In the current Aotearoa New Zealand Autism Guideline the existence of Autistic culture is not mentioned with a single word. Understanding Autistic people and Autistic culture is still a secondary concern. Civil society activists and child rights’ defenders from around the world are now joining together to create the Rights-Centric Education network. Some compare Autistic life in a hypernormative culture with living life in Hard Mode. We have a long way to go until Autistic culture is as acceptable as gay & lesbian culture.
Understanding Autistic culture
Understanding Autistic people and Autistic culture is still a secondary concern.
A few days ago I had a look at the latest edition of the Aotearoa New Zealand Autism Guideline. Whilst the document mentions the importance of ethnic minority cultures, the existence of intersectional Autistic culture – in analogy to the cultures that exist in LGBTQIA+ communities – is not mentioned with a single word.
There are major improvement in the updated guideline since we started our campaign towards a comprehensive ban of Applied Behaviour Analysis (ABA) and all related forms of “conversion” therapy, but the primary focus is still centred on so-called “behaviours of concern”.
This puts all the social pressure on either changing the behaviour of the Autist, or on changing the local micro-environment of the Autist at home, in education, and at work. All of this is woefully inadequate to prevent a hypersensitive Autist from becoming overwhelmed, depressed, and disillusioned with life in our hyper-normative hyper-busy industrialised society. Modern societies offer only a very limited number of “socially acceptable” life paths for Autistic people. The few healthy life paths that might be viable are mostly out of reach economically for the vast majority of the population.
In the 400+ page Aotearoa New Zealand Autism Guideline, the following paragraph sticks out:
Autistic children and young people will need to be taught the unwritten rules of the school life, such as what to do where, when and with whom. These rules tend to change depending on the circumstances and autistic children and young people will not usually be able to generalise what they have learned to different situations. Even autistic students with less obvious support needs may not understand things that others may know intuitively.
This gets close to the heart of the problem in our society. It frames the issue in terms of Autistic deficits – in the “good old” and convenient pathology paradigm!
We live in a deeply troubled society where there is no consistent set of “unwritten rules of the school life”. The “rules” are not only context specific, but “the appropriate context” is usually dictated by so-called “authorities”, and these authorities are entitled to “change the written and unwritten rules” at any time, usually to protect their position of social dominance.
Here is my Autistic philosophy / approach to life, which took me more than five decades of lived experience to be able to put into somewhat appropriate words:
collaborative niche construction = creative collaboration committed to nurturing life, to minimising suffering beyond the human, consciously constrained by human cognitive and emotional limits, and by the biophysical limits of the Living Earth – the organism that is the source of all life, capable of joy and suffering like all other living beings.
It took me over four decades to figure out that the “unwritten rules of the school life in industrialised societies” amount to:
anthropocentric progress = creative collaboration to compete, unconstrained by human cognitive and emotional limits.
On the one hand, as children we are taught to share and be nice to people – these are the spoken and written explicit rules, but on the other hand, the (re)actions we encounter in our social environment incrementally teach us the above “unwritten rule” of powered-up hierarchically organised so-called “civilisations”. Of course no official “autism guideline” will ever spell out the horrible unwritten rule in this clarity, because this would expose the dehumanising house of cards of this so-called “civilisation”.
Autistic culture rejects the “unwritten rule” of powered-up “civilisations”. In earlier times Autists where known as Daoist philosophers etc. They were recognised as having unusual life paths that collided with the views of the dominant “authorities”, but they were not pathologised!
The dominant parenting / education / indoctrination system severely traumatises and breaks the spirit of many Autists. This results in traumatised Autists who are tormented by internalised ableism. Then modern society blames these Autists for “behaviours of concern”! The trauma inflicted by the unmentionable “hidden rule” is not mentioned in any mental health guideline or in the Devil’s Sadistic Manual (DSM). I am crying as I write this, as I have read so many horror stories of lived experiences from Autistic people, and as I know how much all the Autistic people in my ecology of care are struggling.
The latest Aotearoa New Zealand Autism Guideline is good example of how to use “positive” language and a behaviour-centric approach to skirt around all the fundamental social problems – which are of course political. Autistic people are now recognised to have motivations and some right to self-determination. Maybe we are human after all? But it is obvious that in many cases the assessments and judgements of professional “authorities” and care givers are the dominant perspectives.
It can’t be emphasised enough that even though Autistic ways of being are diverse, this does not mean that there is no Autistic culture. Autistic people form communities. Autistic people need to be embedded in healthy Autistic culture to thrive. The cognitive dissonance caused by the “hidden rule” of powered-up civilisations is literally killing many of us – we know this from the suicide and mental health statistics.
Our friends at ICARS have produced a report (data from the UK) that reveals what is actually going on in our society in terms of restraints and seclusion. There is similar data from schools in Australia gathered by Autistic activists. All of this is consistent with our global participatory research into the cultural and psychological safety of Autistic and otherwise neurodivergent children.
Civil society activists and child rights’ defenders from around the world, who have been engaged in educational practice that prioritizes the rights of young people, are now joining together to create the Rights-Centric Education network to implement a so-far-not-implemented UN Proposal to establish a Rights Based Quality Assurance System for Schools, beginning with a Declaration calling for practices of education be overhauled to ensure Child Rights in Education are respected, protected, and fulfilled.
Compulsory (i.e. Imposed) Education emerged in the 1700’s in an era where Children were seen as chattel, and it had to be publicly funded because it was targeting people who weren’t going to pay for an education they did not choose. Nothing much has changed in education in spite of social perceptions having evolved from seeing children as chattel, to objects of charity, to objects of rights, and finally the recognition (at least on paper, in 1989, with the UN Convention on the Rights of the Child) that children are the subjects of their own rights.
While there has been much work done on the Right TO Education – and there is indeed a problem with many children still denied access to education – hardly any attention has been paid to Rights IN Education. Consequently many violations are routinely perpetuated on children in the name of education. These violations are commonplace in state schools, private schools, and homeschooling – and because they are mainstreamed, most people don’t even realize that they constitute violations.
– Rights-Centric Education: Kinder Republic (Pvt) Ltd, Democratic Socialist Republic of Sri Lanka; Lada Center, Republic of Slovenia; Riverstone Village, South Africa; Autistic Collaboration Trust, Aotearoa New Zealand; Uniting for Children and Youth, Canada; Flourishing Education, UK.
We have a long way to go until Autistic culture is as acceptable as gay & lesbian culture. If the words Autistic and autism in the latest Aotearoa New Zealand Autism Guideline were replaced by gay & lesbian, there would be a public outcry. How about “early intervention” for “behaviours of concern” of gay & lesbian children? We are facing very similar struggles to the trans communities, only we are still further behind in gaining acceptance.
The psychological idea of mirroring is too often dumbed down to socially appropriate verbal and non-verbal expression of emotion, which really just signals that someone seems to be listening, but which is no reliable indicator of genuine shared understanding.
Certain conditions need to be met for mirroring to reflect shared understanding and genuine compassion.
It is only when/if listener has had any comparable lived experiences that may result in a similar emotional state or experience that the speaker/communicator can feel genuinely understood. This is what Autistic people focus on. It is not enough “to be listened to”. We want to feel understood, and we are not convinced that this is achievable by verbal and non-verbal expression of emotion alone.
Linguistically, the words used in a story attempt to communicate one or more frames, i.e. the active mental models and emotional state of the communicator. To be effective, mirroring by the listener needs to reflect back a story with frames that have some overlap with the frames of the speaker/communicator. And as Quinn points out in the above video, this is not about outcompeting each other, it is about showing a genuine attempt of understanding, with an implicit invitation to the speaker/communicator to offer clarifications in case the listener has misunderstood the essence of the story. The listener may also respond with one of more clarifying questions to a story before offering a comparable experience – and this is not to be confused with a dismissal or downgrading of the story. Lastly, the listener may respond by admitting that they have never experienced anything that seems remotely comparable – and again, this is not to be confused with a dismissal or downgrading of the story.
All of the above makes sense in a setting of psychological safety, where two people trust each other, and where the intent of communication is to learn from and with each other, and to assist each other – which is the innate human impulse of naive toddlers who have not yet been socialised by the cult of homo economicus.
But we live in a transactional society dominated by mutual mistrust. In the competitive logic of homo economicus, the “naive” Autistic attempt of offering compassion and assistance often backfires. And that sits at the core of the Double Empathy Problem documented by Autistic scholar Damian Milton. The motivations of Autistic people are routinely misunderstood. And conversely, Autistic people often fail to take into consideration how the competitive logic of homo economicus reframes all that is being said in the minds of culturally “well adjusted” listeners.
To add to the complexity, isolated and traumatised Autistic people whose spirit has been broken, who are not embedded in a neurodivergent ecology of care, may come to the conclusion that no one can ever be trusted, and end up behaving in ways that are comparable to the ways in which other highly traumatised people behave.
How does all of this play out in terms of Autistic life paths? The answer can be deduced from the answers of two closely related questions.
Do we buy into the cultural narratives that surround us?
Based on the daily lived experience of the Double Empathy Problem, it should not come as a surprise that almost by definition Autistic people don’t buy into or don’t fully buy into the mainstream cultural narratives that surround us. This can take many forms.
Many of those who find supportive Autistic community and mutual support become passionate advocates and activists for social change. Many committed environmentalists and climate activists identify as Autistic. The list of examples of openly Autistic activists examples is long, and the list of not-openly Autistic social activists is even longer.
Many of us end up in burnout for a range of reasons, often connected to the cognitive dissonance imposed on us by a hypernormative society governed by the unmentionable “unwritten rule of the school life in industrialised societies”. In the interview below Professor Guy McPherson outlines the aggregate effects of the “unwritten rule”. Unsurprisingly his conclusions are not very popular in wider society amongst culturally “well adjusted” people.
I don’t agree with all of Guy McPherson’s conclusions, mainly because my estimate of the limits of human cognitive abilities is lower. Therefore I am less convinced about the claims we can make about what the future holds for the human species and the other living beings on this beautiful Living Planet that gave birth to all of us. At the same time, I have more faith in the ability of the Living Planet to heal itself, and more faith in the potential that unfolds when humans (re)discover our capacity for collaboration at human scale.
Whether humans are still around in 200 years is anyone’s guess. What matters in my book is that we can strive to minimise human and non-human suffering. Along the way we can aim to minimise the depth of the current mass extinction event, regardless for how long the human species continues to be around. Struggling together, and appreciating every day in small life-affirming cosmolocal ecologies of care is the beauty of collaboration at human scale.
Do we buy into the competitive framing of evolutionary processes?
Those of us who have had the good fortune to gather some experiences within a genuinely life-affirming and de-powered cosmolocal ecology of care are no longer able to accept the toxic notion of homo economicus as so-called “human nature”.
Neurodiversity activists point out that there are many human natures. Every human is unique, and throughout life accumulates uniquely valuable lived experiences. Furthermore, framing evolutionary processes in terms of collaborative niche construction instead of competition is grounded in what we know about the collaborative tendencies of human toddlers.
The sacred cycle of life includes the joy of birth, the art of living well, and the process of dying and nurturing the living planet in good company. In contrast to the global mono-cult of capitalist patriarchy, this timeless wisdom is well understood within the Hindu, Buddhist, and Daoist philosophical and spiritual traditions.
The framing of life in terms of collaborative niche construction is much more compatible with Eastern traditions, with Joseph Tainter’s pioneering analysis of patterns of civilisational collapse, and with indigenous cultures, all of which understand the planet as a regenerative system of relationships between living entities.
Healthy Autistic collaborative niche construction
Collaborative niche construction is the evolutionary process of reducing cognitive dissonance, a process of omni-directional sensing and learning, which can only emerge in an adequately de-powered, non-overwhelming, and life affirming, i.e. holotropic and syntropic environment.
Quinn Dexter has produced excellent explanatory videos on so-called Pathological Demand Avoidance, elaborating on how the Double Empathy Problem often plays out.
There are very good and compelling reasons why many Autistic people are drawn towards Autistic and otherwise neurodivergent collaborations, and at least somewhat reluctant to engage on neuronormative terms. Life is not a performance!
In small societies without abstract formal authorities, everyone learns from everyone. The relational complexity of life, and the effects of the current de-humanising economic paradigm can’t easily be condensed into words. We need good Autistic and neurodivergent company to co-create unique ecologies of care based on sacred relationships and mutual aid at human scale.
One of the commenter’s on Quinn’s video on deconstructing PDA compares Autistic life in a hypernormative culture with “living life in Hard Mode” in a video game.
The Autistic Collaboration community grows organically, at human scale, at a human pace, one trusted relationship at a time, in the form of self-organising small groups that collaborate on specific initiatives, contributing to the wellbeing of Autistic and otherwise neurodivergent and intersectionally marginalised people.
Join us for the NeurodiVerse Days of Intersectional Solidarity in October!
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