Autistic Self-Advocacy and Activism on the World Wide Web: Frontiers of Digito-Neural Subject Formation

Volume 1. No. 5

Autistic Self-Advocacy and Activism on the World Wide Web: Frontiers of Digito-Neural Subject Formation

 

July 10, 2017

By Scott D. Folsom

 

Abstract:

Autism spectrum disorders (ASD) are characterized in both the psychological discourse and the popular media as being, at least in part, disorders of spoken word communication. One result of this characterization is the perception by neurotypical society that autistic neural subjects are inherently non-communicative, or somehow less communicative. The discursive and ideological consequences of this perception are well documented. One countercurrent in ASD research motivated by a social understanding of disability is an exploration of the interactions between autistic subjects in digital spaces, often through media that do not require spoken word communication. The present paper explores and documents instances of autistic subjects use of the World Wide Web to communicate about ASD and autistic subject formation, and considers both academic responses to this phenomenon, as well as texts from within the ASD community.

 

 


 

Autistic Self-Advocacy and Activism on the World Wide Web: Frontiers of Digito-Neural Subject Formation

By Scott D. Folsom

Introduction

Autism spectrum disorders (ASD) are characterized in both the psychological discourse and the popular media as being, at least in part, disorders of spoken word communication[1]. One result of this characterization is the perception by neurotypical society that autistic neural subjects are inherently non-communicative, or somehow less communicative. The discursive and ideological consequences of this perception are well documented[2],[3]. One countercurrent in ASD research motivated by a social understanding of disability is an exploration of the interactions between autistic subjects in digital spaces, often through media that do not require spoken word communication[4]. The present paper explores and documents instances of autistic subjects use of the World Wide Web to communicate about ASD and autistic subject formation, and considers both academic responses to this phenomenon, as well as texts from within the ASD community.

 

A Grand Tour of the Autistic Internet

Much of the research about autism and the Internet focuses on technology as a treatment or possible cause of ASD. A counterhegemonic trend highlights the Internet as a means of community building and expression. This section explores both trends in the literature and presents a paradigm for discussing texts from the Autistic Internet.

The dominant trend in scholarly discourse about the intersection between ASD and the Internet considers both phenomena through the medical model of disability in other words, there is a general alignment within the hegemonic scholarly discourse to adopt what Michel Foucault terms the medical gaze, replete with measurements, clinical recommendations, and pathologizing approaches to this comingling of phenomena[5]. Romano et al (2014) and Yi-Lung et al (2015) attempt to derive a relationship between ASD, anxiety disorders, and Internet Addiction, the perennial bogeyman of the Luddite press[6],[7]. Others pursue a slightly less pathologized causal approach, while maintaining that the sort of Internet use that autistic neural subjects could necessarily participate in is compulsive[8]. When the Autistic Internet is not pathologized, it is deployed as a therapeutic intervention, in the service of developing social skills among people with autism.[9] Under the medical model, ASD and the Internet cannot intersect without the intervention of the medical gaze; the medical apparatus cannot account for these intersections without first translating them into something susceptible to their ideological and discursive practices.

There are, however, counterfigurations in the literature that confront the limits of this discourse[10]. A socially-oriented approach, one that falls more comfortably under the neurodiversity banner unfurled by organizations such as the Autistic Self-Advocacy Network, approaches the intersection between ASD and the Internet as generative of self-fashioning or self presentation[11]. Another counterfigurations is an approach more oriented toward the media created, seeing it as a form of communication or cultural expression, produced by autistic neural subjects in order to produce and reproduce autistic culture[12]. This comes in addition to research carried out about the production of autistic literature, both on- and offline[13],[14]. This research manages to avoid the medical intervention altogether, and prefers instead to read the intersection as a phenomenon between its two participants.

Prior to this research, however, is the autistic internet itself. While autistic neural subjects have certainly populated many segments of the Internet, the present study will draw discourse objects from one corpus: the #ActuallyAutistic tag on microblogging platform tumblr. It is important to note that this is motivated research; it is written by a member of these communities, and the biases inherent in community membership are here acknowledged as situated knowledge on the part of the researcher, knowledge that, rather than being set aside for the purpose of presumed rational objectivity, is essential to understanding the autistic internet[15].

First, to tumblrs #AcutallyAutistic tag, a self-selecting community of autistic neural subjects whose participation in the community is contigent on tagging posts on their tumblr microblog with the identifier #actuallyautistic. The effect is that only tagged posts serve as a record of ones contribution to the community, and that members can opt-in or out of membership on a post-by-post basis. The function of tagging in social media more generally is to sort posts into various categories, in order to make them more easily indexed by users and search engines; on tumblr, this phenomenon has evolved into the use of tags as intentional discourse communities, complete with policing of the membership in order to ensure that unintended members do not populate the tag[16]. Demographically, the most significant feature of the tumblr community is age: as Fig. 1 demonstrates, the general population of tumblr skews decidedly toward the younger end, with 45% of its membership falling below the age of 35[17].

Now that we have located a corpus populated with texts written by autistic neural subjects, it is worth a brief moment to set out the kinds of analyses that will take place. The present paper primarily makes use of critical discourse analysis to make observations about the social and material conditions of autistic neural subjects in an ableist society, vis--vis their collective utterances on the Internet. In other words, we aim to investigate critically social inequality as it is expressed, signalled, constituted, legitimized and so on by language use with specific attention to the autistic neural subject[18]. The study of rhetoric has natural kinship with CDA, and so far as it relates to the study of the discourse of a marginalized group, the aims appear to be congruous. Thus, I would like to propose questions that serve to govern the kind of critical discourse analysis that comprises the remainder of this essay:

  1. What are the forms that communication takes in specific online spaces? Are there words, images, sounds that appear to be deployed in specifically autistic ways?
  2. What gets communicated in these spaces? Are the areas of discussion broad, or narrow? Is autistic neural subjectivity a primary focus, or a background hum?
  3. Whose voices are privileged in these communities? Autistic neural subjects in general? Specific sorts of autistic neural subjects? Neurotypical voices?
  4. Do different communities have different political commitments? What are the relationships between discourse communities of autistic neural subjects and kind of autism activism and advocacy that exist within and outside these discursive fields? What are the broader social politics of these spaces?

These questions will be answered, albeit in a non-itemized, holistic sense, through examination of a sample of the corpora discussed above as they exist on 13 May 2015. Images of these interactions will be placed in the Appendix[19].

 

Neural Community on tumblr

Despite the presumed image-heavy nature of tumblr expression, one of the prevailing features of the #ActuallyAutistic tag on the site is a prevalence of text. The figures in the Appendix are all text, and constitute a representative sample of the kinds of expression that take place on the site as a whole. While it would be difficult to argue, then, that the form betrays a use that carries specifically autistic modes of presentation, the language and content of these posts has a determined focus on political issues and cultural notes that relate to autistic neural subjectivity[20]. One such site of autistic neural subject formation is in posts that directly address specific autistic experiences, often including the phrase that autism feel (incidentally, thatautismfeel is a tumblr microblog that specializes in these sorts of posts). For example, posts from users craftyraven and differentblogtitle provide evidence both of this trend, and of different sorts of deployments of language in authorizing these experiences (craftyraven opts for the form that autism feel when which, sans autism, is often seen in other tumblr tag communities, while differentblogtitle prefers the more traditional does anyone else have this experience? [sic]). While this content could be easily mistaken for an attempt to substitute the blog for the diary, the fact that these are tagged for viewing by other members of the community of autistic neural subjects on tumblr indicates that something more akin to the consciousness raising efforts of second-wave feminism is taking place: autistic neural subjects use the community formed around the #ActuallyAutistic tag to communicate about experiences, with the goal of locating others who have shared these experiences, and form communities around them.

And, analogous to the creation of consciousness-raising groups, the best of these interactions result in activism. One recent example of this is a coordinated action to reduce the star-rating of the charitable group Autism Speaks, whose prioritization of cure culture is considered by the neurodiversity-minded #ActuallyAutistic tumblr community to be highly problematic. In this case, the tag functions as a site at which actions can be planned, and their results reported. Sam4733s post here provides a part of the official record of this particular action; AS disabled ratings after they reached the 1.4 stars reported by the aforementioned blogger. Indeed, if a peoples history of neurodiversity were to be written, the #ActuallyAutistic tags content may be one of the only surviving records of this action. For the community to remain safe for activism, however, there must be some mechanism by which participants in the community can identify and exclude dangerous elements; the blogger thatautismfeel publishes a warning from another user about a self proclaimed pedophile and incest fetishist who scours the #thatautismfeel tag, in order to both warn other community members and ensure that the transgressor is aware of having been noticed. Community policing is a trace of a more generalized callout culture that has been the subject of Internet discussion over the past year, and while this phenomenon has been criticized for resulting in unfair character assassinations, here, it functions as a safety measure[21].

There are, however, more facets to autistic culture online than shared experiences and activism. One user, really-fucking-confused, writes a poem that is decidedly in the camp of black humor:

We autistic people

Have special powers

We see things other people dont see

Like how murdering disabled kids is wrong (really-fucking-confused).

The poem is both a parody of the perception of the autistic savant, and itself an activist text, calling attention to filicide perpetrated against other autistic neural subjects. The humor is a subdued, angry humor, but the mode is a definite departure from the reportage or warning that we have already encountered. Further, some come to the tag to express elation at there even being such a tag, and, as user queerjoseph reports, finding other people who can relate to the experience of autistic neural subjectivity, which the user refers to as brain stuff. Here, the very existence of such a safe space on the Internet is occasion for celebration and comfort, and here, perhaps, lies the radical future potential for autistic neural subjects on the Internet.

Conclusions

If the present state of the intersection between autistic neural subjectivity and Internet use is any indication, we may, perhaps, be living in one of Kafers imagined futures[22]. We have now, through the use of social media and microblogging platforms, one of the first examples of massively deployed, multi-user networked alternative and augmentative communication; when autistic people can express their subjectivity in ways other than through the use of the spoken word, and subsequently share that expression of self with other, similar, neural subjects, what occurs is akin to the kind of work done in consciousness-raising groups during second-wave feminism. Autistic neural subjects are, to appropriate a phrase, doing it for ourselves, creating intentional digital communities that enable both activist work and cultural formation.


 

Appendix: Figures

statistic_id244209_tumblr_-distribution-of-us-users-2015-by-age.pngFigure 1: Age distribution of tumblr users, July 2012.

Lexar:134 Paper Grabs:TAF 1.tiff

Figure 2: craftyraven, demonstrating "that autism feel."

Lexar:134 Paper Grabs:TAF 2.tiff

Figure 3: differentblogtitle, expressing a similar sentiment to "that autism feel," using more conventional phrasing.

 

Lexar:134 Paper Grabs:ACTIVISM 1.tiff

Figure 4: sam4733 using the #ActuallyAutistic tag as a place to file reportage on activism.

 

Lexar:134 Paper Grabs:COMMUNITY POLICING.tiff

Figure 5: users transagenda and thatautismfeel working to police the community against unintended members.

Lexar:134 Paper Grabs:HUMOR 1.tiff

Figure 6: Some darkly humorous poetry, courtesy of tumblr user really-fucking-confused.

 

Lexar:134 Paper Grabs:THANK YOU 1.tiff

Figure 7: queerjoseph expresses joy over what has been found in the community.

 



[1] American Psychiatric Association. Diagnostic Criteria for 299.00 Autism Spectrum Disorder Diagnostic and statistical manual of mental disorders. 5th ed. Arlington, VA: American Psychiatric Association; 2013.

[2] Kras, Joseph. The Ransom Notes Affair: When the Neurodiversity Movement Came of Age. DSQ. 30:1. 2010. Web.

[3] Rocque, Bill. Science Fictions: Figuring Autism as Threat and Mystery in Medico-therapeutic Literatures. Disability Studies Quarterly. 30:1. 2010. Web.

[4] Among others, Folsom, Scott D. Sleuthing and Stimming: autistic!Sherlock Headcanons and the Cultural Politics of Autism Popular Culture Association/American Culture Association National Conference. New Orleans, LA. April 4, 2015. Conference presentation.

[5] Foucault, Michel. The Birth of the Clinic. London: Routlledge. 2003. Ebook.

[6] Romano, Michela, et al. "The Relationship Between Autism Quotient, Anxiety, And Internet Addiction." Research In Autism Spectrum Disorders 8.(2014): 1521-1526. ScienceDirect. Web. 28 Apr. 2015.

[7] Chen, Yi-Lung, Sue-Huei Chen, and Susan Shur-Fen Gau. "ADHD And Autistic Traits, Family Function, Parenting Style, And Social Adjustment For Internet Addiction Among Children And Adolescents In Taiwan: A Longitudinal Study." Research In Developmental Disabilities 39.(2015): 20-31. ScienceDirect. Web. 28 Apr. 2015.

[8] Finkenauer, Catrin, et al. "Brief Report: Examining The Link Between Autistic Traits And Compulsive Internet Use In A Non-Clinical Sample." Journal Of Autism & Developmental Disorders 42.10 (2012): 2252-2256. Academic Search Complete. Web. 28 Apr. 2015.

[9] Reynolds, Jane. "Virtual Reality." Learning Disability Today 14.6 (2014): 14. MasterFILE Premier. Web. 28 Apr. 2015

[10] Rocque, ibid.

[11] . Brownlow, Charlotte, Lindsay O'Dell, and Hanna Bertilsdotter Rosqvist. "COMMENTARY: Challenging Representations Of Autism -- Exploring Possibilities For Broadcasting The Self On Youtube." Journal On Developmental Disabilities 19.1 (2013): 90-95. Academic Search Complete. Web. 28 Apr. 2015.

[12] Davidson, Joyce. "Autistic Culture Online: Virtual Communication And Cultural Expression On The Spectrum." Social & Cultural Geography 9.7 (2008): 791-806. Academic Search Complete. Web. 28 Apr. 2015.

[13] Folsom, ibid.

[14] Barber-Stetson, Claire. "Slow Processing: A New Minor Literature by Autists and

Modernists." Journal of Modern Literature 38.1 (2014): 147-165.

[15] Haraway, Donna. . "Situated Knowledges: The Science Question in Feminism and the Privilege of Partial Perspective". Feminist Studies Vol. 14, No. 3. pp. 575599. 1988.

[16] For more information on the function of tagging in social media: Heymann, Paul and Garcia-Molina, Hector. Collaborative Creation of Communal Hierarchical Taxonomies in Social Tagging Systems Technical Working Paper. 24 April 2006. Web.

[17] Figures are in the appendix; source: Adweek. "Distribution of Tumblr users in the United States January 2015, by age group." Statista - The Statistics Portal. . Web. 28 April 2015.

[18] Wodak, Ruth. What CDA is about a summary of its history, important concepts and its developments. Methods of Critical Discourse Analysis. London: SAGE. 2001. Print.

 

[20] However, a possible jusitification for the use of text may be that text is less visually demanding than images or video; it is worth noting here that another of the diagnostic criteria for ASD is an acute sensitivity to sensory input.

[21] For an example of this critique, see Ronson, Jon. So Youve Been Publicly Shamed. London: Picador. 2015. Print

[22] Alison KaferFeminist, Queer, Crip (2014), "Introduction: Imagined Futures": 1-14

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