It is impossible to recover from Autistic burnout within the established institutional landscape. The emergence of ecologies of care is the emergence of a beautiful diversity of human scale cultural species and organisms in the cultural compost heap of the industrialised mono-cult.
The year
is new
the plague
is old
…
Plague Poems – The Hundred-and-Ninety-Ninth Week
Indrajit Samarajiva has the kind of gallows humour that feels appropriate in these times, in the WEIRD cultural compost heap. The doors are falling off late-stage capitalism, quite literally:
… They just rebrand, reboot, and loot the corpse of the 20th century until it’s unrecognizable. The Boeing 737 is a 50-year-old airframe that some marketing idiot just slapped the word MAX on, like it’s a flavor of Mountain Dew. They might as well call it the 737 EXTREME, which is the experience of riding one. The thing has crashed itself, blown out doors midair, and the engine can melt itself if the pilot isn’t careful. These are not isolated problems, they are simply the downstream effects of having stupid fucking ideas in the first place...
The invitation to Open Space
From a number of conversations that I have had with independent tradespeople and others who are not directly embedded in big corporate and government power dynamics, it is clear that many people understand perfectly well that we live in a global mono-cult of abstract life destroying institutions.
What is still unusual is for people to openly share their experiences with late-stage capitalism beyond their most intimate circle. In fact, without actively being encouraged, in a safe environment, many don’t even share their experiences and observations with anyone, and may be plagued by self-doubt, or may have resigned to a state of deep despair, following pushback from those who (a) are still in a state of complete denial, and/or (b) have fallen for one of the many simplistic conspiracy theories, to avoid having to question fundamental assumptions about the WEIRD way of life.
Regular immersion in Open Space is a medicine that can help transform self-doubt and despair into purposeful collective action. When everyone knows that everyone knows that … – then the illusion of progress and the illusion of powered-up institutions “being in control” is exposed and weakened. The more often this happens, the more the social license of powered-up institutions is eroded.
Regular Open Space can be a tool to pick people up from where they are now, to jointly embark on a journey of omni-directional learning and intersectional community co-creation that leaves no one behind.
The effect of Open Space is comparable to the wave action on a sandy beach – sand castles in the tidal zone don’t last long. I recommend to listen to the full version of an interview with Harrison Owen on the significance of Open Space from 2002, which has aged well.
The invitation to Open Space experiences is everywhere, it is the space beyond the anthropocentric cutoff points of the bell curve. The complement to the set of Open Space experiences is the set of Closed Space experiences – the so-called Overton Window. Human wellbeing is unattainable in cultures that practice industrialised farming of humans.
Autistic burnout
It is impossible to recover from Autistic burnout within “the system”, i.e. within the established institutional landscape. At best peer support can assist us in continuing in survival mode.
Examples of the lived experience of Autistic burnout from the NeurodiVerse Days of Solidarity:
Yesssss! It can’t be “recovery” because we were actually never okay! (And neither are the systems that led us here.)
For me burnout was a big full stop. The only way I was able to get through it at all was because of my privilege (husband, self-employment, the ability to have zero demands for months). What if it’s not a temporary stop on the path of ‘normal’ but more of a breaking point, an end? Imagine if we saw burnout as a kind of “level up” – reaching the point where you cannot exist in the current systems. Ready to start from scratch.
Burnout for me was life-changing and I could see it being helpful to view it almost as an indication of being ready to start over, but this time with purpose. Burnout helped me to realise not only that I needed to “slow down” but also learn how to reevaluate my needs (not simply adhering to what society made me think I needed/wanted) and re-build my life accordingly.
While it was most certainly the most difficult time of my life involving grief and trauma, I am thankful to have reached this point because it has helped put my life into perspective and start over. I too, was only able to experience this process as personal growth after spending months engaging in nothing other than activities that made me feel good about myself, also involving the support of my partner, self-employment opportunities, and the privilege to spend consecutive months with minimal demands.
My life looks very different now, purposefully so. I am a lot happier since prioritising my interests and needs. Even still, I find myself in a perpetual fight for homeostasis, constantly drifting between inertia and propelled to respond to the demands of existing within a society that doesn’t make it easy for me to respect my own needs.
A state of burnout can be reached via many unsustainable paths. My experience of burnout is directly related to Autistic perseverance. In many domains of life our perseverance serves us extremely well and we are energised by the results. However in the social realm, due to the double empathy problem, our perseverance easily becomes counterproductive – we try much too hard for much too long. We will never meet the social expectations of a sick society, and it is a bad idea to try to “accommodate” these expectations into our lives.
Hence my key message to Autists, and especially to all those who have only recently become aware of their Autistic way of being, is to slow down, to stop trying harder, and to not be so hard on ourselves. I have reached a state of burnout multiple times, and each time the only way forward was to completely abandon a particular path in the social sphere, and to walk back until we reach a point from which a new terrain and new destinations become accessible.
When we burn out, we have literally reached the end of the road. There can be no recovery in the sense of being able to continue to what we were attempting leading up to the burnout.
I am in the process of recognizing the degree to which I am currently in burnout and I am really struggling. Thank you for your thoughts above. These will continue to help ground me as I navigate next steps.
To explain our tendency towards burnout, I sometimes use an analogy:
Autistic people are like racing cars with a high performance engine, but with a braking system that is inadequate for the social terrain in a hypernormative society. The best way to compensate for our cognitive and emotional limits within this society is to share the burden of interfacing with the external social world – we need Autistic co-pilots who act as braking assistants to help us navigate the social terrain without crashing and burning out.
Beyond WEIRD industrialised farming of humans
The article Self-Identification is the Future of Autism Assessment by Dr Devon Price is an excellent resource for educating health professionals, to motivate them to shift towards the communal definition of Autistic ways of being and to seriously consider neurodivergent theories of human diversity instead of the pathologising DSM model.
The medical model is a continuous source of trauma, as it puts up a huge barrier to openly talking about and tackling all the many things that are deeply wrong in modern industrialised societies.
The living planet is a beautifully diverse relational world, a fractal composition of relational ecologies of care. In times when social paradigms become toxic, when more and more people subconsciously suffer from cognitive dissonance, Autists and the arts play an essential role in allowing cognitive dissonance to surface, and be shared in explicit form, in ways that transcend words, simplistic linear narratives, and established paradigms.
At human scale:
Every long-term relationship, whether lovers or friends, becomes its own two-person subculture, with its own dialect, myths, rituals, ethics, and aesthetics. The better matched the people, the weirder that subculture ends up looking to everyone else.
– Geoffrey MillerThere is a lot to be said for a thinking of a pair as a group, complete with its own culture.
– David Sloan Wilson
This appreciation of diversity and collaborative niche construction has been engineered out of the WEIRD mono-cult. If sensitive Autistic and Artistic people express cognitive dissonance in non-violent ways, we end up rediscovering the art of depowered dialogue.
Autistic joy
To recover from burnout, we need to the ability to (re)experience Autistic joy:
Sooo much of autistic joy (for me), comes either with blending senses and/or a feeling of losing time. Like disappearing into writing words that just ‘click’ into place, or watching water flow so smoothly it looks solid. Just this extended sense of now. Ooh, and things lined up in rainbow order gives me the most shivery sense of tranquility and happiness. I feel sorry for typical-brained folk, they miss out on so much magic!
I recently came across something on ‘Autistic Glimmers’, and so my Autistic teachers and I will often share these with each other. For me, these are:
- Dancing/rhythm/drumming
- Connecting with animals
- Capturing an image of nature via photography or art (usually involving reflections, light, contrasting colours and patterns or some sort)
- Observing Favourite things in nature: the smell of lichen, the details of moss, the intricate diversity of mushrooms
- Floating in water
I notice a significant difference in my health when I am in nature for even a few minutes but immersing myself by living in a forest (as we transition to our ‘cottage’) has the potential to be transformative.
For me Autistic & Artistic collaborations, and being continuously immersed in nature, in a non-urban environment, and as often as possible in the ocean, close to wild animals, and exposed to the physical sensations in the aquatic realm, are inseparable. All of the above form the relationships that constitute my natural habitat, the tangible experience of being part of the big cycle of life. This year I have discovered how much my natural habitat is further enhanced by physical exercise in the garden, with manual tools, growing a food forest, and connecting with all the life in the local soil.
Emergence of ecologies of care
The double empathy problem means that well intentioned advice from culturally well adjusted people is dangerous and mostly counterproductive. Without a safe and supportive Autistic ecology of care, we are unable to fully comprehend the extent of internalised ableism that we are being subjected to.
The emergence of ecologies of care is the emergence of a beautiful diversity of human scale cultural species and organisms in the cultural compost heap of the industrialised mono-cult.
Always assume competence. Neurodivergent people, including Autistic and otherwise neurodivergent children, need to be listened to and be taken seriously. Recognise the extent to which many Autists have been traumatised, often by those who are closest to them – often unintentionally, because parents, educators, and health professionals don’t know any different. They themselves are products of the WEIRD system of education/indoctrination.
The ones who need to learn are not those who think and live outside the box of “normality”, but those who are “well adjusted”, and those who don’t yet see the internalised ableism they have absorbed. As Nora Bateson reiterates, ecologies of care are complex living systems that transcend our individual and capabilities and limitations. The collective path that humanity finds itself on is a transdisciplinary, tanscontextual journey of omni-directional learning. We are (re)discovering and (re)learning the sacred language of life.
In terms of transformative mental health support, especially for traumatised people, regardless of age, beyond peer support, there is a lot to be said for selecting a radical therapist, highlighting the importance of having access to first-hand lived experience. At the level of individuals, on the journey from a sick society towards ecologies of care, David Mackler has a number of observations that align well with the neurodiversity movement, including:
The WEIRD obsession with measuring
I am fermenting thoughts about the quality of the bridges needed to cross the three time horizons of suviving, de-powering, and thriving. Since publishing the book on human scale collaboration and human limitations in 2021 I am noticing how human scale cognitive and emotional limits continue to be ignored by academics and even more so by “social” entrepreneurs.
The effective altruism movement is a good example:
Pascal-Emmanuel Gobry and others have warned about the “measurement problem”,[75][77] with issues such as medical research or government reform worked on “one grinding step at a time”, and results being hard to measure with controlled experiments. Gobry also argues that such interventions risk being undervalued by the effective altruism movement.[77] As effective altruism emphasizes a data-centric approach, critics say principles which do not lend themselves to quantification—justice, fairness, equality—get left in the sidelines.[5][23] …
Mathew Snow in Jacobin wrote that effective altruism “implores individuals to use their money to procure necessities for those who desperately need them, but says nothing about the system that determines how those necessities are produced and distributed in the first place”.[134] …
Judith Lichtenberg in The New Republic said that effective altruists “neglect the kind of structural and political change that is ultimately necessary”.[136] An article in The Ecologist published in 2016 argued that effective altruism is an apolitical attempt to solve political problems, describing the concept as “pseudo-scientific”.[137] The Ethiopian-American AI scientist Timnit Gebru has condemned effective altruists “for acting as though their concerns are above structural issues as racism and colonialism”, as Gideon Lewis-Kraus summarized her views in 2022.[5] …
Similar to the above quoted critics, I am concerned about the the obsession with attempting to measure everything, and to “make” decisions, often including decisions with super-human scale impact, rather than to commit to collectively arriving at choices in Open Space deliberation and de-powered dialogue. This concern relates to the quality of the bridge we need between the survival and de-powering time frames.
Perhaps, the biological metaphor of semi-permeable membranes is more appropriate than the anthropocentric bridge metaphor.
We need to think about how to connect between:
(a) the abstract transactional logic that dominates at our interface with society in survival mode, and
(b) the non-measurable mutual aid that characterise peer support in survival mode in here and now, as well as the community co-creation and the sacred non-fungible relationships that are nurtured in the de-powering time horizon.
Our semi-permeable membrane needs the ability to extract energy from the dying system, in analogy to new life growing in a compost heap, without the new emerging life being infected by the cultural pathogens that survive in the effective altruism movement.
I very much respect the work of Agustín Fuentes. The well laid out article Human niche, human behaviour, human nature goes a long way towards highlighting the ecological complexity within and around the human species across the space and time dimensions of evolutionary processes, pointing towards the limits of quantitative research, and the need for qualitative research.
Still, academic articles are framed by the scientific method, and the desire to understand. I fully agree with Yuria Celidwen’s observation that scientific understanding needs to serve as the floor, and not as the ceiling of our ecological understanding of the world. Much of the deep collective ecological wisdom and the sacred relationships that we can develop at human scale transcend the explanatory powers of the narrow silos of modern scientific disciplines.
There is nothing wrong with striving to understand, but it only makes sense to pursue it when facing human cognitive and emotional limits with open eyes, recognising that there are limits to which we can understand a human and non-human world that far exceeds what our cognitive and emotional limits can deal with.
Autistic research
Ongoing AutCollab participatory research is delivering valuable results and lived experience reports. We welcome assistance in extending the reach of our research, especially our Dr. B. Educated research.
Important insights and consensus is emerging from the quarterly NeurodiVerse Days of Solidarity:
We should start looking at developing citizen research capabilities to build teams of people with similar interests. Academic researchers could join teams too, so long as they are neurodivergent or proven neurodiversity champions. Autcollab has raw data about our own neurodiverse community that we might be able to use to start the process.
An important aspect is to have the Autistic community involved as custodians of the data, so that we have control over the kind of research agendas that are being pursued. There are a whole number of topics that do not require any further research, i.e. topics that currently provide an endless “opportunity” for “professional autism researchers” as part of the Autism Industrial Complex:
Through the pathologising lens of the medical model, Autistic people are perceived as defective individuals, as lacking in essential human qualities. They are not fully human. The “usefulness” of Autistic people is ranked in terms of “functioning levels”. Those who openly identify as Autistic experience the Autistic discount factor. Whatever an Autist says is being discounted – it needs to be be independently verified, ideally by a scientific experiment, before it can be believed. Scientists have to “prove” that Autistic people are capable of empathy. Many immigration laws discriminate against Autistic people, in several countries Autistic people are disallowed from being sperm donors, in at least one country Autistic people now require a certificate from a GP to attest that they are capable of safely driving a car etc. These are just a few examples of how modern “civilised” societies treat Autistic people.
We, as a community, are now at a point where we need to strongly push back on so-called “research” that is designed to slow down social progress, and in doing so, provides further opportunities for commercial co-opting of the neurodiversity movement by the interests of the established institutional landscape. The following applies:
Conceptualising social power as an addiction provides the majority of the human population with a highly effective bullshit detection tool, capable of eroding the social licence of the toxic institutions and social paradigms that are holding entire societies hostage to decisions made by power drunk addicts.
Meaningful education in the era of the sixth mass extinction event has to focus on the majority of the human population that is not addicted to social power, and on the humane treatment of those who are ready to confront their addiction to social power head-on.
The AutCollab Education and Research teams are in favour of establishing a lean global membership organisation as an umbrella of Autistic organisations, i.e. organisations of Autists, from which we can source Autistic ethics review boards for research related to Autistic ways of being.
Those who got involved in GATFAR are a good starting point for such an umbrella organisation, but we may need to cast the net wider, as so many of our volunteer run organisations are short of spoons and funding.
We need genuine allies
Very few (if any) Autists have the WEIRD culturally expected capacity to continuously self-promote and advertise. Instead, we have the Autistic capability for de-powered honest dialogue.
The “normalisation” of the former capacity is at the core of neocolonialism, it fuels the addiction to social power, and it is what has led to the pathologisation of Autistic people. The latter Autistic capability for de-powered honest dialogue is not appreciated, it is seen as a threat by powered-up institutions, even though the inmates of these institutions would greatly benefit from de-powered honest dialogue.
We need genuine allies – we badly need them, but not to run our organisations or to mentor us on how to run organisations. We need allies who work alongside us as partners. Collectively and individually, we have decades of experience in operating Autistic organisations and peer support groups, and in conducting Autistic research – all on the smell of an oily rag, usually self-funded, without any external funding support.
Allies can greatly extend our reach and impact by helping us engage with those who are ready to learn. We need genuine allies to:
- Secure government and other funding for independent Autistic research.
- Get the education and intersectional community co-creation services, and the peer support available from AutCollab and other Autistic organisations into the right places.
- Secure funding to expand our capacity for volunteer operated peer support.
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