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Full article: https://library.oapen.org/viewer/web/viewer.html?file=/bitstream/handle/20.500.12657/39439/9780367338312_oachapter7.pdf

AccessibleAcademia

Nothing about us without us
Who: Stenning
Where: Neurodiversity Studies: A New Critical Paradigm
Published: 2020
Title: Understanding empathy through a study of autistic life writing: On the importance of neurodivergent morality

Autistic Life Writing, Empathy, & Morality

This paper is a study of the history of autistic life writing & what this says about autistic peoples experiences of morality & empathy.

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In the public eye, autistic people have been denied characteristics which are commonly considered part of what it means to be human: empathy, morality, a sense of self, imagination, narrative identity, integrity, introspection, self-hood, personhood, and more.

This is despite prominent autistics, such as Temple Grandin, Chris Packham, Greta Thunberg, & Hannah Gadsby, entering the public arena & making valuable contributions to discussions about the nature of an ethical life and to what it means to be neurodivergent.

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Simon Baron-Cohen is the theorist most responsible for the association of autism & empathy deficits. He defines empathy as being able to ‘naturally and spontaneously [tune] into someone else’s thoughts and feelings, whatever these might be’. He believes this is absent or impaired in autistic people.

[Image of Simon Baron-Cohen]

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However, literary critic, Patrick McDonagh, observed that ‘many autistic people assert that they do experience empathy’, and this includes overwhelming empathy for other people and other species. He notes that empathy has no single characterisation throughout history; ‘empathy is an abstraction, a reification; any definition is bound to be the sum of a cluster of responses that someone (or some culture) defines a priori as “empathic”’.

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[Image of book & author]
The Ethics of Autism: Among Them, But Not of Them (2008) by Deborah R. Barnbaum

The prevalence of the problematic deficit model of autism is clear. The Ethics of Autism: Among Them, But Not of Them (2008) by Deborah R. Barnbaum is a clear example. She hypothesises that autistic people make moral judgements are based on either automatically following rules, or copying other people without fully understanding why.

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This suggests that Greta Thunberg’s activism is either parroting other peoples genuine moral judgements, or that she is not autistic. She has been accused of both of these things.

No One is Too Small to Make a Difference (2019) by Greta Thunberg
[Image of book & author]

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Greta states in her memoir that her moral clarity is not possible in spite of, but is actually due to her being autistic:
“I have Asperger’s, and to me, almost everything is black or white. I think in many ways that we autistic are the normal ones and the rest of the people are pretty strange. They keep saying that climate change is an existential threat and the most important issue of all. And yet they just carry on as before.”

She may be playfully suggesting to neurotypicals that autistic people have a better claim to being moral, since autistic people’s behaviours are shaped by their views rather than determined by social norms.

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[Image of Hannah Gadsby]
Hannah Gadsby

Comedian Hannah Gadsby has described how her autism and reflective ‘ability to see patterns’ means ‘not [having to look] out to the world to see how I should exist’.

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[Image of Oliver Sacks]
Oliver Sacks

Neurologist Oliver Sacks in 1994 wrote that autistic people have ‘a sort of moral or intellectual intensity or purity, so far removed from the normal as to seem noble, ridiculous, or fearful to the rest of us’.

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Greta does not appear ridiculous: she has inspired many autistic & non-autistic people to join the activist movement, and this may even be more likely as a result of her non-normative social identity, as a minority youth, neurodivergent, female activist.

As the mock ‘Greta Thunberg Helpline for adults angry at a child’ shows, she provokes an intense response – hostility, as well as fear and ridicule – especially in ‘middle-aged’ men. This may be compounded by an upsurge in hostility towards minorities in general as a result of right-wing populism.

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Some of this might be down to ableist assumptions regarding the assumption that autistics are ‘closer’ to nature or moral purity or both, but no doubt it is also due to her intersectional position as a minority youth, neurodivergent, female activist.

She exemplifies the possibility of moving from the margins to the centre of global discourse.

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Baron-Cohen now focuses on empathy with relation to purported sex differences. He sees empathising and systemising as binary opposites which are endowed according to sex & neurotype. He believes that empathising is female and systemising is male, and that autistic people have an “extreme” male brain. He believes that he is right about what empathy is, and that autism is best understood from the outside because self-reports about empathy from autistic people are misguided.

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In a paper in the journal Autism, Sue Fletcher-Watson & Geoff Bird wrote that ‘there is no standard, agreed- upon definition of empathy used in research’, ‘having the capacity for empathy is often seen as the defining characteristic of being human’, and that the ‘use of language that dehumanises [autistic people]’ might be connected to ‘tragically frequent’ ‘violations of the human rights of autistic people in residential care services’.

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Fletcher-Watson & Bird suggest there are four main component stages to what is typically considered empathy:

A) noticing that someone is feeling something, due to their behaviour
B) correctly interpreting the feeling behind the observed behaviour
C) having noticed and correctly interpreted the emotional signals of another person, one then feels those feelings; to have an affinity for, resonate with, or mirror how that person feels
D) deciding upon and expressing a response, and this can lead to misunderstandings since it is possible autistic people are ‘not following the same response- script as a neurotypical person’

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This author identifies three generations of autistic life writing in English since 1980.

a) c.1987-1993: those which define autism for a non-autistic audience, first published after the DSM-III. They are built upon existing medical representations of autism, describing what it is to live a good life as autistic.

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b) 1994-2013: those that define a life retrospectively in the context of a later diagnosis. These are influenced by both the first generation works, and the DSM-IV. This coincides with the autism self-advocacy movement, & are less involved with the idea of autism as a pathology. Authors question fundamental assumptions about the nature of autism and make clear the need to refer to other autistic people as a source of authority.

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c) after 2013: those that seek to intervene in the social world more widely in cultural understandings of autism. Can be received as autoethnography, but paratextual discussions of these texts may perpetuate pathological representations of the authors’ autism.

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The general movement in these writings away from the medical model towards a social understanding of autism has occurred since autistic life writing has been able to reach a wider audience in the 1990s.

Greta’s manifesto/memoir is located in the third generation. It contains important insight into how the social context of common assumptions about autistics and adolescents will inform her reader’s responses to her work.

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A Brief History of Responses to Autistic Life Writing

Early autistic memoirs were criticised. Their works were believed to be inauthentic on the basis of their supposed inability to introspect or communicate with an imagined audience.

Some saw these memoirs as a study into the limits of narrativity & subjectivity due to autistic writers presumed deficits in meta-representation & theory of mind. Others saw cases like Temple Grandin’s as evidence of triumph over a condition that made such writing impossible, or as an exceptional rarity.

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Sacks in 1993-1994 raised the profile of many autistic writers, including Grandin. He challenged psychologists & humanists to reconsider the social & communicative potential development of autistics. He lent his professional credibility to the idea that nonverbal autistic children may become highly articulate autistic adults (an idea not considered at the time).

Emergence: Labelled Autistic (1986) by Temple Grandin
[Image of book & author]

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Second generation memoirs present a much broader representation of autistic experiences & lives. The autistic self-advocacy & neurodiversity movements were gaining momentum due to the works of writers who understood & powerfully articulated how autistic differences in communication & sensory processing did not impact the ability to relate to others.

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In the past 20 years, there has been a huge growth in autistic life works. Chris Packham’s Fingers in the Sparkle Jar (2017) and Greta Thunberg’s No One Is Too Small to Make a Difference (2019) include descriptions of their authors’ ethical beliefs in the widest sense. And yet within literary and rhetorical studies the idea that autistics lack a narrative capacity persists. Packham and Thunberg demonstrate that whatever autism is, it is not defined by an absence of moral sentiment or narrative and rhetorical skills.

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[Image of book & author]
Fingers in the Sparkle Jar (2017) by Chris Packham

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Despite this, Baron-Cohen still describes autism as an empathy disorder, stating that the male and autistic brain capable of systematising only at the expense of the ability to empathise.

Barnbaum’s The Ethics of Autism extended Baron-Cohens ideas to conclude that autistic people are only able to count as moral agents based on rule-following rather than as a result of acting from a (more important) moral feeling or perception. Again, autistic morality is represented as ‘other’ and less important than neurotypical ethical behaviour.

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While the first generation of autistic life writing written before 1993 broke new ground by positioning autistic writers as authorities on autistic experience once they had ‘overcome’ the condition through the efforts of others and become ‘a person’, these texts did not directly address empathy.

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Dawn Prince-Hughes’s 2004 memoir Songs of the Gorilla Nation describe her affective empathy & compassion for other species, providing the authority which allowed her own claims to be both a moral agent with full personhood, and therefore able to make assertions about her autism. Due to prevailing stereotypes about autism, Prince- Hughes’s narrative could still be read as one of ‘overcoming’ autism.

[Image of book & author]
Songs of the Gorilla Nation (2004) by Dawn Prince-Hughes

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First-generation writers such as Grandin and Prince- Hughes are subject to the pressure to translate their writing into work that meets the expectations of non-autistic readers.

The life narratives of Prince-Hughes, Gerland, and Thunberg may indeed be read as autistic testimonio, since they offer a ‘recounting of group oppression’ and demand ‘an active reader response’ (Irene Rose).

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Empathy Across Neurotype & Species

Thunberg describes her struggles gain recognition as a moral agent in the context of both her autism and the climate crisis, and her work arguably speaks to anyone who is struggling to influence anthropocentric behaviour, regardless of neurotype.

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Prince-Hughes’s memoir situates her autism as both like and unlike other peoples autism. She described her lifelong desire for moral purpose and for ‘companionship that validates one’s experiences from afar’. She urged an understanding of ‘direct sources of experience’ of autism, since this helps to overcome over-generalisations based on ‘known patterns of autism’.

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She described her reconfigured understanding of the social world after spending time with captive gorillas in a Seattle zoo. She described the glass which separated the observers from the gorillas as a symbol for the boundary between the neurotypical gaze on the human or animal “other”. She described her difference as produced by the mechanisms which were designed to facilitate interaction, and that this, like the glass, can be both metaphorically & literally interrupted or broken.

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Prince-Hughes described feeding a gorilla called Congo strawberries as the first time ‘she connected to a living person’ as she ‘never had before’. She finds a reflection of her own urges for repetition and ritual and a sense of ‘what it is to not be alone’.

Congo’s “gigantic finger, black and leathery, soft and warm, rested on my own digit. We stared at our fingers, neither of us moved. Finally, I looked up into his soft brown eyes. They were dancing with surprise.”

While Temple Grandin described herself as an anthropologist on Mars, Prince-Hughes presented herself as a xenobiologist presenting the ‘normal human’ as other.

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Morally Ambivalent Empathy: the Pain Caused by Assumed Cognitive Empathy

In Gunilla Gerland’s A Real Person: Life on the Outside (1997), she describes her early life prior to her diagnosis, and challenges conventional ideas about autism in Sweden at the time.

[Image of book & author]
A Real Person: Life on the Outside (1997) by Gunilla Gerland

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She was unhappy with the classification of high functioning’, saying it ‘sounded like something you might say about an object that was slightly defective’. However, her autism diagnosis allowed her to see her differences as having a biological basis and not a moral one, allowing her to understand herself as a ‘real person’ rather than one who was deliberately difficult, defective, or lazy.

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While Gerland generally describes a pathological view of autism, she does not believe it has prevented her from being morally concerned for others.

Her spiritual journey, like Price-Hughes’s & Grandin’s, was one which depended on ‘overcoming’ social limitations. However, she did not consider herself to need social recognition to authorise her own versions of events or to form judgements about others.

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Baron-Cohen utilised Gerland’s memoir as evidence of the empathetic failings of autistic people. He wrote: “Gunilla Gerland, who has autism and describes how she was unperturbed by the death of her father, comparing his loss to a bowl of fruit that was on the table one day and gone the next.”

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He uses this as an example of the solipsism that precludes the ‘visceral’ response that ordinarily produces moral action.

However, he appears not to have read the memoir: Gerland’s father had not died; he had moved out, she was an infant at the time, and he had been emotionally & physically abusive towards her. He also fails to mention her early concern for her sisters wellbeing.

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After this publication, Gerland became an autism advocate, educating professionals on how to interact compassionately with verbal & non-verbal autistic people. She became a pioneer of autistic participation in research on autism.

While her views on her own & on autism collectively were most likely shaped by the neurotypical gaze, she also contrasted the common view of the time that autism was a result of bad parenting.

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Talking Back: Autism as Moral Motivation

Greta Thunberg’s manifesto No One Is Too Small to Make a Difference requires us to take the possibility of her ability to make moral judgements as a given, so we are then able to critique the mere suggestion that autism can be defined as lack or deficiency.

Yet her demand for radical changes to society to prevent climate change has been met with criticism that echoes the denial of autistic empathy on the basis that it does not conform to neurotypical empathy.

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Andrew Bolt, who is a broadcaster on Australia’s Sky News, linked her claims to an alleged underlying pathology:

“She suffered years of depression and anxiety attacks and was finally diagnosed with Asperger’s syndrome, high-functioning autism, and Obsessive-Compulsive Disorder. Her intense fear of the climate is not surprising from someone with disorders which intensify fears.”

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However, Thunberg states that neither her anxiety nor compulsions drove her to raise awareness about the threat of climate change, but that it was her being autistic.

“Some people mock me for my diagnosis. But Asperger is not a disease, it is a gift. People also say that since I have Asperger I couldn’t possibly put myself in this position. But that’s exactly why I did this. Because if I would have been ‘normal’ and social I would have organized myself in an organization or started an organization by myself. But since I am not that good at socializing I did this instead. I was so frustrated that nothing was being done about the climate crisis, and I felt like I had to do something, anything.”

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She implies that had she placed greater value on conformity with her peers, she would have found another, and possibly a less effective way to campaign.

Her work resists the idea that she is superior to her audience: rather than saying her being autistic is a limit or a superpower, she says it is simply a factor which has led to this particular outcome. Her being autistic leads to difficulties in certain situations, but is not a condition defined by moral limitations.

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The idea that autistic people are unable to make moral judgements, or are only able to blindly follow rules, speaks mainly to a normative urge to find a single story about what makes a good life.

The story of autism as defined by empathy deficits also plays to totalitarian conceptions of the good, since the world in which we live is dependent on multiple visions of what is right.

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In fact, to cast any neurotype as inherently pathological or valuable creates a situation in which groups who are perceived to share that trait are at risk of being sacrificed for the greater good. When we seek to locate a single feature such as empathy as a unique sign of our supposed individual worth, we are also at risk, not of debasing ourselves, but of not recognising our ongoing need to refine our own judgements according to the new circumstances in which we find ourselves.