the existence of an epidemic of autism as defined by the medical field, the term has been echoed by Info Wars, SafeMinds, actor Jim Carrey, U.S. Presidential Candidate Jill Stein and U.S. President Donald Trump, whose administration is criticised (among other things) for its ambivalence and hostility towards the disabled. Vaccine misinformation has already been linked to a decrease in vaccinations in the United States, and a measles outbreak in Europe reported in August 2018.
Kerri Rivera, a prominent proponent of MMS and author of Healing the Symptoms Known as Autism, says: “Almost all of the people with autism have high levels of pathogens; virus, bacteria, parasites and heavy metals. Chlorine dioxide kills pathogens and helps the body to detoxify itself. It is considered safe at doses we use for weight.” She adds: “There are over 225 people who no longer have autism after using it.” The Guardian
Emerging as an after-shock following years of the vaccine conspiracy theory, websites advertising and selling dangerous “cures” for autism rose to enough prominence to garner mainstream coverage and political responses. Miracle Mineral Solution (MMS) gained word-of-mouth recognition in online support groups for parents of autistic children, leading to alarming reports of vulnerable, well-meaning parents force- feeding industrial-strength bleach to their children. Such treatments typically tout the common occurrence of gut problems in autistic people, thought to be the result of regulatory issues but blamed in these instances on ‘poisoning’.
Where vaccine theory proposes an opt-out argument (that’s no less dangerous), the sellers of fake cures encourage and directly profit from active harm towards a minority group, profiting off online misinformation techniques even when the information is easily debunked. The use of bleach as the central object in this case also presents an unsettling parallel with the “Bleach Drinking” meme, most popular on 4chan and similar sites in 2016, the same year the bleach treatment advertisements were first reported and weaponised autism made significant inroads in the reactionary far-right.
Other controversial cures of negligible worth include chelation and lupron (which involve the use of drugs intended for vastly different conditions like prostate cancer and fibroids), vibroacoustic therapy (the use of particular frequencies to calm or motivate children), holding therapy (wherein the autistic patient is held down forcibly to ensure eye contact) and Facilitated Communication (FC) or “supported typing”. FC involves a facilitator touching a disabled person’s arm to encourage the use of a keyboard. Introduced in the late 20th century, it was almost immediately discredited after a series of controversies involving facilitator misconduct. The animal-rights group PETA have also claimed a link between cow’s milk and autism and have advocated for a vegan diet in its stead, prompting immediate backlash.
“Although the deficits of a man with AS become painfully clear in time, they often present as normal in the beginning of a relationship. Men with Asperger’s may not disclose their disorder to you. Some purposely try to hide it. They are unable to understand that it will cause significant problems for you and for the relationship, so they see no reason to tell you. There are many classes, coaching programs and websites that offer training to help them act like a neurotypical (NT, or “normal”) man. Many study the words and behavior of NT people around them, and copy it. They learn exactly what they should do and say in a romantic relationship, since none of it comes naturally to them. It’s an act, one they feel they must put on to win you. No one can keep up an act forever.”
A considerable amount of autistic children rely on prompts provided by adults to stay on-task, complete activities and effectively transition between different activities at home and school. Prompt dependency is thought to continue into adulthood, potentially affecting intimate relationships. Under a media studies perspective, prompt dependency overlaps with theories of mediated sense perception, particularly McLuhan’s conception of televisual images as “tactile promptings” that elicit reaction from viewers.
Mindblindness and theory of mind are two of the most common frameworks used to understand living as an autistic person. It has supplanted previous problematic metaphors for the autistic experience, including the perception of autists as alien or people whose “real” selves are trapped by autism. Theory of mind is the process by which an individual interprets the actions of another by ascribing unto them the same thought processes. Mindblindness was coined in the early 1990s by Simon Baron-Cohen to describe what he described as the central cognitive deficit of autism: the inability to attribute and interpret mental states in others.
Perception of the autistic individual as unmotivated or incapable of responding to prompts in a romantic relationship is used a scapegoat for websites that argue autistic men are incapable of love and are to be avoided. Mindblindness is used as the primary source on “The Truth About Aspergers”, one of a loose network of website encouraging the separation of autistic men from their partners and children. Baron-Cohen is not personally involved in the spread of this misinformation and is a supporter of neurodiversity despite ambivalence towards his work by autistic activists.
These websites are targeted towards romantic partners of autistic men, typically with voluminous misinformation alleging that autistic partners are inherently untrustworthy. The site’s blogroll includes links to several other sites alleging links between autism and domestic violence, murder and sexual abuse, although in some cases the linked pages directly contradict the site’s agenda.The negativity of these sites often goes so over-the-top that it resembles trolling more than misinformation: Asperger Partner’s “tips for NT spouses” include “Realise: it does not get better” amid claims that leaving said partner is the only logical option. The comment section of an article on the same issue repeats similar stories in an almost copy-and-paste manner, along with attacks on commenters who critique the article and claim to be autistic.
The disturbing implications of this viewpoint — seemingly relegated to a few small social groups online — can be seen in the autism-parent memoir To Siri, With Love and the admission by the author that she’s considered securing medical power of attorney over her autistic son so he can be involuntarily sterilised. Furthermore, Newman’s book was decried as ‘neurodiversity lite’ — the use of language typically associated with the autistic community in work that contradicts its core concepts, arguably allowing powerful groups to ‘effectively disguise ableist stereotypes and harmful practices for audiences that aren’t aware of or attuned to them’.
The Autistic Dark Web
Some of neurodiversity’s most active opponents claim an autism diagnosis themselves — and use many of the same tools. The Autism Wikia site categorises these individuals alongside prominent anti-vaccine activists and Autism Speaks under “Autistic Enemies”, highlighting the high emotional stakes in the debate as well as the charge made against the neurodiversity movement of intolerance towards those who do not wish to celebrate their autism.
The most prominent of these figures is Jonathan Mitchell, an American blogger who writes on the negative consequences autism has had on his life, career and romantic relationships. Mitchell’s colleagues include Oliver Canby, who has kept a relatively low profile since his last blog post in 2015 outside of sending death threats to various neurodiversity supporters. Canby’s entry into the neurodiversity debate was inspired by the rants of John Best Jr., a conspiracy theorist and author of the blogs Autism Fraud and Hating Autism which claims that the condition was concocted by the government to enforce civilian compliance. Canby and Best’s conduct received heavily detailed responses from the sites “Lock Oliver Canby Up” and “John Best Jr: Jackass” which reproduce the hateful messages that Canby has since deleted.
Over the course of May and June 2018, the #ActuallyAutistic hashtag on Twitter increased its rate of activity. Autistics who disagree with neurodiversity in turn co-opted the hashtag to debate others. Spurred by the moment, the #AutisticDarkWeb was formed as a ‘safe space’ for pro-cure autistics. As the name suggests, the board’s opposition to identity politics and ‘victimhood’ and promotion of personal responsibility is influenced by the #IntellectualDarkWeb, a collection of self-styled academic renegades whose ranks include Sam Harris and Jordan Peterson. The Autistic Dark Web is made up of autistics who advocate for a cure, and protest against the perceived demonisation of parents and medical professionals. The Twitter page Autistics Against Hate (@AutisticsH) was started the month of this thesis’ completion as an extension of the Autistic Dark Web. The feed consists of retweets of autistic people promoting neurodiversity, with the goal (stated in the bio) to “expose hatred against parents, doctors, scientists, neurotypicals & internal dissidents”.
The AutisticDarkWeb has already received support from the charity Treating Autism, who regularly retweet and reply to accounts who claim to have founded the counter-movement. The charity has also retweeted parents accusing neurodiversity proponents of faking their autism. The #ActuallyAutistic hashtag has not been overwhelmed (many opting to not feed the trolls), however there is concern raised over the DarkWeb’s use of intimidation tactics, dog-whistling retweets, and appeals to outside organisations.
Aesthetic Nervousnesswas coined by Ato Quayson to describe literary presentations of disability, drawing from postcolonial literary theory. Quayson argues that popular representations of disability reflect society’s “subliminal fear and moral panic” in encounters between the disabled and non-disabled. Disabled characters serve to remind the temporarily non-disabled of the capriciousness of their own health and to trigger an affective response in turn. The text then explains that this tension is revealed through a series of aesthetic crises that undermine the humanity of the disabled.
In an article lamenting the ease with which YouTube algorithms and generative animation can be exploited, the artist James Bridle declared his discomfort with the (at-times horrifying) videos masquerading as safe children’s entertainment, using accessible video platforms to “systematically frighten, traumatise, and abuse children, automatically and at scale”. Autistic people, much more likely to be the victims of violence than perpetrators, are themselves the targets of algorithmic fuzziness that play into the hands of misinformation campaigns — most notably the multifaceted anti-vaccine movement, which catastrophises the autistic mind and body for pseudoscience, and the promotion of dangerous “cures” among the online parent groups that are typically lionised by mainstream media.
Mindblindness is considered to be the key issue in criminal cases involving offenders with autism, either informing the views of prosecutors or instrumentalised by the defence as mistake in fact, failure of proof or diminished capacity. A 2007 study from a religious perspective took this to a logical end of sorts by considering mindblindness as a central characteristic of evil. Just as the alt-right’s co-optation of ‘weaponised autism’ can arguably be understood as an attempt to re-affirm negative attitudes towards autism, the #AutisticDarkWeb represents an internal schism in autistic identity, one that disregards the neurodiversity paradigm, adapting tactics from troll culture and the alt-right to sanctify the medical model and redefine autism as an ideological struggle over supposed hegemonies of pathology and difference.
Further, as McGuire & Michalko point out, under Foucault’s conception of knowledge and power dynamics rendering autism inscrutable creates a feedback loop where the basis of autism’s unknowability implies that only non-autistic professionals can hope to demonstrate its nuances. This engenders a power relation where the researcher’s actions “have nothing to do with desiring to have the mystery of autism in our collective life; instead, the only interest in these pieces is to remove autism, mysterious or not, from collective and individual life”. Such stereotypes can influence even relatively innocuous assessments that misappropriate autism as a metaphor, such as a 2011 paper that described the unusual writing style of Gertrude Stein as “an autistic ethos of modernism”, where autism is described merely as the presence of overwhelming solipsism or Simon Reynolds’ repeated characterisation of 90s rave culture as autistic, his rationale not being much more than the fact that the music was pretty weird.
As a disorganised niche within a niche, it is doubtful that the characters covered in this section will reach the public prominence of the Jordan Petersons and Info Wars of the world. However, they are worth assessing in the context of #ActuallyAutistic’s habilitated agencement — as autistic identity reformulates the boundaries of their impairment through digital media, resistance from critics are liable to increase.
To each of the movements covered in this section, “autistic pride” is a clear oxymoron. To John Best Jr., autism is a diversionary tactic of the deep state poisoning the nation’s children. To the pushers of bleach treatment, it is a creation of Big Pharma that can be magicked away with miracle cures. To the Cassandra Syndrome network, autistic pride is the erasure of misery imposed upon innocent neurotypicals by the inherently ‘mindblind’. To the Autistic Dark Web, it’s a delusional practice encouraged by postmodern victimhood.
To such groups, a return to prosthetic agencies is seemingly not enough, suggesting a desire for a possible rehabilitated agency where market influence and individualism is contingent on a certain level of social acceptability. In other words, their version of the clearest path for autistic agency is to remove autism from the equation entirely.
For most of autism’s history, people diagnosed with the condition were “sites for the operations of institutional practices and bodies of knowledge […] seeking to know and act upon the purported ‘essence’ of autism”. The phenomenological embodiment of the autistic experience is under-analysed, and past concessions to the internet’s accessibility to autistic children rarely amounted to much more than lip- service. In this series I set out to illustrate how the new media ecology has catalysed and served the ongoing debate on autistic identity, autonomy and expression. The primary representations of autism — as political identity, medical tragedy, social farce, moral crisis — are unavoidably intertwined with and shaped by longstanding association with digital media.
The resultant struggle over a thick web of online networks is over the definition of ASD itself — not just in a semantic sense but in practical ideologies that critique the orthodoxy of the medical model and of prominent charities like Autism Speaks. For the nonverbal, blogging and video platforms have afforded them the opportunity to finally speak for themselves, and have since offered a wealth of content directly critiquing the societal expectations that they class as a form of oppression. It is an emerging civil rights (possibly counter-cultural) movement that sees technology as a potential liberator, not unlike the utopianism of early internet culture or the political malfeasance of troll culture and “meme magic”.
In contrast to those examples, however, I have illustrated that the theories formed around the autism phenomenon are complimented or paralleled by aspects of the new media ecology. Dysprosody is echoed in the unusual language mannerisms of meme culture, almost all modern entertainment platforms allow users to easily satisfy echolalia and perseverating (to say nothing of its capabilities to assist the ‘special interests’ so closely connected with autistic identity), while media’s tactile promptings serve as an effective corrective to prompt-dependency deficits or a need for predictable routine. As Tarnoff and Weigel argue, even the pathologisation of compulsive media use and Silicon Valley overreach unnecessarily undermines a reality for many whose autism adversely affects everyday life: “Many people rely on the internet for solace and solidarity, especially those who feel marginalised. The kid with autism may stare at his screen when surrounded by people, because it lets him tolerate being surrounded by people. For him, constant use of technology may not be destructive at all, but in fact life-saving”.
One of the alt-right’s commonly cited characteristics is their claim of “weaponised autism” — a statement that has gone relatively unremarked even in thorough examinations of Neo-reactionary populists and identitarians. The argument that the alt-right is racist, sexist, homophobic, anti-Semitic and Islamophobic is fairly regarded as a given — while their deep relationship with ableism is rarely acknowledged beyond the surface level. Weaponised autism posits that the traits of ASD holds potential for intense and impressive feats of data-gathering while simultaneously indulging in demeaning stereotypes. My best guess for the relative lack of insight is a combination of the dialectic foothold of the medical model and an unwillingness to take the alt-right seriously.
However ill-fit for cultural penetration, the cultural stereotype of the oblivious autistic remains most prominent in meme culture and the parents of ‘severely’ autistic parents, who oppose the autistic identity incorporating people who can and will speak for themselves and defend their own prosthetic and habilitated agencements. As autistic dissidents increasingly appropriate the language of reactionary politics and academics describe the politics of ASD as aggressively hallucinatory and divisive (“Autism politics is faculty politics on PCP”, so says John Pitney, Jr.), an inclusive framework to assess the ongoing consolidation of agencement and mediation of autistic identity into the future will become all the more relevant.
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(cw: ableism, far-right politics, white nationalism, sexual abuse. Shit gets bleak, y’all)
“Please don’t write about them,” Lenny Schafer, editor of the prominent Schafer Autism Report, adoptive father of a severely autistic child, and a vaccine activist, said. “They’re trivializing what autism really is. It’s like stealing money from the tin cup of a blind man.”
Mark Blaxill, a leading vaccine parent, called them “a nuisance” and expressed the common concern that they were not in fact autistic. “There’s a militancy associated with celebration, pride, and sense of identity — all that’s fine and wonderful,” he said. “They’re also just a little sad.”
John Best, parent of a child with autism and author of the Hating Autism blog, puts it most harshly: “It’s time to put an end to celebrating having brain damage.”
For most of autism’s short history, public debate outside of the medical profession has been largely represented by parents of autistic children, particularly mothers. Mothers of autistic children were themselves victims of a pernicious early stereotype — that autism was caused by cold, unloving parents stunting their childrens’ growth. The “refrigerator mother” theory was introduced by Bruno Bettelheim in 1972’s The Empty Fortress, wherein he compares symptoms of autism to the cruelties inflicted upon prisoners in Nazi concentration camps.
Deficits in social and vocal affectation are closely linked to ASD, possibly linked to dysfunction in auditory processing. In the past, affectation dysfunction was thought to be a result of dysfunctional family environments. Parental groups were consistently critical of the theory, and have since made continuous contributions to the evolving official discourse around autism and its controversies, arguably more influential than autistic activists themselves.
As pushback against the stereotype, memoirs by mothers of autistic children have become very popular, re-presenting themselves as loving caregivers, but with a notable emphasis on the social and physical burdens of raising an autistic child. The “refrigerator-mom” identity has been challenged by the cultivation of a “warrior-hero” identity, where mothers are expected to “do battle to attain resources and possible cures for their children, ultimately shifting the historical burden on mothers from causing the intellectual disabilities of their children to curing them”.
The work of parent-advocates, particularly those who raise non-verbal children, are a problematic presence in the online autistic community, where “warrior-mom” has been taken up as a pejorative against parents who dehumanise and exploit their autistic children. In return, a further subset of self-identified warriors are known to troll online neurodiversity spaces and question positive autistic identity and accuse #ActuallyAutistic participants of faking their ASD and erasing the plight of ‘severe’ autism cases, usually arguing that someone capable of using social media is ipso facto not autistic. A PsychologyToday column praised the catastrophist tone of private Facebook groups for parents of autistic people, claiming that neurodiversity activists wish to “whitewash” the reality of the condition.
The standoff between parents and neurodiversity advocates over the definition of autism was analysed in the appropriately named Autism Wars column as the manifestation of pain, grief and frustration compounded by the unintended consequences of digital exhibitionism (Cevik).
Attention Monopoly II: Autism Speaks
Autism Speaks was founded in 2005 by Bob and Suzanne Wright, and has since become the largest autism advocacy organisation in the United States. Among its achievements are the funding of research in the etiology, biology, diagnosis and treatment of autism, awareness campaigns such as Light It Up Blue and World Autism Awareness Day, and a series of acquisitions of other influential charities. In recent years, the group partnered with Google on the Mssng project, which aims to create an open source research platform to study the DNA of 10,000 families affected by autism.
Despite the charity’s influential stature, Autism Speaks is the target of regular critique in neurodivergent communities. The charity’s advocacy is overwhelmingly influenced by the medical model of disability and desire for a cure, which stands in direct contrast to the neurodiversity paradigm’s investment in social and political integration. In its early years, the charity encouraged research into the Andrew Wakefield vaccine theory, prompting resignations from founding members and executives in protest. Since 2014, in the wake of overwhelming research discrediting Wakefield’s study, the charity has disavowed the vaccine theory and encourages parents to immunise their children. Backlash against the charity’s 10th anniversary celebrations received coverage from Buzzfeed. In 2017, in response to mounting criticism, the charity removed “cure” from their mission statement.
Representation, media presence and rhetoric have also been sources of controversy. The group defended a staff member who stated in an interview that she considered killing her autistic daughter and only stopped out of love for her other neurotypical child, claiming that murderous despair is common among parents of autistic children. A 2013 op-ed by co-founder Suzanne Wright prompted a strong backlash for its characterisation of autistic families as “not living”. In the wake of the controversy, the author John Elder Robison, one of the charity’s few openly autistic staff members, resigned in protest: “Mrs. Wright’s op-ed articulates a view of the “autism situation” that is very different from my own. She says things I would never say to people with autism and cannot in good conscience stand by.” An echo of the statement is seen in the aforementioned project with Google, the title of which implies that autism leaves supposed ‘real’ children missing or kidnapped.
Perhaps the most notorious of Autism Speaks’ public relations controversies is the 2009 video “I Am Autism”, created in partnership with the Oscar-winning director Alfonso Cuarón and screened at the United Nations. The film was heavily criticised for dehumanising young autistic people and portraying the condition as a Grim Reaper figure who steals “real” children from their families:
I am autism. I’m visible in your children, but if I can help it, I am invisible to you until it’s too late. I speak your language fluently. And with every voice I take away, I acquire yet another language. I work faster than paediatric aids, cancer, and diabetes combined And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don’t sleep, so I make sure you don’t either. I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain. You have no cure for me. Your scientists don’t have the resources, and I relish their desperation. I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?
Autism Speaks has long been accused of myopia in its use of funding. A 2014 report found that 70.9% of its revenue is devoted to program expenses, significantly lower than smaller autism charities, and that at least thirteen high-level officials enjoy six-figure salaries. Steve Silberman has noted that the charity’s spending practices is symptomatic not just of the overwhelming influence of non-autistic voices in its administration but of research practices in the U.S. in general, where the vast majority of funding goes toward risk factors and cures rather than improving the lives of people on the spectrum, particularly adults.
The weak central coherence framework describes behaviour where the individual exhibits enhanced local processing and weak part-whole integration. A 2016 study suggested that this is connected to greater accuracy in tasks that require copying or repetitive behaviour. A 2011 study found that autistic adults show higher levels of local information processing through self-reports rather than neuropsychological tests and measures. This is another common cultural trope of autism, usually a spin on the old joke that autistic savants can easily and accurately count scattered toothpicks. In the wake of the 2016 presidential election, the trope was then appropriated by neo-conservative reactionary groups to describe acts of anti-social behaviour online, so-called “weaponised autism” — defined below as “weirdoes on the internet fucking with people for the lulz”.
In recent years, the rising tension in the free speech debate has evolved with increased prominence of groups who adopt new media as a tool in spreading social awareness. In response to the “meme warfare” of the alt-right, for example, Guiora and Park advocate legal intervention on a case-by-case basis, arguing that in such situations “the duty to legally protect victims of hate speech outweighs the privilege of freedom of speech otherwise granted to those who engage in social media”.
The alt-right has been noted for its idiosyncratic technique of information distribution. Practitioners of so-called ‘meme magic’ compare such techniques to psychological warfare, a corrective against supposed social prohibitions in the predominant political culture. The alt-right seek controversy and tension as a matter of course, and are infamous for the appropriation, remixing and/or reproduction of outside cultural and political artefacts. This includes claiming an already popular internet meme as their own, enfolded within the use of crude, dehumanising images to decry racial minorities, feminists, and Judaism to name just a few. Although the alt-right’s concessions to racial, sexual, and gender biases is well known by now, its relationship to neurodiversity is relatively under-analysed for a movement that coined Weaponised Autism as a political strategy.
The phrase “autistic screeching” in particular is a popular insult among such groups, used to decry almost anything from unabashed enthusiasm to simply whatever behaviour or belief system the individual finds annoying or irrational (Wendling). The meme began as a response towards the outcry following Trump’s election, hitting its peak in the opening 6 months of his administration. The association of autism and theatrical dissent is found regularly in 4chan culture, as in a list of rules for a Facebook /mu/ splinter group which asks users to “keep [their] autismo and ego in check”. Furthermore, the meme appropriated the onomatopoeic scream of anguish initially associated with alt-right mascot Pepe the Frog (“REEEE”) as cultural shorthand for autistic speech.
A podcast hosted by the white supremacist website the Daily Stormer denounces the anti-fascist movement, dismissing them out of hand as “mentally ill” to such an egregious level that “… one would think that the overwhelming presence of dickgirls and soyboys in their organization would have been a dead giveaway but apparently the autistic screeching and gender dysphoria was too subtle an indicator”. By contrast, the website altright.com posted an article in December 2016 favourably detailing Simon Baron-Cohen’s theory that autism could be partly explained as the instance of an “extreme male brain”. The article presents Baron-Cohen’s arguments in glowing terms, romanticising the implicit link between the autism spectrum and above-average intelligence in young males. No mention is made of studies that critique or contradict the extreme male brain theory, usually arguing that the theory disproportionately relies on the unnecessary gendering of particular human capabilities.
There is evidence to suggest that, for at least some under the alt-light banner, interest in neurodiversity is sincere, though overwhelmingly influenced by ideology. Quillette published a piece by the academic Geoffrey Miller titled “The Neurodiversity Case For Free Speech”, arguing that campus codes of acceptable speech unintentionally harm those who struggle socially. The article’s dismissive attitudes towards leftist ideologies and the reactions in the comment section present a desire for an explicit link between autism and right-leaning viewpoints: “most campus speech codes are associated with social justice theories of gender feminism, critical race theory, and social constructivism, which reject the best-established scientific findings about sex differences, race differences, and behavior genetics”. Peppered among the comment section are critiques of Miller’s arguments, ranging from alleged fellow-neurodivergents questioning his motives, to users accusing Miller of using his autism as a shield from the consequences of his own behaviour, to the standard use of autistic stereotypes as a source of humour.
As Miles Klee notes, identification with autism in extreme right-wing groups online appear to be conditional on personal terms and operationalisation. Klee argues that the particular brand of autistic pride evident in these communities is an attempt at wresting control of the changing narrative of the condition on their terms, even if such terms involve ostensibly self-defeating strategies like trolling:
“So, are the race-baiting, doxx-happy, Trump-aligned autists of the internet the stewards of a genuine collaborative influence, or simply the victims of their own divergent thinking? If you’re at all familiar with the 4chan universe, you know these aren’t mutually exclusive propositions, and that both are just a little too tidy. Instead, they illuminate a paradox at the heart of trolldom: the recognition that there is something “wrong” or “off” about oneself, coupled with the desire to heighten and strengthen it. That instinct recurs in related web movements — witness the misogynists who struggle to form relationships with women condemning sex and “going their own way,” as if they chose to be celibate.”
Later in the same article, Klee argues that the alt-rights’ memeification of autism ultimately runs the risk of reinforcing damaging stereotypes about people on the spectrum, leading young autistic men towards risk of radicalisation.
Jessie Daniels has described the far-right as “innovation opportunists” who revel in subverting technological progress and the utopian claims ascribed onto them by idealistic pundits. Such opportunism to facilitate far- right political agendas has spread from the operationalising of internet platforms to the emerging concept of neurodiversity itself. In practice the alt-right is diverting attention from self-advocacy and leftist-affiliated autism groups to either make an explicit connection between autism and far-right ideology, or to re- emphasise the hyper-pathology critiqued by the neurodiversity paradigm.
It is also possible that the alt-right is instrumentalising autism in their crusade against “normies”, in particular the long-mocked figure of the ‘Wannabe Autistic’: “the schmucks who read about Autism online and decided they had it, without getting any professional opinions”. It is usually invoked to criticise those who flag their apparent autism as an excuse for disreputable or unethical behaviour. It is also used to suggest that self-described autists are harbouring delusions to compensate for personal mediocrity, described in the above Urban Dictionary definition as “Special Snowflake syndrome”, another favourite epithet of the alt-right.
Modern meme culture’s fixation on the ‘defective’ qualities of autism can be sourced to the 2007-era meme “Sonichu”, which was a Sonic the Hedgehog/Pikachu fancomic by the autistic vlogger Christine Weston Chandler (fka Chris-Chan), who’s also prone to antagonistic behaviour. Chris-Chan became one of the most significant targets of the mid-2000’s online troll culture, an effort spearheaded by 4chan and Encyclopaedia Dramatica. Furthermore, the latter website (a comically over-the-top and provocative parody of Wikipedia detailing troll culture) describes the autistic as ‘the most compelling argument for eugenics ever established’ and lists ‘ruining the internet’ as a common symptom.
The Please be patient I have autism meme originated from Amazon selling a similar hat in October 2015. Like many of its kin, this meme lends itself to multiple interpretations. For example, the image on the left deploys autism as a try-hard mitigator for corporate misbehaviour. On the right, the hat is applied to the central character of the video game Mass Effect: Andromeda, as a critique of the game’s “alarming” facial animations and hollow voice acting. Comparisons to autism were present in other unflattering memes from the gaming community:
Narrative Prosthesiswas coined by Mitchell and Snyder to describe the twin functions disability serve in literary discourse: as stock characterisation and an opportunistic metaphorical device. Garland-Thomson notes that the portrayal of disability as a narrative problem requiring a solution narrows the imaginative possibilities to accommodate neurodivergent characters. Furthermore, problematic representation affirms and molds discriminatory attitudes in society and in public policy, as disabled individuals are reduced to figures of pity, or embodied metaphors for emotional distress. The use of autism as a rhetorical device is notable in almost any representation of the condition, presented as a set of variations on the boogeyman, the nightmare child, the far-right provocateur and the oblivious techie.
Depictions of autism on YouTube are not just created by autistic individuals but also by the parent community, often (in most cases unintentionally) presenting autistic individuals as objects of pity or pain. For example, a search on YouTube for “autistic child” returns video results with titles like ‘I’m scared of my own autistic child’, ‘Trying to Cope With A Severely Autistic Child’, and ‘Tyler — from before he was autistic, to becoming autistic, to recovery’. Perhaps more unsettling is the subgenre of parents recording and releasing homemade footage of their children’s meltdowns, usually accompanied by self-pitying commentary.
A 2014 study suggested that content analysis of YouTube videos could be beneficial for early diagnosis, however the same study notes that the videos analysed predominately feature young (mean age 4), white (89.1%) and male (67%) children. This is reflective of the limited understanding of the condition, but also the tendency for online parent groups to emphasise the misery and vulgarity of autism and its effect on families over the lived experience of the individual. Autocomplete for the word “autistic” on YouTube also returns “autistic meltdown funny” as one of the most popular searches, suggesting that such videos are popular among the 4chan splinter-groups who’ve taken on autism as a go-to insult.
Such digital exhibitionism, problematic even when presented in a vacuum, presents the inversion of habilitated agencement, arguably setting the scene for the much more caustic groups covered in the following chapter, who deviate from the movements just described in its willingness to directly demonise the neurodiversity paradigm.
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Studies on autism typically focus on treatment and rarely consider the notion of an ‘autistic culture’, leaving the term nebulous. In some cases, the question of culture is characterised as the environment the autistic individual is embedded into, illustrating the individual’s deviation from the norm. Considerations of autonomous autism actions usually base arguments within a cybernetic frame, where the autistic actor formulates and passes on world views to others through the circular feedback loop of the internet. Memoirs by autistic writers describe difficulties with childhood play and friendships, but also the pursuit of enjoyment and connection with others through stimming or discussing their specific interests.
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 and shared philosophies. The “Mad Pride” movement is a 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”. Its antecedents in the United States — with names like the Insane Liberation Front — wished to change societal attitudes with the aid of lectures and publications. In recent years, Pearson and Trevisan have noted that disability activism in the UK is influenced by the new media ecology as austerity increases, 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.
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. These being ancient society’s romanticising of the ideal, mixed with a neo-conservative interpretation of the Gaussian bell curve — which argues that poverty and intelligence are linked to 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’); this in turn creates stricter templates regarding what exactly the ‘normal’ body is; and finally, 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 a moral imperative placed upon the norm.
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 civil rights development. In particular, the notion of a disabled ‘identity’ is one that needs to be further examined, as the civil rights debates surrounding disability deviate in ways both subtle and drastic from the intellectual traditions of other (and intersecting) marginalised groups based on sexuality, gender, class and race. 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.
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” although it should be noted that this study was limited in scope by being based in the United States and employing self-reportage. Nonetheless, it shows that new media platforms serve a role in neurodivergents’ lives that previously was not available to them.
Participation and engagement with media manifests not just in consumption but also the cultivation of autonomy, particularly 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 disadvantaged groups. In the case of neurodivergents, 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 their intentions. 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 an evolution in disability culture 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. A study on reactions to the DSM-V altering the definition of Aspergers Syndrome in 2012 attempted to lessen such a burden by not providing statistical data that over-relies on any one 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”. Indeed, ambivalence towards the medical profession is common in mental health communities, however this mistrust does not then necessarily lead to dismissive attitudes towards the role of diagnosis, and many self-diagnosed autistic people argue that the prohibitive costs of professional diagnosis leaves self-identification valid.
The most significant progression in recent years self-advocacy. This is a reaction against a public understanding of autism that is largely shaped by academics, clinicians and parents rather than the individuals themselves. Giles argues that “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”. This is especially so 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 is 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. 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 is primarily a social construction, and therefore the act of diagnosis and treatment is addressing a cultural product rather than a physical condition, varying in intensification depending on the individual and surrounding culture. The definition of an autistic identity or body can vary by country, societal attitude and the personal experience of the patient. Molloy (no relation) and Vasil note that autistic individuals who were ‘involuntarily’ diagnosed 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.
“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”
Writers and thinkers on autism have suggested that the Internet allows for flexibility in social responses and presents a predictable environment where sensory input can be modulated and adapted to specific needs, down to brightness, accessibility and colour preferences. The internet also serves as a potential escape from the “masking” common among autistic adults, where social camouflage and compensation techniques are used to hide immediately apparent signs of autism in order to fit in and make connections with others. A 2017 study found that social camouflaging is an exhausting experience that poses a threat to self-perception. Put another way, the internet has proven to be a 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 arguably obsolete systems. 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 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 caricatures of various controversies, written from the perspective of a “normal” autistic commenting on the unusual behaviour of neurotypical 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 content or purpose.
Weblogs feature crowdfunding links, meticulously organised tags and website categories, and run the gamut from journals, magazine-like blogsites with open submission practices, independently curated reading lists for visitors interested in the autism rights movement, and promotion for indie documentaries. Furthermore, YouTube is an example of the movement’s proclivity to adapt to whatever new media tools are offered to them, particularly in the case of nonverbal individuals who can adopt an audio-visual platform to creatively express a perspective that struggles with traditional speech. In fact, recordings of autistic “sensory overload” or meltdown is a micro-genre in itself, as an informative tool, a subject of mockery or as a series of hysterically titled videos by exhibitionist parents.
The ideas and arguments presented in the neurodiverse space do not conform to any one political ideology, but a leftist bent is noticeable among activists. There is a level of web-to-life community intervention, intuitive grasp of digital culture, and a desire to shift the Overton Window to accept the perspective of a group long ignored, abused and misunderstood. Look at it from an awkward angle and it resembles a mercifully coherent and benevolent burst from the same collision of digital and social that birthed recent reactionary movements.
Blogs that support neurodiversity appear to be closely affiliated — American sites in particular typically include a blogroll of similar websites, often promoted as an alternative to larger platforms like Autism Speaks, and they are enthusiastic participants of Blogging Against Disablism Day. Forums like Wrong Planet and autismforums.com remain popular and active, more-so than autism-related subreddits. Contemporary memes on autism are typically from a mocking, far-right perspective (see part 3). Memes created by and for autistic people rarely cross over into greater success, with the remaining examples notably dated, such as the “Autistic Hedgehog”. That said, autistic-created memes are a regular occurrence on the ActuallyAutistic hashtag on Tumblr and the Actually Autistic Memes Facebook page. Examples of autistic experience amplified through these platforms are:
Though for the most part written for an audience that shares autistic identity, blogs also promote information beneficial to neurotypicals. Thinking Persons’s Guide to Autism, for example, is a Blogspot-hosted platform that shares regular explainers of issues in the autistic community from the neurodiversity perspective in an accessible manner. The site also includes a comprehensive list of resources for the autistic, the not-yet-diagnosed, and parents.
Websites with considerably more alarmist tones are also in abundance, usually characterising ableist society as evidence of attempted “eugenics”. This is referred most commonly to anti-vaccination campaigns, extreme physical treatments, life-endangering ‘cures’ and, most divisively, pre-natal testing and euthanasia for autism. The latter controversies inspired the “Autism Genocide Clock”, a blogsite counting down to a predicted date in 2015 when routine abortions of autistic people were to become easily available, and the advocacy group Not Dead Yet, which argues against the liberalisation of euthanasia laws for the disabled.
As autism is largely analysed enigmatically, some researchers have advocated for the use of intermediation to act as connective tissue between the lived experience of autism and education practices. This has taken the form of drama education, art/music therapy, and independent ventures on YouTube and blogging platforms. Trimingham and Shaughnessy discuss the impact of the neurodiversity paradigm on their work as drama educators, noting that hyper/hypo-sensitivity to sensory experiences can and should inform intermedial practices, arguing for “active learning through an iterative cycle of practice as research… making sense of autism through experiencing the child interacting with the mediality of the pod’s scenic environments”.
On the other hand, phenomena such as YouTube videos depicting the autistic experience is perhaps better described as remediation. J. David Bolter and Richard A. Grusin have argued that remediation is a key aspect of new digital media, as the field is known for its near-constant incorporation and reinterpretation of other media. In this case autistic bloggers and content creators are operationalising the digital media landscape to remediate previous attempts to represent and embody their condition, including prominent theories of autistic behaviour like dysprosody and echolalia.
Prosody is a literary term used to describe patterns of stress, intonation and rhythm in language. Dysprosody has been described as a selective impairment in the integration of prosodic and semantic cues to emotion, although this is dependent on both task and the character of emotion. Autistic dysprosody is characterised as either a flat, toneless voice; a hyper, exaggerated tone that risks clashing with subject matter; or as speech that restrains flow in favour of clipped bursts. A 2011 study suggests that autistic speakers employ an increased range of pitch variation, and that its unconventionality is not typically registered by listeners.
Echolalia is the repetition of specific vocalisations by an individual. As a common symptom of autism is a struggle to produce spontaneous speech, it is thought that echolalia may be a coping mechanism or practice in verbal socialising. Uta Frith suggested that echolalia is an example of gestalt processing in autistic children; an attempt to acquire meaningful perceptions in a chaotic world. Incidental echolalia refers to difficulties in filtering out background environmental noise. Echolalia is a common target of applied behavioural analysis, however some thinkers have argued that echolalia is a potentially useful resource in accommodating the communication needs of autistic children.
Recent social-model based research has reassessed dysprosody, stimming and echolalia from cultural perspectives, including ethnomusicology and subsequently interacting with such behaviours through music therapy.
These two behaviours are readily apparent in the work of Mel Baggs, whose video “In My Language” took advantage of the abilities afforded by the early years of YouTube to present a compelling counter-argument to the assumption that non-verbal autistic individuals are necessarily unable to communicate lucidly. A concession to traditional speech comes halfway through the video, described as a ‘translation’: “My language is not about designing words or even visual symbols for people to interpret. It is about being in a constant conversation with every aspect of my environment […] Ironically, the way that I move when responding to everything around me is described as ‘being in a world of my own’”.
In the decade since “In My Language” was released, digital media has increasingly introduced subcultures that veer away from accessible vernacular or, in some cases, world-views. Meme culture is an ever-expanding prism of individuals incorporating the nuances of their environment and personal prosody into humour; furthermore, the 2016 presidential election has shown that internet-based subcultures are now significant contributors in cultural and political debate. Although autism’s place in meme culture is, for the most part, indulgent in stigma (D’Anastasio), online content created by neurodivergent communities suggest a similar investment in using online tools to represent and renegotiate identity, such as the #ActuallyAutistic Twitter hashtag, a rolling thread for autistic individuals to converse without intrusion.
A 2017 introduction to digital activism posited that studies into such movements are limited in scope – either by implying a universal method of certain devices or infrastructures, or by hewing too closely to the established definitions of activism and subsequently missing the unique abilities afforded by by the internet. In response, Treré has argued that further studies into digital activism must acknowledge “the coexistence and coevolution of activists and their technologies”, particularly so in studying online advocacy and activism by autistic people, as the internet has been popularly declared an autistic-friendly space almost since its inception.
Katherine Runswick-Cole identified two significant factions in the self-advocacy movement: “autism advocates” (awareness of people on the autism spectrum based on an understanding of autism as a disorder) and “autistic advocates” (an understanding of autism based on autism-as-difference and as a distinct culture). She argues that autism advocates enjoy higher levels of mainstream attention and prestige as it most closely correlates with the high value placed upon science in neoliberal societies, which then funnel the majority of resources into treatment, intervention and environmental factors.
Disability researchers have noted that the internet has become a central figure in disability activism, going so far as to claim that digital activism is now “deeply embedded” in disability culture. Furthermore, the relationship between the internet and disability can be seen as “paradigmatic for the wider debates on the philosophies, forms, and formats embedded in technologies”, particularly in the UK where disabled lives are particularly affected by austerity, budget cuts and hostility towards welfare recipients. However, it must be noted that internet accessibility is not a guarantee for socially active disabled people, and that disability-friendly platforms need not only be assistive.
The most prominent counter-group to the paradigm represented by Autism Speaks is the Autistic Self-Advocacy Network (ASAN), a US-based non-profit which emphasises improving the lives of autistic individuals over medical research and makes a point of hiring autistic individuals to serve on its board. ASAN’s website features statements on autism-related news stories, with a significant section on public policy that affects autistic citizens, often in the form of open letters that explain proposed legislation and the surrounding debate in detail, for example the seductively headlined “Comments on Proposed Delay of Significant Disproportionality Rule”. Such groups seek to use the affordances of digital media in order to boost the social capital of autism.
Victor Turner originally described the liminal moment as a transitional state where old structures have been brought down and new ones are not yet created. In Life on the Screen, Sherry Turkle writes that the Internet serves as a permanent state of liminality, “a moment of passage when new cultural symbols and meanings can emerge. Liminal moments are times of tension, extreme reactions, and great opportunity”. As autism’s liminal moment makes its tentative steps outside of the internet, it is operationalising newly habilitated identity to disabuse stereotypes and shift political burdens.
New media is not just a useful social prosthesis for the socially-challenged, but an example of the ability of virtuality to become a transitional space. In this space, intellectually and socially ambitious groups are operationalising new media tools to construct subjectivities that critique and subvert societal expectations of autistic life. The goal is not just to increase support for autistic people, but to redefine the notion of autism itself on their own terms. This takes the form of both organised, ideological advocacy and tongue-in-cheek mockery of the medical model’s ubiquity in autism research.
“The appeal (or not) of neuroscience in constructing identities depends on what is gained or lost politically, economically and in the meaning of the category. In confronting neurobiological vocabulary about identity, autistic self-advocates and adolescents both negotiate notions of difference/homogeneity and pathology/normalcy, appealing to, or resisting, the brain to confer different meanings in relation to these themes”.
Although difficult to determine, it is likely that this movement and their critics — notable in their digital nativity — will have significant roles to play in future civil rights debate. The increasing scale of autistics inhabiting their identities through the mediated lens of digital media, while still niche, has not gone unnoticed by critics of the neurodiversity paradigm. The confluence of habilitated agencement and complex embodiment as described in this section has resulted in a considerable backlash. The next two sections will assess the movements pushing back against online autistic identity. The first, Corporeal Sensitivity, will follow the embodied empowerment engendered by the subjects in this chapter towards the dialectic and political strictures resisting the emerging movement.
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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.