empowered agencement / autistic activism
(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.”Andrew Solomon, “The Autism Rights Movement”, NY Mag, 2008 (passage edited for length)
Attention Monopoly I: Warrior-Moms
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.
Criticism of Autism Speaks is notable for being almost entirely sourced outside of traditional media circles. Academic journals rarely critique the organisation outside of its history with the vaccine theory or charges that the organisation turned autism research into a fad that drains resources for other conditions. The controversies have seemingly done little to hamper the charity’s status as a leading authority on autism research. For example, online reviews of the American television series The Good Doctor (which features an autistic surgeon as a lead character) regularly cite Autism Speaks as a source of information, with no mention made of its divisiveness or of alternative sources. The charity also boasts consistent support from influential American celebrities, including the comedian Jon Stewart, who since 2006 has produced the Night of Too Many Stars series of annual benefit shows, raising over $18 million for various autism charities.
The charity’s influential stature and large-scale funding has left a multitude of medical-model centred studies. Combined with significant presence in autism-related search engine results and a board largely made up of current and former CEOs of large corporations, it leaves a layman’s impression of Autism Speaks as the foremost authority on the subject, despite the lack of direct services and the considerable amount of critique toward the organisation by autistic people. Neurodiversity blogs have criticised Autism Speaks in particular for inefficient emergency funding and for using the experiences of affected individuals for promotional purposes without permission. In 2014, the autistic blogger Alyssa Hillary accused Autism Speaks of stealing work by autistic people and using white-texting to push the stolen content higher in search results over the original — giving the impression that the charity is supported by people who are in fact among their harshest critics.
The episode highlights the notion of an “attention economy” at play in modern social movements — in a participatory media ecology, “social movement adherents can broadcast to larger publics, mobilise their supporters, offer preferred frames, and directly engage key mediators of attention, such as journalists, celebrities, or government officials” (Tufekci). However, the same tools are available to the groups a given social movement works against. White-texting stolen work by their opponents for search engine optimisation suggest that Autism Speaks actively seek an attention monopoly in mainstream understanding of autism.
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 presence of autism in the alt-right is difficult to parse, as it appears to inhabit several, seemingly contradictory moods. It is shown as a mark of respect for sophisticated acts of internet exploitation like cyberstalking or doxxing as much it is used as a mark of insult intended to discredit the alt-rights’ critics. Weaponised Autism is claimed by these same communities as having helped elect Donald Trump to office, while autism advocates have noted a rise in autism hate speech online during the early years of the Trump administration. Conversely, conservative commentator George Will classified Trump’s behaviour during the 2017 humanitarian crisis in Puerto Rico as “social autism”, while Duke historian Nancy MacLean named autism as a potential source of the “malevolent ideology” of recent U.S. conservative thought, invoking from both ends of the political aisle empathy-related stereotypes. Similarly, the #DiagnoseTrump hashtag was criticised for its ableist implications.
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.
In its more unpleasant modes, alt-right figures shift aim towards the very group it claims to inhabit, as in the case of a white nationalist-affiliated YouTuber accused of luring and attempting to impregnate a young autistic woman.
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.
Furthermore, the rise of the alt- right has coincided with the increasing prominence of identity in political debate, particularly in the US. It’s suggested that the movement is a reactionary screed against a perceived attack against white masculinity as civil rights for disadvantaged groups increase, which suggests that the movement has latched onto autism’s complicated history with gender in order to re-embed the condition as primarily male.
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 Prosthesis was 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.
The situation is no doubt negatively affected by the distorted view of ‘typical’ autism in the popular imagination. Vivian Sobchack, an amputee and scholar, has argued that the prosthesis has become fetishised in modern art, a “floating signifier” of the abject, obscene and traumatic. Portrayals of autism in film and television were found to over-represent savant skills, and recent portrayals have been criticised for indulging in exaggerated stereotypes (Murray 2013 on The Big Bang Theory), overwrought sentimentality (Surrey on The Good Doctor) and for hiring neurotypical actors and producers to portray autistic individuals as “baffled, bumbling, almost complete naïfs about the non-autistic social world and its expectations and the realities of how things work” (Chavisory).
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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