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:
- Disrespected / invalidated
- Bullied / coerced / manipulated / abused
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
- Selective mutism
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
- Various health problems, including eating disorders, GI problems, migraines, autoimmune diseases
- 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.
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.
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”
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.
- 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:
- Heightened sensitivity to social injustices
- Growing numbers of marginalised people
- 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:
- A person has to seek advice from at least one trusted peer with potentially relevant or complementary knowledge or expertise.
- 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.
- 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.
- 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
- 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.
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.
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.