habilitated agencement / autistic culture
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.
The interaction between complex bodies and the socialising effects of diagnosis leaves autistic identity relatively malleable, described by Davis as an “unstable” category that complicate debates on identity politics. This is especially the case on social media, where competing conceptions of complex embodiment can collide: a study found that posts by autism advocacy groups on social media reach larger audiences from the use of emotional language and audiovisual content, and it concedes that this is a condition easily exploitable by distributors of misinformation. The instability of autistic identity and the growth of autism activism has contributed neurodivergent perspectives to matters of public policy, gender studies and cyberactivism. Critique of autistic activism address the discrepancy between the experiences of high and low-functioning individuals and in some cases question the idealism of the non-pathology perspective, as in the trifling but amusing case of a writer to New Scientist who reasonably acknowledged the lack of resources available to families outside of large charities, but also dismissed openly-autistic activists as wannabe “X-Men” who do not (or cannot) understand their own best interests.
As we have established, autism and the internet have been superficially connected to the point of self-parody. In 2011, a leading neuroscientist was criticised by fellow academics and activists for the unsubstantiated suggestion that the rise in autism diagnoses and internet addiction were connected, while The Guardian’s Richard Watson was criticised by his own colleagues for speculating that Silicon Valley’s impropriety is explained by autism:
“If internet culture is on the autism spectrum, this could explain how some companies can regard privacy as collateral damage. It may also explain how some companies constantly miss the small social cues coming from their customers. It would certainly explain how Facebook continually offends its users, and may explain how some technology companies can’t see that an open, connected and copyright-free world isn’t necessarily better for everyone”
Instead of citing an autism researcher, neuroscientist or anyone involved in Silicon Valley or on the spectrum, Watson’s primary source for his analysis was a quip from a character in a satirical novel by Douglas Coupland. This attitude is common — Katherine May described a conversation with a sociologist who damned big-tech working culture as ‘institutionally autistic’ while tech-associated characters on the comedy series Silicon Valley and Unbreakable Kimmy Schmidt and The Social Network’s characterisation of Mark Zuckerberg are arguably expanded riffs on Coupland’s original gag.
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.
“Nothing About Us, Without Us”
Michael Hardt writes that the emergence of internet-based activism coincides with ever-increasing rates of technological change and apparent “accelerated rhythms of political shifts”. Despite this interest, digital activism does not necessarily have a fixed definition. It can be used to describe activism that engages with specific characteristics of digital media (e.g. hacktvisim, DDOS attacks, hashtag and open-source advocacy); or more broadly to describe any digital media used for political purposes, where the internet is seen “as a ‘popular space’ that needs to be appropriated by ordinary citizens, turned away from consumptive activities and towards the purpose of popular mobilisation against the neoliberal elites”.
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”.(Ortega)
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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