Narrative medicine

This question is one of the central concerns of this project I’m working on. I am interested in how autistic people can explore and express who they are through writing and other media.  I don’t assume that any of us has one essential self that is waiting to be revealed through these means, nor through clinical accounts. But by putting our experiences into writing, we can improve recognition and respect for autistic people and may be able to get resources allocated more helpfully. Writing can be especially important where we have difficulty keeping up with the usual pace of communication and therefore cannot easily speak up for ourselves.

Dialogical selves
I am interested in the idea of dialogical selves, where we develop a sense of having multiple selves that can be in dialogue or conflict with each other within our mind. They come about through interactions with others and our environment. However, often it is other people’s perspectives that dominate how we are seen and how we see ourselves, particularly when
we don’t use language in the same way as they do. By contrast, the standard theory of narrative identity assumes we each have one self-contained, definable, enduring identity. This idea is the usual approach in cognitive psychology or cognitive literary studies (where we look at literary texts in light of what we think we know about how authors’ and readers’
minds work).

My own identity or one framed by others?
My perspective, however, has quite a lot in common with other perspectives – eg with Eastern philosophy and its concept of how self-identity is interwoven with the environment, along with community or cultural identity; and also with ‘logotherapy’ – the idea that we want to find purpose and meaning in our lives, and benefit from doing so.  I am interested in how the practice of narrating life in words or mixed media can contribute to cultural recognition and political representation for autistic people. On the other hand, looking at how outsiders view our identity instead of how we view it from inside, I am interested in how the presentation of autism as ‘disorder’ leads people to read autistic life writing through a frame of negative expectations (Daniel Kahneman). And they label what we say as misleading if it does not conform to those preconceptions (James Phelan).

I am interested in how life writing may combat stigma in the ‘situation of the individual who is disqualified from full social acceptance’ (Erving Goffman). Through writing, you can reassert a voice that has been silenced by diagnosis and suppressed during treatment. You can help others realise that people have valid and positive identities whether or not they are labelled with autism, ADHD or epilepsy or whether they can or cannot recognise faces or emotions or conjure up visual imagery (prosopagnosia, alexithymia or aphantasia, respectively). And as we know from disability studies more generally, that people may experience impairments or impairment effects is not inconsistent with them flourishing.

Can clinical diagnosis help or hinder?
I’m also interested in how an ‘enlightened clinician or peer’ can help us make sense of our life through showing us how we give meanings to events that may seem alien or worthless from a conventional perspective. However, I am concerned with how clinical diagnosis often reinforces the idea of spoiled identities; how it makes links between neurodivergence and criminality or other forms of social disorder; and how it can see autistic traits as tragic flaws in an Aristotelean sense (too rational, too ethical, etc).

I am exploring the role of the diagnosing clinician in texts such as Nobody, Nowhere by Polly Samuel or Look Me in the Eye: My Life with Asperger’s, by John Elder Robinson. How does the clinician’s authority work alongside or question the agency and authority of the individual life writer? What can you learn from therapeutic dialogue – a conversation where the clinician is trying to work out common understandings with an autistic person – that is different from other life writing? Does ‘co-authorship’ or ‘collective authorship’ or writing based on dialogue pose different challenges – either helping the writer to express their own ideas or hindering them by imposing other interpretations?

Writing as prosthesis
A prosthesis is an artificial body part used as a substitute for a missing or damaged limb or organ. Is it helpful to think of writing as a prosthesis for someone with autism or other neurodiverse condition, who would otherwise have difficulty in communication? You could see it as a skill or tool, whether typewritten or handwritten, which you can graft onto yourself and use to gain agency or empowerment – the ability to influence the world. Tito Mukhopadhayay and Naoki Higashida, for example, use writing to show people a different perspective on autism.

But questions arise on how far writing enables you to be true to yourself:
Because a prosthesis is artificial, not part of your core self, does that make your writing prosthesis inauthentic or unreliable? Wouldn’t that be the same problem for all writers?
Should we accept that writing is part of the conventional apparatus of our language and culture and should we, therefore, write as other people do within the conventions of our language, where subject and object are distinct and we (the subject)
manipulate what we write about (the object)?
Or, following Barad (2007: 25), could we see life writing not as directly reflecting reality but in terms of diffraction – like waves that may change shape around an obstacle but are still bodies of fluid with the same mass and energy? In these terms,
subject and object interact. Our sense of self can change shape as we encounter new objects or ideas.
Writing ideas down can be a way to understand them, and can at the same time give rise to new ideas: forming as well as formulating our thoughts. I will be exploring this theme more fully in a future post.
In autistic life writing, are we not so much describing our differences as exploring the way differences affect our world (Haraway 1992: 299)?
Way to think through ‘relationality’ and ‘difference’ where we wish to also emphasise continuity and particularity (rather than proposing that there is some sort of essentialised self). Can writing enable us to explore our various and varying
relationships with the world while showing we each remain a single (though multifaceted) individual?

In what way might writing be thought of as ‘diffractive”, boundary-making practice’ (Barad 2007: 25) rather than as a representation/reflection of reality? Could autistic life writing be seen as a ‘diffraction pattern which does not map where differences appear but rather maps where the effects of differences appear' (Haraway 1992: 299)?
Autistic subjectivity, like all marginalised subjectivity, becomes ‘a critical difference’ where material difference ‘“can make itself felt in and as a language (Barad: 208). This would also involve ways to think through ‘relationality’ and ‘difference’, where we wish to also emphasise continuity and particularity (rather than proposing that there is some sort of essentialised self).

Related questions
Why is writing questioned in non-speaking authors but taken-for-granted for in speakers?
Is this because it has been associated with facilitating verbal communication, which has been associated with manipulation?
Are there particular technologies that help to avoid this? Why is a written utterance always considered more ‘mediated’ than speech and if so, why? Does this judgement apply only to certain forms of writing, such as published texts?
Does a book-length text offer opportunities to intervene in received understandings of a life in ways that shorter forms do not?
Do ‘co-authorship’ or ‘collective authorship’ or writing based on dialogue pose different challenges for the possibility of developing agency?
Could the editorial process be made more appropriate for autistic and other marginalised authors (for example, by, allowing for conversations to take place over longer timescales to allow for the business of life)?

You and your readers
When you write for an audience, do you have to doctor your raw experience by putting it in terms your readers can relate to – making it either more shocking or more palatable? Is your writing then less representative of real life? Or, in practical terms, do you gain more than you lose by adjusting it for publication, in that this enables you to get your voice heard?

What can life writing by autistic writers teach us about life writing in general?
In particular:
The rhetorical narrative approach to the study of literary texts asks why someone is telling a particular story to particular people for particular purposes, and also recognises its ethical effects on the reader. How could this approach help us to
understand how readers respond to texts by autistic writers? How far is their response prejudiced by taking a clinical perspective?

In coming to understand how self-narration is challenging for autistic writers, what can we all learn about how to tell a story that we accept as a true account of experience and also representative of autism more widely?
Can autistic writers open readers’ minds to new ways of thinking?