The Value of Autism
Editor’s Note: This article is the second of a two-part series which explores the nuanced variations of experience that often characterise autism spectrum. The aim of this series is to provide an insight into the variegated complexities and attributes that render each autistic individual’s life experience a unique and personal one. The first article, ‘The Alienation of Autism,’ can be read here.
What does it mean to be ‘neurotypical’[1]? For many autistic individuals, the pressure to camouflage one’s innate differences or difficulties in social engagement and communication—and thus to attempt to ‘fit in’—is a persistent, and frequently exhausting, reality. As discussed in ‘The Alienation of Autism,’ the sense of alienation that one may experience in a world that frequently misunderstands or excludes the differences or difficulties of an individual who identifies as being on the autism spectrum necessarily involves an element of interpersonal perception—of how one perceives others, and of how others perceive oneself.
‘Do you see me as an alien?’: The ‘us’ and ‘them' of difference
Your perception of me as neurotypical or as ‘neurodivergent’[2] implicitly presumes a relative benchmark according to which I may be normatively compared[3] or assessed. Here your determination of my ‘neurodivergence’ necessarily begs the question, ‘is this person neurodivergent relative to what or to whom?’ Assuming this ‘line’-drawing exercise to be a matter of ‘social convention,’[4] what informs this separation, such that I find myself located in either the neurotypical or the neurodivergent realms of difference?
In the light of the fluctuating and context-specific nature of social norms, what is the benchmark for the neurotypical human? Are they capable of forming romantic relationships and friendships with the apparent ease that we observe in Hollywood films? Does she attend graduation without feeling overwhelmed by the noise of crowds? Is he able to maintain eye contact during a conversation, and for how long? One second? Five seconds? And if this benchmark is inherently dynamic, as opposed to static, what are the implications for how we draw our line—assuming that we are capable of doing so—between the neurotypical individual and their neurodivergent neighbour?
More fundamentally, given that all persons ‘in the general population have some level of autistic traits’[5]—such that, according to the neurodiversity paradigm we are all simply different—how ‘different’ is ‘different enough’ such that I am deemed neurodivergent as opposed to neurotypical? And assuming that we are unable to cleanly demarcate this distinction, what stops us from abandoning it entirely and viewing one another as mere ‘variations’[6] of neurotypical, being the same in that we are both different?
Furthermore, would my categorisation as neurodivergent, in contrast to yours as neurotypical, entrench my otherisation in our self-other dynamic, such that, while we are both humans, I am of the neurodivergent sort—or dare I say ‘species’[7]?—in contrast to your neurotypical? While we may both occupy a diverse spectrum of potential differences, what is to stop mine being classified—perhaps indirectly, and through your lack of ‘empathy’[8] towards me—as those of an ‘alien,’[9] as opposed to a ‘human’[10]?
Using the analogy of a ‘freshwater fish in salt water,’[11] would I be that freshwater fish—a gourami, for example—in the very different, and unsuitable, environment for saltwater fish—like tuna—thereby existing as a fundamentally different species to you? Or would we in fact be one and the same—like two very different, but also very similar bull sharks, being the same species in both waters, but with our different needs or complexities?
In the light of this analogy of the freshwater fish in saltwater circumstances, it is arguable that a depiction of the self-other dynamic between the autistic and the non-autistic individual as separate realms across a continuum of difference may reinforce, rather than alleviate, the alienation of the former. This is arguably because of the juxtaposition between, on the one hand, the fluidity of our differences, and on the other, the apparent divide between the ‘neurotypical’ and ‘neurodivergent’ domains of difference. I am thus left querying whether—like bull sharks—you and I are both the same species, in spite of our differences, or whether—like the saltwater and freshwater fish—your species’ differences—as saltwater fish—are very different from my species’ differences—as freshwater fish. Am I thus an alien to you or are we both human? Are we fundamentally divided as ‘us’ and ‘them’[12]?
Therefore, in our self-other perception, what is to prevent my alienation from you and your alienation from me as we occupy contrasting realms of difference? Would I be seen as your equal despite my being neurodivergent? Would you still empathise with my struggles, as though I were neurotypical? Would you even notice me?
The ‘double empathy problem’: The implicit otherisation of neurodivergence
It is arguable that this mirror of self-other interaction—which traverses a spectrum of neurodiversity—instead of reflecting an equality of mutual perception, may in fact permit unequal recognition of identity, and, by extension, of belonging. This is because this self-other balance—which is surrounded by a majoritarian, neurotypical world—is arguably tipped in favour of the neurotypical other, such that my categorisation as the neurodivergent self—thereby occupying a minority position—otherises me, not just from my neurotypical comparator, but also, more broadly, from the dominant social expectations of a very different world.
Here it could be argued that my being perceived as neurotypical by this other—thereby being empathised with as a person of the same ‘dispositional outlook’[13]—would render visible my identity as their relatable reflection. I would mirror them, albeit imperfectly given the range of potential differences that would lie within our neurotypical realm; however, I would be a visible reflection nonetheless—one which abides, as expected, by the social cues of this neurotypical world. If, being neurotypical, I were to experience emotional pain, perhaps you would be able to empathise with me—we would reflect one another in our mutual understanding. However, if I, being neurodivergent, were to experience sensory overload owing to—in your opinion—the seemingly mundane sounds of a busy road, would you, being neurotypical, similarly empathise with me?
Through an exploration of empathy, one may elucidate the otherisation of the autistic individual highlighted in Jim Sinclair’s seminal discussion of the grieving parent in ‘Don’t Mourn for Us.’ Here one could argue that the parent who says ‘I wish my child did not have autism’—whom Sinclair translates as in fact stating that ‘I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead’[14]—may indirectly be mourning under this alien-human paradigm. For in so expressing an implicit preference for a non-autistic, over an autistic, child—a child whom they may see metaphorically to be human, as opposed to alien—it could be argued, tentatively, that the neurotypical child may have more subjective value to this grieving parent, than the autistic child.
In fact, one might assume that Sinclair’s model of the grieving parent would consider this neurotypical path—involving the dreams that the majority of parents hope to realise, in the form of recognisable educational, career, and relationships milestones—to be more valuable than the path of an autistic child—which may involve less recognisable educational, career, and relationships progressions.
Of course, to jump from an exploration of one’s feeling of empathy to a discussion of what one may subjectively value is rightly open to criticism—in fact, I am doubtful whether this empathy-value correlation can even be assumed. However, I believe that we can elucidate this correlation in Sinclair’s depiction of the loss—and its accompanying grief—felt by the parent whose ‘expectations’ are not met. For with this loss of the ‘fantasized normal child,’ the focus of the parent appears to be on what, despite having an autistic child, they do not have—they mourn their loss of a human despite, and arguably because of, the gain of this alien. And thus, one can observe a possible motivation behind Sinclair’s shift in the parent’s focus, away from this sense of loss, towards their gain of the ‘adventure of a lifetime’—that an autistic child, although different, is just as valuable as ‘an expected normal child,’[15] and should be subjectively understood as such.
These possible feelings of loss, grief, and differential subjective value concerning the experiences of the neurotypical human and of the neurodivergent alien may implicitly influence the pressure an autistic individual may experience to camouflage their own differences or difficulties. This is because, in an unequal self-other dynamic where the neurodivergent individual is invariably otherised, their ability to ‘survive and potentially thrive’[16] in a neurotypical world may require that they ‘compensate for or mask’[17] their identity characteristics. In so doing, they may potentially increase their likelihood of being perceived as bearing a value which is recognisably equal to that of neurotypical others, thereby preventing their marginalised, alien value from remaining invisible.
The value of autism
But what is the value of autism that may be so ‘invisible’ in a neurotypical world?
Before highlighting this value, I acknowledge the heterogeneity of autistic narratives—the attributes and complexities of which are unique to each individual—as well as the significant struggles that are experienced by many parents of autistic children or autistic individuals—who may have substantial difficulties, such as ‘almost no language’ or ‘severe learning difficulties.’[18] In the light of the diversity of the life experiences of those who identify as being on the autism spectrum, I stress one out of an arguably infinite number of possible subjective and objective values which I hope will be deemed indisputable—the value of neurodiversity.
More specifically, it is my opinion that the nuanced, spectral nature of autism—which reflects incredibly diverse possibilities of human perception, creativity, innovation, intelligence, sensitivity, originality, difference, and so on, arguably ad infinitum—provides immensely valuable insights into our selfhood, our interactions with others, and our fundamental human nature. As such, I believe that, by recognising this value of autism, while remaining sensitive to the complexities experienced by each individual, we open up our perceptions to the differences that make us all unique.
The sense of alienation that one may experience in a world that frequently misunderstands or excludes the differences or difficulties of an individual who identifies as on the autism spectrum necessarily involves an element of interpersonal perception—of how one perceives others, and of how others perceive oneself. Image source: Jeremy Sicile-Kira
In the light of the fluctuating and context-specific nature of social norms, what is the benchmark for the neurotypical human? Are they capable of forming romantic relationships and friendships with the apparent ease that we observe in Hollywood films? Does she attend graduation without feeling overwhelmed by the noise of crowds? Is he able to maintain eye contact during a conversation, and for how long? One second? Five seconds? Image source: Getty Images
In an unequal self-other dynamic where the neurodivergent individual is invariably otherised, their ability to ‘survive and potentially thrive’ in a neurotypical world may require that they camouflage their identity characteristics—in so doing, they may potentially increase their likelihood of being perceived as bearing a value which is recognisably equal to that of neurotypical others, thereby preventing their marginalised, alien value from remaining invisible. Image source: Alessandra Genualdo
Using the analogy of a ‘freshwater fish in salt water,’ would I be that freshwater fish—a gourami, for example—in the very different, and unsuitable, environment for saltwater fish—like tuna—thereby existing as a fundamentally different species to you? Or would we in fact be one and the same—like two very different, but also very similar bull sharks, being the same species in both waters, but with our different needs or complexities? Image source: FishingBooker
In the light of the diversity of the life experiences of those who identify as on the autism spectrum, I stress one out of an arguably infinite number of possible subjective and objective values which I hope will be deemed indisputable—the value of neurodiversity. Image source: Western City
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Sources Cited
[1] Simon Baron-Cohen, ‘The Concept of Neurodiversity is Dividing the Autism Community’ (Scientific American, 30 April 2019) <https://blogs.scientificamerican.com/observations/the-concept-of-neurodiversity-is-dividing-the-autism-community/> accessed 10 May 2020.
[2] Ginny Russell, ‘Critiques of the Neurodiversity Movement’ in Steven K Kapp (ed), Autistic Community and the Neurodiversity Movement (Palgrave Macmillan, 2020) 288.
[3] Damian Milton, ‘Impaired Compared to What? Embodiment and Diversity’ (2015) Mad Studies and Neurodiversity Symposium Archive <https://madstudies2014.wordpress.com/archive/mad-studies-neurodiversity-symposium-archive/> accessed 8 May 2020.
[4] Damian Milton, ‘Embodied Sociality and the Conditioned Relativism of Dispositional Diversity’ (2014) 1(3) Autonomy <http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/AR10/html> accessed 9 May 2020.
[5] Laura Hill and others, ‘Development and Validation of the Camouflaging Autistic Traits Questionnaire (CAT-Q)’ (2019) 49 Journal of Autism and Developmental Disorders 819, 822.
[6] Baron-Cohen (n 1).
[7] Maria Rhode, ‘Introduction’ in Maria Rhode and Trudy Klauber (eds), The Many Faces of Asperger’s Syndrome (Routledge, 2019).
[8] Damian Milton, ‘On the Ontological Status of Autism: The “Double Empathy Problem”’(2012) 27 Disability & Society 883.
[9] Jim Sinclair, ‘Don’t Mourn for Us’ (1993) 1(3) Our Voice <https://www.autreat.com/dont_mourn.html> accessed 8 May 2020.
[10] 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.
[11] Baron-Cohen (n 1).
[12] Katherine Runswick-Cole, ‘“Us” and “Them”: The Limits and Possibilities of a “Politics of Neurodiversity” in Neoliberal Times’ (2014) 29 Disability & Society 1117.
[13] Milton (n 8).
[14] Sinclair (n 9)
[15] ibid.
[16] Milton (n 8).
[17] Hill and others (n 5) 819.
[18] Baron-Cohen (n 1).