Autistic Agency: To Whom Does One’s Narrative Belong?
While appearing on Rob Beckett and Josh Widdicombe’s Lockdown Parenting Hell podcast last month, the television presenter and comedian, Jonathan Ross, revealed that he was ‘pretty sure’[1] that one of his daughters is on the autism spectrum.
Although Ross’s well-intentioned, anecdotal account of the relative ‘invisibility’[2] of autism in popular discourse throughout the early 1990s highlighted frequently overlooked issues in this area—including the topics of misdiagnosis and late diagnosis—I was nevertheless left with the impression of autism being perceived, above all, as an identity of difference. And this ‘autism as difference’ connotation seemed to go beyond mere neutrality to inadvertently embrace an implicit and negative idea of strangeness. This could be observed, for example, in his reference to his daughter being ‘very strange about people.’[3]
‘Strangeness’ as indicative of reduced individual agency
From the outset it could be contested that ‘strange’ is not an immediately negative adjective, for it could simply stress one’s deviation from ‘the norm’ without any added value judgment. For example, you could perceive me as being strange in our social interaction merely because you did not anticipate my nonconformity with certain of your expectations. However, subsequent reports by news outlets listing the ‘telltale signs of [this] . . . disorder’[4] and characterising autism as a ‘lifelong developmental disability that affects how people . . . interact with others’[5] seemed to reinforce the disquieting—albeit inadvertent—undertone that I originally perceived in Ross’s identification of autism with strangeness.
This negative undercurrent seemed to lie in the subtle impression that, but for the presence of autism, the autistic individual might not be so affected—so ‘strange’—in their interactions with (neurotypical) others. Through this causal implication, the ‘autism’ label itself appears to acquire an agency—specifically, a norm deviation-inducing capacity, by virtue of which Ross’s daughter, for example, could be characterised as ‘very strange’ as compared to others. It is as though she is perceived in this way because of autism. And, by extension, one might further assume that it is the impact of autism which renders a person ‘strange,’ when they might otherwise not be.
Following this agentic depiction of the ‘autism’ label, one might presume an implicit separation between ‘autism’ itself and the autistic individual. In fact, such a sentiment can possibly be elucidated in the statement, ‘I wish my child did not have autism.’[6] Therefore, in identifying autism with strangeness—specifically, in attributing his daughter’s strangeness ‘about people’ to autism—and in thereby facilitating a ‘because of autism’ explanation—specifically, through the implication that his daughter might be so ‘strange’ because she is autistic—it is arguable that Ross indirectly characterises autism as possessing an agency beyond the autistic person. And through this bipartite separation of an autistic person’s agency, the following disempowering impression may be capable of being generated: that it is the influence of autism which may have caused the autistic person to deviate from the norm, to be neurodivergent when they might otherwise have been neurotypical.
Thus, in the light of the dominant reification of the norm[7]—reflected in a default presumption against strangeness—that we observe in the surrounding neurotypical world, autism itself may be seen as something of an affliction.[8] Such a perception may be elucidated in certain contemporary portrayals of autism. For example, journalistic references to the ‘telltale signs’ that parents are encouraged to look out for—thereby invoking language observable in articles about meningitis or some other dreaded illness—only seem to reinforce the impression of autism itself as bearing an all-consuming, destructive agency. In fact, such language could perhaps metaphorically conjure up the image of a menacing, hidden beast that occasionally rears its ugly head in the form of a child’s ‘symptoms’—such as the ‘flicking’ of ‘their fingers or rocking [of] their body’[9]—bubbling at the surface, before vanishing again into the depths of each person. ‘Be on the lookout, parents,’ I imagine such articles to tacitly warn, ‘you might have an alien in your midst!’
Following Ross’s association of autism with strangeness—which may inadvertently connote a reduction in an autistic person’s agency, an agency that has been taken by autism itself—it may be inevitable that one’s identity becomes framed not as that of an autistic individual, but rather as that of an individual with—and therefore under the all-consuming influence of—the ‘affliction’ that is autism. Thus, ‘autism as strangeness’ may invariably, and regrettably, signify ‘autism as disempowerment.’
‘Strangeness’ as a form of gaslighting
When ‘autism as strangeness’ appears to connote ‘autism as affliction,’ the autistic individual may be forced to question their own identity as follows: do I own my own narrative, or does it belong to this separate, agentic label of ‘autism’? And, even more worryingly, when ‘autism as strangeness’ signifies that a person may be ‘strange’ because of autism—because they are affected by autism—what is to stop somebody then assuming that an autistic person may have felt mistreated or bullied merely because they are autistic? ‘It’s all in your head,’ they might say.
It is thus arguable that ‘autism as strangeness’ can be likened to a form of gaslighting. In fact, one might deduce that, in so classifying an autistic individual as affected[10] by a disorder[11] that renders them strange as compared to others, an observer is capable of gaslighting them in a manner that echoes the person who tells a woman that she is only acting in a certain way because she is ‘on her period.’
Embedded ableism: the autistic individual’s narrative in an asymmetrical self-other dynamic
For many autism self-advocates and proponents of the neurodiversity movement, autism is not an affliction that imposes itself upon the (otherwise neurotypical) individual, but is rather an inextricable aspect of one’s identity.[12]
However, through the ‘autism as strangeness’ depiction—which implicitly equates being ‘normal’ or ‘neurotypical’ with being ‘healthy’ or the ‘natural order of things’[13]—we may encounter the subtle inflections of ‘autism as loss’—the loss, in particular, of the otherwise neurotypical or healthy individual.[14] This is because, through the emphasis on the ‘abnormality’ of autism, with ‘signs’ that can be noticed by (neurotypical) others, the autistic person invariably becomes defined, by default, in relation to the neurotypical ‘self.’ They become a strange shadow of this ‘self,’ identifiable only in terms of their perceived deviation from the norm, in terms of the facets that they are apparently ‘missing.’[15] As such, ‘autism as strangeness’ otherises the autistic person’s narrative in an ‘asymmetrical’[16] self-other dynamic.
By essentialising the perceived ‘strangeness’ of autism in an attempt to promote the visibility of autistic individuals’ narratives, Ross may have inadvertently cemented their invisibility. In particular, by identifying autism with strangeness, the narrative of the autistic person is viewed through the lens of the neurotypical observer—it is co-opted, becoming the narrative of the neurotypical ‘self’ observing the neurodivergent ‘other.’ As such, through ‘autism as strangeness’ the autistic person’s narrative becomes that of the neurotypical ‘self,’ with the autistic individual remaining invisible.
Thus, in stipulating that his daughter is ‘very strange about people,’ Ross imposes the burden of conforming to the neurotypical norm upon her. The strangeness automatically becomes her own, not that of the onlooker. And, most importantly, the neurotypical ‘self’ becomes the default judge of whether she lies inside or outside of the boundary of what is ‘normal’—but, being the neurodivergent ‘other,’ she is already doomed to fail.
To whom does one’s narrative belong?
In the broader context of a neurotypical world that often fetishises the idea of autism—such as through TV portrayals of the ‘autistic savant’[17]—while simultaneously otherising autism as an unrelatable—strange—phenomenon, it is no wonder that an autistic person may become alienated. In fact, it is understandable why many, faced with the prospect of consistently occupying the position of the invisible ‘other’ in an asymmetrical self-other dynamic, may choose to camouflage[18] their identities in an effort to be seen as an equally valid ‘self.’
Therefore, from the perspective of an autistic individual, to whom does one’s narrative belong? Arguably, in a world in which the autistic person invariably embodies ‘difference’ or strangeness, it is as though one’s narrative belongs to the neurotypical observer, the ‘self’ according to whom one is automatically judged as the ‘other.’ As such, to avoid this immediate disempowerment, perhaps we should recognise that divisive use of the term, ‘strangeness,’ has no meaning in discussions about autism at all; rather, in a world in which there is no ‘normal’ or ‘typical’ identity, we are all different—indeed, we are all very strange.
Perhaps we should recognise that divisive use of the term, ‘strangeness,’ has no meaning in discussions about autism at all; rather, in a world in which there is no ‘normal’ or ‘typical’ identity, we are all different—indeed, we are all very strange. Image source: Jeremy Sicile-Kira
When ‘autism as strangeness’ signifies that a person may be ‘strange’ because of autism—because they are affected by autism—what is to stop somebody then assuming that an autistic person may have felt mistreated or bullied merely because they are autistic?—‘It’s all in your head,’ they might say. Image source: Stephen Tamiesie/Gallery Stock
By identifying autism with strangeness, the narrative of the autistic person is viewed through the lens of the neurotypical observer—it is co-opted, becoming the narrative of the neurotypical ‘self’ observing the neurodivergent ‘other.’ As such, through ‘autism as strangeness’ the autistic person’s narrative becomes that of the neurotypical ‘self,’ with the autistic individual remaining invisible. Image source: Sea Son
Following Ross’s association of autism with strangeness—which may inadvertently connote a reduction in an autistic person’s agency, an agency that has been taken by autism itself—it may be inevitable that one’s identity becomes framed not as that of an autistic individual, but rather as that of an individual with—and therefore under the all-consuming influence of—the ‘affliction’ that is autism. Image source: campaign
In the broader context of a neurotypical world that often fetishises the idea of autism—such as through TV portrayals of the ‘autistic savant’—while simultaneously otherising autism as an unrelatable—strange—phenomenon, it is no wonder that an autistic person may become alienated. Image source: Stephen Wiltshire / HuffPost
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[1] Sarah Young, ‘Jonathan Ross says one of his daughters is on the autistic spectrum but was misdiagnosed as a child’ (Independent, 18 May 2020) <https://www.independent.co.uk/life-style/health-and-families/jonathon-ross-autism-spectrum-misdiagnosed-daughter-betty-honey-podcast-a9519466.html> accessed 21 May 2020.
[2] Valerie Paradiz, ‘Things I hear as a woman with autism: “You don’t seem autistic to me”’ (Autism Speaks, 9 October 2018) <https://www.autismspeaks.org/blog/things-i-hear-woman-autism-you-dont-seem-autistic-me> accessed 20 May 2020.
[3] Young (n 1).
[4] Ellie Phillips, ‘“Autism wasn’t talked about in the 90s”: Jonathan Ross reveals one of his daughters is on the autistic spectrum but was misdiagnosed as a child’ (MailOnline, 17 May 2020) <https://www.dailymail.co.uk/tvshowbiz/article-8327945/Jonathan-Ross-believes-one-daughters-autism-misdiagnosed-child.html> accessed 22 May 2020.
[5] Young (n 1).
[6] Jim Sinclair, ‘Don’t Mourn for Us’ (1993) 1(3) Our Voice <https://www.autreat.com/dont_mourn.html> accessed 8 May 2020.
[7] Damian Milton and Lyte Moon, ‘The Normalisation Agenda and the Psycho-Emotional Disablement of Autistic People’ (2012) 1(1) Autonomy <http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/9> accessed 8 May 2020.
[8] Jessica Benham, ‘Proud to be Autistic: Metaphorical Construction and Salience of Cultural and Personal Identity in #StopCombatingMe’ (All Theses, Dissertations, and Other Capstone Projects, Minnesota State University 2015) 50.
[9] Young (n 1).
[10] ibid.
[11] Phillips (n 4).
[12] Benham (n 8) 17.
[13] Robert McRuer, Crip Theory: Cultural Signs of Queerness and Disability (New York University Press 2006) 1.
[14] Damian Milton and Lyte Moon, ‘The Normalisation Agenda and the Psycho-Emotional Disablement of Autistic People’ (2012) 1(1) Autonomy <http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/9> accessed 8 May 2020.
[15] Benham (n 8) 52.
[16] Damian Milton, ‘Disposable dispositions: reflections upon the work of Iris Marion Young in relation to the social oppression of autistic people’ (2016) 31 Disability & Society 1403, 1403.
[17] Karl Knights, ‘Rain Man made autistic people visible. But it also entrenched a myth’ (The Guardian, 17 December 2018) <https://www.theguardian.com/commentisfree/2018/dec/17/rain-man-myth-autistic-people-dustin-hoffman-savant> accessed 2 April 2020.
[18] ‘Gender and autism’ (National Autistic Society) <https://www.autism.org.uk/about/what-is/gender.aspx> accessed 3 April 2020.