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.
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:
- Our internal experience and external behaviour is shaped by a mind-boggling number of factors.
- A large number of biological and neurological factors interact in complex ways that are impossible to disentangle.
- 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.
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.
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.
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.
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?
- 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.
- 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.
- 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.
- I’m at least as smart as they are. I know myself extremely well. I also understand their jargon.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- Recognising my own diagnosis, confirmed in part by their peers.
- 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.
- 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.
- 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!
- 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.
- 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?
- 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.
- 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.
- 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.
- 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.
- 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.
- – Concerns being dismissed
– Rushed through appointments
– Not receiving accommodation letter to work from home despite being in burnout
- 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.