Co-creating ecologies of caring and sharing

Instead of the individualistic perspective, mental health can only be understood in a way that is meaningful for humans at the level of a biocultural organism at human scale. People are connected via all the many ways in which we communicate, enjoy doing things together, help each other, and share food and other resources.

The interactions between us have a direct impact on our nervous systems, cardiovascular systems, and digestive systems. The more hypersensitive and emotionally connected we are, the more pronounced the effect, and the more we notice these connections between us. There is a bidirectional feedback loop between the interactions between us and the states of our internal systems. The more experiences and stories we have shared, the more we understand our respective contexts, and the more our internal systems react when we interact.

Beauty

The pleasure of pattern recognition is an important part of the Autistic sensory experience that transcends all aspects of life.

It is not an accident that many artists are Autists. Sensing beauty and the ability to make it explicit via artistic expression and creative play is at the core of Autistic experience.

Beauty is of course also part of the human capacity for love and compassion, even towards complete strangers, including members of other biological and cultural species.

Picture by Morgan Constance

If access to beauty is taken away from us, for example in industrialised mono-cultures, in degraded ecosystems, when the only recognisable patterns are life denying and creativity destroying coercive forces, then Autistic life is reduced to coping mechanisms in survival mode, which often includes obsessive and compulsive patterns. A fulfilled healthy Autistic life is incompatible with the factory model of society, which only allows for “normal” standardised functional human cogs in the industrialised machine.

Collaboration

The stereotype that Autists have difficulty with collaboration is the result of a fundamentally different perspective on the purpose of social interaction. The purpose of Autistic social interaction:

to learn from each other, to collaborate with others towards a shared goal.

The purpose of neuronormative social interaction in industrialised societies:

to negotiate social status and power gradients, to compete against each other using culturally defined rules.

Autistic creative collaboration can be described in terms of a Socialisation, Externalisation, Combination, Internalisation (SECI) knowledge creation spiral within Open Space, i.e. in terms of the free flows of knowledge and the collaborative niche construction that emerges in the absence of social power dynamics.

Sensory profiles and cognitive lenses, especially of people who are hypersensitive, are unique and vary along many dimensions. The interaction patterns between any two Autistic people who spend time together develop into a unique protocol and a unique language system. Taking the time to learn about and understand each other’s sensory profiles and cognitive lenses is essential for feeling safe with each other, and is a prerequisite for establishing de-powered relationships and ecologies of care.

NeurodiVenture : an inclusive non-hierarchical organisation operated by neurodivergent people that provides a safe and nurturing environment for divergent thinking, creativity, exploration, and collaborative niche construction.

The intuitive Autistic rejection of all forms of social power gradients is simply a reflection of the innate collaborative inclinations that are the result of 2 million years of gene culture co-evolution. As Riane Eisler points out in her book Nurturing our Humanity, and as any hypersensitive Autistic person can attest, humans get stronger neurochemical rewards from caring and sharing than from winning and dominating. This applies at all levels of scale, and this basic biological fact shows the limitations and the extreme dangers associated with game theoretic approaches, including all attempts to understand and guide human decision making via such approaches.

In Te Reo Māori the NeurodiVenture concept translates to Neurodivergent whānau. Indigenous languages like Te Reo Māori have important words for concepts that have been suppressed by colonialism.

Whānau : extended family, family group, a familiar term of address to a number of people – the primary economic unit of traditional Māori society. In the modern context the term is sometimes used to include friends who may not have any kinship ties to other members.

There is an urgent need to catalyse Autistic collaboration and co-create healthy Neurodivergent and Autistic whānau all over the world.

Autists depend on assistance from others in ways that differ from the cultural norm – and that is pathologised in hypernormative societies. However, the many ways in which non-autistic people depend on others is considered “normal”. The endless chains of trauma must be broken. In mainstream society people don’t understand how Autistic people support each other, love each other, and care for each other in ways that go far beyond the culturally impaired neuronormative imagination.

There is the saying that “It takes a village to raise a child.” The Autistic translation of this saying is “For an Autistic person it takes an extended Autistic family to feel loved and alive.”

Most Autists are not born into healthy Autistic families. We have to co-create our families in our own space and time. In a healthy culture Autistic children are assisted in co-creating their unique Autistic families, but in our “civilisation” this cultural knowledge has been lost and is suppressed.

Human scale

Small is beautiful, understandable, and allows mutual trust and mutual aid to flourish.

“Study after study confirms that most people have about five intimate friends, 15 close friends, 50 general friends and 150 acquaintances. This threshold is imposed by brain size and chemistry, as well as the time it takes to maintain meaningful relationships” – Robin Dunbar, 2018

Within good company (smaller than 50 people), everyone is acutely aware of the competencies of all the other members, and transparency and mutual trust enables knowledge and meta knowledge (who has which knowledge and who entrusts whom with questions or needs in relation to specific domains of knowledge) to flow freely. This allows the group to rapidly respond intelligently and with courage to all kinds of external events.

NeurodiVerse : human scale cultures created by neurodiversity within the human species, i.e. the universe of Neurodivergent and Autistic whānau

Autistic cognitive limits and sensitivities re-sensitise human societies to the limits of human scale, because Autistic bodyminds react viscerally when overwhelmed by super human scale expectations and delusions.

So called “civilisation” and empire building needs to be recognised as the most life denying and ultimately self-destructive social disease that can afflict human societies.

Timeless patterns

The path to escape the box of a sick society involves rediscovering timeless and minimalistic principles for coordinating creative collaboration in the absence of capital and hierarchical structures:

  1. Visibly extend trust to people, to release the handbrake to collaboration.
  2. Unlock valuable tacit knowledge within a group.
  3. Provide a space for creative freedom.
  4. Help repair frayed relationships.
  5. Replace fear with courage.

People have known about these principles for millennia. Some of the principles have been rediscovered many times, by different groups of people in various geographies and in different cultural contexts. In particular, neurodivergent people are acutely aware that culture is constructed one trusted relationship at a time – this is the essence of fully appreciating diversity. Many timeless observations on cultural and psychological safety don’t neatly fit with the siloed W.E.I.R.D. ways of knowing.

All life on this planet is constrained by the energy that is available to power the activities of life, which are all based on the assembly of complex biochemical molecules. Additionally human life is constrained by our cognitive limits, i.e. the limits to which we can truly comprehend the world that we are embedded in.

Human limitations

Paying attention to timeless patterns, and never forgetting them, helps anchor us firmly in what Riane Eisler calls the partnership model rather than the domination model. We are well advised to remember that the linear language of human speech and writing is not the most appropriate technology for nurturing and sustaining collective intelligence. All attempts of powered-up human empire building have a perfect track record of failure. In contrast, we know that rock paintings and non-linear diagrammatic representations allowed high fidelity knowledge preservation and transmission within de-powered societies across many millennia.

In his book ‘How Forests Think – Toward an Anthropology Beyond the Human‘ Eduardo Kohn elaborates how humans are not only part of an ecology of care, and capable of nurturing relationships that extend far beyond humans, but he also reveals the fundamental patterns of semiosis and thought that are inherent to all forms of life, at all levels of scale.

The European conceptualisation of the individual human ego is a product of the misguided metaphor of society as a profit generating machine. A shift to ecosystems of human scale groups reduces the spurious complexity needed to support a monoculture, and it retains and even grows adaptive cultural complexity, i.e. the diversity that emerges when the human ecological footprint is aligned with bioregional ecosystem functions. Adaptive complexity saves energy – it is the result of humans engaging in collaborative niche construction as a part of biological ecosystems.

Once events beyond human control force us to pay attention to the much richer metaphors of living systems, humans will rediscover the beauty of collaborating at human scale, and that co-creating beautiful works of art is the ultimate antidote against the emergence of social power dynamics and the competitive logic of hate and violence.

Picture by Ülkü Mazlum

Cultural evolution towards human scale

Genuine non-superficial change is never easy. It takes effort. It takes time. There are no short cuts. Naive incrementalism can easily make things worse. This is why so many people have completely given up any hope of genuine change.

The neurodiversity movement is a human rights movement. No one and no organisation can genuinely claim to be supportive of the neurodiversity paradigm without committing to the political goals of the neurodiversity movement. Working towards the political goal of protecting the human rights of all disabled people, including the human rights of neurodivergent people amongst other things, requires confronting routine human rights violations carried out by institutions in the healthcare and education sectors in countries that pride themselves on their human rights track record.

Humanity’s biggest crisis is not climate chaos. It is not ecological collapse. And it is not economic collapse. Our biggest crisis we are facing is a crisis of a lack of imagination which at scale manifests as a crisis of institutions.

What is wrong with super-human scale social systems?

There are a number of parallels between the impact of the development of economic theories on human society and the social impact of the development of the Internet. Neither the Internet nor economics draw directly on an evidence based understanding of physics, biology, and human behaviour.

Both the Internet and economic theories are best understood as prescriptive rather than as observational tools – as language systems that are based on specific European/North American cultural conventions that are assumed as “sensible” (common sense) or “obvious” (self-evident).

The anthropocentric “civilised” desire to use technology as well as medication at scale, to control and predict the future of complex social systems, and thereby perpetuate and strengthen social power gradients has a long history. The following segment from Adam Curtis’ documentary HyperNormalisation (2016) is a good starting point.

For those who are unfamiliar with the history of “artificial intelligence”, this segment offers a good introduction. At the same time, it implicitly provides an explanation for the growth in disorders described in the Devil’s Sadistic Manual (the DSM).

In this time of existential planetary crises it is irresponsible and suicidal to get sucked into the vortex of the distorted logic of the invisible hand of the market. Hypersensitive Autistic people have been worried about the suicidal path of “civilisation” for decades, but so far this has not prevented magical beliefs in green growth, sustainable capitalism, and other “solutions” that all involve “out-smarting” the planetary ecosystem with human “intelligence”.

Letting go of the desire of super-human scale control

Human and non-human suffering on this planet can only be minimised by fully acknowledging human cognitive limits, i.e. the limits of our ability to understand the world, make sense of all the events around us, and our inability to predict the future.

This timeless wisdom is is a lesson that neurodivergent thinkers have always understood, going right back to the earliest days of our species; it is reflected in many older ways of knowing that have left traces in Buddhist philosophy and other spiritual traditions.

The problem with spiritual traditions is that they easily become corrupted and co-opted as soon as the limits of human scale are surpassed. The only way of preventing the perpetuation of endless cycles of co-opting and delusional super-human scale “civilisation building” initiatives is to reject all forms of super-human scale ambitions of “control”, and to (re)learn to trust the imaginative potential that can be unlocked in de-powered human scale groups.

A transition towards de-powered human scale social operating systems is possible even under the most oppressive circumstances, because de-powered ways of collaboration and mutual aid are very difficult to detect and comprehend by those who are only able to view the world through a lens of social power dynamics. Culturally well adjusted humans in a powered-up world fail to perceive genuine changes that are not reified in hierarchical structures of control.

New social operating systems can proliferate via self organisation at human scale as long as they remain immune to attempts by:

(a) groups to grow beyond human scale limits and

(b) individuals / small groups to establish permanent social power gradients.

Autistic people play a unique social role in this context. An Autistic presence is an essential ingredient of any healthy human scale de-powered group. Last week I had a wonderful conversation with Anne Borden King from Noncompliant on The power of international neurodivergent collaborations. Autistic people are not asking for power, they are simply asking to be taken seriously when pointing out toxic social power dynamics.

How to transition to human scale?

For our journey into the future we need appropriate tools for addressing challenges and needs over different time horizons.

To think and collaborate creatively around transitioning to human scale, requires a combination of

  1. short-range tools for survival (here and now),
  2. mid-range tools for healthier lives (during the transition), and
  3. long range tools for multi-generational de-powered cultural evolution.

Some people refer to this approach to intentional paradigmatic change as the three horizons model, only that in the classical context of industrialised busyness “long range” usually refers to a few years at best, symptomatic of the disabling short attention span within industrialised societies. The three horizons model also has limits, it does not equate to a simple recipe for “success”. Often you only gain a clearer picture of the long-range target someway along the way as new designs and insights emerge and evolve.

In the book “The beauty of collaboration at human scale” I highlight the invaluable role that marginalised minorities and neurodivergent people have always played in human cultural evolution, in particular in times of crisis. Below is an overview of regional, local, and online community-oriented work that may assist us to unW.E.I.R.D. some of the perverse institutions of Western culture and to develop new institutions that are attuned to human scale. Please get in touch in case you would like to contribute to any of these initiatives or if you have related questions.

Short-range tools for survival

  1. Communal definition of Autistic ways of being
  2. Education in the ND paradigm, the ND movement, and autistic culture
  3. Autistic trauma peer support
  4. Employer psychological safety rating service
  5. Bullying alert service for employees

Mid-range tools for healthier lives

  1. Intersectional cultural and psychological safety across all aspects of life
  2. Ban of conversion therapies
  3. Creative Collaboration
  4. Appreciation of neurodiversity in the education sector
  5. Appreciation of neurodiversity in the healthcare sector
  6. Autistic communities in public libraries
  7. Global Autistic Task Force on Autism Research
  8. The Design Justice Network
  9. Co-creating a Centre of Autistic Culture in Auckland, Aotearoa
  10. Translation of AutCollab.org content

Long-range tools for multi-generational cultural evolution

  1. The NeurodiVenture operating model for worker cooperatives
  2. Filtering, collaboration, thinking, and learning tools for the next 200 years
  3. Co-creating Autistic / ND communities

Reducing toxic cultural complexity

Powered-up societies are characterised by a continuous tendency to add more and more mechanisms of control to perpetuate established social power gradients. Any transition towards a genuinely de-powered social operating model includes phasing out the spurious cultural complexity of super-human scale institutions of control that exert coercive powers.

Such a great simplification of social operating systems can occur in two basic ways:

  1. Voluntarily and consciously, by realising that emergent human scale collaborations have made some institutions of power obsolete, and by providing viable exit paths for the inmates of these institutions.
  2. Involuntarily, by forces beyond human control, such as increasingly severe extreme weather events, ecological collapse, and breakdown of brittle energy intensive and under resourced systems that implode under their own bureaucratic weight.

As Joseph Tainter’s analysis of complex societies shows, collapse of hierarchical complexity “is not a fall to some primordial chaos, but a return to the normal human condition of lower complexity”. Declining marginal returns on investments in established administrative structures ultimately result in an imperative to establish less energy intensive forms of collaborations that are more inclusive in terms of the diversity of stakeholders involved in shaping the path forward.

A shift from a W.E.I.R.D. monoculture to ecosystems of human scale groups reduces the spurious complexity needed to support a monoculture, and it retains and even grows adaptive cultural complexity, i.e. the diversity that emerges when the human ecological footprint is aligned with bioregional ecosystem functions. Spurious complexity wastes energy – is the result of humans working against biological evolution, whereas adaptive complexity saves energy – it is the result of humans engaging in collaborative niche construction as a part of biological ecosystems.

In this context the non-human ecological environment is the greatest ally of Autistic people and all others who appreciate the beauty of what biological life and de-powered ecologies of care have to offer.

Evolutionary design allows organisations and people to participate in the evolution of a living system and to integrate their knowledge into a living system that includes humans, non-humans, and human designed systems.

Phasing out the Devil’s Sadistic Manual

An obvious mid-range goal of de-powering involves phasing out the Devil’s Sadistic Manual (DSM).

A few days a go Dr Robert Chapman, an Autistic philosopher, pointed me to the Power Threat and Meaning (PTM) framework that has been developed by the British Psychological Association. The PTM framework is a potentially interesting tool for incrementally moving away from the DSM to a more holistic and less pathologising approach to human well being.

The framework stops short of being pro-active, and still assumes an ambulance at bottom of the cliff approach. It also assumes that social power dynamics are the main source of problems people encounter, which is true in powered-up societies, but not necessarily in healthy de-powered societies and groups, where amongst other things peer support may replace the need for professional therapists. By not demanding any changes to social norms that would make society less toxic, the focus remains on individuals and problems related to individual relationships. Hence I see the PRM framework as pertaining to a mid-range time horizon on the path towards de-powered social operating systems.

Extracts of interesting parts of the PTM

So far I have only skimmed over the 400 page text, and and have tucked into sections that seemed interesting from the perspective of undoing some of the damage caused by the pathologising language found in the DSM. If you are familiar with this framework and have seen it in use, I would be love to learn more and hear about your experiences.

… This is despite the fact that national (Read et al., 2013) and international (Lasalvia et al., 2015; Seeman et al., 2016) research confirms that ‘the notion that mental disorders are simply “brain diseases”…that exist as such in nature… is responsible for unwanted and destructive pessimism about recovery…(It) results in stigmatisation and rejection from the outside, and self-attribution and self-blame from the inside’ (Lasalvia et al., 2015, p.512).

We literally embody things people fear at a profound level – unreason, challenge to social contract, highlighting issues people can’t tolerate such as the futility of living, familial abuse, vulnerability to violence and mortality. What better way to wipe away these fears than by locating them in a “broken” person rather than by acknowledging them as consistent, frightening features of society?’ (service user quoted in Beresford et al., 2016, p.19).

we are active agents in our lives at the same time as facing many very real limits and barriers to the changes we can bring about. Those limitations may be material (money, food, transport) biological (physical disability) psychological (fear, anxiety, self-doubt) and/or social (gender expectations, isolation, discrimination.) More subtly but perhaps most damagingly, they may take the form of the meanings, beliefs, expectations, norms and values that we absorb, often unconsciously, from wider society.

Our framework offers a way of constructing a non-diagnostic, non-blaming, de-mystifying story about strength and survival, with the potential to re-integrate many behaviours and experiences which would currently be diagnosed as symptoms of mental disorder back into the range of universal human experience. The overall message is: ‘You are experiencing a normal reaction to abnormal circumstances. Anyone else who had been through the same events might well have ended up reacting in the same way. However, these survival strategies may no longer be needed or useful. With the right kind of support, you may be able to leave them behind.’ This position offers a way out of the conceptual trap by recognising and making sense of the very real struggles people have faced and continue to face, while also conveying the message that within some unavoidable limitations, they can be supported to reclaim a greater degree of responsibility and control over their lives.

In the short and medium term, psychiatric diagnoses will still be required for people to access services, benefits and so on. These rights must be protected. Equally, we all have a right to describe our experiences in the way that makes most sense to us. This right has not always been accorded to service users, who may be seen as ‘lacking in insight’ if they query their diagnosis. However, it is our hope that the framework offered here will, in the longer term, encourage and allow all of us to let go of diagnostic thinking.

The idea of backward causal chains, though often very useful, may also be inadequate where there are complex interacting processes. All clusters, however, are provisional, and developments in theory and technology over the next decades are likely to result in new clusters being proposed and existing ones rearranged or abandoned although this does not detract from the fact that many existing medical clusters may have very good evidence for their validity. But this constant process of change can be hidden not just because unsuccessful clusters may be remembered only by historians, but because everyday language tends to reify the abstract names given to the clusters (or, more correctly, the concepts inferred from them), that is, we talk as if these abstract names were descriptions of things, for example ‘He has cystic fibrosis’. This can give diagnostic concepts – both medical and psychiatric – an impression of solidity and permanence quite inappropriate to their abstract status.


clinicians have to rely almost entirely on subjective judgements and social norms both in devising diagnostic criteria and in trying to match people’s feelings and behaviour to them. For example, assessments of criteria such as ‘excessive guilt’, ‘irritable mood’, ‘deficient sexual fantasies’, ‘inappropriate affect’, ‘unusual perceptual experiences’ or ‘marked impairment in role functioning’ are not only very subjective, they also depend on social judgements about how people ought to feel or behave in certain circumstances. In fact, nearly every DSM/ICD criterion is ultimately based on this kind of subjective judgement.

Emphasising its reliance on social judgement, the DSM requires that people’s feelings
or actions should not be counted as symptoms of a mental disorder if they are normal, expected and culturally sanctioned responses to a particular event, hence the frequent use in manuals of terms such as usual, appropriate or excessive. In other words, to count as a symptom, what people feel or do should not be intelligible or understandable in their particular personal, social and cultural context; their feelings or behaviour might instead be described by those around them as extreme, irrational or bizarre. It is this claimed lack of intelligibility which is said to justify treating these feelings or behaviour as qualitatively different from ‘normal’ actions or feelings and to justify applying a medical framework.

statistical studies which apply various clustering techniques to the problems people present to psychiatric services, have found that the resulting clusters do not match DSM categories. In other words, people’s own reports of their problems do not follow the kinds of ‘patterns’ set out in the DSM.

there is also little evidence that DSM diagnoses predict which treatments will work in spite of the use of disorder-specific names such as antidepressants, antipsychotics, mood stabilisers or anxiolytics (Bentall, 2003, 2010; Deacon, 2013; Kirk et al., 2013; Moncrieff, 2008).


By presenting emotional and behavioural problems as symptoms of mental disorder, by locating problems primarily in people’s brains and bodies, medicalisation and diagnosis help obscure the well-evidenced causal role of social and interpersonal factors in distress and make it much more difficult to understand people’s problems in the context of their lives and relationships.

Psychiatric diagnosis inevitably involves subjective social judgements, influenced by dominant cultural norms and values – in this case often those held by higher class white Western men – about how people ought to think, feel and behave.

The fact that Western society is highly individualised can also make it seem natural to turn to a medical and biological discourse which locates explanations for problematic feelings or behaviour in the individual’s brain or mind. All of this creates powerful obstacles to understanding the problems these explanations present.

Those who fall outside the dominant discourses are most likely to be seen as, and to experience themselves as, ‘bad’ or ‘mad’. All of this is reflected in psychiatric diagnosis’ inevitable dependence on social judgements, as we discussed in Chapter 1, and many critics have traced particular diagnoses back to the social norms they challenge: ‘borderline personality disorder’ for women who are too angry; ‘depression’ for women who are exhausted by domestic demands; ‘anorexia nervosa’ as a reaction to the unrealistic role and appearance standards faced by modern women; alcohol misuse and suicide for men whose socialisation does not permit the expression of despair in other ways; ‘ADHD’ for children who are not suited to educational regimentation, and so on (Bordo, 1996; Lafrance, 2009; Proctor, 2007; Timimi, 2010 and see Chapter 4, on gender). These rule transgressions can involve over-adaption to the ideal image, as well as failing to live up to it; thus Paul Verhaeghe (2012/2014) sees ‘psychopathy’, ‘narcissistic personality disorder’ and ‘sex addiction’ as extreme examples of taking cultural messages on board.

Similarly, it has been suggested that the enormous rise in diagnoses of ‘autism spectrum disorders’ and ‘Asperger’s’ may partly reflect demands made by highly industrialised and service-oriented economies for successful employees to display emotional behaviours such as (faked) sociability, warmth, gratitude, passion and so on – skills which do not come easily to everyone (Roberts, 2015).

Autistic people are not for sale

The actual effect of the myth of meritocracy, which is used to normalise and rationalise head to head competition, is a consistent bias to over-represent capabilities, and to actively avoid thinking about externalities. This is familiar to anyone who has ever been exposed to advertising. The cult of busyness undermines attempts at creating a shared understanding at a very basic level. The collective effects at scale and over decades are disastrous.

Collective behaviour in powered-up societies

Powered-up societies that tolerate social power gradients within a group and between groups are characterised by social norms that promote self interest over compassion. The more entrenched and effective these social norms are enforced within a society, the greater the normalisation of competitive social games.

The most extreme form of powered-up societies are societies that are dominated by the belief in the religion of the invisible hand of the market, in which most institutions have been designed on the assumption that the invisible hand of the market has a beneficial effect on human society. Of course, even a cursory honest look at global indicators of human well-being shows that nothing could be further from the truth of lived experience.

The trouble is that even when large numbers of individuals start to lose faith in the religion of the invisible hand, as is happening right now in many countries, atomised individuals and small nuclear families feel completely powerless in the face of the many powered-up institutions that effectively dictate the terms of life for all living creatures on this planet.

Self-preservation is the primary purpose of all powered-up institutions, far ahead of serving the needs of local ecosystems and communities. Even if the powerless human cogs in the institutionalised machine are fully aware of this fact, their dependence on the industrialised machine for basic survival and their lack of the essential life skills needed to survive outside of the industrialised machine, has resulted in a level of paradigmatic inertia that is best understood as complete paralysis – and this level of paralysis is rationalised, i.e. is perceived as “normal”.

Awareness of the paralysed state of normality is experienced as hyper-normality, an extreme state of cognitive dissonance, where all of human life has morphed into a competitive social game of pretend play, where the pretence of technological and social progress has become the main objective of the game.

The impact of hyper-normality on human and non-human lives is devastating and self-destructive, as all forms of mutual trust and mutual aid are systematically undermined by sanctified institutionalised bullshit, all in the name of technological progress, meticulously quantified and aggregated in abstract financial metrics of busyness. In a digitally networked world that serves as an omni-present temple for worshipping the invisible hand, abstract institutions and their powers are experienced as more “real” than living ecosystems and biological entities.

When the human dependence on hyper-normal institutions is stronger than the level of mutual trust and compassion between humans, culture has become divorced from its biological substrate, and biological life has been sidelined, and is treated as an abstract economic “externality”, i.e. a lower order effect that can be safely ignored within the realm of the hyper-normal social game. There is no escape path from within the game. The paradigmatic inertia of the culture locks all participants into a “stable” state on the suicidal path of cancerous growth in busyness.

Hyper-normalised humans are highly traumatised and hyper-vigilant humans who, in service to the social game, have become unable to extend trust to the people around them without relying on hyper-normalised institutions and their technologies as intermediaries. Some critical observers refer to this state of affairs as the Capitalocene; where abstract capital serves the needs of capital, i.e. the growth and aggregation of capital via liquidation of the entire planet, and ultimately the entire universe.

Within the Capitalocene the identification, labelling, and pathologisation of neurodivergent non-compliant humans is not only “normalised”, it is also immediately recognised as a new market that creates plenty of busyness opportunities. Celebration of neurodiversity is easily co-opted into the social game, within which neurodivergent people are the fuel from which economic “utility” in the form of abstract captial growth can be extracted. The Autism Industrial Complex is a prime example of the way in which cruel dehumanising and traumatising behaviourist techniques of coercion are hyper-normalised into a busyness opportunity.

The systemic suppression of human imagination within the Capitalocene means that it has become easier to imagine the end of the world than the end of capital. However, no matter how much energy is harnessed in service to capital, the “externalities” in the economic game, from climate chaos to ecosystem destruction, are starting to overwhelm and disrupt the logic of capital with increasing frequency.

Over the next few decades, as the Capitalocene is eroded and replaced by forces much larger than capital and also much larger than any form of human agency, it is worthwhile to step back and reflect about the ways in which we humans can not only rediscover the biological foundations of humanity, but also healthy limits of human scale in terms of social organisation, as well as healthy way of re-integrating ourselves into the local biological web of life and into ecologies of mutual care beyond species boundaries.

For Autistic people it is a waste of time engaging in conversation with neuronormative people who are unfamiliar with the pseudo-scientific foundations and the ideological bias of the W.E.I.R.D. social game.

There is a very important distinction between arguing to “win” and bi-directional sharing of knowledge and experiences to learn from each other.

It is helpful to distinguish five basic categories of beliefs and related knowledge:

  1. Beliefs based on scientific theories backed by empirical evidence that we are intimately familiar with. Only a small minority of our beliefs fall into this category.
  2. Beliefs based on scientific theories backed by empirical evidence that we are not intimately familiar with. If we are “educated”, a sizeable minority of our beliefs fall into this category.
  3. Beliefs based on personal experiences and observations. For those who identify as autistic, a significant number of beliefs held fall into this category.
  4. Beliefs that represent explicit social agreements between specific people regarding communication and collaboration. For those who identify as autistic, a significant number of beliefs held fall into this category, especially agreements with family, friends, and colleagues.
  5. Beliefs based on what others have told us and what we have been encouraged to believe by parents, teachers, and friends, … and politicians and advertisers, etc. For those who do not identify as autistic, the majority of beliefs held fall into this category.

All categories of human beliefs are associated with some level of uncertainty regarding the validity and applicability to a specific context at hand.

When people argue to “win”, they mostly rely on beliefs in category 5 (opinions). Such arguments are about dominance, not facts.

W.E.I.R.D. societies systematically pathologise all those who are not fully “functional” and “culturally well adjusted” machines within the factory model of society. The pathology paradigm ensures that all defective machines are identified and to the greatest possible extent are corrected by suitable therapies and medical interventions, to get as close to normal “functioning” as possible.

These graphs from Google’s Books Ngram Viewer (word usages in published books) reflect the rising levels of significant trauma in our society, i.e. the “autism epidemic” and the concern about a [lack of] externally visible displays of empathy, and the rising levels of addiction to the various forms of social status that are cult-ivated by the busyness of abstract economic growth. These trends coincide with the prominence of the internet in human lives, and thinking about the W.E.I.R.D. cultural bias that is baked into the very foundations of profit driven social media platforms and other internet technologies, this is not surprising.

People who are able and willing to play social games, very easily get pulled into addictions related to social status. These effects have been amplified with the global rise of neoliberal ideology, facilitated by internet based social technologies. They are visible in the rise of corresponding pop psychology terminology around narcissistic behaviours.

The many invisible hands of capital that shape the algorithms of that mediate digital human interactions are keeping billions of people firmly anchored within the W.E.I.R.D. ideological prison. On the one hand Autistic whistle-blowers are pathologised and demonised, and on the other hand our culture actively encourages narcissistic behaviours. The outcome is predictable.

Collective behaviour in de-powered societies

I have written extensively about this topic, and for anyone who is seriously interested, there is no shortage of excellent books on what we know from studying cultural evolution over the course of the last 300,000 years, and there is a growing body of knowledge that is being generated, shared, and curated by neurodivergent people who are engaged in collaborative niche construction outside – or at least partially outside – of the Capitalocene.

Additionally, we also know that human babies who have not yet been exposed to competitive ideology are consistently prepared to help others who seem to struggle with achieving a goal, for example with opening a door etc. This innately cooperative tendency is not limited to familiar family members and friends, but also applies to strangers.

In this article I just want to draw attention to the profound shift in human collective behaviour that is triggered as soon as a small group of humans rejects the religion of the invisible hand, and starts to systematically re-prioritise compassion over self interest.

De-powered groups represent an alternative and genuinely stable state of social organisation and cultural evolution at human scale. Human scale groups of hunter gatherers in Australia survived and thrived in small groups for over 70,000 years, without completely destroying local ecosystems, and without triggering a mass extinction event. We are well advised to take the time to study and understand the cultural foundations that differentiate de-powered human scale cultures from the increasingly short and destructive boom and bust cycles of so-called “civilisations” that have become the dominant form of social organisation over the last 10,000 years.

Within a human scale group, a shift towards social norms that no longer tolerate social power gradients over time results in a rise in altruistic brehaviour, in mutual trust, and in individual behaviour that assumes the absence of purely self interested motives as a default. Ten years of lived experience with the NeurodiVenture model have taught us that it can take newcomers several years to un-learn entrenched old habits and to adapt to life in a culturally and psychologically safe environment.

There are many ways of failing on the path towards de-powering the relationships within a group. De-powered life does not equate to a life without disagreements and to a life without a multitude of different perspectives. Quite the opposite is the case. The main difference to powered-up life is the level of conscious awareness about individual differences in needs, and the celebration of these differences, by encouraging people to explore new creative forms of collaboration, which become possible within a compassionate ecology of mutual care, in which prosocial norms protect against the emergence of permanent social power gradients.

Creative collaboration vs the invisible hand

It is important to understand how creative collaboration within a de-powered environment differs from the competition encouraged by the invisible hand in powered-up environments.

The actual effect of the myth of meritocracy, which is used to normalise and rationalise head to head competition, is a consistent bias of all participating agents to over-represent their capabilities, and to actively avoid thinking about any potential externalities. This is familiar to anyone who has ever been exposed to advertising.

In other words, the elevation of competition to a virtue results in an environment that actively encourages corner cutting and deception.

In such an environment, no one is actually sticking to the agreed rules of competition for a particular market. Instead, everyone has strong incentives to be perceived as sticking to the rules, by taking the most creative interpretation of the rules that is possible without triggering negative consequences. This tendency can be observed in all sectors of the economy in industrialised societies. The limited liability of corporations and the very limited powers of regulators means that any punishments for rule violations equate to symbolic slaps on the wrist, without any tangible impact on future operations.

At an individual level the invisible hand consistently rewards psychopathic lack of compassion. It does not take a genius to understand that this ultimately results in psychopathic hyper-normalised institutions. Attempting to counteract this tendency via improved regulation is futile once a critical mass of individuals with psychopathic tendencies have occupied key positions in established institutions.

Improvements in regulation are either conceived as perception management initiatives from the start, or they encourage the most powerful agents to identify and actively engineer new loopholes that allow corner cutting in areas that evade the scrutiny of regulators. The most powerful agents also have the deepest pockets to easily cope with heavy handed bureaucratic perception management demands. In contrast, the least powerful agents, who may offer genuinely useful services, with fewer toxic externalities, may not be able to afford to submit to expensive compliance rituals. They stand a high chance of being perceived as too small, and therefore as too “risky” to engage with in a world where bigger is always better by definition, and where being smaller is always interpreted as a sign of weakness.

The primary framing of evolution as competition – as if there are no people who reject the concept of competition as inherently cruel – is a traumatising and nauseating waste of time that only achieves one thing: the destruction of the fabric of trust that is the foundation of all healthy (de-powered) human scale societies.

The continuously evolving creative collaboration of cells and microbes within a complex organism is de-powered; there is no social power hierarchy of cells, and there is no social power hierarchy of microbes. Complex organisms have evolved non-trivial immune systems to detect aberrant competitive and exploitative mutants or invaders. Hierarchical power structures are abstractions that only exist in the minds of animals with complex brains. In the bigger scheme of evolution, hierarchical power structures are unusual.

More and more people, including neuronormative people who grew up with supportive parents, are openly questioning the fundamentals of industrialised “civilisation”, and are confronting the timeless patterns of human limitations.

The ethical issues raised by stewardship of social systems and ecological systems require input from philosophy, public policy, and disciplines across the humanities. There is no viable hands-off approach. Inaction on the part of scientists and regulators only hands the reins of collective behaviour over to a small number of individuals at for-profit companies.

In this context it is misguided and dangerous to entertain magical beliefs about the capabilities of so-called artificially intelligent systems designed by mere humans, which are only capable of emulating learning by imitation, and which run on highly resource and energy intensive and often unreliable technological infrastructure.

It is easy to gloss over all the implications of the limits of human cognition and the limits of human agency, and it is also easy to underestimate the immense diversity in cultures and human collective behaviour that our species is capable of. From an Autistic perspective, we are well advised to stay clear of all attempts of actively shaping cultures beyond the limits of human scale – because by definition, beyond these limits we are genuinely incapable of understanding the implications of our decisions and actions.

Competing against each other using culturally defined rules

Culturally well adjusted neuronormative people understand collaboration to mean working against each other according to culturally defined rules.

Think about that for moment. A few years ago I explicitly suggested this “definition” to several culturally well adjusted people, and they confirmed that this is effectively how they perceive their corporate or academic work environment. I’ve also been told the same thing in different words by a small company owner, who explained that in business there is no such thing as an eye level partnership.

People with elevated baseline sensitivities that leave them more vulnerable to being severely traumatised, who cope with trauma via social withdrawl, mutism, shutdowns and meltdowns, are systematically disadvantaged in all societies that tolerate persistent social power gradients within relationships. Since the entire industrialised world has been built on the myth of meritocracy and on the belief in the sacred invisible hand of competitive markets, it is not surprising that hypersensitive Autistic people are systematically marginalised and exploited – not because they are any less competent, but because a neurologically hard wired innate sense of fairness and social justice prevents most Autistic people from playing competitive games to “succeed”, i.e. to personally benefit from “out-competing” others.

In a hyper-competive world unexpected non-compliant behaviour of Autistic people is often misunderstood, experienced as confusing, and sometimes this means that Autistic people are perceived as “manipulative and untrustworthy”.

A very effective technique for reducing misunderstanding is the technique of asking clarifying questions, especially asking for concrete examples (validation by instantiation) to illustrate the intended semantics of a specific word or statement. Again, in a hyper-competitive world, asking for concrete examples is easily perceived as rude, and similarly, offering examples of similar experiences – to convey shared understanding and compassion, can also easily be misunderstood.

The competitive mindset in our society undermines collaboration and attempts at creating a shared understanding at a very basic level. The collective effects of paradigmatic inertia at scale and over years and decades are disastrous.

The notion of life as a competitive game found its way into the science of biology by interpreting Darwin’s theory of evolution through the cultural lens of capitalism. The complementary perspective of life and evolution as a cooperative game as described by Pyotr Alexeyevich Kropotkin in Mutual Aid: A Factor of Evolution (1902) was largely ignored in “developed” capitalist societies throughout most of the 20th century.

The timeless and universal architecture of safety

Picture by Ulku Mazlum

It is wise to ignore discipline boundaries when engaging in knowledge archaeology. Many of the observations resulting from a transdisciplinary or anti-disciplinary approach don’t neatly fit with the siloed W.E.I.R.D. ways of knowing.

Old rock paintings and diagrammatic representations illustrate how important knowledge can be transmitted reliably in otherwise largely oral human scale cultures over tens of thousands of years. The diverse cultures that evolved in Australia illustrate not only human adaptability but also how the seemingly impossible survival in extreme ecosystems becomes possible at human scale. Through the self-serving distorted lens of European cultures of course, written language is a fairly recent “invention”, and the only “proper” written language is one with a linear syntax.

Human primates

In some ways, from a biological perspective, specifically how we cope with stress, it is helpful to think of humans as primates, but in other ways, related to the extent of the human capacity for culture, this is only one small aspect of what makes us human.

This interview with biologist Robert Sapolsky on the commonalities and differences between other primates and humans contains three valuable insights:

  1. Our internal experience and external behaviour is shaped by a mind-boggling number of factors.
  2. A large number of biological and neurological factors interact in complex ways that are impossible to disentangle.
  3. Free will is likely an illusion created by our brains and minds, i.e. it is a learning tool that motivates us to make good use of all our experiences when making important decisions.

Please note that I find the the biological machine metaphor invoked by Robert Sapolsky to be unhelpful. A complex biological or ecological system metaphor would be much more appropriate. Complex environments are inherently unpredictable, and the illusion of predictability and determinism associated with the machine metaphor is rather dangerous. Neither neuronormative people nor Autistic people are mechanical robots.

Perhaps the notion of a lack of free will in the absence of determinism – because biological and ecological systems are complex, is even less palatable and even more scary for “civilised” people, whose entire identity and self-worth is built around the idea of “being in control” and “wielding power” over others and the environment.

Humans

The three observations above invalidate many assumptions that are baked into industrialised “civilisation”, and they point us to important truths about humans:

  • We can acknowledge that most of the time most people are probably trying their very best under the given circumstances.
  • We can acknowledge the huge role that culture plays in shaping neuronormative human collective and individual behaviour.
  • We can acknowledge the unavoidable, insane, and ultimately existential risks that come with all super-human scale cultures, the complexity of which far exceeds our ability to comprehend.
  • We can acknowledge the inevitable struggles that emerge along the path of rediscovering collaborative niche construction at human scale, i.e. we need to (re)learn to focus on human scale, and learn to ignore the many super-human scale distractions created by industrialised “civilisation”.
  • We also can also acknowledge the huge role that differences in sensory experiences and sensory overload play in shaping Autistic human individual behaviour.
  • We can focus on compassion and mutual aid instead of perceiving the people around us as competitors.
  • We can start celebrating diversity within groups and between groups as essential ingredients for maintaining peaceful de-powered relationships between people and between groups.
  • We can refrain from hating other cultures simply because they are unfamiliar or seem scary from the outside.

Given the lack of free will, and recognising the complexity of human life, blaming people for “their” behaviour is pointless. In particular labelling a person and attributing blame to one party in a strained relationship is counter-productive.

Furthermore, issuing pathologising labels to both parties in a strained relationship is also counter-productive. It detracts from all the factors that may make a particular situation unique, which hold the key for leaving behind old patterns; and pathologising labelling risks people getting stuck in a preconceived pattern and in hopelessness, i.e. that things can’t and will never change.

Labels can be helpful only insofar as they are framed in a non pathologising way, to assist with pattern recognition, with learning from and with each other, and with stepping out of unhelpful patterns onto new terrain, which can be explored as needed with the help of appropriate peer support.

Cultural evolution at human scale

Humans have a biological need for the kind of long-term trustworthy and dynamically evolving relationships that are only possible within a stable ecology of collaborating human scale groups, i.e. each group may be collaborating with between two and five other groups, with each group consisting of between 20 and 150 people who live together in several smaller household units.

In atomised and hypernormative industrialised societies, beyond the toxic social power dynamics that plague all “civilisations” with powered-up structures of control, the human scale social safety nets of neurodivergent people have been systematically destroyed.

We can take comfort in what we can glean from pre-civilised small scale societies in terms of anthropological and archaeological evidence. At human scale, in de-powered social environments, individuals can rely on long-term trustworthy relationships at three levels: within a household, within a group, and via kinship and friend relationships with people from other small groups. Thus, in case a particular relationship turns ugly and becomes traumatic beyond repair-ability, as a result of any number of potential reasons, there is always the ability to create safe boundaries by retreating to a place of safety in another household or group.

Elinor Ostrom’s pioneering field research frames universally observable patterns for coordinating life at human scale in terms of 8 prosocial design principles.

If we combine lessons about cultural evolution and lessons about human stress responses, we can harness the ability for culture to override latent primate behaviours.

Humans excel at collaborative niche construction as long as we stay within the safe limits of human scale, and as long as we prioritise cultural norms that de-power our relationships, and norms that prevent us from attempting to influence social environments beyond the limits of human scale.

In healthy de-powered human scale societies humans feel safe, they know each other, they trust each other, and they are equipped with social norms that clamp down on in-group competition.

Fears of inherently unpredictable environments can only escalate in unsafe social environments, i.e. environments that are devoid of mutual trust.

Risks of (a) suicidal collective delusions – magical thinking amplified by unwarranted trust in people or human technologies and (b) deadly wars – triggered by myths of cultural superiority and by “normalised” social power gradients, can only escalate in the presence of super-human scale institutions of coercive power and control. Powered-up institutions of control prevent the free flow of knowledge and the dynamic reconfiguration of the social safety net between people.

Feeling safe

The timeless universal architecture of cultural and psychological safety boils down to awareness of the limits of human scale, and to de-powering all our relationships. In a de-powered human scale environment:

  • We can be optimistic about our ability to learn and heal from trauma.
  • The essential role that safety and mutual trust plays in collaborative niche construction becomes obvious.
  • The level of collective intelligence and adaptive behaviour is optimised, there is no impedance mismatch between group size and our cognitive limits.
  • The local complexity that emerges and that we can comfortably deal with keeps our minds stimulated and makes us feel fully alive.
  • Our social environment consists of multiple autonomous household units with strict boundaries.
  • As needed, reconfiguration of relationships within and between households allows us to maintain an environment that offers safety and protection from harm for all members of a group.
  • We regularly collaborate with a small number of people from other human scale groups, some of which may have significantly different cultures.
  • We cultivate non-violent conflict resolution protocols for group members, and everyone is familiar with these protocols.
  • We cultivate non-violent conflict resolution protocols for engagements with people from other groups / cultures.
  • We cultivate protocols for incrementally developing trust and appropriate boundaries when encountering unfamiliar groups / cultures.

Furthermore, in such comprehensible (human scale) social environments, de-powered communication and collaboration is the norm, and it becomes very easy to identify significant deviations from these norms, i.e. persistent attempts of one person or a small group of attempting to wield power over others. In such environments the essential cultural role of hypersensitive Autistic people becomes obvious for everyone, and the industrialised separation between “work” and “life” can be seen for what it is: a divide and conquer strategy that is designed to perpetuate our dependence on toxic institutions of oppression.

Autistic people and other traumatised people should be free to imagine and realise a world where we don’t have to leave behind everything we value in life to go to “work”, only to perpetuate the sanctified institutional bullshit that is killing the entire living planet.

Onwards!

How safe do you feel?

The voice of Autistic data is loud and clear. The neuronormative society that surrounds us does not allow us to feel safe. Our research aggregates data from Autistic people from all over the world.

Frequency of negative feelings

The biggest sources of Autistic fears

You can contribute to ➜ this entirely anonymous survey to help us better understand the experienced level of cultural and psychological safety of people all around the world, including the experiential differences between neurodivergent and neuronormative people. Your contribution is much appreciated.

As always, this survey is a collaborative Autistic community initiative, and all suggestions for improving the survey are welcome.

Some of the answers we are getting from Autistic and otherwise neurodivergent people regarding the level of safety experienced in healthcare settings:

What are the most important things you wish healthcare professionals to know, respect, and do, when engaging with you?

  1. To be heard and heeded. To no longer be dismissed. To open their eyes and brains about pathologization and dehumanizaton of neurodivergent/others. Stop assuming all humans are identical, stop assuming they are the expert when they are totally ignorant. Stop talking down to me, stop infantilizing me. Stop telling me they couldnt tell I was Autistic, I dont look Autistic as if that is a compliment.
  2. Just treat me with respect and know my boundaries. I hope they take me seriously and hope that they don’t think that I’m disrespecting them with my behaviours.
  3. If I tell you it hurts, it hurts… You are the doctor, maybe figure out why it’s hurting, and figure something out to help it hurt less instead of blaming me for feeling pain. Quit treating me like I’m an inconvenience to YOU because I have chronic health/pain issues that no one is willing to treat beyond “take a tylenol” to deal with chronic pain, or “that’s just in your head” like there is no connection between my brain and my body that would cause acute discomfort when unable to function due to acute stress. Body doctors tend to forget the brain is responsible for controlling everything they’re trying to analyze and fix, which means if the brain isn’t okay, there’s likely to be other physical symptoms and issues that will present themselves concurrently, and it’s not all fabricated in my “delusional” mind.
  4. I’m at least as smart as they are. I know myself extremely well. I also understand their jargon.
  5. That I am telling the truth about the gravity of my difficulties and that these difficulties do not make me lesser. That I am their equal as a human being.
  6. I wish they would listen without judgement. I wish they would take on what we say we believe about our bodies and ourselves. I wish that they would have more education and information on how Autism and ADHD present in women.
  7. I like to ask lots of questions but it’s just so I can understand the rules they are setting for me and my care. Once I understand, I am a good rule follower; I’m not being difficult or oppositional.
  8. Understand that when I offer a large amount of information on what I’ve come to discuss, it isn’t an obsession, it’s that I like to be informed and prepared. When I ask about a specific diagnosis, it’s because I have spent a good amount of time researching the possibilities before I even dared bring it up.
  9. Support includes flexibility, inclusivity, accommodations, and knowledge. It’s not enough to go “ok, cool” or “I support you” and go on as if nothing’s changed after a client or patient has told the provider that they’re queer, neurodivergent, or belong to another marginalized group that may require cultural understanding or accommodations in order for them to receive compassionate, effective treatment. Being an ally isn’t just about not being a jerk, it’s also about being active in creating inclusive and safe spaces for marginalized people.
  10. My experiences are different than neurotypicals. Take me seriously. Learn about Autistics from Autistics Throw away your DSM understandings as they are steeped in outdated understandings of Autistic Ways of Being.
  11. Recognising my own diagnosis, confirmed in part by their peers.
  12. Being aware of the support that doesn’t usually work with autistic people, such as psychotherapy, behavioural therapy – including ABA, conversion therapy, electric shock therapy.
  13. Not dismissing my ongoing need for antidepressants to live. Not having lost ten years in the system because of a wrong diagnosis. Supporting me as a child, it was obvious I was different. Supporting me as a child, even if my parents don’t have a A-level. Having supported me as a child, and tried to understand what was going on, when I had to pass again three years of school. Not judging me unfit like eugenicists. Because this is mainstream in the healthcare system.

Have you had any traumatising experiences in healthcare settings that no one should ever experience? Please outline.

  1. I was abused and traumatised by the psychologist who diagnosed my autism. He not only gained the narrative of my abusers, but he preferences their narrative and acted on it. he was manipulated by them because he wanted to be manipulated by them. It seems he may believe that he believed he was ethical abusing me because autists can’t feel trauma. It seems he deliberately provoked a trauma response because he didn’t know the difference between trauma dissociation and autistic sensory overload. Didn’t even know there was a difference. The next psychologist I saw, dismissed my experience with the words he didn’t mean it. She also told me I was lucky I wasn’t confined to a wheelchair, miming lolling in the chair hanging a noose around my neck, the third, social worker, told me she didn’t need to know anything about autism to provide me with counselling. ho hum!
  2. I don’t know. I think I am way too nervous in the healthcare environment for it to be normal, but I don’t know if that is because of an experience I am repressing or if it’s just me.
  3. Blamed for most everything that happens to me physically and mentally, even if I can’t possibly be at fault (i.e. ER doc blamed me for nearly stopping breathing under general anaesthesia because I allowed the nurse to give me Dilaudid for the pain, even though it was the doctor’s suggestion in the first place because I kept refusing Morphine). Doctors seemingly don’t listen, don’t comprehend the details provided, and make incorrect snap judgements just to get you out of their office because there’s “too much going on” and “too many symptoms”. Apparently it’s “unreasonable” to have this many things happening concurrently to worry about between my mental and physical health, because “that can’t all happen to one person”. They pretty much constantly require me to know more than they do about relevant treatment options for my health issues, even though they’re supposed to be the experts telling me how to do this stuff. They tune out when I list what’s happening. (i.e. “there’s no way you can have ADHD, you’re a girl” with ALL the symptoms of ADHD, “if you were actually Autistic they would have caught it when you were a kid” with ALL the symptoms of ASD in girls, “if you make it to adulthood, you’ve got autism all figured out” with ALL the issues I’ve been fighting for 40+years while undiagnosed and am still fighting while trying to get diagnosed). I stopped trying to get assistance with pain mitigation years ago because I always get met with suspicion, like I’m trying to score narcotics illicitly, or I get told that the pain isn’t bad enough and Tylenol is sufficient, or they only offer medications that cause side effects that are worse than the pain and last longer than the meds do. I’ve had to quite literally beg to get tests run because the symptoms are pointing to something specific, they don’t believe that may be the cause because they’ve never seen it, but will begrudgingly agree to the request. Then they request the wrong blood work, but refuse to correct it or do up another test form to get the proper one done. Or they add things to the blood work sheet I very clearly didn’t need (prostate levels don’t test well when you’re lacking a prostate, and I don’t need a faecal test meant for over 50 males as a mid-40s female). My clinic is teaching, so I will occasionally see Resident Doctors on their last rotations, and I consistently get asked how my periods are, even though there is a all-caps “HYSTERECTOMY 2010” at the top of my chart intended to prevent that topic from coming up. Seems they don’t even look at the charts before they walk in the room. When I mention that note and my lack of periods to be concerned about, I usually get taken to task because they’re “just trying to help, you know” and “It’s my job to ask”, but it’s not mine to expect them to at least skim my chart before wasting my time answering useless questions when there’s already “too much going on with you” for them in the first place. They try to be arm-chair therapists when I’m updating them on current treatment status from my psychologists, and in many instances make absurd suggestions (i.e. “Just don’t work as hard at work”, “quit worrying so much about deadlines”, “have you tried meditation and yoga”). Self-diagnosis is proving to be more effective and efficient way of self-treatment since no one else in the body health realm seems to be willing to figure anything out to help beyond blaming my brain for being broken, and my body for being “too fat” and “too old”, as the cause for everything that is wrong with me. Yeah, sure that ADHD/ASD/PTSD/GAD/MDD/PD/ED mental health line-up with the multiple chronic injuries accented with chronic nerve pain and skeletal/muscular pain situation of mine is just way too much for you to listen about and think on for a few minutes because… doctor reasons?
  4. Yes, locked up in a psych ward and isolation room when I was 19. I’m 38 now. I avoid thinking about it most of the time.
  5. I was in a car crash and got 5 staples in my scalp for a wound. The scar has healed badly, I suffer pain with it and it’s swollen. I can feel my heart beat through it and its sensitive. It is visible when you look for it. One doctor reported that there is no evidence of any scar. I lost my father in the crash I mentioned. I was in public health system in Ireland for psychiatric and psychology out patient care and they told me that 9 months is the grieving period and that he lost his father and was over it in a matter of weeks.
  6. I told a Dr I was diagnosed Autistic and suspected ADHD and she told me I couldn’t be Autistic because I had good empathy and made good eye contact.
  7. Discrimination due to being transgender. After weeks of looking for a specialist, finding one, and booking in an appointment, that appointment was cancelled the moment the specialist learnt that I was transgender.
  8. I had a pediatrician growing up who did a pelvic exam on me every time she saw me and was never willing to explain why. One of my PCPs (as an adult) waited until I was in the middle of a endometrial biopsy (already very triggering from previous trauma, and painful, too) to apologize for misgendering me throughout the entire procedure. Other PCPs have tried to force speculums in me that were too large and one MA warned them that they might not have another option because “we don’t normally stock the smaller ones”. A nurse practitioner intentionally misdiagnosed me with bipolar disorder to coerce me into taking meds she knew I would refuse without a diagnosis. A therapist I saw temporarily started ranting about how modern feminism is tricking girls into believing they’re men after I (a trans man) asked her to use my proper pronouns.
  9. – Concerns being dismissed
    – Rushed through appointments
    – Not receiving accommodation letter to work from home despite being in burnout
  10. I was having a cardiac cauterisation, i.e. without anaesthetic or painkillers, and the radiologist came to yell at me because it had been reported that I didn’t agree with the way he presented the imaging method.

Repairing the human cultural immune system

Do you want real change?

Becoming conscious of human cognitive limits and recognising that these limits are just as real, immutable, and relevant for our survival as the laws of physics is essential for neurodivergent people to navigate sensory and emotional overload, and for (re)creating safe environments for ourselves and our peers.

Given that human children learn to use spoken language to attach labels to mental representations very early on, and given that much of human communication is based on spoken and written language, it is tempting to perceive human language as our main thinking and reasoning tool. But the more we learn about the reasoning abilities of non-human animals, the more doubt is cast on the position of human language as the ultimate cognitive tool. Human mental models have been around for much longer than human language.

Mathematics, the arts, and music are all human scale tools for communicating the essence of complex patterns of mental states (knowledge, feelings, and awareness of agency and motivations) that don’t survive simplistic attempts of serialisation and de-serialisation via stories. If we value the creation of cultures of thinking, then the risks of deceptive storytelling need to be acknowledged, and exploration and critical validation of knowledge, feelings, agency, and motivations must be encouraged.

CW: mentions suicide.

Limits of shared understanding

When I read the following Tweet from Ted Nelson a few years ago, it occurred to me that he has articulated the fundamental axiom of autistic social experience.

A whole number of factors shape the human limits of shared understanding:

  • Differences in traumatic experiences
  • Differences in levels of baseline sensitivities
  • Differences in cultural indoctrination
  • Duration, frequency, and most recent exposure to powered up social environments
  • Duration, frequency, and most recent exposure to de-powered social environments
  • Differences in time horizons when making decisions and prioritising actions

In a given situation, beyond these factors, misunderstandings are also triggered by differences in coping mechanisms when feeling:

  • Unsafe
  • Overwhelmed
  • Insecure
  • Misunderstood
  • Disrespected / invalidated
  • Bullied / coerced / manipulated / abused
  • Betrayed
  • Abandoned

The effects of living in powered-up social environments

Within human societies Autistic people tend to be the amongst the first who point out toxic competitive behaviours. We live in a world where the cultural immune system of human society, i.e. Autistic and otherwise neurodivergent people are being systematically weakened, marginalised, and disabled.

Autistic children are frequently traumatised by experiences with culturally “well adjusted” parents, peers, and the education system. Depending on the extent to which Autistic people are prevented from developing their unique intrinsic motivations and are forced to comply with externally imposed social expectations, their trauma may lead them into extreme levels of social isolation.

So-called “civilisations” are constructed such that certain forms of bullying are deemed acceptable / legal / necessary and such that other forms of bullying are deemed as unacceptable and illegal. Upon closer examination the boundary, which is inevitably fuzzy, is an arbitrary one.

Our industrialised education system has a big gaping hole when it comes to teaching people how to coordinate complex activities without resorting to so-called leadership and management skills, which are effectively refined variants of the same bullying skills that other primates (baboons, chimpanzees, etc.) use to establish and maintain dominance hierarchies. Humans would not have become so successful on this planet just by focusing on these skills.

Growing levels of social inequality correlate with a rise in mental health issues throughout the population. The root cause may well relate to the formation of increasingly absurd group identities and associated signals of social status that make it acceptable to exclude the less fortunate.

From evolutionary biology we know that in-group competition has negative group survival value. There are always a few people who don’t play the social game and who don’t care about social status. There is a lot that society could learn from these people.

Humans are using a diverse range of external and visible coping mechanisms for dealing with perceived, anticipated, or experienced lack of safety. The combination of early childhood experiences and individual neurology determines which coping mechanisms come into play in specific situations:

  • Seeking clarification
  • Distrust
  • Anger
  • Selective mutism
  • Detachment
  • Meltdown
  • Shutdown

The first three coping mechanisms in this list are familiar to everyone, and one or more of the last four are familiar to any Autistic person.

Further internal, involuntary, and only partially visible coping mechanisms and responses for dealing with perceived, anticipated, or experienced lack of safety and related symptoms include:

  • Chronic anxiety
  • Insomnia
  • Depression
  • Various health problems, including eating disorders, GI problems, migraines, autoimmune diseases
  • Burnout
  • Suicidal ideation

Suicide statistics for Autistic people in our powered-up society are alarming. Notably, the high Autistic suicide risk is not limited to those who are most obviously disabled in our society.

Punched out

Assuming I did not botch the task, by the time this posts I will have been dead via suicide for several hours. Nope, that’s not a setup to a joke.

Why would someone who is healthy, employed, has every outside appearance of success, and so on, take their own life?

In my case the answer is simple enough: I was done, but my body wasn’t.

… In closing, I want to thank each and everyone one of you who interacted with me, in person and/or virtually, and especially those who I interacted with frequently and came to know.  I was fortunate to live a very rich life, and despite my challenges and frustrations, y’all were the reason for it.  Though I chose to exit rather than persist, I have been very privileged, and I thank you for being a part of my life.

Will H. Moore

Hypersensitive Autistic people are like a high performance racing car without a well functioning braking system. We have a tendency to be too hard on ourselves for far too long, persisting in unsafe environments, until either our bodies or our minds – or both – crash and burn.

In order to take all the bends in the road without emotional and physical burnout, we need trustworthy Autistic peers as co-pilots who act as braking assistants and protect us from serious harm. Frequent meltdowns and shutdowns, and the various health problems we develop are our emergency braking systems. Selective mutism and detachment are energy consuming techniques for keeping emotional pain within survivable limits.

Specific misunderstandings induced by a lack of safety

Environments dominated by mistrust and social power dynamics generate misunderstandings, uncertainties, and related fears, resulting in confusion and doubts:

  • Misunderstanding or attempt of deception / manipulation
  • Desire to explain and be understood or defensiveness and refusal to admit mistakes
  • Being overwhelmed / need for processing time / inability to speak or respond on the spot or lack of understanding or empathy or courage
  • Being honest and open or being insensitive and potentially having bad intentions and being manipulative
  • Extending trust / being naive or possibly having some hidden agenda
  • Fear or reality
  • Experiencing signs of long term commitment or too good to be true
  • Commitments to other people / groups or abandonment

We all have some experience with such uncertainties, and we have erred on both sides of the fence. Individuals act upon these potential misunderstandings, uncertainties, and related fears with their own unique combination of visible and invisible coping mechanisms, which are shaped by prior experiences, by current feelings, and by all the factors that can limit shared understanding, i.e. differences in specific sensitivities, culture, exposures to social power dynamics, and differences in the priorities attached to different time horizons.

Traumatised people are sensitised to triggers relating to earlier traumatic experiences, i.e. if any sequence of events occurs that seems to contain familiar elements that resulted in trauma, then the experienced reality of the situation is coloured by feelings associated with trauma, and these in turn easily trigger associated trauma coping mechanisms – essential cognitive tools and responses that we have developed and internalised to protect us in dangerous and unsafe situations.

However, since our embodied feelings, which are beyond our conscious control, shape our sense of truth and our experience of safety and trustworthiness, trauma coping mechanisms can also easily get in the way of deepening trust and shared understanding, and doubly so in the context of people who we think of as being kind and trustworthy.

When we are sensitised by trauma, when someone triggers us, trust is easily undermined by doubts, fears, feeling disrespected, and even feelings of abandonment. Our learned trauma coping mechanisms kick in, and these in turn (such as asking questions, anger, mutism, detachment) can trigger internalised trauma responses of the other person (which may be less familiar and relatable to the first person), resulting in a spiral that prevents learning from each other, and that eventually reduces the level of mutual trust.

Differences in learned trauma coping mechanisms can get in the way of developing a closer relationship between two people with similar traumatic experiences (such as abandonment). We need to take extensive time to understand the nuances of our individually unique coping mechanisms, and we need to stay within safe speed limits to help each other re-learn to feel safe and avoid severely hurting each other.

The toxicity of powered-up environments in terms of mistrust and misunderstandings can hardly be overstated, resulting in a highly unpredictable social environment that is capable of inflicting pain at any moment. The effects for individuals can be devastating:

  • Self-fulfilling prophecies of rejection
  • Rejection of offers of assistance
  • Paralysing insecurities or possessiveness
  • Fear of entering or inability to maintain committed relationships
  • Inability to trust anyone, loneliness, isolation
  • Recurring disappointments, depression, suicidal ideation
  • Paranoia, believing “the world is out to get me”

Individual trauma

A lack of safety experienced over extended periods is traumatising and paralysing:

  • Extreme dependence on less than five relationships, even when these relationships are not experienced as safe.
  • Escalation of misunderstandings to the point where the ability to trust others in a small group (family or company) is corroded.
  • Complete lack of any relationships that are experienced as entirely safe.

However, trauma also acts as a catalyst for reconnecting with the non-human environment:

  • Detachment from human relationships.
  • Focus on non-human relationships.

Collective trauma

When high levels of trauma are commonplace, the collective effect is a toxic combination of cultural inertia and in-group competition:

  • Reduced ability for healthy de-powered conflict and conflict resolution, i.e. the conflicts needed to reach shared understanding within a small group that become possible in safe Open Spaces via an advice process.
  • Reduced ability to focus on the needs of the collective, i.e. on the totality of all needs across all the relationships within a small group and with other small groups.
  • Reduced ability to cope with uncertainty, resulting in a combination of wishful thinking and complete hopelessness.

However, collective trauma also catalyses the potential for cultural change, which over many years builds up in terms of cognitive dissonance, before becoming tangible in a phase changing event:

  1. Heightened sensitivity to social injustices
  2. Growing numbers of marginalised people
  3. Social collapse

The current level of cultural inertia in neuronormative society can be understood as a profound crisis of imagination. On the surface, so far very little has changed since this interview with film-maker Adam Curtis in 2016. The following segment on ‘real change‘ offers a synopsis.

The Devil’s Sadistic Manual

The W.E.I.R.D. cultural bias encoded in the Diagnostic and Statistic Manual for Mental Disorders (DSM) encourages diagnosticians, therapists, and their clients to:

  • Buy the myth of independence and a yardstick for “normal” competitive behaviour within a market driven society
  • Focus on the individual and on short term treatments of symptoms
  • Offload relational responsibility to the party with a disorder
  • Adopt stereotypes that assist with othering those who are in distress
  • Believe the illusion that motivations can be reliably inferred from external behaviour

This cultural bias becomes very obvious to people at the receiving end of labels such as Autism Spectrum Disorder (ASD) and various personality disorders, which are much better understood as trauma coping mechanisms for dealing with the experienced reality of living in an unsafe social environment that is being presented as “normality” and assumed to a desirable or the only available target state.

It is not a coincidence that in our industrialised “civilisation” quotes such as “Life is not fair; get used to it” are commonplace, and that the Autism Industrial Complex is a rapidly growing multi billion dollar industry.

The DSM is so successful that even many of those who are oppressed by it refer to its terminology, using it to label and cope with those with whom maintaining relationships is impossible, painful, or difficult. The DSM offers the illusion of cookie cutter predictability of human behaviour in an inherently unpredictable and traumatising environment, supporting:

  • an entire industry of pathologising diagnosticians,
  • therapists with standardised treatments (hint: “best practices”) rather than nuanced and holistic approaches to well-being that are adapted to and integrated into local social environments (hint: design justice),
  • as well as a global pharmaceutical industry that maximises profits by creating life long customers.

Perhaps the biggest damage caused by the cultural bias in the DSM is the implicit assumption that deep down most humans are competitive rather than collaborative.

This assumption, when internalised as the truth about human nature, pours fuel on the fears and triggers of traumatised neurodivergent people, and it significantly raises the barrier that needs to be overcome to replace fear with the courage to reach out again, and to explore new connections in potentially safe social environments.

As long as we rely on the DSM for assessing who is “normal” and what behaviour is acceptable in our society, we are legitimising W.E.I.R.D. tools of oppression and creating a rod for our own backs.

The master’s tools will never dismantle the master’s house. To work within a system, to play by its rules, inevitably reinforces that system, whether or not that’s what you intend. Not only do the master’s tools never serve to dismantle the master’s house, but any time you try to use the master’s tools for anything, you somehow end up building another extension of that darned house.

– Audre Lorde, a Black lesbian from a working-class immigrant family (1979)

The effects of living in de-powered social environments

De-powered environments in which social power dynamics are not allowed to emerge and escalate reduce uncertainties and related fears, confusion, and doubts:

  • A misunderstanding is less likely to be confused with an attempt of deception / manipulation
  • A desire to explain and be understood is less likely to be confused with defensiveness and refusal to admit mistakes
  • Being overwhelmed / need for processing time / inability to speak or respond on the spot is less likely to be confused with lack of understanding or empathy or courage
  • Being honest and open is less likely to be confused with being insensitive and potentially having bad intentions and being manipulative
  • Extending trust / being naive is less likely to be confused with possibly having some hidden agenda
  • Fear is less likely to be confused with reality

De-powered environments create an egalitarian atmosphere of mutual trust where direct communication is appreciated, and where it is safe to make mistakes, ask for help, ask clarifying questions, and challenge the status quo, all without fear of being embarrassed, marginalised, or punished in some way. In a healthy culture Autistic children are assisted in co-creating their unique Autistic whānau, but this cultural knowledge has been lost and is suppressed. Genuinely safe environments for Autistic people are still rare.

Newcomers from the “civilised” world take substantial time (years) to fully grasp the possibilities of de-powered collaboration and the significance of frowning on all forms of social status within a de-powered environment. Unfortunately there is no shortcut to the learning curve. Autistic people support each other, love each other, and care for each other in ways that go far beyond the culturally impaired neuronormative imagination.

Collaboration is a ubiquitous evolutionary force

The networked intelligence and collaborative abilities of fungi are at the core of land based life. Consider the evolution of multi-celled life forms. Single-celled micro-organisms have not been replaced, but they have been complemented with a mind-boggling variety of more complex multi-celled life forms.

Evolutionary biologist David Sloan Wilson observes that small groups rather than individuals are the organisms of human societies. This should provide all of us with food for thought and it has massive implications for the gene-culture co-evolution that characterises our species.

Humans are not the first hyper-social species on this planet. Insects such as ants offer great examples of successful collaboration at immense scale over millions of years. The problems that Autistic people face in toxic cultures as well as the evolutionary potential of de-powered forms of collaboration can be summed up by a simple biological truth:

Selfishness beats altruism within groups. Altruistic groups beat selfish groups. Everything else is commentary.
– David Sloan Wilson and Edward O. Wilson

Charles Darwin and other early proponents of evolutionary theory appreciated the role of collaboration within species and between species, but many of these early insights including related empirical observations have been suppressed within the hyper-competitive narrative that has come to dominate industrialised civilisation.

Giving and taking advice

A simple advice process assists a group to shift away from unhealthy social power dynamics towards healthy de-powered relationships at human scale.

An advice process catalyses agency at human scale (think less than 150 people), as all group members start to nurture trusted relationships at eye level, as needed including relationships across the group boundary, resulting in a highly adaptive competency network that are not paralysed by fear.

An advice process turns the toxic notion of performance reviews described by W E Deming over 40 years ago on its head. It replaces the “push-back” model of traditional forms of “reactive feedback” with a “proactive pull-in” model that becomes possible once the members of an organisation or team are not punished for:

  • exploring new avenues and making mistakes
  • disagreeing with conventional wisdom as needed when asked for advice
  • seeking help, and not pretending to know everything
  • openly talking about risks

Before making a major decision that affects others in the group:

  1. A person has to seek advice from at least one trusted peer with potentially relevant or complementary knowledge or expertise.
  2. Giving advice is optional. It is okay to admit lack of expertise. This enables the requestor to proceed on the basis of the available evidence.
  3. Following advice is optional. The requestor may ignore advice if she/he believes that all things considered there is a better approach or solution. Not receiving advice in a timely manner is deemed equivalent to no relevant advice being available within the group. This allows everyone to balance available wisdom with first hand learning and risk taking.
  4. A few simple prosocial design principles provide guidance for dealing with people who regularly ignore relevant advice (or consistently refuse to seek or give advice) and therefore regularly cause downstream problems for others as a result. Such situations are obvious for all involved. A persistent breakdown of collaboration either results in a significant change in behaviour once the downstream problems are recognised, or in the non-cooperative person leaving the group.

De-powered family life

The following observations apply not only within companies, but they also constitute useful tips for de-powered family life with those who are closest to us.

Many companies, groups of all kinds, and especially Autistic whānau can benefit from shifting from reactive feedback to the proactive pull-in model enabled via an advice process. Autistic children and adults deeply appreciate autonomy. The following tips for giving and taking advice maximise autonomy, without ignoring the needs of others. For decisions that require input from everyone, the advice process can consist of deliberation in Open Space.

The recipe for the advice process needs to be applied in a very literal sense, i.e. the advice process is always initiated by the person who is facing a decision that affects others in significant ways. An advice process is in no way an invitation for giving unsolicited advice. Remembering this goes a long way towards nurturing trusted relationships and well functioning competency networks.

No one should ever be ignored or dismissed when seeking advice. In our society asking for help or acknowledging unknowns is often frowned upon. This is highly counter-productive. Committing to an advice process is an important tool for transforming fear into courage. As people gain experience with asking for and giving advice in Open Space and in their daily work, the level of psychological safety goes up, and over time the amount of courage needed to ask for advice decreases.

Everyone should be free to use their preferred communication tool for seeking advice. For some this may be an email, and for others it may be chat, the phone, or an online meeting.

No one should ever be pressured into giving advice. An advice process is not a potential blame deflecting tool. An advice process is intended to surface relevant tacit knowledge within a competency network, and to encourage people to apply their critical thinking skills before making decisions that may affect others in major ways.

Most people work very hard to work towards the best possible outcomes in an uncertain world. No one should be blamed for not following advice or for putting advice to use in creative ways that deviate from established practices.

Extend trust when people have sought advice and make a decision, they may know things or consider factors that you are not aware of. Don’t assume ill intent when things don’t quite go according to plan, or when it seems that mistakes have been made. No one has a crystal ball, and we often need to try things out to understand what works and what doesn’t.

As needed ask several people for advice, but don’t feel paralysed if no relevant experience seems to be available within your competency network. If you are asked for advice, and if you think there is someone with more relevant knowledge and understanding, share your competency network with the requestor. If you notice you are stepping into new terrain, as needed communicate the unknowns and then proceed with confidence. Experimentation is the only way for reducing the unknowns.

The benefits of mutual trust and shared understanding in de-powered environments can hardly be overstated:

  • Open to assistance from peers
  • Reduced fear of rejection
  • Reduced insecurity and possessiveness
  • Ability to enter and maintain committed relationships
  • Deep trust in peers and having the ability to extend trust to strangers
  • Inoculation against paranoia

Healing from collective trauma

Cultural adaptability:

  • Healthy de-powered conflict and conflict resolution, i.e. the conflicts needed to reach shared understanding within a small group that become possible via an advice process.
  • Ability to focus on the needs of the collective, i.e. on the totality of all needs across all the relationships within a small group and with other small groups.
  • Ability to cope with uncertainty via a combination of collective intelligence and collective agency.

Catalysing egalitarian prosocial norms:

  • Sensitivity to social injustices
  • Lower numbers of marginalised people
  • Social stability

Healing from individual trauma

All of the following coping mechanisms have their place in a relatively safe environment:

  • Seeking clarification (helps to deepen shared understanding and trust)
  • Distrust (helps when used selectively in potentially unsafe environments)
  • Anger (helps when used as a short signal rather than over longer periods)
  • Selective mutism (helps cope when encountering an unsafe environment)
  • Detachment (helps to prevent meltdown or shutdown in an unsafe environment)
  • Meltdown (helps to cope with overwhelming situations)
  • Shutdown (helps to cope with overwhelming situations)

All these coping mechanisms and overload responses are essential survival tools for Autistic people in powered-up environments. Don’t let anyone ever blame you for using one of these tools in unsafe environments. Without appropriate use of these tools many more of us would not be able to cope with life on this planet under current conditions.

However in predominantly unsafe environments, i.e. in society at large, these coping mechanisms and responses may be inadequate, and may need to be used far too often, resulting in chronic stress and related chronic health conditions.

Note: Guidelines for healthy emotional regulation for neuronormative people are not necessarily transferable to Autistic people. We are all experts in the living the experience of our own feelings. When we don’t have words for these feelings that is no deficit, and when people push us to name our feelings, the words we use may be far from adequate.

The Te Reo Māori word for ADHD is Aroreretini, which literally means ‘attention goes to many things’, and the Te Reo Māori word for Autistic is Takiwātanga, which literally means in ‘their own time and space’, and both are non-pathologising terms. However, the connection to the chunking of concepts in the DSM means that Takiwātanga only captures one half of the core Autistic experience.

Maybe Takiwātanga, i.e. the description of Autistic ways of being, should be elaborated into ‘in their own time and space, with many feelings at the same time’.

This would once and for all do away with the myth that Autistic people don’t have feelings or need to learn to “properly express” their emotions on neuronormative terms. After all, not all of us use mouthspeak, and some of us are unreliable speakers, but that does not mean we can’t communicate. In the same way, not using common neuronormative words to describe feelings does not mean that we don’t feel or lack the ability to express feelings – often words simply don’t cut it for us.

Well-being in a de-powered social environment entails:

  • Everyone routinely and intuitively making use of and actively contributing to an advice process before making decisions that impact others
  • The ability to feel safe within a household or company, even during occasional temporary conflicts
  • The ability to have safe relationships with and establish healthy boundaries with other households or companies
  • Relationships that are experienced as unsafe are exceptions and are addressed via agreed implementations of prosocial norms

Initiatives for co-creating safe environments for neurodivergent people

Neurodiversity friendly forms of collaboration hold the potential to transform pathologically competitive and toxic teams and cultures into highly collaborative teams and larger cultural units that work together more like an organism rather than like a group of fighters in an arena.

Co-creating Autistic / ND communities

What we are aiming at with the ND communities initiative, and what we already have in embryonic form in terms of experience with ND whānau, has so far been beyond reach.

But if we look carefully, we see every day how ND people are supporting each other, loving each other, and caring for each other in ways that go far beyond the culturally impaired neuronormative imagination.

Co-creating a Centre of Autistic Culture in Auckland, Aotearoa

The Autistic / ND whānau concept and Autistic / ND communities are important and essential building blocks of a new emerging reality. The social model of disability applies. We need to actively encourage environmental engineering, and we need to push back against toxic social expectations, and equip future generations of Autistic people with the tools and Autistic peer support that allow them to co-create healthy ecologies of care around them.

We centre the lived experience of Autistic people in the education of healthcare professionals about Autistic ways of being and Autistic culture, and we now need to co-create safe spaces that allow us to catalyse collaboration, mutual aid, safe relationships, and Autistic whānau beyond the abstract online realm:

Centres of Autistic culture need to be designed by and with local Autistic people, taking into account specific local needs, and once implemented, they need to be operated by local Autistic people.

If you are Autistic and live in Aotearoa, and especially if you live in the Auckland region, we invite you to join us in the co-creation process, and to submit your ideas and feedback in relation to the draft scope of a local Autistic centre of culture outlined below. Even if you don’t live in Aotearoa, you can add your name in support of this initiative to underscore the relevance of the proposed concept to Autistic communities worldwide.

NeurodiVentures

NeurodiVenture : an inclusive non-hierarchical organisation operated by neurodivergent people that provides a safe and nurturing environment for divergent thinking, creativity, exploration, and collaborative niche construction.

NeurodiVerse : human scale cultures created by neurodiversity within the human species

  • (a) the universe of NeurodiVentures
  • (b) the set of all neurodivergent people

Autistic Trauma Peer Support

the Autistic Collaboration community is in the process of co-creating and operationalising peer support services for Autistic Trauma based on the lived experiences of Autistic people all over the world.

It is impossible to express everything that is going on inside us, because linear language is a poor tool, and also because the capacity of our own understanding is limited. We can’t know everything. We can only discover some things about ourselves, about each other, and the world. It’s a dynamic process that never ends. And it only works in a world of mutual trust.

Connect

If you are aware of further peer support initiatives towards safer de-powered environments for Autistic and otherwise neurodivergent people that should be included in this overview, please use the form below to submit relevant details. You can also use the form to inquire about contributing to any of the initiatives listed above.

Panel discussion: the 5th International Day of Protest Against ABA

31 August 2022, 3:00 pm to 5 pm CST / 8:00 pm to 10: pm UTC, 8:00 am to 10 am NZST

This online panel discussion was hosted in collaboration with the Neurodiversity Activists at MSU, Mankato. It is part of an ongoing series of discussions within the Autistic community to progress towards comprehensive bans of all forms of Autistic conversion therapies (including ABA).

The discussion includes a pre-recorded segment (part 1), as well as a live panel discussion with a second group of panellists (part 2) that ran on Wednesday 31 August 2022.

Panellists:

Bruce Wenzel, United States

Marie Adrienne Robles Manalili, The Philippines

Karen Muriuki, Kenya

Tania Melnyczuk, South Africa

Alex Kronstein, Canada

Facilitator:

Jorn Bettin, Aotearoa

Organiser:

Bruce Wenzel, president, Neurodiversity Activists, MSU Mankato, United States

Topic: Make Shift Happen

The purpose of the Neurodiversity Activists at MSU, Mankato is, in the words of queer autistic scholar Nick Walker, “to shift the prevailing culture and discourse away from the pathology paradigm and toward the neurodiversity paradigm.”

Since the pathology paradigm implicitly mandates subjecting neurominorities to ABA interventions, “which,” to quote Walker, “have been used to torture and traumatize two generations of autistic children, and which remain popular with parents and professionals despite the warnings of autistic adult survivors,” the 5th International Day of Protest Against ABA is of special interest to our Outstanding Recognized Student Organization, especially considering the event coincides with the Campus and Community Involvement Fair on August 31st! A related recent interview with Bruce Wenzel from MSU on the topic of banning the teaching of ABA serves as the backdrop.

Because MSU is complicit in teaching ABA interventions, it is imperative that we organize an international panel to #MakeShiftHappen on campus and compel candidates for the Minnesota Legislature to #SayNoToABA.

The panellists may share their experience with ABA, recall how they’ve worked to #BanABA in their geography, provide potential pro-neurodiversity alternatives to ABA, and briefly explain to the President’s Commission on Diversity and Student Government why MSU must remove ABA abuse from its curriculums.

In case you have not already done so, please also sign the petition to Ban Autistic Conversion Therapy in Minnesota to ban all forms of conversion therapy in Minnesota.

Co-creating a Centre of Autistic Culture in Auckland, Aotearoa

Photo by Sulthan Auliya on Unsplash

The Autistic / ND whānau concept and Autistic / ND communities are important and essential building blocks of a new emerging reality. The social model of disability applies. We need to actively encourage environmental engineering, and we need to push back against toxic social expectations, and equip future generations of Autistic people with the tools and Autistic peer support that allow them to co-create healthy ecologies of care around them.

Just like we centre the lived experience of Autistic people in the education of healthcare professionals about Autistic ways of being and Autistic culture, centres of Autistic culture need to be designed by and with local Autistic people, taking into account specific local needs, and once implemented, they need to be operated by local Autistic people.

If you are Autistic and live in Aotearoa, and especially if you live in the Auckland region, we invite you to join us in the co-creation process, and to submit your ideas and feedback in relation to the draft scope of a local Autistic centre of culture outlined below. Even if you don’t live in Aotearoa, you can add your name in support of this initiative to underscore the relevance of the proposed concept to Autistic communities worldwide.

Please use the form below to submit ideas and feedback, to register your interest in being part of the core co-design team, and to add your name in support of this initiative and our intention to request funding for this initiative via grants for community-led development from our government.

Scope

Picture by Ulku Mazlum

What do you want funding for?

Co-design of a Centre of Autistic Culture in Auckland, by and with Autistic people for Autistic people. Our goals:

  1. To improve the lives and the overall well-being of Autistic people.
  2. To actively contribute to the evolution of openly Autistic culture and to the advancement of the neurodiversity paradigm.

What community need do you purpose to meet?

Local Autistic people in Auckland need to be given the agency to co-design a safe physical space for Autistic collaboration and for local development of Autistic culture and peer support. This will be a centre where Autistic people can be openly Autistic without stigma.

The first step is to elaborate the design for a local centre of Autistic culture, which will be realised, operated and used by Autistic people. Such a centre of Autistic culture can also host cultural events that invite the general public.

Further down the track we envisage this initial Centre of Autistic culture to serve as a reference design for the realisation of similar centres in our cities and towns across Aotearoa.

Initially we require funding for the design, finding a suitable location in Auckland, and for securing funding for the implementation of the design. Ultimately we will also require funding for ongoing operations.

How will you address the need?

By elaborating the requirements, architectural principles, and interior design of a dedicated safe space wholly designed by Autistic people, which allows Autistic people to express themselves without stigma and experience a sense of Autistic community.

What are the expected benefits/outcomes?

Autistic people will achieve greater satisfaction in life through active involvement in every step of creating a cultural space which suits their needs, a reduction in stigma, and higher purpose in life through creation of something that is meaningful and long-standing, and being able to express oneself and collaborate with members of the same minority group without being judged.

Ultimate purpose: Creating a safe space to drop in, rest, read, think, or interact and connect without stigma. A cultural centre which is built around the needs of Autistic people, by Autistic people for Autistic people. Furthermore, serving the general public by hosting cultural events. Thus serving the needs of Autistic people and of the wider community as well. Fostering Autistic agency and pride, better health outcomes via being engaged in the community and learning from each other.

How do you know this is needed?

At present there is no dedicated physical place where Autists can pop in to be with other Autists, away from the pressures to pretend to be neuronormative, and where collaboration can happen in the physical realm. This is very important to reduce stigma, and to improve the mental health of Autistic people.

How will you achieve it?

Phase 0

Forming a design team of about 7 local Autists living in Auckland.

Phase 1

The team will jointly elaborate the design principles in considering the following scope:

Users:

  1. Autistic adults (accessibility needs of intersectionally marginalised people are relevant, including easy accessibility from public transport, and also considering the safety of women and queer folks in moving between the space and public transport links)
  2. Companion/child accompanying an Autistic adult
  3. The general public (access is limited to scheduled cultural events)

Draft use cases:

  1. A café and eating space that is safe for Autistic people
  2. Some quiet desk work spaces with the possibility for small group work
  3. Quiet room
  4. Library
  5. Workshop for arts and engineering projects. A secondary use case of the workshop is to serve as a space for scheduled cultural events open to the general public

Draft interior design considerations to reduce sensory overload etc. :

  1. Acoustics
  2. Lighting (multiple options, none of them fluorescent)
  3. Colours
  4. As non-clinical as possible, and not like something that was designed by a city council

Additionally submitted ideas and suggestions:

  1. Provide secure small storage spaces, such as lockers, for people to store their independent project materials in – so they do not have to worry about transporting them each time (unless desired) and to aid in their project materials to be protected and stored safely without concern of interference of others and to prevent items getting misplaced.
  2. Consider in your designing and supply ordering that frequent attendees may get attached to certain items – such as one particular chair or a certain cup, and should someone else be using it or attached to it also, it might create conflicts.
  3. Will Braille books be made available in the library for those who may also have visual impairments?
  4. Lots of power points to plug in and recharge devices.
  5. How will temperature control work?
  6. If certain resources are limited, such as computers or project space, consider a large, clear, visual timetable that an individual can sign up to a spot for a certain amount of time. This could also be made available online and frequent users could sign up their slots in advance if it is important to them to have certain times or days.
  7. Recessed and otherwise indirect lighting: Enough dividing surfaces between those using screens and others not using screens (maybe some roll-down blinds and other movable or temporary screening surfaces, and some built in where people can have their own mini light environment which others don’t need to see), to allow everyone to not have a screen in their line of sight if they aren’t actively using it/sharing its use.
  8. Easily accessible information & signage.
  9. Textured interiors.
  10. Sensory rooms.
  11. Tactile breakout areas – perhaps a sandbox.
  12. I’m a holistic counsellor so sensory spaces and room for movement meditation would be fantastic.

Phase 2

The team will find a suitable location in Auckland, request quotes for implementation based on the design specification, and subsequently look for funding for the implementation phase.

Phase 3

Implementation: building or adapting a space to fit the design

Phase 4

Operations

How do you know the community supports your project?

This project has emerged out of many conversations between Autistic people in Auckland and beyond.

The form below is intended for gathering further input and feedback, and to formally document the level of community support, in preparation for conversations with candidate funders.

What community participation/collaboration will be involved?

Nothing about us without us. This project is a collaboration between Autistic people at every step of the project.

How does your request align with the purpose or priorities of community development grants?

This will provide meaningful work for Autistic people, by Autists for Autists, thereby strengthening connections and access to valuable life skills, reducing stigma and strengthening the mana (pride) and mauri (life force) of Autistic people. When the Centre will be operational, it will become a reference site for other locations and for the general community to learn from.

Where will your activities or project provide the most benefit?

Primary location: Auckland
Primary ethnic group/community: Autistic adults and their families, and intersectionally marginalised neurodivergent people

Autistic community feedback

I felt so excited reading this proposal. I am trained as a Registered Nurse who has been working in the community for 10+ years. I have two boys – one who is Autistic. My husband is neurodivergent and I suspect Autistic too. I developed a side project from 2020 to help me process the trauma around the lockdowns and sudden changes in life. My biggest vision was to create a wellbeing centre just like the way you have described in the text. (Aotearoa)

I am in Ōtautahi and would love to be involved when the time comes to expand to other centres. (Aotearoa)

I love this idea, and if it goes forward, hope to see it implemented in other cities around Aotearoa!

Please document EVERYTHING so that we can gain motivation, strength and proof of success from your fabulous venture. Hopefully, to replicate it around the region. Thank you for doing this. (Australia)

Must have a section where the history of autistic accomplishment is displayed, catalogued, shared and celebrated. We have always been here and been achieving under the guise of being eccentric. Time to tell the real history of autistic culture and attribute advances in humanity, arts and science to the right cohort. (Australia)

This is great! First of all I support this. Secondly, this is really weird but today I had the last straw and decided I have to organise something here, and we came up with “Autistic cooperative trust”.
I’ve made a Meetup group with that name, then I saw this article😅. Do you mind, or should we rethink? Good luck!!
(Australia)

Thank you for sharing. I was thinking of doing something similar in the NY area. One thing that motivated my thinking was that there is so much underutilized talent and super-intelligence in this community, yet most of us are marginalized, and many others struggling to get stable work. So I thought that maybe there was a way to build something where we can help autistic individuals find meaningful professions to survive. If you know anyone who might be interested in this concept close to where I live, please be in touch as I cannot do it alone. I would love to collaborate with what you are doing as well. Maybe we can build these centers where they are needed – everywhere! (US)

This is an exciting idea, particularly the Autistic co-creation as so often spaces are designed for Autistic people as part of a larger set of people with disabilities and have not included Autistic people as part of the design or operations team. The possibility of this project is limitless, with application across the globe. It is hard to imagine what such a space might feel like as I’ve only experienced neuronormative spaces. (US)

I love this! I’m curious whether there will be provisions for autistic people to immigrate to Auckland in future. (US)

Full support for this and would like to roll this out in the UK. (UK)

Sign

I support the initiative of the Autistic Collaboration Trust to co-design, implement, and operate a Centre of Autistic Culture in Auckland, Aotearoa.

Relevant historic context

The need for Centres of Autistic Culture is real and acute. Safe spaces for Autistic people should be recognised as important ingredients of any healthy community, similar to the role that Mechanics’ institutes used to play in Aotearoa and Australia.

From Wikipedia:

Mechanics’ institutes, also known as mechanics’ institutions, sometimes simply known as institutes, and also called schools of arts (especially in the Australian colonies), were educational establishments originally formed to provide adult education, particularly in technical subjects, to working men in Victorian-era Britain and its colonies. They were often funded by local industrialists on the grounds that they would ultimately benefit from having more knowledgeable and skilled employees. The mechanics’ institutes often included libraries for the adult working class, and were said to provide them with an alternative pastime to gambling and drinking in pubs.

Many of the original institutes included lending libraries, and the buildings of some continue to be used as libraries. Others have evolved into parts of universities, adult education facilities, theatres, cinemas, museums, recreational facilities, or community halls. Few are still referred to as mechanics’ institutes, but some retain the name and focus as centre of intellectual and cultural advancement. A 21st-century movement, originating in Victoria, Australia, has organised a series of conferences known as Mechanics’ Institutes Worldwide Conferences, at which information and ideas for the future of mechanics’ institutes are discussed.

In fact, some Mechanics’ institutes continue to be used by small teams of Autistic people, such as the Dandenong Mechanics’ Institute in Victoria, Australia. Sadly, in many cases the institutes have been absorbed into public libraries, with no considerations of the needs of those who greatly benefited from institutes that encouraged autodidactic and self-paced learning across a broad range of domains, and not limited to academic knowledge.

Nevertheless, public libraries are relatively safe public spaces that are regularly frequented by many Autistic adults. However, many improvements can be made, and dedicated Autistic spaces operated by Autistic people, with a much more comprehensive set of services and supports specifically for Autistic community members need to be (re)established. Public libraries are a good place for catalysing support for the co-creation of permanent local Centres of Autistic Culture.

The timeline below documents the dark history of increasing levels of discrimination against Autistic and otherwise neurodivergent people that can be traced back to the early stages of industrialisation, as well as the rise of the Autistic rights counter movement in the 1990s and the wider neurodiversity movement in the 2000s.

Now is the time for the governments all around the world to act and to look into the harmful effects of all forms of “conversion therapy”, and to start undoing some of the damage by actively supporting and appreciating the cultural value of Autistic and otherwise neurodivergent ways of being.

The time for change is now.

Education about Autistic culture, the ND paradigm, and the ND movement – for medical professionals, by Autistic people

Join Autistic people from all over the world, committed to the de-stigmatisation of Autistic ways of being and other forms of neurodivergence, in support of the development and delivery of education about Autistic culture, the neurodiversity paradigm, and the neurodiversity movement – for medical professionals, by Autistic and otherwise neurodivergent people. Fill in the form below to sign.

The Autistic Collaboration Trust centres the lived experience of Autistic people in the education of healthcare professionals about Autistic ways of being and Autistic culture. All our educational work in the healthcare sector adheres to the Design Justice Network Principles and is envisioned to catalyse the adaptation of healthcare services to the specific needs of Autistic people and corresponding improvements in health outcomes.

If you are Autistic or otherwise neurodivergent, you can add your name to underscore the urgency for Autistic led education based on lived experience. If you are a healthcare professional, you can add your name to demonstrate your commitment to removing the social stigma frequently encountered by Autistic or otherwise neurodivergent colleagues and patients.

Sign

The level of ignorance, stigma, and open hostility that Autistic patients and Autistic healthcare professionals regularly have to deal with is traumatising. There is a need for healthcare sector wide education in the neurodiversity paradigm, the neurodiversity movement, and Autistic culture. Education on these topics is essential for addressing entrenched problems of lack of cultural and psychological safety in the workplace. There are also corresponding problems of lack of safety for patients, their whānau / families and communities.

Education about the neurodiversity paradigm and intersectionality is not the same as education about neurodiversity. It answers an important question:

  • How does the mindset and language of the new paradigm differ from the language in the old paradigm?

Education about the neurodiversity movement builds on the neurodiversity paradigm. It answers three important questions:

  • Why is there an urgent need for a paradigm shift?
  • Who is involved in the shift?
  • Who must learn from the neurodiversity movement?

Education about Autistic culture builds on the results of the neurodiversity movement. It answers three important questions:

  • What is Autistic culture?
  • How does it relate to other cultures?
  • How does it relate to the neurodiversity movement?

I care deeply about the healthcare outcomes of patients and about the cultural and psychological safety of all patients and all healthcare professionals within clinical environments. I recognise an urgent need for education about the cultural contexts, sensory profiles, diverse needs, and the social stigma frequently encountered by Autistic and otherwise neurodivergent people.

In particular, healthcare professionals must be introduced to the non-pathologising and non-stigmatising language that has become the expected default within Autistic culture and within the broader neurodiversity civil movement that emerged out of the Autistic rights movement. The required education is very different from education framed in the culturally outdated language of the pathology paradigm, which still presents and rates the humanity of neurodivergent people in terms of deficits relative to the current neuronormative culture.

I support the work of the Autistic Collaboration Trust to facilitate education in the neurodiversity paradigm, the neurodiversity movement, and Autistic culture based on lived experience.

Scope of required education

The neurodiversity paradigm

Education about the neurodiversity paradigm and intersectionality is not the same as education about neurodiversity. It answers an important question:

How does the mindset and language of the new paradigm differ from the language in the old paradigm?

Topics:

  1. Motivation
  2. Terminology
  3. The social model of disability
  4. Dimensions of divergence from neuronormativity
  5. Intersectionality
  6. Autistic ways of being and the LGBTQIA+ kaleidoscope
  7. Autistic ways of being and ADHD ways of being
  8. The communal definition of Autistic ways of being / Takiwātanga
  9. Anthropological background
  10. Exposing the cultural bias of normality
  11. The role of the Diagnostic and Statistical Manual of Mental Disorders
  12. Transdisciplinary understanding of human learning and wellbeing
  13. The connection between neurodiversity and creativity
  14. Ableism and lived experience
  15. Frequently asked questions

The neurodiversity movement

Education about the neurodiversity movement builds on the neurodiversity paradigm. It answers three important questions:

  • Why is there an urgent need for a paradigm shift?
  • Who is involved in the shift?
  • Who must learn from the neurodiversity movement?

Topics:

  1. Historic background
  2. Cultural bias against creativity, critical thinking and transdisciplinary collaboration
  3. What is happening in the neurodiversity movement right now
  4. Behaviourism in parenting, education, workplaces, economics, and the sciences
  5. Disability in a sick society
  6. Cultural safety and the human rights perspective
  7. Psychological safety
  8. What therapies and medical practices do Autistic adults consider unsafe / safe / useful?
  9. Autistic communities
  10. Towards comprehensive bans of conversion therapies
  11. Overcoming cultural inertia in a time of exponential change
  12. Design BY and WITH neurodivergent people
  13. Advice process
  14. Introduction to Open Space as a transformational tool
  15. Guidance for making good use of Open Space
  16. Critical thinking tools for creative experimentation

Autistic culture and lived experience

Education about Autistic culture builds on the results of the neurodiversity movement. It answers three important questions:

  • What is Autistic culture?
  • How does it relate to other cultures?
  • How does it relate to the neurodiversity movement?

Topics:

  1. Discovering Autistic way of being
  2. Autistic language
  3. Learning without imitation
  4. Autistic collaboration
  5. Competency networks
  6. Minimising misunderstandings
  7. Exposing social injustice
  8. Raising healthy children
  9. Creating thriving communities
  10. Towards mutual understanding and a better world
  11. Difference drives humanity forward
  12. Autistic clinicians, nurses, social workers, lawyers, accountants, scientists of all stripes, mathematicians, artists, musicians, engineers, and entrepreneurs
  13. Deep innovation
  14. Evolutionary design

For paediatricians

  1. What do paediatricians need to know about Autistic culture?
  2. What do Autistic people want paediatricians to know?
  3. What books could a paediatrician or parent read if they wanted to learn more?
  4. Other useful resources for paediatricians and parents

Autistic trauma

Education about the many ways in which Autistic people are traumatised throughout their life by the social norms and “normal” living conditions in modern industrialised societies. It answers three important questions:

  • Why are Autistic people severely affected by traumatising conditions and events?
  • How to distinguish between Autistic traits and trauma coping mechanisms?
  • How to best support highly traumatised Autistic people?

Topics:

  1. Sensory overload
  2. Physical symptoms of dis-ease
  3. Mental symptoms of dis-ease
  4. Traumatising diagnostic experiences
  5. Industrialisation and W.E.I.R.D. social norms
  6. Trauma caused by coercive techniques
  7. Trauma caused by social power gradients
  8. Trauma caused by group identities
  9. Avoiding and healing from hypernormalisation
  10. Avoiding and healing from reductionism
  11. Avoiding and healing from behaviourism
  12. Avoiding and healing from bullying
  13. Avoiding and healing from othering

Signatories

Last update: 19 July 2022

Healthcare professionals

  1. Dr. A. Ann Emery, Allied health professional, Psychologist, Canada
  2. Dr. Alan Beach, PhD, LCSW, LMFT, Allied health professional, Clinical Social Work & Family Counseling/Psychotherapy, United States
  3. Aly Dearborn, LMFT, Allied health professional, Psychotherapist, United States, Autistic
  4. Amanda Curran, Allied health professional, Australia
  5. Amanda Hart, Nursing professional, S a c t nursing sister, United Kingdom, Autistic and otherwise neurodivergent
  6. Amber Lane, Allied health professional, United Kingdom, Autistic and otherwise neurodivergent
  7. Ana Karemy López Cortes, Licenciatura, Healthcare administrator, psicologa, México, Autistic and otherwise neurodivergent
  8. Andrea Afonso, Physician, Portugal
  9. Andrea Beres, Allied health professional, Psychologist, Australia
  10. Annette Collins, Allied health professional, Australia
  11. Ariel Lenning, Physician, Optometric physician, Optometry, United States, Autistic
  12. Dr. Ashley Dubin, PhD, Allied health professional, Psychology, United States, Otherwise neurodivergent
  13. Brannen Clark, Allied health professional, United States, Autistic
  14. Becki Woolf, Allied health professional, United States
  15. Brian Hess, Allied health professional, United States
  16. Brian Moran, Nursing professional, United States
  17. Carol Beatty, Allied health professional, Counsellor, Couples’ Therapist, United Kingdom
  18. Casey Wilson, Allied health professional, United States
  19. Cecilia Barbosa, Allied health professional, United States
  20. Chanlynn Liao, Allied health professional, Speech-language Therapist, United States
  21. Chelsea Mongan, Nursing professional, Nurse Practitioner, United States, Autistic and otherwise neurodivergent
  22. Doraine Raichart, Allied health professional, United States, acupuncturist and Eastern medicine practitioner
  23. Elizabeth Williams, Allied health professional, United States, Autistic and otherwise neurodivergent
  24. Emma Ward, Allied health professional, United Kingdom
  25. Fernando Rodríguez, Allied health professional, España
  26. Heather King, Allied health professional, Speech-Language Pathologist, Australia, Autistic
  27. Holly Sprake-Hill, Allied health professional, United Kingdom, Otherwise neurodivergent
  28. Ian Reid, Nursing professional, United Kingdom
  29. Ioannis Voskopoulos, Allied health professional, Greece, Otherwise neurodivergent
  30. Iuliana Sava, Allied health professional, Psychologist, United Kingdom, Autistic
  31. Jess Hodges, Allied health professional, Psychotherapist, Australia, Autistic and otherwise neurodivergent
  32. Jessica Kitchens, Allied health professional, Mental Health, AA Therapist and Advocate, United States, Autistic and otherwise neurodivergent
  33. Jessica Newland, Allied health professional, United States, Autistic and otherwise neurodivergent
  34. Jonathan VanLandingham, Nursing professional, Registered Nurse, United States, Autistic and otherwise neurodivergent
  35. John Finnegan, Allied health professional, United States
  36. Julie McCarthy, Allied health professional, Australia, Otherwise neurodivergent
  37. Kali Rees, Allied health professional, United Kingdom
  38. Karen Scorer, Allied health professional, United Kingdom
  39. Katrina Fiebig, Allied health professional, Patient/Family Advocate, Psychiatry, Nursing professional, United States
  40. Kristen Ipson, Allied health professional, Speech-Language Pathologist, United States, Otherwise neurodivergent
  41. Lauren Lopez, Nursing professional, LPN, RN, Public Health, United States, Autistic and otherwise neurodivergent
  42. Luke Shobbrook, Allied health professional, Counselling Psychologist, Psychology, Jersey
  43. Maija Mills, Allied health professional, Physiotherapy, Canada, Autistic
  44. Marie Manalili, Allied health professional, Speech/Language Pathologist, Philippines, Autistic and otherwise neurodivergent
  45. Marta Louise, Allied health professional, Canada, Autistic and otherwise neurodivergent
  46. Dr. Megan Anna Neff, Allied health professional, Psychology Resident, United States, Autistic and otherwise neurodivergent
  47. Meredith Thompson, Allied health professional, Licensed Independent Clinical Social Worker, Social work, United States, Otherwise neurodivergent
  48. Miah Pavlik, Nursing professional, United States, Autistic
  49. Miranda, Nursing professional, Canada, Autistic and otherwise neurodivergent
  50. Monica Boyd, Healthcare administrator, Education, Canada
  51. Nicola M, Allied health professional, United Kingdom, Otherwise neurodivergent
  52. Nicole Lui, Allied health professional, Certified Functional Nutritionist (FNLP, CFNC), Medical Cannabis Consultant (AAFP-EC), Clinical Herbalist (TCM & Western Herbology, working towards board certified), and Spiritual Teacher, Canada & Hong Kong, Autistic and otherwise neurodivergent
  53. Dr. Patricia Burkhart, Physician, Radiologist, United States, Autistic
  54. Paula Gómez, Allied health professional, Australia, Otherwise neurodivergent
  55. Raphael de Miranda Luz Trindade, Physician, Portugal, Autistic
  56. Sandy Rayman, Allied health professional, Therapist, United States
  57. Sara Schultz, OD, Physician, optometrist, United States
  58. Stephanie Warm, Allied health professional, psychotherapist (LCSW), United States
  59. Svanhildur Svanvarsdottir Kristjansson, Allied health professional, Autism consultant, Speech Language Pathologist – TEACCH advanced certified consultant, United States, Otherwise neurodivergent
  60. Tara O’Donnell-Killen, Allied health professional, Ireland, Autistic
  61. Dr. Terry Hannan, A/Professor, Physician, General Internal Medicine and eHealth, Australia
  62. Tonya Makar, Allied health professional, United States, Otherwise neurodivergent
  63. Tracey Nelson, Allied health professional, Australia
  64. Vanessa MacKay/ OT, Allied health professional, United States, Otherwise neurodivergent
  65. Dr. Zoe Raos, Gastroenterology, Physician, Aotearoa New Zealand

Patients

  1. Alden Blevins, United States, Autistic and otherwise neurodivergent
  2. Alix Latta, United States, Autistic
  3. Ama Love, United Kingdom, Autistic and otherwise neurodivergent
  4. Amanda Sutton, United Kingdom
  5. Bailey Wagner, Canada, Autistic and otherwise neurodivergent
  6. Brina Simon, United States, Autistic and otherwise neurodivergent
  7. Candace Jordan, United States, Otherwise neurodivergent
  8. Caroline Kimrey, United States, Autistic and otherwise neurodivergent
  9. Catherine Andrews, United States, Autistic and otherwise neurodivergent
  10. Dan McFarland, United States, Autistic and otherwise neurodivergent
  11. Daniel Aird, Senior Research Associate (Biotech / cancer field; but am very well versed in science), United States, Autistic and otherwise neurodivergent
  12. Heather Johnson, Writer, United States, Autistic and otherwise neurodivergent
  13. Heather Steeves, United States, Autistic and otherwise neurodivergent
  14. Herman Langkamp, Nederland, Autistic
  15. Jacki Edry, Author, educator, advocating for neurodiversity and inclusion, parent of neurodivergent children, Israel, Otherwise neurodivergent
  16. Jax Bayne, United States, Autistic
  17. JC John Sese Cuneta, Philippines, Autistic
  18. Jessica Nabb, Australia, Autistic
  19. Kae Peterman, United States, Autistic and otherwise neurodivergent
  20. Karen Sydow, Australia, Otherwise neurodivergent
  21. Khaenin Rutherford, United States, Otherwise neurodivergent
  22. Linda Guevara, Mexico, Otherwise neurodivergent
  23. Lisa W, United States, Autistic and otherwise neurodivergent
  24. Lucy Reid, United Kingdom, Autistic and otherwise neurodivergent
  25. Liz Pine, United States, Autistic
  26. Martin Bryan-Tell, United States, Autistic and otherwise neurodivergent
  27. Matthew R, United States, Autistic and otherwise neurodivergent
  28. Meg Bradshaw, Canada, Autistic and otherwise neurodivergent
  29. Natasha Trotman, United Kingdom
  30. Rachel Millar, Australia, Otherwise neurodivergent
  31. Rachel Morton, United States, Autistic
  32. Renata Moreno, Chile, Autistic and otherwise neurodivergent
  33. Rome Icasiano, United States, Autistic
  34. Ryan Boren, United States, Autistic and otherwise neurodivergent
  35. Stephen Dooley, United Kingdom, Autistic and otherwise neurodivergent
  36. Suzanne Galloway, Australia, Autistic and otherwise neurodivergent
  37. Sydney Warner, United States
  38. T. Purk, ASD Researcher and Educator, United States, Otherwise neurodivergent
  39. Traci Collins, United States, Autistic
  40. Victoria Busuttil, United Kingdom, Autistic and otherwise neurodivergent
  41. Wendy Garfield, United States, Otherwise neurodivergent

Autistic ways of being, trauma, and diagnosis

Living in our global industrialised society is traumatising, especially for hypersensitive Autistic people, and this has increasingly been the case since the earliest days of industrialisation, even before the term “autism” entered the vocabulary of the medical profession.

Adults seeking a diagnosis of autism are often looking for an explanation of their lived experience, which often includes highly traumatic experiences, in many cases starting in childhood. Parents seeking a diagnosis for their child are typically driven by the fear that their child won’t be able to “succeed” in the competitive world of so-called education, jobs, careers, and social status.

A global multi billion dollar autism industry has been built on the backs of Autistic people and is critically dependent on the ongoing traumatisation of Autistic people. This is glaringly obvious in terms of the perpetuation of traumatising behaviourism that is sold as a “treatment for autism” to the parents of Autistic children, but it is not always quite as obvious in relation to the “treatment” of Autistic adults.

Discrimination against Autistic people is comparable to the level of discrimination against LGBTQIA+ people 50 years ago. The pathologisation of Autistic ways of being has led to what some critical researchers refer to as the Autism Industrial Complex.

In this discriminatory cultural environment, many services from the autism industry must be considered unethical, and obtaining a diagnosis can be an invitation for potential abuse and exploitation, as illustrated in the account of adult diagnostic experience in Australia below. Even the most well meaning diagnostician will produce “offical” documentation that is coded in pathologising language.

Trigger warning: if you are currently keen on obtaining an official diagnosis of autism, the account of abuse and diagnostic trauma below may prompt you to rethink, and draw your attention to the Communal Definition of Autistic Ways of Being.

Regardless of diagnostic status, the account below should prompt all Autistic people

  1. to question the value of official diagnosis,
  2. to consider the value of Autistic peer support networks,
  3. and to focus on what can be achieved by co-creating healthy Autistic communities.

An anonymised diagnostic experience

Surviving professional abuse accompanying autism diagnosis

Letter to the psychologist who in diagnosing my Autism simultaneously assumed the entitled right to abuse me:

Survivors are quiet because they are haunted, because they still cannot entirely accept what happened. Khan, Ausma Zehanat (2017) The Unquiet Dead, UK, Oldcastle Books Ltd

“Tony Attwood, an acknowledged expert on the autistic spectrum, writes that there is a ‘quasi-philosophical quality’ to the autobiographies of adults with Asperger’s analysis’. What he is referring to is generally accepted to be an over-rationalistic, hyper-reflexive self-awareness, and a disengagement from emotion and embodied existence, which is very much in accord with my experience of looking after subjects on the autistic spectrum. Moreover, there is an abstract, quasi-philosophical mode of talking that is common in some kinds of schizophrenia, at first impressive, but ultimately recalcitrant to understanding; it is sometimes actually referred to as ‘pseudo-philosophical thought disorder’. Both autistic and schizophrenic individuals have an antipathy to what is embodied, uncertain and unknown (or unknowable), preferring what is abstract, certain and known, all of which is characteristic of the left hemisphere.” McGilchrist, Iain (Nov 2021) The Things that Matter: our brains, our delusions and the unmaking of the world, London UK, Perspectiva

I first read the above McGilchrist quote in December 2021, with awe. I recall thinking, what confident audacity for the author and Tony Attwood to expose their un/conscious bias, their subjective gaze, their neuronormativity so publicly in the year 2021 for all the world to witness. And then I realised in breathtaking shock, they suffered no risk. I was naïve. Theirs is the populist imagination of the fearful conspiracy theorists. It is we Autists who continue to be the ones at risk as they perpetuate their dehumanization of the neuro-other. (These comments will apply equally to schizophrenics I suspect, but I would need to ask a Schizophrenic human to truly know that.)

I still find it unbelievable that old white men still exercise such power and authority in the 21st century. They are both around my age as it happens. Yet I shouldn’t be surprised; pragmatically I realise their narrative has a long tradition of attracting unquestioning followers waiting in line for a share of their empires; power and prestige are very seductive. And then there is the opportunity to accrue wealth; it turns out the Autism Industry is a great money spinner. Too many reasons to dehumanise; none of any value to not.

However, in 2018 I did not know this form of confidently overt Ableism still thrived; I was undoubtedly ignorant. I did not know careers were still being built and fortunes being made on the backs of Autistic humans. I wasn’t looking for Ableism, but neither was I looking for Sexism, Misogyny, Homophobia and/or Ageism. (In hindsight I can comfortably assume Racism and Transphobia would have also presented if I had been a POC and/or Transgender.) I was so naively confident I was safe that I walked into your offices alone; I believed I was merely undertaking a series of objective tests. It never occurred to me in my wildest dreams that I would not be safe from/with you.

I had not long turned 67 when I first walked in your door. At that time, I had little insight into what it meant living an undiagnosed Autistic life as a woman; but you did. Autism continues to be your advertised area of expertise.

What I do continue to know is that statistically few women can reach my age without experiencing some forms of abuse, particularly Violence Against Women (VAW). What I do continue to know is that Women with Disabilities face a far greater risk, experience VAW at a far higher rate. Given the political and media attention to VAW and abuse of people with disabilities this century, it was/is surely not possible for you to be ignorant of its ubiquitous nature unless you deliberately chose to wear blinkers.

Given what I assume you knew (and know) about the incidence of domestic/family/sexual abuse among Autistic Women and Girls, diagnosed and undiagnosed, it can hardly have been an earth-shattering surprise that I revealed in response to your questions in that first session, a history of domestic/family abuse.

Given what I assume you knew (and know) about the incidence of domestic/family/sexual abuse among Autistic Women and Girls, diagnosed and undiagnosed, then you surely must have been trained in how to respond appropriately to such revelations. Training: Trauma Counselling; Managing exposures of Domestic/Family Abuse in the counselling room; Privacy and Confidentiality; Client Safety.

Because in 2018 I was blind to your Ableism, I experienced your abuse primarily as Sexism, Misogyny, Ageism and Homophobia. Now all those may be true also. Most likely were/are. But what I hadn’t considered from your worldview was/is that they may all be subcategories of your Ableism. Or that they were/are inextricably enmeshed with your Ableism.

I am astonished that in 2022, our society and economy continue to be controlled by a culture of patronising paternalism in a hierarchy determined by intersections of race, class, gender, wealth, the list goes on. This is utopian naivete on my part because equality is popularly delivered as the democratic narrative when in reality the survival of extant democracy requires equality to be non-existent, only illusional. I wonder if that is why paternalism seems mistaken for emotional maturity by a passive majority, because we are encouraged to see the world through rose-coloured lens; it may explain the current popularity of daddy politicians around the planet. Whereas it is the reverse. Emotional maturity rather requires self-awareness, compassion and empathy. Paradoxically, while we live in a culture which encourages dependency on a self-appointed minority perceived as “experts”, our “experts” will never gain emotional maturity.

I am labouring the point of emotional maturity as in 2018, I was struck by its absence in your language and presence. Even today when I recall your voice, I hear that of an earnest little boy. You were so young, younger than my own sons. But even then, I wasn’t alarmed as I trusted your professional training should have compensated for your youth; it could even have been an advantage. It is a somewhat humorous fact of life that as you age you become more aware of the youth of working people around you and you need to learn to accustom yourself to that reality. Thus, I entered your office with increasing hope that a young man could be more aware and not mansplain a woman as an older man might.

Consequently, I was caught totally unawares when your primary narrative to address me after the first session was Shaming and Blaming Coercive Control. I would have corrected my children for speaking to another, including me, in that manner. I would have called it out for what it was: Disrespectful and Abusive. It is the language only one of my children ever tried as an adult, and that was when he wanted to manipulate and bully from me something to which he wasn’t entitled. I just had too many frameworks from which to try and comprehend your behaviour: emotional immaturity, sexism, misogyny, ageism, homophobia, classism, poverty, single mother stereotypes, or some combination of some, or a combination of all.

I am now 71. One of the experiences of ageing is the illusion that time is passing at an escalating speed. In some ways, that is an existential truth as the presence of death hovers ever closer in mathematical probability. Thus, as I age, there is an increasing sense of urgency to gain increased insight into the dynamics of your abuse in 2018. And I have been wondering how that might be possible.

I wonder what happens when my experience of your abuse metamorphoses into another where as many as possible of the toxic stereotypes you embraced, except maybe your Ableism, are written out. Is it possible to create a hypothetical scenario to explore if it takes the client to the same place you took me: Denied Humanity? The most commonly accepted example that most closely resembles the experience of the domestic/ family violence victim-survivor is that of the War Veteran with PTSD.

So here goes. I address this to you, my professional abuser, where the word “professional” is a pun, carries the double entendre of your self-perception as a professional as well as being an expert abuser. It is in this extraordinary, detached retelling that I am realising how severely you abused me.

Imagine:

Imagine a “white” middle-aged heterosexual man,
professionally attired, open-necked shirt, chinos and loafers,
straight backed, slender, physically fit deportment,
well spoken, well educated,
gentle quiet demeanour,
firm in his convictions and confidence,
self refers to your office for Autism assessment.

He attends alone
a little nervous understandably
but feeling confident safe and trusting
believing there is no reason for concern
seeking answers with open curiosity,
after meeting serendipitously
and a brief ensuing conversation with an Autistic man.

In the first of the four sessions, the introductory session, you learn:
His parents are deceased, he has no siblings (only child).
He and his ex-wife separated and divorced many years ago.
They had no children.
He has been living alone since his marriage ended.

He also reveals to you
he is a retired high-ranking army officer (let’s say major or captain) and
completed his university education as a civil engineer
while in the Australian Defence Services.

In response to your questions about his army career
you learn he was deployed to two terms of service in a war zone
as an active soldier and officer

You ask: Where? What country? What war?

He replies: It doesn’t matter what country or what war. Witnessing the atrocity of war is witnessing the atrocity of war.

You ask: What was your experience of war?

He replies: I saw enough to return with PTSD. War Veterans are highly probable to return with PTSD. I am no different. You see things you can never unsee. Things that inhabit your worst nightmares.

You ask: When did this happen? What years?

He replies: When? 1990s? 2010s? Why does that matter. It is irrelevant.

You ask: Have you recovered from your PTSD?

He looks at you bewildered; his look says “You ARE a qualified psychologist, aren’t you? Did you really ask that idiotic question?”

Did you catch that look?

He smiles gently and explains: There is no such thing as full recovery from PTSD. The scars are permanent. Healing is modifying your life as you painfully learn to care for your emotional scars. You recreate your life.

You don’t acknowledge that answer.

Reluctantly into your unresponsiveness, evoking his own embarrassment and shame, he adds: I was also a POW for some time, imprisoned in isolation in deprived conditions.

You don’t acknowledge that additional information or his overtly and fearfully presented feelings.

Into the silence and your downturned head, he offers: I have become a practitioner of Zen Buddhist meditation which brings a lot of peace to my life. And Defence have provided me with a trained Companion Dog. A Golden Retriever.

You don’t acknowledge that feedback.

He smiles watching you ignore him: Her name is Irene. The Greek Goddess of Peace. She brings serenity and joy, laughter and playfulness to my life.

You don’t acknowledge that information.

Rather you say as if he hasn’t spoken: Diagnosis requires family members complete questionnaires regarding their observations of your behaviour.

He nods slowly trying to absorb, comprehend why what he thought was objective scientific tests suddenly became subjective observation. He knows how trauma fractures families. As do all War Veterans. And there is only one potential family member to contact. He waits.

You implacably demand with quiet authority: I need a family questionnaire completed by your wife.

He replies: I have already told you I am separated from my wife and as is for many returning War Vets with PTSD, our marriage ended badly. I do not want to do that. That will not be fair on her, or on me, particularly when we have had no contact for many years now. It will also be understandably impossible to obtain lack of bias from her.

You demand quietly, rigidly, without emotion: I need a family questionnaire completed by your wife.

He replies: As you believe this is necessary, I will try to find her, explain to her you need this, hope she will understand, but I ask you to acknowledge our shared history, to protect and be respectful of both of us during this process.

You do not acknowledge this response but move on.

You demand unemotionally: You need to contact your POW jailers to complete questionnaires. Can you organise that?

Now he looks very confused, asking: Why do I need to do that?

You reply quietly aloofly: Their responses are necessary for the diagnostic assessment.

He looks at you in shock, but he thinks to himself: this is your area of expertise, you must know what you are doing. Discovering if he is Autistic is very important to him as he continues trying to make sense of his life.

But still he replies: I put myself at enormous risk if I do this and the Army may well object.

You demand quietly implacably: I need their completed questionnaires.

The War Veteran replies with great fear: I will see what I can do. But I am trusting you to keep me safe. I am trusting you not to breach my privacy and confidentiality. If the Army agrees, I will arrange for them to forward their responses directly to you so I do not need to have direct contact with them; I will organise contact via a third party, via Army personnel.

Did you catch his fear? Do you see how crazy this story is becoming?

You choose not to respond to or acknowledge his feedback.

You choose not to acknowledge his fear.

You choose not to engage with him in adult/adult language, but rather infantilize him.

You choose to disrespect him and his ex-wife while simultaneously privileging her narrative.

At a later session, you will tell him: You have Alexithymia and will not explain what that means.
You will later tell him: You have no connection to your feelings, or You have no feelings, despite his exposure of his feelings in your office, his years of personal counselling, tertiary education, officer training and career.

You will tell him: You do not have empathy

And when he queries, you will tell him: You do not have real empathy.

You will tell him: You do not know who you are.

But you do not tell him whom he is.

You will order him to attend his GP ASAP, to go back on antidepressants and antianxiety medication urgently. You don’t acknowledge him informing you in a previous session that his GP has said he doesn’t need them, that he hasn’t taken them for years. His GP will be furious. With your irresponsibility.

You will order him to defer all decisions regarding his life to a young man, a defence services cadet, about 30 years younger, he has been mentoring. A young neighbour, one of the few current friends/acquaintances he has told you about in his responses to your questions about his social life.

You will choose to implacably ignore but rather, coldly observe him, the session he devolves in a trauma response of your own creation because you denied his fear and risk. You will also ignore the risk to him inherent in his presenting trauma response. You will further choose not to do any follow-up care after his trauma response to your abuse.

You will write him an unsolicited Executive Function Report in infantilizing language telling him he needs a carer as he is incapable of self-care and making his own decisions. You will do this even though he has told you that he has been living capably and independently alone since his marriage ended many years earlier. And he is a mature age adult who has a successful career behind him.

Three years later, your colleague will advise him that you wrote that document using the word-processing search-and-replace function to insert his name in place of that of a young child. In a proforma document intended for young children.

It is a letter so infantilizing and minimizing that he would never even address a child in that manner.

Three years later, your colleague will advise him that the document was “unhelpful” but that you didn’t mean to be “unhelpful”.

You will email him that unsolicited infantilizing document on a Saturday morning three weeks and five days after the fourth and final session.

In your email to him, you will not acknowledge that you are also in receipt of the email his POW jailers sent him about two hours before you sent your email. The email that his abusers also confidently sent you. He knows you have received it because your correct email address is in the cc field.

You will not feel it necessary to check in with him to ensure that he is ok after receiving both emails so close together on a Saturday morning.

You will repeatedly deny over a period of three years, despite the evidence to the contrary, ever having contact with his POW jailers.

You will tell him in writing He has lied to you about his cohabitation status. That He doesn’t live alone as he claims but is cohabiting with another person. (document forwarded late 2021, over three years post diagnosis.)

Your false accusations about his cohabitation status are so crazy that he can only wonder why make such a false accusation. Was there something you meant to say that you didn’t say?

You will tell him in writing he is “offensive” (stet) (same document forwarded late 2021)

You will shame him and trigger his internal shame. Shame is easily triggered in PTSD victim-survivors.

What you choose not to tell him:

  • You will not consider it necessary to keep him safe.
  • You will expose him to his abusers.
  • You will gift them a further opportunity to abuse him. They can hardly believe their good luck. And they will exploit their good fortune.
  • You will be manipulated by his abusers because you want to be manipulated by his abusers.
  • You will preference his jailers’ narrative over his narrative.
  • You will treat his narrative of his abuse experiences as over-emotive reactions having no validity or credibility because all PTSD victim-survivors and Autists have over-active imaginations. Or naturally deceive.
  • The narrative of his torturers and jailers will be his irrevocable truth and reality.
  • You will consider it reasonable to breach the Professional Standards of your industry; you will consider it reasonable to breach his Privacy and Confidentiality because, as he is not fully human, he is not entitled to their protection.
  • You will not tell him that the wealth-creating Autism Industry has still not surrendered its Eugenic roots, rather celebrates them.
  • You will not tell him that the Autism Industry is ableist, founded on the Medical Model of Disability. (In preference to the Social Model)
  • You will not tell him that the Autism Industry facilitates the systemic abuse of Autistic children through such practices as ABA because the Autism Industry believes Autists have no feelings.

What he will do:

  • For over three years, he will try to gain insight and healing using the tools of negotiation and mediation while simultaneously requesting staff training, contacting you, then your colleagues. He will not be successful in that endeavour.
  • He will discover that he cannot gain support for professional abuse from another psychologist or mental health worker as they close ranks with the mantra “you didn’t mean it”. That mantra is ubiquitous; it is nigh on impossible for anyone to gain professional support for professional abuse.
  • Because there is no external support available:
    • he will traumatise and retraumatise himself to process his trauma alone as his only available healing path and
    • he will read multiple texts on Trauma Recovery to enable that path and
    • he will read literature and texts about Autism written by Autistic people to educate himself about Autism and
    • he will discover that ableism is rife within the Autism Industry
  • Through his reading, he will discover that it was totally unnecessary for you to abuse and traumatise him; that professionals assess and diagnose Autism every day taking into account trauma histories of their clients; that they do not contact their abusers.
  • He will request support from the relevant State Health Ombudsman who will reply stating that
    • He is exactly 12 months too late to lodge a complaint; the cut-off date is 2 years
    • His complaint is not deemed sufficiently serious to consider investigating beyond the 2-year cut-off date and
    • They do not consider your other clients are at risk of similarly repeating abuse which would call for risk assessment and training
  • Over a period of 3 ½ years, he will attempt multiple times to gain access to all the documents in his file.
    • He will not be successful.
    • Different documents will appear at different times but only if he can name them.
    • One of the documents will make false allegations to which he has no recourse.
  • Over a period of six months in 2021, he will exchange frequent emails with two of your immediate colleagues. They will variously tell him:
    • They are not responsible for any aspect of your professional practice even though one of them was the owner of the practice at the time of the abuse
    • You were “unhelpful” but didn’t mean to be “unhelpful” (stet)
    • One will refer him back to you for resolution although
      • he has informed both colleagues he has tried this path many times before unsuccessfully and
      • your colleagues know it is not best practice or safe to refer a client back to a professional who has abused them
    • They will employ various overt tactics to silence him.

In Summary:

You will deny his truth and reality.

You will choose to abuse and traumatise him for an unstated reason.

Because you and your colleagues do not believe he is truly human and you and your colleagues believe it is also necessary for him to know he is only pseudo-human.

He is Autistic, recalcitrant to understanding, suffering from pseudo-philosophical thought disorder.

My question is: Will you abuse a War Veteran and POW victim-survivor the same way you abused a Family Violence victim-survivor? I cannot answer that question for you. I do not know your answer; only you do. But the indications are that you will as you and your colleagues believe Autistic people have no real humanity.

You know you are safe, that he has no path to redress.

You have got away with it. Successfully and easily, with minimum fuss.

What say you?

My story

i try to gain self-deprecating comic relief from your abuse
i tell others how glad I still am to receive the autism diagnosis
that was worth every hard found dollar i paid for it

but I continue to be left speechless by
your unsolicited entirely unexpected abuse
that accompanied your assessment

i know you didn’t charge me for it
you gifted me your abuse and trauma free
but … i could have done without it

four years later
i am still bewildered by its
inanity meaninglessness senselessness

four years later
i still puzzle what you got out of your abusive behaviour
authority power control ego some need to punish but punish what

you stampeded over my life
with all the privilege of a wealthy white boy
let loose in a vast lolly shop

you behaved like a spoilt indulged irresponsible child
but you were not a child
you were an adult

you executed authority
with unquestioning arrogance indifference
utterly denying the existence of family violence

you denied and exploited my history of intergenerational family violence
to feed some want of yours maybe ego
mercilessly

you shamed me
shamelessly
with no regard for my wellbeing

you disregarded my safety
with the ease and disregard that
a quake trembles and abysses the earth’s crust

you unstitched in a brief moment in time
half a century of my hard work recovering from domestic abuse
violently ripping the seams apart

you broke my trust
breached my privacy and confidentiality
with the same indifferent insignificance as snapping a slender twig underfoot

you breached with equanimity
professional ethics, member code of ethics, antidiscrimination legislation and UN human rights
while iterating to me many times you were an ethical man

you blindfolded me
set my back against a bloodstained brick wall in front of a firing squad which
you implacably orchestrated and conducted

you were
an unexpected subversive volcanic eruption
a projectile of projected toxic stereotypes

you told me I had no empathy
or no real empathy
i am still waiting to meet your empathy or your compassion

you executed
with onerous much-practiced precision
coercive control and minimization

you cast away my humanity
you erased my identity my existence
with self-righteous authority

you broke and shattered my body
scattering it atom by atom
to every corner of the universe

you accelerated my soul my essence
the length of the Large Hadron Collider and
unceremoniously dumped every particle into the endless depths of a black hole

you assigned me relentlessly
to a hell
of your own creation

you cast a swathe of chaos
through my life from which four years later
i am still trying to recover

i still struggle
to negate my internalized anger and judgmentalism
for my stupidity trusting you

i remind myself I was the client
i remind myself you were the psychologist
it was your responsibility to protect me

but don’t you worry
your prestigious colleagues believe you did the right thing denying my humanity
I checked

but four years ago
i didn’t understand why you would put choose to put my safety at risk
when I warned you of my peril

but four years ago
i didn’t know that you believe I am so valueless
you also believed it was totally reasonable to put my personal safety at risk

but four years ago
i didn’t know you chose to abuse and traumatise me
as you and your colleagues believe i am not capable of feelings

but four years ago
i didn’t know that you and your colleagues believe autistic humans
are not entitled to the protection of the professional standards of your industry

but four years ago
i didn’t know that you and your colleagues believe autistic humans
are not entitled to the protection of government antidiscrimination legislation

but four years ago
I didn’t know that you and your colleagues believe autistic humans
are not entitled to the rights of conventions set down by the united nations

but four years ago
I didn’t know you and your colleagues believe
autistic humans have no humanity no heart

but four years ago
i didn’t know you and your colleagues believe autistic humans are
pseudo humans and quasi philosophers

But four years ago
i didn’t understand that you and your colleagues believe autistic humans
are “recalcitrant to understanding” with ‘pseudo-philosophical thought disorder’

but four years ago
i believed the autism industry had moved beyond its history of eugenics.
i was wrong

your ableism your sexism misogyny ageism and homophobia
have successfully unravelled me like a carelessly knitted cardigan.
if that was your intent

congratulations, human, congratulations
you and your colleagues, succeeded where my every family member before you failed
they will all be proud of you

I am no where
I am no when
I am no one

References

Agarwal, Pragya (2020) Sway: unravelling unconscious bias, London, Bloomsbury Sigma

Ford, Ian (2010), A Field Guide to Earthlings: an Autistic/Asperger view of neurotypical behaviour, Albuquerque, Ian Ford Software Corporation

Gadsby, Hannah (2022), Ten Steps to Nanette: a situation memoir, New York, Ballantine Books
Hill, Jess (2019), See What You Made Me Do: power control and domestic violence, Australia, Black Inc (winner of the 2020 Stella prize)

Jane, Emma A (2022), Diagnosis Normal: living with abuse, undiagnosed autism, and covid-grade crazy, Ebury Press (Penguin Random House Group)

Milton, Damian (2017), A Mismatch of Salience: explorations of the nature of autism from theory to practice, UK, Pavilion Publishing

Milton, Damian (lead editor) (2020), The Neurodiversity Reader: exploring concepts, lived experience and implications for practice, UK, Pavilion Publishing

Silberman, Steve (2015), Neurotribes: the legacy of Autism and how to think smarter about people who think differently, Allen and Unwin

Sosa, Lorena (2017), Intersectionality in the Human Rights Legal Framework on Violence Against Women: at the centre or the margins? UK, Cambridge University Press

Professional Standards in Australia

Antidiscrimination legislation in Australia

United Nations

Violence Against Autistic Women and Girls and People with Disabilities

Open letter to the Lancet Commission on the future of care and clinical research in autism

14th February 2022

We wish to address the Lancet Commission on the future of care and clinical research in autism on behalf of the Global Autistic Task Force on Autism Research, a committee comprising autistic advocates, researchers and representatives of organisations by and for autistic people. 

As the Commission emphasised the importance of collaborative participation, we look forward to being included as collaborators. We appear to have remained largely invisible, generalised briefly as ‘the neurodiversity movement’.

It is encouraging that the need for system change and the value of neurodiversity were recognised by the Commission. However, some omissions contradict this message. Studies mapping autistic people’s priorities regarding research were not mentioned. Participatory research was mentioned but not defined, nor was literature on its principles cited.

We find the proposal to adopt the term ‘profound autism’ highly problematic, as well as the overall emphasis on behavioural interventions, excluding more recent, promising approaches. We disagree with the recommendation to focus clinical research on randomised controlled trials for short-term interventions, including medication and behavioural trials. 

To improve autistic lives, we need concepts developed by autistic scholars applied to clinical research. We need research on causes of mortality, access to health care, and improving mental health support. We need research on screening and diagnosis for all countries, and the health consequences of system factors: discrimination, mistreatment, poverty and lack of access to appropriate services. We need closer involvement of autistic people to ensure that clinical trials are truly ethical, and to curb the development of pseudo-treatments.

We call for shared, accessible platforms to continue the discourse and start building collaboration.

Signatories

(country codes in parentheses)

European Council of Autistic People (EUR)Heta Pukki (President)
Martijn Dekker (Board member)
Autistic Self Advocacy Network (INTL)
Collectivo Autista Mi Cerebro Atípico (INTL)Bárbara Herrán (CEO)
Autistic Doctors International (INTL) Mary Doherty (ADI Founder)
Sebastian Shaw (ADI Research Lead)
Sue McCowan (ADI Psychiatry Lead)
Participatory Autism Research Collective (UK)Damian Milton (Chair) 
Autismus-Forschungs-Kooperation (DE)Silke Lipinski (for the working group)
Autistic Collaboration Trust (INTL)Jorn Bettin (Chairperson)
Quinn Dexter (Advisory Board Member)
Lees- en Adviesgroep Volwassenen met Autisme (BE)Jo Bervoets
Autism Rights Group Highland (UK)Kabie Brook (Chairperson)
Joshua Hennessy (Assistant Chairperson)
Asociación Autistas de Colombia (CO)Monica Vidal Gutierrez
The Autistic Realm Australia Inc. (AU)Kylieanne Derwent (Co-Founder & Vice Chair)
estas, Adult Autistic Self-advocacy Meeting (KR)Yoon, wn-ho, Jang Jiyong (Co-moderators),
Onemoo Lee
Asociația suntAutist (RO)Ovidiu Platon (Chair)
Suomen Autismikirjon Yhdistys (FI)Minna Brockmann (Chairperson)
Annikka Suoninen (Project Coordinator)
PAS Nederland (NL)Tammo Michel (chairperson / secretary)
Otoemojite (neurodiversity self-help group)(JP)Satsuki Ayaya
CLE Autistes (FR)Garance Jacquot (Secretary) for the Board
Autisme- og Aspergerforeningen for Voksne (DK)Nina Catalina Michaelsen (Chairperson) 
Silke Rudolph (Board Member/Treasurer) 
Inicijativa za autizam i ostale neurodivergentnosti,
samozastupanje i kulturu različitosti ASK
(autistic initiative)(HR)
Kosjenka Petek, Sunčica Lovrečić Čekić
Aspies e.V. (DE)Hajo Seng, Rainer Döhle (Chairs)
Autistics Unmasked (US)Heini Natri
Adventor o. s. (CZ)Michal Roškaňuk (Chairman)
A-komunita (CZ)Vojta Bartošík (Chairman)
Asociación Autistas de Mexico (MX)Yadira Garcia Rojas (President)
Giovanna Villarreal Estrada ( Secretary)

References

organisationlink
EUCAPhttps://eucap.eu/2022/02/14/open-letter-to-lancet-commission
ASAN
Mi Cerebro Atípicohttps://www.facebook.com/527565417690268/posts/1375175466262588/(Spanish)

https://twitter.com/Cerebro_Atipico/status/1493196115096842241 (Spanish)
PARC
AFK
Autistic Doctors International
Autistic Collaboration Trusthttps://autcollab.org/2022/02/14/open-letter-to-the-lancet-commission/
LAVAhttps://lavautisme.wordpress.com/2022/02/13/open-brief-14-2-2022/
ARGH
Asociacion Autistas de Colombiahttps://www.facebook.com/100442532355847/posts/152930233773743/(Spanish)https://www.facebook.com/100442532355847/posts/152930483773718/(English)
TARAwww.tara.org.au  
estas
suntAutisthttps://www.suntautist.ro/viitorul-ingrijirii-si-cercetarii-clinice-in-autism-scrisoare-deschisa-catre-comisia-lancet/
Suomen Autismikirjon Yhdistyshttps://asy.fi/avoin-kirje-lancet-komissiolle
PAS Nederlandhttps://www.pasnederland.nl/home/open-brief-aan-de-lancet.html 
Otoemojitehttps://otoemojite.com/20220214openletter/ 
CLE Autisteshttps://asso.cle-autistes.fr/lettre-ouverte-a-the-lancet-autisme-profond/
AAFVhttps://aspergerforeningen.dk/nyheder/2205/aabent-brev-til-the-lancet-commission-on-the-future-of-care-and-clinical-research-in-autism
ASKhttps://www.atipicni.hr/nista-o-nama-bez-nas/
Aspies e.V.https://aspies.de/offener-brief-zu-einem-autismus-artikel-der-lancet-kommission/
Autistics Unmasked
Adventor
A-komunita
Agrupación Pregúntale a los adultos autistashttps://www.facebook.com/groups/respuestasdeautistas/
Autista Construyendo https://www.facebook.com/AUTISTACONSTRUYENDO/posts/488768579439403 (Spanish)
Asperbuhohttps://www.facebook.com/AsperBuho1090/posts/1292785927867616 (Spanish)
Con estilo autistahttps://www.facebook.com/ConEstiloAutista/posts/469504724818250 (Spanish)
Aprender A Querermehttps://www.facebook.com/aprenderaquererme/posts/359307272863356
Neuropeculiarhttps://neuropeculiar.com/2022/02/14/lettera-aperta-alla-commissione-lancet/