Online Autism: a search for identity?

In a recent small-scale study for my Masters of Research, I looked at the discussions within an online discussion forum for autism related issues. I won’t reproduce the data here (ethical reasons) but I gained some interesting and unexpected insights.

Whether the users of the forum could legitimately be diagnosed as ‘autistic’ within accepted medical definitions was deliberately not a consideration of my observations. Below is an edited presentation of some of the observations in the original essay, plus references used.

Exploring the Data

The ideas focused on in this analysis were the ‘search for identity through diagnosis’ and the idea of a perception of ‘personal struggle’.

This impression of difficulty (a voice that does not feel empowered or free to choose), is something that weaved throughout the forum data but in different contexts and subjects. The themes of being misunderstood or struggling in some were observed at many points during the text.

There were specific references to being misunderstood or not understood at all by doctors, family or co-workers and ones-self. There seemd to be a very apparent need expressed for self-identification through a clear definition or discovery through medical diagnosis. A barrier to accessing this aspiration for help seems to be present in the dislike of doctors formed through personal experience of a perception or inability to effectively interact with others and a perceived lack of ‘niceness’ or ‘helpfulness’ of doctors.

There was an interesting divergence in possible themes and methods to explore here – the data seemed to present themes that might best be explored from a ‘social critical stance’ in the relationship to doctors – is there an oppressive discourse? How do doctors appear to the ‘patient’ i.e. are they a representation of the medical establishment? Do users feel powerless in the face of medical knowledge or is medical exposition emancipatory?  A mixture of both in different situations? Also – the thread of self-identification through medical diagnosis, is autism a useful ‘identity’ beyond a medicalised condition?

On interaction with ‘other’ voices through the forum, the user seems to express a more positive, pragmatic voice echoing suggestions and suggesting solutions. Two distinct voices can also be observed coming from the same user profile in the same dialogical space. So we recognise the fluctuations in meaning and intent that may occur as this dialogue continues its journey.

Far from the uncertainty, consternation and yearning desire for explanation in the original subject thread – the last post uttered from the profile of USER 1 adopts a supportive, self-reflexive and collaborative voice, even with an air of authority about autism issues.

This discourse may, in part, be a search for self-definition or an expression of a desire for self-identification through the discourse of autism. Going a bit deeper – Can we see autism as another discourse available in the identification or conduct of selfhood? Can we separate the idea of autism from the medical definition of autism? How can this belief (medically validated or not) affect self-identity?

The user voices a suspicion, of being autistic (is this the same as ‘having’ or ‘possessing’ autism?) and self-identifies similar traits to autism (as evidenced in the recorded data). The user seems to express a faith that medical diagnosis will offer the ultimate ‘solution’ in spite of a mistrust of doctors as individuals or representatives of an establishment. The experience of challenges expressed through the user’s profile seem to be with an interaction with people in general. GPs and doctors in particular are mentioned but not necessarily as representatives of the medical establishment as such. The doctor figure appears to stand in between the user and their access to enlightening knowledge of the self.

In identifying one single general discourse of a perception of ‘personal struggle’ we could approach a deeper understanding of the discourses, situations or ‘states of being’ that are existent in which this ‘voice’ finds both a home and other voices to commune with within this forum. We could look at other users’ profile output – other ‘voices’. We could look for different voices, different discourses: we could moderate our methodologies to accommodate or explore the idea of multifaceted identities online.

There may also be issues related specifically to autism as a discourse. Can autism be seen as form of medical discourse available to be appropriated by the individual in the search for an identity to express? The ability to access self-diagnosis online is clearly possible – could we relate this to a wider discourse of the medicalization and self-diagnosis? Is this an issue that can be treated with a suspicion relating to the reliance on scientific knowledge to provide even the most existential of answers?

Further Study

To look at off-line interactions either in isolation or in concert with the production of on-line data would be a possible avenue of further research but I would stress that the ontologies, assumptions and methodologies of the study as it stands are of a specific discourse of online text, generated in part by the data itself. Should it be assumed that an analysis of further modes of communication in conjunction with the current data is in some way ‘more>than’, I believe it would be detrimental to the importance of this online data-set and its ability to say or mean anything.

Throughout the original ‘raw’ data (edited for this analysis) users that self-identify do so as female, references from all users about personal experience depict the doctor or GP as male (him, or he). The National Autistic Society cites strong evidence for autism as affecting more males than females and so the search for diagnosis and identity within the world of autism becomes a particularly and differently female concern. Again, any further study would require a rethinking of methodology or ontology if it is to acknowledge and engage with ‘Social Discourse’ in a way that a study informed by social or feminist theory may do. This may include a mixed method to challenge or confirm existing data quantitatively as regards the proportion of women affected by autism as a basis for a hypothesis or approach: but would perhaps not be compatible with the tenets of feminist theory which assumes a strong patriarchal influence in the discourse of scientific-positivist knowledge.

It would also be interesting to introduce the question of communities of practice and development of the learner within online discursive space. We could question whether we can look at these interactions as an ‘indoctrination’ into a culture or a learning of a modal language and whether these are ‘online communities’ in the same sense as ‘offline communities’.

Non-annotated Bilbiography :

Best, A.L., (ed) (2007). Representing youth: methodological issues in critical youth studies. Chapter 7: The Outsider Lurking Online: Adults Researching Youth Cybercultures, pp182-202. NY: New York University Press

British Psychological Society (The) (2009). Code of Ethics and Conduct. Available at:http://www.bps.org.uk/ [Accessed 20/4/14]

Cohen, L., Manion, L., & Morrison, K. (2011). Research Methods in Education (7th ed). London:Routledge

Economic and Social Research Council (The) (2012). ESRC Framework for Research Ethics (FRE). Avilable at: http://www.esrc.ac.uk/ [Accessed 20/4/14]

Jewitt, C (2012) Multimodal methods for researching digital technologies. In: The Sage Handbook of Digital Technology Research. Sage, London. Ch17, pp250-264

Gee, James Paul., (2005). Semiotic Social Spaces and Affinity Spaces: From The Age of Mythology to Today’s Schools. In: Barton, D., Tusting, K., (2005) (ed). Beyond Communities of Practice Language, Power and Social Context. Cambridge: Cambridge University Press.

Gillen, J., Petersen, A. (2005). Discourse Analysis. In: Sommehk, B., Lewin, C., (2005). Research Methods in the Social Sciences. London: Sage. Ch17, pp146-152.

Lankeshear, C., Leander, Kevin. M., (2005). Social Science Research in Virtual Realities. In: Sommehk, B., Lewin, C., (2005). Research Methods in the Social Sciences. London: Sage. CH38 pp326-333.

MacLure, Maggie, (2003). Discourse in Educational and Social Research. Buckingham: Open University Press. (pp174-191)

Milne, E., (2003). ‘Email and Epistolary technologies: Presence, Intimacy, Disembodiment’. Fibreculture Journal (no2). Swinburn University of Technology. Available at: http://researchbank.swinburne.edu.au

Nonnecke, B. and Preece, J. (1999). Shedding light on Lurkers in Online Communities. Ethnographic Studies

in Real and Virtual Environments: Inhabited Information Spaces and Connected Communities. 24-26 January, Edinburgh. Ed. K. Buckner. 123-128.

National Autistic Society (The) (website), 2014. The National Autistic Society Website. Available at: http://www.autism.org.uk/ . [Accessed 20/04/14]

Robson, Colin., (2011). Real World Research. West Sussex: John Wiley.

St.Pierre, E.A., (2013). Cultural Studies ó Critical Methodologies 2013 13:223, 8th May(Online journal), ‘The Appearance of Data’ (Article). Available at: http://csc.sagepub.com

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