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 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.

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.

Professional education

The objectives of the Autistic and neurodiversity civil rights movements overlap significantly with the interests of those who advocate for greater levels of cultural and psychological safety in the workplace and in society in general.

For systematic education, we are curating timeless concepts for nurturing and describing ecologies of care. Many of the concepts defined are linked to related articles, each of which links to further sources and related research.

AutCollab offers dedicated professional education for:

• Healthcare professionals
• Educators
• Employers

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.

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.

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.

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.

The course Introduction to the Neurodiversity Paradigm and Intersectionality is an interactive “deep dive” into neurodiversity and autistic culture. It is creative, collaborative, and goes beyond the usual medical and workplace neurodiversity ideas. Very refreshing to take part in CPD catering to different learning and communication styles. It was the most fun I’ve had in CPD this year! The course book is beautiful.

Dr Sarah Bernard FRACP, Australia

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

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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

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.

🧵Attempting to understand Autistic people & culture is difficult for many, because of the chasm between a) the pseudo-scientific and culturally biased behaviourist framing of autism in the DSM and b) accounts of Autistic ways of being articulated in the neurodiversity paradigm. https://t.co/z42YpWSV4q

— Jorn Bettin (@jornbettin) May 2, 2022

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

• https://psychology.org.au/getmedia/d873e0db-7490-46de-bb57-c31bb1553025/aps-code-of-ethics.pdf
• https://www.psychologyboard.gov.au/Standards-and-Guidelines/Code-of-conduct.aspx

Antidiscrimination legislation in Australia

• Attorney-General’s Department (Federal) https://www.ag.gov.au/rights-and-protections/human-rights-and-anti-discrimination/australias-anti-discrimination-law
• Australia was one of eight nations participating in the drafting and adopting the UN Universal Declaration on Human Rights in https://humanrights.gov.au/our-work/publications/australia-and-universal-declaration-human-rights
• Australia has been a party to CEDAW since 17/08/1983 https://humanrights.gov.au/our-work/sex-discrimination/publications/womens-human-rights-united-nations-convention-elimination#:~:text=The%20Convention%20on%20the%20Elimination,bill%20of%20rights’%20for%20women
• Australia signed the UN Convention on the Rights of Persons with Disabilities in July 2008 and July 2009 https://www.dss.gov.au/our-responsibilities/disability-and-carers/program-services/government-international/international-participation-in-disability-issues#:~:text=UN%20Convention%20on%20the%20Rights%20of%20Persons%20with%20Disabilities&text=On%2017%20July%202008%20and,CRPD%20and%20the%20Optional%20Protocol.
• Australia ratified the CRC in December 1990 to protect the rights of all children https://www.ohchr.org/sites/default/files/Documents/ProfessionalInterest/crc.pdf
• There is no separate international human rights agreement that deals specifically with sexual orientation or gender identity. However, all people have the same human rights regardless of their sexual orientation or gender identity. https://humanrights.gov.au/our-work/section-4-human-rights-and-discrimination-basis-sexual-orientation-or-gender-identity
• Qld Human Rights Commission https://www.qhrc.qld.gov.au/resources/legal-information/legislation#:~:text=File%2C%20905.5%20KB)-,Anti%2DDiscrimination%20Act%201991,complaint%20and%20have%20it%20resolved

United Nations

• Universal Declaration on Human Rights https://www.ohchr.org/sites/default/files/UDHR/Documents/UDHR_Translations/eng.pdf
• The Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW) was adopted in 1979 by the UN General Assembly and entered into force on 3 September 1981. https://www.ohchr.org/sites/default/files/Documents/ProfessionalInterest/cedaw.pdf
• The Convention on Rights of People with Disabilities https://www.un.org/disabilities/documents/convention/convoptprot-e.pdf
• The Convention on the Rights of the Child https://www.ohchr.org/sites/default/files/Documents/ProfessionalInterest/crc.pdf
• The Yogyakarta Principles on the Application of International Human Rights Law in Relation to Sexual Orientation, Gender Identity, Gender Expression and Sex Characteristics to Complement  https://yogyakartaprinciples.org/

Violence Against Autistic Women and Girls and People with Disabilities

• Snapshot from Royal Commission https://disability.royalcommission.gov.au/news-and-media/media-releases/alarming-rates-family-domestic-and-sexual-violence-women-and-girls-disability-be-examined-hearing#:~:text=The%20data%20presented%20during%20this,or%201.7%20million)%20without%20disability.
• AIHW report on violence against people with a disability https://www.aihw.gov.au/reports/disability/people-with-disability-in-australia/contents/justice-and-safety/violence-against-people-with-disability
• Violence Against Autistic Women http://www.australianautismalliance.org.au/wp-content/uploads/2017/03/Autistic-Women.pdf
• Sexual Violence against Autistic Girls https://www.spectrumnews.org/news/girls-autism-high-risk-sexual-abuse-large-study-says/
• Australian Government report on Elder Abuse https://aifs.gov.au/publications/national-elder-abuse-prevalence-study-final-report
• Code of Practice working with FV survivors https://safeandequal.org.au/working-in-family-violence/service-responses/specialist-family-violence-services/the-code-of-practice/
• Working with survivors https://www.vic.gov.au/maram-victim-survivor-practice-guides/print-all Australia’s first Royal Commission into Family Violence was completed in Victoria in 2015, three years before I stepped into your professional offices. It did make the national news. (https://www.vic.gov.au/about-royal-commission-family-violence )
• Destroy the Joint has been registering the numbers of women killed in intimate violence since 2012, six years before I stepped into your professional rooms. Those numbers continue to be made available to the media on a regular basis. (https://www.facebook.com/pages/category/Public-Service/Counting-Dead-Women-Australia-111647810713234/ ).
• The final government report into institutional child abuse was released in December 2017, the culmination of five years’ work with the ongoing investigations being reported in the media on nearly a daily basis. That was seven months before I stepped into your professional offices. (https://www.childabuseroyalcommission.gov.au/final-report)

By Jorn Bettin & Ulku Mazlum

A savage is not the one who lives in the forest, but the one who destroys the forest.

– Ulku Mazlum

The sickness of civilisation

The exploitative nature of our “civilised” cultures is top of mind for many neurodivergent people. In contrast, many neuronormative people seem to deal with the trauma via denial, resulting in profound levels of cognitive dissonance.

If we care to look with open eyes, there is no shortage of evidence that points to the social toxicity of “industrialised civilisation”:

Departure from a hunter-gatherer living is an opportune window for insight into the effects of modernization. The Ik of Uganda purportedly become more depressed upon shifting from hunter-gather to agricultural practices. After indigenous circumpolar peoples rapidly modernized, there was a rampant incidence of diabetes and suicide rates tripled within a decade.

Other lines of evidence suggest modernization is associated with depression. Indexing modernization by measures of belief in magic, hunting, gathering, agriculture, and technological complexity, a cross-cultural analysis of community women in rural Nigeria, urban Nigeria, rural Canada, and urban U.S. found the degree of modernization to correlate with a higher prevalence of depression in a dose-dependent manner.

Adoption of the American lifestyle appears to explain higher rates of depression in Mexican Americans born in the U.S. compared to Mexican immigrants.

As metropolitan China has undergone rapid cultural transformation over recent decades, the risk of suffering from depression appears to have risen dramatically: in a retrospective study, Chinese born after 1966 were calculated to be 22.4 times more likely to suffer from a depressive episode during their lifetime compared to those born earlier than 1937.

In developed countries, urban dwellers have a higher prevalence of psychiatric disorders, and specifically mood and anxiety disorders, compared to rural counterparts.

In an investigation of affective disorder prevalence among the Amish, a community that maintains a traditional agrarian culture with notable unity and social connectedness, the prevalence of MDD was found to equal that of bipolar disorder- about 1%.

The above evidence suggests higher depression prevalence and risk is associated with general aspects of modernization.

…

There seems to exist a human tendency to view current events and social trends as evidence of society’s downfall, but could it actually be happening now? Accumulating evidence indicates that the social environment in modern-industrialized countries, especially in the United States, has become increasingly competitive, threatening, and socially isolating.

Contemporary populations may now be more susceptible to depression because of greater inequality, low social support, intense individual competitiveness, and increased social failure. Onset of a major depressive episode often coincides with stressful life events.

The modern social milieu could contribute to rising rates of depression via higher frequency and/or severity of adversity. Many have posited that capitalist values have directly contributed to a decline in social well-being and an increase in psychopathology throughout the western world.

A rise in psychopathology among young adults has been attributed to a shifting cultural emphasis away from intrinsic goals, e.g. social relationships, community, and competence, to extrinsic goals, like money, status, and appearance.

Similarly, an increase in anxiety among children and college students was preceded by or coincided with measures of lower social connectedness and higher social threat.”

…

In 1985, the General Social Survey found that the mean and mode for number of confidants, people with whom one can comfortably discuss important issues, were both 3 and 3. In 2004, a repeat of the survey revealed that the mean and mode had respectively dropped to 2 and 0.

This trend toward isolation is alarming as loneliness appears to spread through social networks as a contagious process with a positive-feedback loop in which people with fewer friends become increasingly isolated and lonely over time.

Most consider the current social environment of western societies to be a gross deviation from the human EEA, as anthropologists report stronger social cohesion and a near-total absence of time spent alone in traditional foraging societies. The extensive risk for physical and mental morbidity, e.g. anxiety, inflammation-related chronic diseases, etc., from social isolation offers support for an environmental mismatch.

Brandon H Hidaka. “Depression as a disease of modernity: explanations for increasing prevalence.” J Affect Disord. PMC 2013 Nov 1.

Mental health coping mechanisms

The commercial profit oriented pharmaceutical approach in Western medicine has a lot to answer for. It is one thing to read about medical drug abuse in the abstract, it is another thing to read about the experiences people have made with addictive “medication” such as benzodiazepines, and about the questionable motives of the doctors who prescribe such drugs.

The medical model in the diagnosis of Autistic people focuses entirely on the identification and “treatment” of symptoms, and fails to acknowledge the obvious underlying causes, i.e. the sources of trauma in industrialised societies. Additionally, exclusive reliance on the medical model in the diagnosis of other forms of neurodivergence, such as bipolar disorder, obsessive compulsive disorder, etc. prevents many people from seeking valuable support from neurodivergent peers.

Without the support of an ND whānau, Autistic life feels like a life in continuous emergency mode.

If we are lucky it feels like running an ultra-marathon for years or decades, often at the limit of what we can sustain physically, until we burn out emotionally. If we are unlucky, we crash and burn more abruptly, both physically and emotionally. Sooner or later, we reach the point where there is no path forward without a network of trustworthy neurodivergent whānau relationships around us.

Instead of misdiagnosing and pathologising Autistic people, and instead of medication to numb the dehumanising living conditions usually referred to as “industrialised civilisation”, people need caring and supportive relationships, activities they genuinely enjoy, and purposeful work that they genuinely believe in.

This applies to all people, but this observation can not be reiterated often enough in relation to hypersensitive Autistic people, who are often immediately sent down the medical route, based on dehumanising myths that are propagated by the Autism Industrial Complex and as a result of the profound lack of understanding of the social and sensory needs of Autistic people within mainstream society.

In this society people end up getting killed by the bullshit of social competition and toxic relationships. The web of life is something entirely different, it’s an ecology of care, and in their hearts people know it, especially hypersensitive and hyper-compassionate Autistic people.

The sickness industry

Not all of modern medicine is useless, but the healthcare sector has huge problems. Here is a good article on the illusion of evidence based medicine and a related (30 min) commentary.

Jureidini J. and McHenry L. B. The illusion of evidence based medicine. BMJ 2022;376:o702

This system needs to be dismantled. It is extremely cruel, not only to our bodies but also to our minds. Via Autistic trauma peer support we are starting to catalyse more positive experiences between Autistic people over extended periods of time.

But we need positive experiences every day, every week, every month, every year, and continuously over 10+ years. This is what it takes to recover from abuse, and to gain solid ground on top of which we can build further.

Environmental engineering

The Autistic / ND whānau concept and Autistic / ND communities are important and essential building blocks of a new emerging reality.

My Autistic survival strategy to date has been one of ignoring conventional advice, distrusting all hierarchical systems of “authority”, learning to trust what the sensations in my body and my mind are telling me, and never being afraid to resort to radical “environmental (re)engineering” whenever the opportunity arose.

I left a toxic home environment immediately after finishing high school. Along the way I discovered I could manage my allergic asthma by rigorously controlling my home environment (removing all sources of allergens) and by regular exercise, without any use of ongoing medication.

However, in my late 20s doctors warned me about unhealthy blood pressure readings, that I might have a heart attack within ten years, even though I always tried to eat healthy and tried to exercise whenever I found the time. To me the source of chronic emergency-level stress was obvious. I decided to drop out of traditional employment in my mid 30s, after coming to the conclusion that so-called jobs in the corporate world are not a survivable option.

Later, around ten years ago, after further traumatising “start-up” experiences with an investor, together with my partners and colleagues, we decided to eliminate all toxic competitive and profit oriented elements from the operating model of our small company, resulting the principles that power the NeurodiVenture model, which has served us well, and which we are still using today.

By conventional measures of “success” in rich countries (no regular income, and still paying off a mortgage), work-life balance (none), numbers of friends (limited to a few Autistic and neurodivergent people) etc. the overall result is mediocre at best. But I am Autistic, and the path that I have chosen is the only one that was survivable, the only one that is compatible with my Autistic way of being, and actually, over the course of the last ten years, my stress levels have come down, I am healthier than I ever was, and the small ecology of Autistic care around me is priceless, it is my Autistic whānau.

The social model of disability applies. We need to actively encourage environmental engineering, and we need to push back against toxic social expectations. I see it as my obligation to 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.

– Jorn Bettin

Timm K. et al. “Replacing the DSM with the Neurodiversity Paradigm and Autistic Culture.” Intersectional Infinity Summit 2022.

There is nothing wrong with Autistic people, but there is a lot of wrong with a society that systematically discriminates against all forms of diversity, and especially Autistic ways of being that involve non-participation in competitive social games.

Foundational social norms for Autistic / ND whānau

The Autistic / ND whānau concept is building on the foundation of the NeurodiVenture model, which enumerates and describes the social norms needed to de-power economic relationships.

With the ND whānau concept we are extending de-powered ND relationships to human scale groups of Autists and otherwise ND people who deeply care about each other, support each other in all kinds of ways that are not quantifiable in monetary terms, and who work and live together on a daily basis: 

1. Communication is based on openness and honesty
2. Social power games are not tolerated
3. Members are committed to caring for each other’s wellbeing and to not hurting each other

The NeurodiVenture experience has led to a 7-year incremental journey of deepening mutual trust and joint projects towards full partnership. After 7 years, in our experience, it has become obvious whether a relationship is a lifetime partnership, i.e. it is one if the relationship still exists.

The simple foundational social norms we rely on not only benefit Autistic and otherwise ND people, they can be adopted in any context, to better serve the needs of all disabled and otherwise marginalised people within larger groups.

Along the way, some relationship attempts fail, and yes, that’s traumatising. But as long as there is a network of healthy de-powered relationships, the ND whānau, i.e. the biocultural organism, survives and at times thrives.

With the NeurodiVenture model we have “hacked” entrepreneurship, employment, finance, and money into de-powered lifetime partnerships based on mutual trust, egalitarian sharing of risks and resources, and development and operations of valuable services for wider society. With the Autistic / ND whanau concept we are “hacking” extended families, friendships, and romantic relationships into de-powered lifetime ecologies of care, de-powered partnerships based on mutual interests, and consenting sexual relationships.

The social structure of Autistic / ND communities

What we are aiming at with ND communities, 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. The social structure of ND communities is the same as the social structure in any other community:

1. An Autistic / ND whānau can be distributed across more than one community
2. A household can be part of one or more Autistic / ND whānau
3. A household is part of exactly one Autistic / ND community

Just as ethnic communities or LGBTQIA+ communities in specific cities can be overlapping and geographically dispersed to a certain extent, local or regional Autistic / ND communities can be interwoven with other communities and non-Autistic households.

The key point is that some households may select to identify as Autistic / ND, and select to focus on collaborations and relationships with other Autistic / ND households and individuals in their local community. In order for this to be viable, Autistic / ND communities need to be provided with appropriate government support and infrastructure to support community activities.

Thriving Autistic / ND communities, that act as local centres of Autistic / ND culture, can only come into existence if we can imagine new kinds of collaborations between Autistic / ND whānau and the rest of society, and if we allow designs to emerge organically from the collective intelligence that exists amongst intersectionally marginalised people at ground level.

By Jorn Bettin & Ulku Mazlum

The need to be resilient is something that Autistic people unlearn over time. We need to learn to be gentle with ourselves. With the concept of Autistic whānau we are exploring new terrain and new possibilities. It’s something that we can incrementally weave into the Autistic collaborations that are already established.

We care deeply about all the ones we love, and this is not limited to the human sphere. We are viscerally connected into our ecology of care by emotional bonds and shared experiences, and not by abstract cultural symbols.

Autistic people find interactions with the W.E.I.R.D. social world so traumatising, because that world is not predicated on relationships, mutual trust, mutual care, and shared joy, pain, and grief. The W.E.I.R.D. world is predicated on transactions, mistrust, exploitation, and betrayal. It is a world completely devoid of life and unconditional love.

The capacity for culture opens many traps for humans. Human history and the stories we tell us are full of them. Many humans have good intentions, but the cultural context desensitises humans, and turns many into zombified addicts looking for the next hit in social status and power. The addiction to adrenalin powers the junkies in financial markets. It’s very sad, to see them first hand. Most Autistic people are immune to these addictions, and this is why they are feared and sometimes hated and vilified.

Autistic whānau

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.

Whānau are not powered by adrenalin but by love and mutual care. Most Autists are not born into healthy Autistic whānau.

Takiwātanga : Autistic ways of being, takiwātanga literally means “in their own space and time.”

We have to co-create our whānau in our own space and time. In many indigenous cultures children with unique qualities are recognised, are given adult mentors with similarly unique qualities, and grow up to fulfil unique roles in their local community, connected to others with unique knowledge and insights, perhaps even in other communities. If we are embedded in an ecology of care, we can thrive and share the pain and the joy of life.

Whānau is much more than the Western notion of “family”. It is a deep connection, a bond that you are born into that no one can take away from you.

An Autistic whānau could be conceptualised as a soul tribe, it is not an amorphous global Autistic community, but rather a human scale ecology of care, consisting of Autistic relationships between soul mates that are bonded through shared experiences and working together.

Closely related concepts:

Whanaungatanga : relationship, kinship, sense of family connection – a relationship through shared experiences and working together which provides people with a sense of belonging. It develops as a result of kinship rights and obligations, which also serve to strengthen each member of the kin group. It also extends to others to whom one develops a close familial, friendship or reciprocal relationship.

Whakawhanaungatanga : process of establishing relationships, relating well to others.

Whakapapa : the “genealogical descent of all living things from God to the present time. “Since all living things including rocks and mountains are believed to possess whakapapa, it is further defined as “a basis for the organisation of knowledge in the respect of the creation and development of all things”. Hence, whakapapa also implies a deep connection to land and the roots of one’s ancestry. In order to trace one’s whakapapa it is essential to identify the location where one’s ancestral heritage began; “you can’t trace it back any further”. “Whakapapa links all people back to the land and sea and sky and outer universe, therefore, the obligations of whanaungatanga extend to the physical world and all being in it”.

In a healthy culture Autistic children are assisted in co-creating their unique Autistic whānau, but in our “civilisation” this cultural knowledge has been lost and is suppressed. 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.

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.

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 Autistic whānau to feel loved and alive.”

The foundation of our whakapapa is the ocean and the mountains. Via Autistic trauma peer support we are embarking on the journey of co-creating healthy Autistic whānau and Autistic culture all over the world.

Collaboration at human scale

Every word in the title of the book on ‘The Beauty of Collaboration at Human Scale : The timeless patterns of human limitations’ has been very carefully chosen. But words have limits. What the title is trying to convey is that life feels like a dance of balancing all these words and concepts.

We’ll never be able to put a finger on it, so I say “feel” rather than “is”, and it is a dance because life is dynamic, it always evolves. Words like “perfection” or “success” are not part of the title, because they imply a universal sense of direction that regularly has gotten civilisations into trouble. Maybe the one unwritten word that emerges from the dance is “diversity”.

I spent my life until around 2014 developing a human scale meta language system – a formal visual grammar for creating all kinds of visual languages that are optimised for human cognitive limits. The motivation was similar to the motivations of Aboriginal symbolic artists over the last 70,000 years, cultivating a language system and a series of protocols for high fidelity knowledge transmission over thousands of years.

Since the Global Financial Crisis in 2007 my focus incrementally shifted from language systems to what I now refer to as human scale biocultural organisms and ecologies of care. This builds on all the earlier work on human scale language systems. With our small NeurodiVenture we now have 10 years operational experience with human scale biocultural organisms that are adapted to the needs of Autistic and otherwise neurodivergent people. Over the last 3 years I have found myself more and more involved in weaving biocultural organisms into larger ecologies of care that are beyond human comprehension, and that are not limited to humans. Mutual care at human scale, within biocultural organisms and between them, and evolution needs to replace the human hubris of “control”.

– Jorn Bettin

Those who are the most sensitive and traumatised and have not lost the ability to extend trust constitute an enormously rich and diverse repository of insights and hold many of the keys needed for co-creating ecologies of care. Collaboration at human scale within an Autistic whānau is truly beautiful, and having peers with us on our journey of expanding our parallel Autistic reality is wonderful. 

When we engage in collaboration at human scale, we are nourishing our Autistic whānau. we are feeling well if the relationships in our whānau are providing the right kind of nourishment for everyone. As evolutionary biologist David Sloan Wilson points out, small groups are the primary organisms in human societies.

The following language is a useful anthropological toolkit for developing a nuanced understanding of different cultures, the relationships between humans, and the effects of Autistic trauma.

3×3 matrix of relationship types with parameters

Categories of relationships

1. whānau/Autistic whānau (kinship, biological or culturally assigned by the local culture), permanent
2. friendship, for the duration of mutual interest and consent
3. sexual, for the duration of mutual interest and consent

Power dynamics

1. depowered
2. uni-directionally powered-up (culturally defined, or as a result of trauma)
3. bi-directionally powered-up (culturally defined, or as a result of trauma)

4×5 matrix of fundamental relationship types

Categories of relationships

1. biological kinship, permanent
2. [Autistic] whānau, culturally assigned kinship by the local culture or agreed between Autistic people, permanent
3. friendship, for the duration of mutual interest and consent
4. sexual, for the duration of mutual interest and consent

Power dynamics

1. depowered
2. uni-directionally powered-up, culturally defined
3. uni-directionally powered-up, as a result of trauma
4. bi-directionally powered-up, culturally defined
5. bi-directionally powered-up, as a result of trauma

Cultural analysis

Industrialised culture: A mix of

1. kinship (all power dynamics)
2. friendship (all power dynamics)
3. employment = friendship (uni-directionally powered-up)
4. economic slavery = kinship (uni-directionally powered-up)
5. sexual (bi-directionally powered-up)

The language in which powered-up industrialised culture is being sold: A mix of

1. Happy families
2. Many friends
3. Successful careers
4. Economic growth
5. Romantic relationships

Note that the power dynamics associated with quantifiable “success” metrics constitute the essence of industrialised culture. In this paradigm the only escape from a toxic zero sum competitive game is the equally toxic delusion of infinite growth on a finite planet.

Traumatised industrialised Autistic culture: A mix of

1. Autistic whānau (depowered)
2. friendship (depowered)
3. friendship (uni-directionally powered-up, as a result of trauma)
4. sexual (depowered)
5. sexual (uni-directionally powered-up, as a result of trauma)

Coercive power is the root of all evil.

Depowered feral Autistic culture: A healthy Autistic culture involves a mix of the following depowered relationship categories:

1. Foundation: Autistic whānau (depowered, life-long self-chosen whānau relations, i.e. life-partnerships)
2. Extension: friendship (depowered, for the duration of mutual interest and consent)
3. Extension: sexual (depowered, for the duration of mutual interest and consent)

Note that the main criterion for the stable foundation is the life-long commitment. This is what makes it work as a healthy whānau construct. We are not using the term family, because families in the modern sense are too small to be viable and sustainable.

How Autistic trauma plays out over time

Human beings are relational. We can understand all of what we feel, think, and do in terms of relationships. Things went downhill when people started to think and act in terms of egos. 

Trauma can play out in so many different scenarios. In all cases it always involves people exerting coercive power (in various forms) over others on an ongoing basis. And this is exactly what is “normalised” in powered up civilisations. It’s abuse by design, and it ripples through all of society, consistently marginalising those who refuse to join the social power games. 

Dealing with our biological family is often exhausting. We feel drained, and can barely function. We may not find enough energy to wash our face or brush our teeth. We feel understood by our peers. We intuitively feel when other Autists are struggling, even if they don’t tell us. 

We feel how our peers are struggling, because we recognise familiar patterns. Our heart, our mind, and our gut, every fibre of our body recognises the patterns. And we know this goes both ways. We understand each other’s struggles in a way that others can’t. This is what makes us human. This is what makes us Autistic. And this is what connects us to all of life, into the ecology of care that surrounds us when we are in a healthy environment. 

It takes a very perverse kind of culture to reprogram non-autistic people so that they largely lose this capacity, and to traumatise many Autistic people to the extent that they can no longer extend trust to anyone, and develop a very dim view of humans. It is a culture that is perverted to the very core. It is the system that perpetuates itself until those Autistic people who are still capable of doing so start building a parallel reality. Those that do so must find ways of caring for each other so that no one gets sucked back into the vortex of the death spiral of “civilisation” and anthropocentrism.

We live in an insane world. In a sick society. For 10,000 years humans have been mainly concerned about “powering up” their relationships with each other and with the rest of the living world. Now hardly anyone sees the root cause and the route out of the death spiral. We have been building social sand castles in the tidal zone for several millennia, and still refuse to acknowledge that the next tide of social upheaval will arrive within the next 12 hours.

This “civilisation” is a normalised state of perpetual war. If a world of powered up relationships actually worked well if only power were less concentrated and more equally distributed, the way to resolve risks such as a nuclear war would involve finding a way of distributing the nuclear weapons arsenal equally across all nations. The flaw in reasoning is obvious. The problem is not distribution but the normalisation of using power.

Some of us have seen far too much violence in our lives already and have been traumatised in too many ways. Autistic people in particular end up in impossible situations far too often. It’s okay not to be okay in this world. We need to be there for each other. We can create much safer places, where we may still struggle, but not be put in impossible situations.

We are not failures at all. The biggest failure of this world is the notion of the arrow of progress and the associated notion of success. If we fail in this world it actually shows that we have kept a profound sense of integrity, and our bodymind has not been desensitised to the suffering in this world. Also, our body and mind suffer if we are not part of a healthy human scale biocultural organism.

Once we are part of an Autistic whānau, we need to experience that it’s always okay to ask for help, and that our entire whānau will take care of us. We can only thrive together. Individual failure and success are toxic concepts that have no place in an ecology of care. These words are meant to be understood literally. Members of Autistic whānau are travelling together, caring for and watching out for each other along the way.

Autistic trauma leads us to peer support, and this leads us to Autistic whānau, which is a concept with enormous potential that can’t be overstated. The negative compels us to work towards something uniquely beautiful that transcends the crippled sense of imagination in the society that surrounds us. It is this journey together with our Autistic whānau that makes life worthwhile and that allows us to incrementally heal from trauma.

We all deserve to be loved and cared for by an Autistic whānau and an ecology of care. We leave no one behind. It is together that we co-create the magic of a new reality that makes the old reality obsolete. Using the right words and refusing to use the words that the old system wants us to use is part of the magic. The old reality wants to draw people into life draining battles, because it feeds on the energy and souls of people.

The new reality appreciates the diversity of all forms of life. It is the billion year old magic that transforms the energy of the sun into the cycle of life and the beauty of art. Magic is the art of Autistic collaboration. We take care of each other in ways that others can’t. The impossible becomes possible. This happens with all depowered Autistic relationships. The old system does not stand a chance against collaborative ecologies of care consisting of Autistic whānau.

An example of Autistic care:

“…To achieve a ‘biosphere centric’ perspective, this author undertook about 13,000 hours of undergraduate studies in Earth Sciences while studying much more than degree requirements after a lifetime of reading, mainly living in a biodiverse but degrading rural area. It involved understanding the biosphere as a massively complex web of life that evolved from bacteria over billions of years and diversified into millions of species, all related to each other, all ‘earth creatures’, of which, Homo sapiens are just one species. It is possible that I have spent 60,000 hours on this task now without respite. For Our Family…”

When abused and traumatised Autistic children become adults, the abuse often carries on in a subtle way that is fully “normalised” for the abusers. Each time when abusive parents want to remind us of our childhood, they pretend to see happy times, and we see hell on Earth. Abusers need to do this to feel good about themselves. Many never apologise for anything. We see through delusional self-serving displays of affection. We’ve intuitively felt the fakeness even when we were small children. We recoiled when our parents tried to hug us.

Abusers have children to serve their own emotional needs, without ever considering the emotional needs of their children. In civilisations that normalise coercive power, children become the commodities needed to propagate the normalisation of power, the complete negation of the human potential for unconditional love and care, the negation of collaboration based on life-long trustworthy relationships at human scale. 

In our times the damage caused by 10,000 years of power hungry empires and power drunk human primates is becoming fully visible. Over that period humans have increasingly lost the essence of their humanity.

Rebooting a parallel reality that is not infected with the seeds of the dying system is only possible from the ecology of care of feral depowered Autistic whānau that we are now nurturing into life.

Autistic people are highly sensitive. There is a whole boatload of ideas and mental models that we need to share to allow our peers to understand our context. It takes time, and it can all be done incrementally, and along the way we learn from each other. We will do anything to support the people we care deeply about. This becomes possible by focusing on human scale.

We need to learn to take care of ourselves as much as we take care of others. We notice all the energy, love, and care that our peers invest. We know what becomes possible by applying Autistic relationships in the context of an ecology of care that exists around our Autistic whānau, in the context of a growing network of depowered trusted relationships.

We know how it feels to be surrounded by slightly less sensitive but well meaning people who unknowingly pile further demands on us without even noticing. That’s where peer support can help identify overload. The more skilled and experienced we are at what we do, the more effortless it looks from the outside, and this leads some people to believe it is always easy.

Non-autistic people don’t see our struggles when we don’t tell them, and we are not telling them our struggles. We don’t complain. We probably get cranky and fussy about other things while people don’t understand while we are being cranky. We are not good at mentioning our needs and struggles, and especially not good at asking for help. In our childhood we learned not to express our needs and feelings. They were inconvenient for the people around us. So, we had to unlearn them. As children we learned that our needs and feelings are entirely irrelevant. 

Deep down we still feel our needs and emotions are inconvenient and would be a burden. We learned that people are scared of our emotional intensity, so we learn to disconnect from our emotional side. But other people can not read our minds, and this leads to endless strings of misunderstandings. 

That is one of the reasons compatible Autistic peers get along well. They intuitively pick each other’s needs and moods without needing to use many words. We are dependent on compatible Autistic peers expressing our needs and feelings.

Experiencing abandonment as a child shapes our entire life. Our top priority becomes to never ever inflict something like this on anyone. With the help and trust of depowered Autistic relationships around us we can for the first time have positive experiences, and this in turn shows us that a different reality is possible. 

We can heal if we learn not to look for acceptance and love in the wrong places. Our honesty, selfless and open nature can become a deadly weapon against us. We see the worst version of nice people. We need to watch out for each other, so that people don’t exploit our goodwill endlessly. 

Autistic people need Autistic healers. The healing is a shared experience. We need to heal in a safe place of mutual understanding. Anything else is a coping mechanism. That is why traditional therapy doesn’t work well with some Autistic people. We can not unlearn what we have learned. We are fixed.

Co-creating healthy depowered Autistic whānau

The Autistic whānau concept is an immensely valuable part of Autistic peer support, especially when it comes to trauma related to fear of abandonment. It is only when a stable reliable whānau foundation is in place at human scale that humans feel safe.

Only on top of a genuinely safe foundation of depowered whānau relationships can humans explore friendships and sexual relationships without fear of abandonment, because these are actually secondary, less foundational aspects of human social life. Regarding the social dimension and co-creating healthy depowered Autistic whānau, the following interviews are of interest:

1. Harrison Owen on Open Space and on depowering communication and collaboration
2. Oswin Latimer on how Autistic trauma affects relationships

Our basic needs are met via our whānau, especially if the whānau operates locally agreed internalised social norms that keep all relationships within the whānau depowered.

With the language introduced above, we can express the core of the problems in powered-up societies. Many relationships deteriorate and become toxic:

1. Instead of the commitment aspect of love, emotional support, and deep care, people get economic slavery at home, and economic warfare at scale
2. Instead of the friendship aspect of love, emotional support, and creative play, i.e. doing enjoyable things together, people get entrapped in career ambitions and other competitive social games, and at scale we end up with an energy and resource hungry socio-techological mono-culture
3. Instead of the sexual aspect of love, emotional support, and creative play, sex becomes a tool for emotional and physical abuse, and we end up will all the familiar social problems that we see all over the world

People knew this many hundred thousand years ago. It is no accident that the strongest social norms used to be norms against the emergence of power gradients. As soon a power enters a relationship, the quality of human / Autistic relationships is compromised, and the health of an entire biocultural organism suffers.

A single powered-up relationship causes stress in many other relationships. These observations will prove to be essential for healing from Autistic trauma and for co-creating healthy Autistic whānau going forward.

Small is beautiful. If at small human scales we co-create good company, and love each other and care for each other, we’re doing the things that are compatible with our evolutionary history. That would be a coordinated retreat from an overpopulated planet, and it would minimise human and non-human suffering.

We’ve got the necessary cultural toolkit. Now it’s a matter of deploying it locally, and not just online, in a relatively safe physical environment, with the kind of people who are ready for it. The toolkit consists of simple first principles rather than very specific cultural norms and tools. It’s more about being able to offer emotional support and being able to ask the right kind of questions to learn from each other in a safe environment than about having all the “answers”.

We deeply appreciate the care, love, protection, safety our peers can provide. It is an unusual feeling when we have never felt being taken care of the way that only other hypersensitive and traumatised Autistic people can.

When we spend time with other Autistic people, we know that life is worthwhile, that there is something worth struggling for – together. We know how it feels to struggle alone for decades, and for others to assume that we are strong and “resilient”. No, we are not that at all. The difference is that we have not lost the ability to care and love deeply, the ability to create healthy human cultures from scratch.

We need to put up a barrier to further abuse. In the same way that we can consistently use language to resensitise people to the need to co-create ecologies of care, we can use language to protect our minds from mistaking the people who raised us with people with whom we have healthy caring relationships, as we would have with parents who actually loved us unconditionally, without playing social games with us. 

We need to learn to take good care of ourselves and to ask for help from trusted peers when we need it, whatever it may be. We can help each other ask for help, because this is something that we unlearn if we have spent too long in environments where no real help is available, and where asking may even be used against us.

Many wonderful Autistic people are continuously pushed to the limit. “Normality” or “reality” is the dark cloud that is tormenting us. Some of us are struggling every day. Autistic people are hypersensitive. In the fast paced world of industrialised busyness many of us are regularly affected by stress in the form of GI problems, migraine attacks, depression, and other symptoms of chronic anxiety.

We need to start doing something about the root causes, the causes of chronic stress. Otherwise “treatments” only address surface symptoms and we may attempt to power through dangerously stressful situations that take a toll on our mental health. We need to create ecologies of care around us, so that we can start to heal. 

We often need love and care rather than many words. It helps to struggle together. It takes an Autistic whānau, an ecology of care, for us to continue. Knowing that we can count on each other keeps us going. Depowered Autistic relationships of love and care are the building blocks of Autistic whānau, i.e. healthy Autistic biocultural organisms.

We need to let each other know that there is a safe place in this world for all of us, and that many of us will do anything we can to help our peers get to a safe place. If people have manipulated or exploited us, it is not our fault. We have agency. We can shape safe places so that they meet our needs, and we must learn not to be afraid to ask our peers for help.

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

organisation	link
EUCAP	https://eucap.eu/2022/02/14/open-letter-to-lancet-commission
ASAN
Mi Cerebro Atípico	https://www.facebook.com/527565417690268/posts/1375175466262588/(Spanish) https://twitter.com/Cerebro_Atipico/status/1493196115096842241 (Spanish)
PARC
AFK
Autistic Doctors International
Autistic Collaboration Trust	https://autcollab.org/2022/02/14/open-letter-to-the-lancet-commission/
LAVA	https://lavautisme.wordpress.com/2022/02/13/open-brief-14-2-2022/
ARGH
Asociacion Autistas de Colombia	https://www.facebook.com/100442532355847/posts/152930233773743/(Spanish)https://www.facebook.com/100442532355847/posts/152930483773718/(English)
TARA	www.tara.org.au
estas
suntAutist	https://www.suntautist.ro/viitorul-ingrijirii-si-cercetarii-clinice-in-autism-scrisoare-deschisa-catre-comisia-lancet/
Suomen Autismikirjon Yhdistys	https://asy.fi/avoin-kirje-lancet-komissiolle
PAS Nederland	https://www.pasnederland.nl/home/open-brief-aan-de-lancet.html
Otoemojite	https://otoemojite.com/20220214openletter/
CLE Autistes	https://asso.cle-autistes.fr/lettre-ouverte-a-the-lancet-autisme-profond/
AAFV	https://aspergerforeningen.dk/nyheder/2205/aabent-brev-til-the-lancet-commission-on-the-future-of-care-and-clinical-research-in-autism
ASK	https://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 autistas	https://www.facebook.com/groups/respuestasdeautistas/
Autista Construyendo	https://www.facebook.com/AUTISTACONSTRUYENDO/posts/488768579439403 (Spanish)
Asperbuho	https://www.facebook.com/AsperBuho1090/posts/1292785927867616 (Spanish)
Con estilo autista	https://www.facebook.com/ConEstiloAutista/posts/469504724818250 (Spanish)
Aprender A Quererme	https://www.facebook.com/aprenderaquererme/posts/359307272863356
Neuropeculiar	https://neuropeculiar.com/2022/02/14/lettera-aperta-alla-commissione-lancet/

Thanks to wonderful Autistic conversations I think I am beginning to understand why I feel so much at home in the ocean. To date I had not connected it to healing from Autistic trauma, but now I see the connection with increasing clarity.

Firstly, that much I knew already, besides the air and remote mountain regions, the ocean is one of the few environments that at least superficially is not shaped by humans. But of course in terms of pollution and pH, and in terms of the growing number of fish farms, this is no longer true.

Secondly, and this is the part I am only fully realising as part of Autistic dialogues, the pace of life in the ocean is much more in tune with a pace that is compatible with humans cognitive capacities and limits than life in human urban environments.

Let me explain:

The universal law of underwater movement

The density of water (800 times higher than air) means that drag is very significant, which means that all living creatures move much slower in water than on land. Also any jerky movements only cost extra energy. Underwater life is about going slow and making smooth movements, or simply staying still, observing the environment with all your senses. You can learn how to do it by observing the fishes around you.

You learn the universal law of movement intuitively. You learn how to not disrupt the flow of life. Any fast movement, and whatever you were curious about has disappeared into a crack in the reef, or is moving away from you with streamlined bodies that are several times faster underwater than any human, fast disappearing beyond your limited horizon of visibility. Moving fast underwater amounts to a violation of a law of nature. You are immediately recognised as a threat.

All you need to do to be part of the life of the ocean is to slow down and follow the universal law of underwater movement.

For me the universal law of underwater movement has become associated with the feeling of being at home. This feeling is reinforced by the taste of salt water. If I have an addiction it is the addiction to being immersed in water and tasting salt water.

I think for Autistic people the universal law of underwater movement acts as the braking assistant/buddy that we so often lack in W.E.I.R.D. human social environments.

The ocean environment has healing properties for Autistic people.

Orientation and proprioception in the ocean

Because the human body consists mostly of water, i.e. has the same density, you don’t notice any difference in blood pressure in your head, no matter which way you are oriented. Any position is just as comfortable as any other.

You are floating in space, completely effortlessly. This only reminds you to literally take it easy, and to go slow, because the high level of drag means that there is absolutely no point in attempting to go fast, especially if you have a SCUBA tank on your back – which weighs nothing, but which slows you down with further drag.

When you are free-diving it is even more important to go slow, because you can go much further/deeper by going slow – attempting to go fast only increases oxygen consumption and limits your range. A corollary of the universal law of underwater movement:

Underwater, less effort lets you travel farther!

Vision and scope of visibility in the ocean

Visibility is often limited to less than 10m, sometimes much less, and at the very best 40 metres. This means the visible world is small.

Brightness and contrasts are rapidly reduced with increasing depth. The world starts to look very different 10m below the surface and beyond. Blue becomes the dominant colour, and even if you look up, the source of light from the surface is very pleasant to look at, never too bright.

Also water tends to feel cooler than air. It is so pleasant to immerse the head under water after having had a migraine. No bright lights, and your head is being cooled from all sides.

Sounds and scope of hearing in the ocean

Sound travels more than four times faster underwater than in air. It means human ears can’t determine where sounds are coming from, but it also means sounds travel over great distances, and you always hear things that are far beyond the sphere of vision.

The underwater world is a world of mysterious sounds that have no origin. You are embedded in the soundscape of the universe. Anything that makes a sound is making its presence felt everywhere at once. Sounds become completely divorced from our sense of space. They simply exist, and it is only by accident, when you visually see something, like a parrot fish picking at the reef, that you can connect specific sounds with a spatial location.

The sounds of the ocean can become familiar like the sounds of a forest. They can underscore the feeling of being home.

Pressure in the ocean

The water pressure at 10m is twice the air pressure at surface level. This means that all the air in all air filled body cavities is compressed to half the volume at a depth of 10m, to one third the volume at 20m, etc. When you are free-diving you feel the compression in your upper chest, and this gives you an intuitive sense of depth that is reinforced by the change in colours around you. When SCUBA diving you breathe air at the same pressure as the surrounding water, then the change in colours is the only indicator of depth.

You can train your Eustachian tubes to open up and equalise the pressure in your ears when diving down, without needing the manual “blowing your nose” assistance.

Furthermore, humans, like all air breathing mammals, have a dive reflex. This means that our heart rate slows down when immersed in water, especially when we are holding our breath. When free-diving you can train yourself to feel your heart rate, and you can use meditation practice, to calm down as much as possible, to maximise your level of comfort and your underwater range.

Again, slowing down allows you to go farther.

Being in the ocean is pure Autistic joy. It is a safe space in the non-human world, it is a space that allows us to recover from the human madness of busyness.

Autistic trauma peer support

In 2022 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.

We invite our Autistic peers (you) to contribute lived experience to the Autistic trauma peer support project, as needed anonymously, so that we can co-create services around the diverse needs of Autistic communities.