Decolonising autism

Seeing patterns and making uncanny connections are perhaps the traits of my autism that I cherish the most. They come in handy in my field of work, decoloniality, as they allow me to draw parallels between the ways in which both my Blackness (historically) and my autism (currently) have been studied and understood by Eurocentric science.

Take this quote from Michael Tomasello and colleagues, from 2005, in Monique Botha's 2021 paperwork compiling the most outrageous quotes from autism researchers about autism:

'In general, it seems that neither apes nor children with autism have – at least not to the same extent as typically developing human children – the motivation or capacity to share things psychologically with others. This means that they both have very limited skills for creating things culturally with other persons.'

I couldn't help but recognise the familiar combination of a certain institutional arrogance, lack of self-awareness, and complete lack of empathy. But for the first time, my Blackness wasn't being insulted by likening me to an ape... my Autism was! I guess we can call this progress?

Standing at my intersection of race and neurotype, the despairing similarities in the ways the 'scientific method' studied Blackness then, and studies autism now, are not lost on me. White Western Male scientists spent most of the 19th century and part of the 20th century trying to 'scientifically' demonstrate the intellectual inferiority of Black people, their higher propensity to commit crime, and justify their enslavement by studying the morphology of their skulls.

Meanwhile, this century, autistic people have been described as having less domesticated traits, abnormally shaped ears, facial morphology and pronounced facial phenotypes, all of which – supposedly – impact cognition (Benítez-Burraco et al., 2016). One hundred years later, and the discredited, pseudo-scientific principles of phrenology are back in scientific literature: it didn't work for race, but surely, it will work for autism?

Sarcasm aside, it is hard for me to trust that 'science' will see me as a valid member of society and recognise my humanity. I hope that this juxtaposition of epistemological violence towards Black people, and epistemological violence towards autistic people has appealed to the very thing that autism research has argued I am incapable of: your sense of empathy. And if I played my cards right, reading those quotes has revolted the 'Angry Black Woman' inside of you. (Yes, another terribly harmful trope. Did I say 'sarcasm aside'? ... I lied.)

The next logical question is: how did we get here? Why does Western science reproduce the same mechanisms of stigmatisation, dehumanisation, and objectification across the centuries, seemingly only swapping the group that is being targeted by those forms of violence?

Colonial Mindset Assumptions

Science is not objective. The idea of the objectivity of science has been questioned by many feminist and anti-racist scholars who argue that products of science often reflect social and cultural norms, which in turn perpetuates inequalities and mechanisms of violence (Fondacaro & Winberg, 2002). When the observer, the person 'doing the science', belongs to a hegemonic (or dominant) social group, and the subject being studied exists outside of that group, their respective positionalities may be reflected in the implicit biases, and assumption of superiority of the observer over their subject. In the context of colonisation, this mindset is illustrated by what I call the three Colonial Mindset Assumptions:

• What is invisible to the coloniser is non-existent to the coloniser.
• What is incomprehensible to the coloniser is deficient to the coloniser.
• What seems different to the coloniser is inferior or wrong to the coloniser.

These assumptions exclusively centre and validate the dominant group's perception. They served as the basis for the moral justification for Colonisation, Slavery and Genocide. In this principle, it's not only that most of us are blinkered to the experiences of others because 'we do not know what we do not know', it's the peculiar assumption that 'What we don't know must be rubbish' that facilitates the continued impact of colonialism via systemic structures and systems of oppression by privileging the experience of the dominant group.

The Deficit Model of Autism

The Deficit Model of Autism holds similar assumptions and these can be seen in how the Diagnostic and Statistical Manual (DMS-5) categorises autism. Any divergence from the norm is viewed as a deficit, abnormality or failure.

One might argue, that while no consensus exists on the meaning of 'mental disorder', as traditional value accounts suggest, a condition is a mental disorder only if it is harmful to the patient (Wakefield, 2007), and this is reflected in the way the DSM-5 is commonly used by professionals. I would point out that with the autism criteria, the DSM-5 seemingly breaks from centring the patient's experiences. The DSM-5 only provides a list of external traits, making no mention of the internal experience of the autistic person, de-centering the person and contributing to the dehumanisation of autistic people.

The de-centring of the subject is a form of Epistemological Violence, which is when data on a group is interpreted as that group being inferior or a problem, while other possible interpretations are discarded (Thomas Teo, 2011).  Similarly to the study of colonised people, 'Autism research has had a history of conducting research "on" autistic people and not "with" them' (Botha, 2022). It has been argued that this is due to autistic people 'lacking epistemic authority' (Frith & Happe, 1999; Hens et al., 2019) or their accounts being biased (Botha, 2021).

In the context of social power dynamics, neurotypical is the default, the norm, the dominant and privileged group. Autistic people, just like any other marginalised group and colonised people, have been stigmatised, dehumanised, infantilised and essentialised on a systemic level, often understood as objects, sometimes subjects, reduced to their utility to society, but rarely as agents. Furthermore, little consideration is given to the role society has in producing autistic people's outcomes (Botha, 2022).

So, decolonising autism?

Can the tools designed to dismantle the colonial project also help autistic people?

Michael Rebhahn defines 'decoloniality' as a school of thought that aims to delink from Eurocentric knowledge hierarchies and ways of being in the world. It critiques the perceived universality of Western knowledge and the superiority of Western culture, including the systems and institutions that reinforce these perceptions (Rebhahn, 2021). Furthermore, Quijano (2007) specifies that decoloniality can be understood as the struggle for liberation from all forms of oppressive power that leads to inequality, discrimination, exploitation and domination.

The emergence of the conceptualisation of autism (and Aspergers) is 'rooted in socially constructed ideas of normality, intelligence, excellence, disability and productivity, and those notions are connected to the colonial ideas of anti-Blackness, patriarchy, and capitalism' (Lewis, 2021). If we recognise that autism is a marginalised experience constructed from a place of hegemony, then deconstructing that perception is necessary, and decoloniality can be useful.

My decolonial critique of autism – applied to epistemic, social and political aspects – is based on the framework that Dr Lucia Kula, Dr Dominik Jackson-Cole and I have developed. I will use our Framework to recontextualise our current understanding of autism as culturally specific, non-universal, non-objective and non-neutral, and show how decoloniality can ultimately benefit autistic people.

The challenges involved include:

• Power imbalances: in the context of autism, as members of a marginalised group existing in a supremacist society, autistic people experience discrimination and oppression from hegemonic powers.
• Epistemological violence: working towards giving agency to autistic people and the autistic community, centring discourses, research and knowledge around the autistic lived experience, and recognising it as a valid form of expertise would contribute to redress the harm caused by Epistemological Violence.
• Assumed universality and apolitical character of being in society: our existence, knowledge and perception of the world are informed by our positionality. Dominant discourses and practices reflect the implicit biases of society and reinforce normative, supremacist assumptions. Existing inside or outside of 'the norm' is inherently political.
• Social constructs of gender, race, class, disability, sexuality, etc.: existing as an autistic person already gives us the experience of being, thinking, and feeling outside of the norm. Understanding the socially constructed nature of norms and conventions is crucial to understanding the ways in which they may fail autistic people, and how to remedy it.

It is important to recognise that implementing the decolonial principles of centring the lived experience of the subject and honouring their agency might be more challenging when dealing with non-speaking autistic people, and autistic people with learning disabilities, as communication differences may affect how we understand their needs, desires and agency.

This is precisely why The Decolonial Framework can provide us with tools to dismantle oppressive power dynamics and challenge the dehumanising discourses and practices that particularly affect autistic people who have higher communication and/or support needs. It encourages us to recentre the groups that have been systemically oppressed, erased or silenced, to rehumanise the members of those groups and reaffirm their personhood regardless of their individual circumstances. Such actions would benefit all experiences of autism, across the spectrum.

Disability or social construct?

Autism as a neurotype exists independently of social context. Mottron (2011) argued that autism should be understood and researched as a natural variation of being human, rather than an error that needs to be corrected. 

I argue that autism as a Social Disorder – as well as the stigma, misconceptions and discrimination attached to it – are entirely socially constructed. The Decolonial Framework can help us depart from the Medical Model of Autism, which "relies on the pathologization of disabled people and sustains a powerful industry built on being able to identify 'deficits' and finding ways of 'fixing' or 'treating' these perceived deviations from an assumed norm" (Botha, 2022).

The DSM diagnostic criteria for autism relies heavily on deviance from social norms, but in doing so perpetuates the assumption that social norms are shared universally across cultures, traditions and positionalities. Let's consider what the autistic 'failure of normal back-and-forth conversation' looks like in a culture where the listener is required to interrupt and interject in a conversation to signal that they're listening like it is the norm in Japan with Aizuchi (相槌) (Saft, 2007)? How do we define a 'deficit in nonverbal communicative behaviours used for social interaction' in someone who has been socialised to suppress the expression of their affect, or in someone whose society places huge expectations on their ability to perform agreeableness because of their gender identity or social status (Nandkeolyar et al., 2022)? How do we identify 'abnormalities in eye contact' in an individual from a culture where eye contact tends to be taken as an affront or a challenge of authority, as is the case in many Asian, African and Latin American cultures (Uono & Hietanen, 2015)? 

Decoloniality can help us recognise when Western centrism might influence our understanding of social norms, and help us develop an approach to autism that does not exclude people and cultures that exist outside, or at the margin of Western society.

The 'why?'

Besides the moral case for treating autistic people with compassion and dignity, it is also in society's best interest to decolonise autism, as the whole of society benefits from dismantling systems of oppression, allowing for a more inclusive environment (Mottron, 2011). Reducing stigma and discrimination against one identity lays the ground for doing the same with other marginalised identities, and even for those who aren't marginalised but still do not feel comfortable showing their authentic selves in society (Smith & Yoshino, 2013).

If we can agree that autism is a colonial construct, or at least, that neuronormativity is a colonial construct, it can intersect with other forms of oppression, that are the legacy of the colonial project. The damages and violence of colonisation compound when you are racialised and autistic, when you are queer and autistic, a woman and autistic etc.

Decoloniality can also be used as a tool to combat ableism within marginalised communities. Many forms of oppression stemming from colonial projects (e.g. racism, xenophobia, patriarchy, social precarity), represent an extra stress on minorities and affect their ability to conceptualise, accept, and accommodate for neurodiversity and mental health in general. When systemic oppression forces communities to prioritise coping strategies, it creates a toxic environment that is not conducive to recognising and affirming everyone's specific needs and differences (Cyrus, 2017).

The answer is never to further demonise said communities for being 'intolerant' or 'ableist', but to work to remove the social pressures that exacerbate the coping strategy of erasing differences among themselves. Decoloniality can provide the framework to close the gap between the experience of autism of a woman of colour and that of a white man, and ultimately the gap between the autistic experience and the neurotypical experience.

The 'how?'

One of the core principles of decoloniality is letting go of the myth of a one-size-fits-all solution. Rather than giving you oven-ready solutions, my intention with this article is to make you aware of the problem, and the goal of my work as a trainer is to support individuals or institutions to ask themselves the right questions, that ultimately only they can find the answers to. In that logic, I have limited myself to broadly drawing a connection between a few decolonial key points, and their possible relevance to the context of autism.

So, decolonising Autism could mean:

• Acknowledging your own positionality and the pervasiveness of systemic power in the field of autism research and autism care.
• Acknowledging that the lived experience of autism is also shaped by cultural and social norms that aren't universal.
• Contextualising the identification/diagnosis of autistic traits within the social and cultural context of the individual.
• Understanding how the intersection of their multiple identities and marginalisations affects their experience of autism and poses unique challenges to each individual.
• If you deal with data – analyse it using a diversity lens (e.g. ethnicity).
• Engaging in Autism research through the juxtaposition of different autistic perspectives: intersectionality is a thing! 
• Recognising lived experience as a valid form of expertise.
• Collaborating with autistic people.
• Collaborating with autistic people of diverse identities!
• Compensating autistic people for their labour.

Decolonising autism will not 'cure' or 'prevent' autism... And that's the point! When we look at racism, we do not seek to 'cure Blackness', we try to dismantle the extra hurdles, barriers and systems of oppression that society has placed in someone's way. The Decolonial Framework can help us depart from the medical model and can give us a map to trace back the epistemological pathways that lead society to exclude, erase or oppress minoritised groups. We have the tools to avoid further perpetuating the same mistakes.

Joris Lechêne (He/Him) is a trainer in anti-racism, bias, and decoloniality who has lived experience of autism and ADHD. He draws from both his lived experiences as a marginalised person (Black, Queer, Neurodivergent) and his practice of Sociology as a trainer to explore the parallels between all forms of oppression, breaking them down to their essential power dynamics between dominant groups and marginalised groups. Joris has lived and worked in five countries, on three continents, in both white and black-majority societies. He uses this vantage point on both sides of privilege and disadvantage, to communicate and explain social concepts and speak up on the topics of inequalities, discrimination and biases. Find him on his website, Instagram and Tiktok.

References

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