Autism and Epistemic Injustice

 'In what ways are autistic people seen as ‘other’? Epistemic injustice, neuro norms and white supremacy; the role of autistic people in a pluralistic society.'

 Sections: 

1.       Background to autism.

2.       Autism and the neurodiversity movement.

3.       ‘Othering’ and epistemic injustice (include readings from course).

4.       Autism in educational settings.

5.       Pluralism and acceptance, the role of recognising and accepting autistic identity.

 

1. Background to autism.

 To begin with, what is autism*? 

The American Psychiatric Association definition is as follows:

‘Autism spectrum disorder (ASD) is a complex developmental condition involving persistent challenges with social communication, restricted interests, and repetitive behavior. While autism is considered a lifelong disorder, the degree of impairment in functioning because of these challenges varies between individuals with autism.’ (American Psychiatric Association, 2023)

It is important to note that the definition above originates from a medical model which characterises and diagnoses autism via behavioural traits that are seen as ‘other’ to societal norms. This frame of reference is key to understanding perceptions of autism within society as a whole.  Autism research, as a body of work, has been led in the main by non-autistic researchers, furthermore many organisations who fundraise or offer supports for autism, have centred non-autistic voices in their policy making or publicity campaigns.  This is an example of epistemic violence as defined by Dotson, 2011) who says that

'epistemic violence in testimony is a refusal, intentional or unintentional, of an audience to communicatively reciprocate a linguistic exchange owing to pernicious ignorance.’

This exclusion of autistic voices has been widely criticised by the autistic and neurodivergent community, as has the ‘medical model’ with many autistic people advocating for language that is less medicalised and more accepting of difference. The language itself, which often presents autistic traits as ‘deficits’ or ‘problems’ frequently creates stigma by its very nature.  This medical model is referred to in Lindblom, (2017) where she writes that ‘this way of thinking does not fit within Indigenous worldviews, in which all people are valued for who they are.’  This connects to the wider place of autistic people within a colonial model of thinking and the value systems which create norms of behaviour and being.

Particular characteristics of autistic people, such as body movements which self-regulate, differences in eye contact and direct communications styles are seen as not fitting into standard models of comportment.  Importantly, many traditional theories of autism are based on behavioural observations in which the neurotypical researchers use observance of phenomena as the entire means of ‘naming’ autism.  This lack of examination of underlying dynamics and forces inevitably produces an incomplete picture (Kourti, 2021).

Many autistic people would argue that a number of the disabling features of autism are due to lack of understanding and lack of adequate accommodations.   This is the premise of the social model of disability.  This social model is very pertinent to the autistic experience; however it may simplify a complex set of interactions between our role as social beings, and the physical reality of bodily or psychological impairments.  Catala, Faucher and Poirier, (2021) discuss this a little more and offer an ‘interactionist’ model as a way of addressing some of these difficulties.

‘The interactionist model of disability as disablement dovetails nicely with the model of agency …in which ability is construed as the result of a dynamic interaction between an agent’s skills and the features afforded by their environment’.

 2.       Autism and the Neurodiversity movement.

 

The term neurodiversity was coined in 1998 by Judy Singer, who was an Australian sociologist, and this term was quickly adopted by the autistic community. Per Autistic UK, (2023),

‘Neurodiversity is the diversity of human brains and minds, the infinite variation in neurocognitive functioning within our species.  The Neurodiversity Paradigm is an emergent paradigm in which neurodiversity is understood to be a form of human diversity that is subject to the same social dynamics as other forms of diversity (including dynamics of power and oppression).’

The neurodiversity movement originated as a grassroots movement and has gained momentum since its beginnings, with increased recognition of the voices of autistic people and with the input of autistic led research and advocacy.  Neurodiversity does not simply refer to autistic people, but is a wide umbrella which encompasses conditions like ADHD, dyspraxia, dyscalculia, amongst others. The movement is closely linked with the disability movement and advocates for de-stigmatisation of autism (and other brain differences), and for greater acceptance and societal supports.  According to Tougaw, (2020),

‘Philosophically, the neurodiversity movement is based on what we might call cerebral pluralism—the idea that each brain is different and some more different than others.’ 

 

 

3.   ‘Othering’ and epistemic injustice.

 

Autistic people are ‘othered’ in multiple ways. As with other disabilities, autistic people can be seen as different and less able to ‘perform’ in a society which values economic productivity so highly. Media portrayals) often represent autistic people as robotic, lacking empathy, unable to socialise, and largely are represented as male.  There are two common tropes, the autistic non speaking child who presents as being severely disabled and requiring a high level of care, or the quirky clever scientist type who remains different, but nonetheless in a more acceptable form.  This latter character is frequently manifested in the form of ‘geek’ or autistic coded characters like Sheldon Cooper or Sherlock Holmes. (Shepard, 2010) speaks of media representations and says that ‘…these personas are also so often masculine, middle/upper class and white. These representations are problematic in the way that they uphold traditional normativity in terms of gender, race and class, as well as reifying stigma toward other points on the autistic spectrum.’

Within this normative sphere, ‘Aspie Supremacy’ is something which is often critiqued within the autistic community.  The term derives from what was a category of Autism, Asperger’s Syndrome, which was subsequently removed from the DSM (diagnostic manual) in 2013.  This term was used to describe Autistic people who were ‘higher functioning’.  Hans Asperger, for whom the syndrome was named, was connected with Nazi race hygiene policies which were designed to kill disabled people.  The idea that some autistic people who have particular skillsets or attributes connected to their autism are superior to other autistic people, or to other non-autistic people, is the basis for Aspie Supremacy.  Although Aspie Supremacy isn’t well tolerated within the autistic community, there are nonetheless those who prefer to dissociate from lesser socially acceptable forms of autism and lean towards a form of supremacy which is firmly rooted in colonial hierarchies. Heilker, (2012) says:

‘…I find this rhetoric disturbing, since any discourse that invokes a reference to genetic or evolutionary superiority will, of course, immediately raise the spectre of Nazi racism and Aryan eugenics. Here that association cements the idea of autistics as white.’

To further explore the idea of white supremacy, I refer to Mills, (1997, p.1) who says that ‘white supremacy is the unnamed political system that has made the world what it is today.’  He goes on to say that ‘…the lack of appropriate concepts can hinder learning, interfere with memory, block inferences, obstruct explanation, and perpetuate problems’ (Mills, 1997, p.7). He refers also to feminist theory and the act of deconstructing some of the dominant narratives.  Within an intersectional framework, the dominant narrative (which is predominantly white and male), needs to be dismantled with an acute awareness of how the narrative disables and unequalises different groupings to varying degrees, and sometimes in a multiplicity of ways.

 

From an epistemic perspective autistic people experience injustice in many respects. Catala, Faucher and Poirier, (2021), speak of how ‘neuronormativity and neurotypical ignorance… give rise to a host of epistemic injustices for autistic people.’  They go on to define neuronormativity as 

‘the prevalent, neurotypical set of assumptions, norms, and practices that construes neurotypicality as the sole acceptable or superior mode of cognition, and that stigmatizes attitudes, behaviors, or actions that reflect neuroatypical modes of cognition as deviant or inferior.’  

The reference to ‘neurotypical ignorance' defers to Charles W. Mills and his concept of ‘white ignorance’, the idea here being that neurotypical privilege leads to ignorance about norms and assumptions which stigmatize autistic people.

Catala, Faucher and Poirier, (2021) also speak of ‘testimonial quieting’ which occurs when a hearer dismisses or invalidates a speaker’s testimony pre-emptively.  This occurs, as mentioned above, in the areas of medical research and advocacy where organisations and individuals position themselves as experts, yet exclude the voice of actually autistic people.

 

Similarly Fricker, (2007, p. 7), in speaking of hermeneutical injustice and its harm, speaks of a

 ‘…hermeneutical gap’ which ‘prevents them in particular from making sense of an experience which it is strongly in their interests to render intelligible.’

Hence autistic people are epistemically disadvantaged in a number of ways; they are placed outside neuronormative society which by its ignorance, is unaware of different ways of thinking, and they are discredited from a testimonial perspective, in that their words and accounts of their own experience is devalued.

 

 

4. Autism in educational settings.

 

In educational settings, there are multiple facets to engaging with autistic individuals. Historically, girls and people of colour have not had access to the same level of diagnosis. This is due largely to the medical and societal bias which sees autists as white boys.  Heilker (2012), speaks about this in terms of social perceptions and popular media:  

‘our conceptions of autism and autistics are driven primarily by what we encounter in popular media. What we learn from the movies, for instance, is that all autistics are white.’ 

With regard to the Traveller community in Ireland, at a Seanad Public Consultation Committee debate on Tuesday, 9 Jul 2019, the topic of which was:  Travellers Towards a More Equitable Ireland Post-Recognition, Rose Marie Maughan spoke at length about autism in the Traveller community and said that:

‘It is unclear from the statistics how many Traveller autistic children there are and the services they require. It is unclear whether the services are both clinically and culturally appropriate.’

Societal perceptions, and the biases mentioned above, can lead to educators not recognising the indicators of autism, and therefore not accommodating the disability. Likewise, from an epistemic perspective, autistic individuals can be diminished in the knowledge sphere, and their words (or non- speaking forms of communication) can be dismissed.  Outward manifestations of autism or neurodivergence in general can be seen as aggression or ‘trouble making’ tendencies, or sometimes, in the case of girls, as a lack of focus or ‘daydreaming’.  This lack of recognition and awareness can create huge educational disadvantage for those with autism. Similarly, in adult educational settings, norms around communication styles are pervasive and likely to exclude autistic people. Autistic individuals may have a more direct communication style, or perhaps may be reluctant to participate in discussion because of previous experience of invalidation, and being made to feel that their knowledge and testimony is not valued at best, and at worst criticised or dismissed.

Miranda Fricker (Fricker, 2007, p.159) describes this experience from an epistemic perspective:

‘That hermeneutical injustice most typically manifests itself in the speaker struggling to make herself intelligible in a testimonial exchange raises a grim possibility: that hermeneutical injustice might often be compounded by testimonial injustice …In such a case, the speaker is doubly wronged: once by the structural prejudice in the shared hermeneutical resource, and once by the hearer in making an identify-prejudiced credibility judgement.’

Claiming autistic identity is enabled by access to information and understanding, as well peer support.  By the very nature of how autism is diagnosed and the paradigm of management or treatment, many young people may not be able to access pathways to fully embracing their autistic identity.  Even for those children who are diagnosed, and who have affirming support, there is nonetheless a feeling of being different, and an actual substantial difference in perceiving the world, and in translating that world into manageable form for themselves.  Within many social and educational settings, autistic people are doubly disadvantaged: they are often perceived on an individual level as being ‘weird’ and are also subject to the general societal biases around autism.  Furthermore, on a physical level, sensory issues and other brain differences, such as, for example, difficulties in transitioning from one task to another can create disadvantage in learning environments.  It is important, also, to refer to autistic ‘masking’ in social and educational settings.  Masking is the term used within the autistic community to describe the adoption of neurotypical presentation, in order to conceal autistic identity.  As described by Radulski, (2023), ‘this is where people conceal certain traits and replace them with neurotypical ones to avoid being recognised as neurominorities.’  This can take many forms such as increasing eye contact, mirroring the body language or cadence of neurotypical people, and restricting body movements.  The consequences of masking can be severe for autistic people but it’s a necessary survival mechanism for many autists by virtue of the fact that, without it, they may suffer social exclusion, lack of access to employment and in the case of people of colour, there is a real risk of police violence (Radulski, 2023).

 

5. Pluralism and acceptance, the role of recognising and accepting autistic identity.

 

The word ‘acceptance’ is an important one for the autistic community and is part of a move towards changing from the widely used ‘autism awareness’ to a more inclusive and less passive interaction.  April, which is Autism Awareness Month, can have an adverse impact on autistic advocates and autistic people in general, as they listen to a plethora of voices speaking over them and see symbolism which many autistic people find offensive, like the puzzle piece. (Autistic Not Weird, 2020).

To once again use Tougaw’s (2020) words ‘cerebral pluralism’, it could be posited that this concept should be a starting point on the road to societal acceptance of autistic and other neurodivergent people.  This kind of pluralism should encompass a recognition of the autistic ontological state, and would entail that neuronormative society comprehends the necessity of an essential shift in thinking and an ability to self-reflect on potential bias.  This is especially true when it comes to communication in its different forms such as verbal, written, visual, via body language, etc.

Milton, (2012) defined the ‘double empathy problem’ in reference to communication, as follows:

‘The ‘double empathy problem’: a disjuncture in reciprocity between two differently disposed social actors which becomes more marked the wider the disjuncture in dispositional perceptions of the lifeworld – perceived as a breach in the ‘natural attitude’ of what constitutes ‘social reality’ for ‘non-autistic spectrum’ people and yet an everyday and often traumatic experience for ‘autistic people’.’

This communicative dissonance is a substantial barrier for autistic people, with autistic directness oftentimes being interpreted as rudeness, and likewise, some physical ways in which autistic people communicate distress or attempt to self-regulate via stimming, can be seen as disruptive or challenging.  Authentic inclusion would eliminate the need for autistic people to ‘perform’ as allistic people.

 

 

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