Hacking the master code: cyborg stories and the boundaries of autism

Abstract

In this paper, we consider how the use of Internet technologies by individuals on the autism spectrum (AS) may contribute to recoding the spatial, sociopolitical, ontological, and epistemological boundaries commonly assumed to delimit autistic from non-autistic lifeworlds. Drawing on the work of Donna Haraway, we argue that the responses of AS individuals to a survey about online communication suggest these individuals are engaged in a form of cyborg writing, admixing constraints and opportunities in a way that opens alternative, polycentric, and indeterminate but nonetheless important political possibilities for people on (and off) the AS.

Descifrando el Código Maestro: Historias Cíborg y los Límites del Autismo

En este trabajo, se considera cómo el uso de tecnologías de Internet por individuos en el espectro del autismo (Autism Spectrum, AS) puede contribuir a la re-codificación de los límites espaciales, socio-políticos, ontológicos y epistemológicos comúnmente asumidos para delimitar el mundo autista del no autista. Basándose en el trabajo de Donna Haraway, se argumenta que las respuestas de individuos AS a una encuesta acerca de la comunicación en línea sugieren que estos individuos están involucrados en una forma de escritura cíborg, mezclando limitaciones y oportunidades de manera tal que se abren posibilidades políticas alternativas, poli-céntricas e indeterminadas pero que no dejan de ser importantes para las personas dentro (y fuera) del espectro del autismo.

Pirater le code d'accès: histoires de cyborg et limites de l'autisme

Dans cet article, nous examinons comment l'utilisation des technologies de l'Internet par des personnes qui sont sur le spectre autistique (SA) pourrait contribuer à recoder les limites spatiales, sociopolitiques, ontologiques et épistémologiques censées délimiter les mondes autistiques des mondes non-autistiques. En nous inspirant des travaux de Donna Haraway, nous argumentons que les réponses des personnes sur le SA à une enquête sur la communication en ligne suggèrent que ces personnes sont investies dans une forme d'écriture cyborg et mélangent les contraintes et les opportunités de manière à ouvrir des possibilités politiques alternatives, polycentriques et indéterminées, néanmoins importantes pour les personnes sur le spectre autistique (ou pas).

Keywords::

• cyborg
• autism
• disability
• technology
• normalcy
• Internet

Keywords::

• Cíborg
• Autismo
• Discapacidad
• Tecnología
• Normalidad
• Internet

Keywords::

• cyborg
• autisme
• handicap
• technologie
• normalité
• Internet

Notes

^1. Throughout the article, we identify participants in the following manner: age/gender (if specified), survey ID number.

^2. We use ‘AS’ as an inclusive label to describe everyone on the spectrum, recognizing the great diversity of self-descriptions currently employed. The use of ‘AS individual’ is intended to include a wide range of individuals and experiences without constantly distinguishing between people, and drawing attention to distinctions rather than connections that, as we have found, are in any case contentious (for different perspectives on some of the controversies surrounding labelling, see Ghaziuddin 2010; Sinclair 1999).

^3. Others have argued that disabled subjects are more properly understood as ‘completed by technology’ (Davis 2002: 30; see also, Murray in press).

^4. Associated technologies include, but are not limited to, personal computers, smartphones, tablets and so on.

^5. The exclusions of an online survey are multiple and may include people who were unable to access the Internet (Selwyn 2004), who are not familiar with listservs, forums, and other websites to which our recruitment notice was posted, who do not speak English (the language of the survey), and/or who face communications or cognitive processing challenges that would have prevented them from participating in the survey. We also recognize the concerns regarding the self-selection bias of online surveys (Wright 2005).

^6. An additional 106 people started the survey, but did not complete it. We consider only completed survey responses in our analysis.

^7. This lack of closed structure in the survey may account for some of the surveys left unfinished.

^8. We thank an anonymous reviewer for raising this point.

^9. The term ‘neurotypical’ is widely employed by AS individuals to refer to communication, behaviours, environments, identities and so on not associated with the autism spectrum. The term is generally considered preferable to ‘normal’ for obvious reasons, and its use is often associated with the ‘neurodiversity movement’ (see Armstrong 2010).

^10. ‘Maul’ is this participant's term for a shopping mall. Her play on words highlights the negative associations she and others have with public, hyper-sensory environments such as shopping centres.

^11. Neurosurgeon Susan Greenfield (see McVeigh 2011) has suggested that there may be a link between increased Internet use and increases in the prevalence of autism.

^12. The notion of ‘mediated isolation’ or being ‘alone, together’ also reflects Goffman's (1963) ‘involvement shield’, which he uses to describe processes whereby individuals use their body and accessories to shield themselves from unwanted social interaction; a number of participants discuss using the Internet in this way.

^13. Participants were not asked how differences in the velocity of communication across different platforms (e.g., email vs real-time messaging or video interfacing) influenced their Internet experience; however, given the trend towards increasingly inter-active websites that encourage real-time user-generated content, this will be an important avenue for future research. Integrating facial analysis software with a quantitative representation of the emotional register, research at the MIT Media Lab suggests that technology can help AS individuals better understand and replicate the affective gestures of neurotypical communication (Madsen, el Kaliouby, Goodwin, and Picard 2008). Similarly, studies at the University of Toronto have used mediated-reality technology in an attempt to replicate autistic sensory experience for neurotypicals (Chung, Silva, and Chau 2006).

^14. The site uses the word ‘Aspergian’ and ‘autistic’ interchangeably ‘to signify a cultural identity, not a medical condition’. Available from: < http://www.aspergianpride.com/about/> Last accessed 27 March 2013.

^15. We thank an anonymous reviewer for underscoring this point.

^16. Online resources may also help women who tend to be overlooked in a medical model that understands autism as predominantly occurring in men (Bumiller 2008; see Davidson 2007 for more on the gendered aspects of autism diagnoses).

^17. For a review of AS individuals and ‘more-than-human’ emotional geographies, see Davidson and Smith (2009).