Autistic Life, Trauma, and Disability

Photo by Hasin Farhan on Unsplash

Autistic people are anthropologists by birth in a very literal sense. The “feedback” that we get as small children, for example a brick being thrown at me from behind in the playground, being regularly ignored, labelled as weird, too quiet, withdrawn, rude, scary, hypersensitive etc. leaves us no choice but to spend a lot of of time trying to make sense of humans.

Experiences from sensitive autistic children include questioning the purpose of our existence. One autist within my extended family told me that as a 4-year-old he was often asking himself:

“What am I doing on this planet? Why am I here, amongst these people?”

As a small child I never understood the social games that other children were playing. Conversely they did not want to play with someone who played differently. Materially I grew up with many privileges, but I felt like an alien long before my parents moved to Nigeria when I was 4 years old.

In this article I point to a few initiatives and services that I have been involved in developing over the last 30 years, with the objective of reducing autistic trauma, assisting society with critical thinking tools, pushing back against the disabling forces within industrialised society, and helping us to rediscover the language of life. All of these initiatives and services target the social environments that neurodivergent people are exposed to, and they are designed to increase rather than decrease the level of agency and mutual support amongst neurodivergent people.

Trauma

Trauma and autistic lived experience in Western industrialised societies are very hard to separate. Through careful observations autistic children start to understand common human social motivations – and it can be quite devastating and depressing.

Autistic children deal with the trauma in different ways.

I actively avoided most interaction with others my age, because it was obvious that my world had nothing in common with the world of those around me. I considered myself lucky if others left me alone, and I learned to make myself invisible to others in plain sight. I still remember with horror the occasions when my parents met other families with children and enthusiastically prodded me to “play” with the other children. They had no idea of the kind of environment I needed to feel safe. I could not even trust my parents. Too often they surprised me with their absence when I needed support, or with overwhelming social situations, expecting me to conform to bizarre cultural rituals that made no sense to me.

Unless autistic children are able to convey what constitutes a safe environment for them and are given adequate time to spend in safe environments, they are continuously overwhelmed by the expectations of those around them, and they will develop coping mechanisms for their trauma. For those who are able to meet the academic expectations at school, a focus on academic success is a common coping mechanism, and it can be a good tool for avoiding or minimising dehumanising experiences in social contexts.

Unless we learn to give autistic children access to other autistic children and adults as early as possible in their life, and unless we start to unW.E.I.R.D. industrialised society, autistic children will continue to be severely traumatised.

Looking back over more than 50 years of lived experience, I have to conclude that industrialised society has become increasingly normative in many ways. The term “hypernormalisation”, coined in the Soviet era, and transposed into the Western context in an extended documentary by Adam Curtis (2016), is quite appropriate.

I can not imagine the horrors that some autistic children must go through today, when exposed to intensive “early intervention” autistic “conversion therapy”, i.e. 20 to 40 hours of what is known as Applied Behaviour Analysis or Positive Behaviour Support. Autistic children are systematically taught that their needs and feelings don’t matter at all. All that matters are the demands of “therapists” (maybe better “the rapists”), and ambitious parents and teachers who are concerned about “functioning levels” according to a fictitious and irresponsibly simplistic model of “human development” that simply ignores the diversity of human neurocognitive functioning and lived experience.

Please sign the current petition to ask the New Zealand government to investigate the consequences of all forms of conversion therapy, including conversion therapies that target autistic children, which are often branded as Applied Behaviour Analysis (ABA) or Positive Behaviour Support (PBS).

Note: all international support is welcome as well. Those who don’t reside in New Zealand can sign the petition with postcode “0000”. This allows us to easily distinguish the level of local support from international supporters.

You are also invited to attend our series of panel discussions towards a ban of all forms of autistic conversion therapies including ABA related to the petition below.

➜ Register and submit questions for upcoming panel discussions.

Learning

Learning is a two way street. Always. For autistic children the primary direction of social learning is reversed. New discoveries about the world are communicated from children to parents. Autistic children educate their parents about their sensory experiences and about the focus and boundaries of their innate curiosity about the world.

As a small child, in the early 1970s in Nigeria I saw the pollution, slums, and crime in Lagos, in stark contrast to the privileged lives of Western “expats”. In Nigeria “economic growth” and “progress” were fuelled by the interests of Big Oil. I also remember how Western adults at the time, including my parents, talked about what they saw as “uneducated” people. I also saw the way in which Western countries delivered “development aid” and “best practices” – establishing large cattle farms, drilling deeper water wells etc. When it all failed a few years later, it was much easier to blame the locals than to admit to cultural bias, corporate greed, and lack of appreciation of local knowledge and wisdom.

One of the most hilarious anecdotes from my childhood occurred in Islamabad, in 1978, at the height of the Cold War, when I was around 12 years old. I remember the social science teacher of our class, in an International / American school, squirming in his seat, trying to explain to the class, which included two Yugoslav students amongst an international mix and perhaps 10 children of American marines, that “communism is not always bad”.

On another occasion I overheard one of the Yugoslav students complaining to a teacher about being mocked by his Yugoslav peer, who apparently was the son of the ambassador.

I also remember my dad instructing me in the bizarre social protocols to observe when interacting with his colleagues at the West German embassy. At the time I thought that hierarchical forms of organisation must be a peculiar pathology that affects governments and public sector organisations. It was also comical how Western diplomats were being extremely careful never to accidentally interact with diplomats from the other side of the Iron Curtain, because obviously they all had to visit the same local markets and shops.

Much later, in high school in a different country, after three years, I connected with two other neurodivergent students. I was lucky. I am married to one of them.

Autists with several decades of lived experience understand the human species better than most social scientists – especially since the Internet has allowed us to compare notes.

Our society trains children for their role in the competitive arena of “civilised” life. Those who don’t readily submit to the indoctrination programme are deemed dysfunctional. The purpose of many so-called diversity and inclusion initiatives is best described as the desire to assist those who are considered dysfunctional by subjecting them to intensive remedial training and by equipping them with better tools for the competing against the other players in the arena.

If this description sounds like a dystopian society that has perverted evolutionary theory into a life-destroying form of Social Dawinism there is nothing wrong with you. Sarah Fathallah has written an excellent article on the role of ethics in design, which illustrates that design can be nauseating discipline when used as an uncritical tool to promote the interests of transnational corporations and abstract nation states.

S23M, in collaboration with the Design Justice Network and the Autistic Collaboration Trust develops creative thinking practices to address the biggest issues facing coming generations.

Disability

When autistic children become adults, some continue to rely on a laser focus on academic success as a trauma coping mechanism, and other may apply their academic knowledge and empirically won anthropological knowledge about humans in the world of entrepreneurship. The extent to which these coping mechanisms work well for the autist and their social environment depends on the social experiences that are made along the way.

Again, overall I was lucky. Beyond school I gravitated to education and work environments where I found many autistic peers – for the first time in my life. Nevertheless, in a world dominated by neuronormative people I was instinctively repelled by the social games needed to “succeed” in the corporate world, and even just surviving in that world took a toll on my health.

After 12 years of freelancing and employment I could take it no more. Together with a friend and colleague I co-founded an employee owned company, which allowed us to decide what services and products to offer, and which organisations to engage with – and which ones to stay clear of.

Accommodating the sensory needs and learning differences of neurodivergent people is not enough. For many autistic people employment in organisations with conventional structures (formal and informal social power structures that stifle organisational learning and over-power any ethical considerations) is not a viable / survivable option. Industrialised societies systematically disable neurodivergent people with an intact moral compass.

The journey towards creating good company was not an easy one. It was only possible with the mutual support and trust amongst neurodivergent colleagues, friends, and family members. In our case nurturing a NeurodiVenture into existence that allowed neurodivergent people to survive and at times thrive was a journey that took over 15 years.

The cult of the profit-oriented start-up with external financial investors who are keen to extract a profit and ignore social and environmental externalities (greed) is as much disabling for hypersensitive neurodivergent people as the institutionalised collective learning disability within hierarchical organisations (cultural inertia).

If you are ready to leave behind the exploitative social games of busyness as usual, and are interested in establishing a neurodiversity friendly employee owned company, the open source NeurodiVenture model may be a useful starting point. The number of NeurodiVentures is growing.

Life

Industrialised society is based on the metaphor of society as a factory and on the metaphor of people as machines. Our laws and social norms have been shaped by these metaphors to a far greater extent than most people realise.

The factory metaphor consistently brushes the diversity of life under the carpet. That is the whole purpose of the metaphor. To make life appear to conform to fictitious economic doctrines, and make human behaviour appear to be predictable with mathematical precision.

Anyone who studies life, instead of abstract economic theories that are biased towards those with access to the most imaginary abstract tokens (financial capital), comes to a very different conclusions about the purpose of life.

“Life creates conditions conducive to life.”Janine Benyus

To wake industrialised societies up from the collective delusion of life conceived as economic transactions, we need to rediscover and enact the language of life.

Towards this end the community powered Employer Psychological Safety and Cultural Safety Service coordinated by the Autistic Collaboration Trust and the Design Justice Network constitutes a tool for organisations to establish a baseline level of safety for all employees, and the Creative Collaboration service offered by S23M provides organisations with training wheels for incrementally extending the scope of psychological safety and putting it to good use (creating good company).

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5 Responses

  1. I relate to so much of what you wrote here, especially about unemployment. By my nature, I cannot work well under a boss. I think to non-autistic people this sounds like I simply don’t like being told what to do, but every single boss I’ve ever had has either ordered me to do something I considered unethical (like telling a Black customer alleging racial bias in some of our products that, essentially, we had investigated ourselves and cleared ourselves of racism) or railroaded me into a job role I didn’t want and was ill-suited to perform (“I know you have phone anxiety, but there’s no one else who wants to answer phones, so this is your job now”). I cannot tolerate either of those things on a sustained basis without burning out spectacularly. I was nearly hospitalized for this reason in my early 20s. I’m not sure what to do about it other than work for myself.

  2. The examples you provide around employment illustrate the toxic hypernormativity of industrialised society. It is assumed that the so-called invisible hand of the market is a harmless or even beneficial force. Nothing could be further from the truth. In our society everything is commoditised. Our role as “citizen” in a W.E.I.R.D. democracy is largely reduced to the ability to press a button or tick a box once every few years, as “consumers” our role is reduced to selecting from, and ideally purchasing as much as possible from, a set of products curated by corporations, and as “employees” our role is reduced to conforming to preconceived job (cog) descriptions within the corporate or bureaucratic machine and to taking orders from a so-called authority or superior. In this system social power is the privilege of not needing to learn. It has nothing to do with collaboration towards a common goal or meeting the needs of a particular community. The system is so dehumanising that it hurts to even think about it, yet our eduction system is designed to present it all as the best possible social operating system that has ever been conceived.

    Since the Cold War empires have increasingly shifted their focus from overt conventional war to economic warfare and psychological warfare. The growing economic power imbalance between the empires of the “developed” world and “less developed” nation states has significantly reduced the need for large scale direct military interventions to maintain imperial power structures. The effects of economic warfare are conveniently indirect but very effective and brutal. I have outlined some of the toxic feedback loops in this system in this article https://jornbettin.com/2020/08/09/a-language-for-catalysing-cultural-evolution/.

  3. Re: “as a 4-year-old he was often asking himself: “What am I doing on this planet? Why am I here, amongst these people?”” My earliest memories of wondering that kind of thing are whatever age I was in 5th grade.
    Looking at that, “I can not imagine the horrors that some autistic children must go through today, when exposed to intensive “early intervention” autistic “conversion therapy””, maybe growing up in 1960s and 1970s where there was Nothing for autistic children like me, I’m thinking I got lucky, sometimes nothing IS better than something.

  4. “The factory metaphor consistently brushes the diversity of life under the carpet. That is the whole purpose of the metaphor. To make life appear to conform to fictitious economic doctrines, and make human behaviour appear to be predictable with mathematical precision.”

    Well said. In that factory/machine approach, so much of the wonderful diversity of life—both human and environmental—isn’t admired or appreciated like it deserves to be, but sadly gets treated like a “problem“ to be solved or eliminated.

    Those of us whose neurodiversity has been deemed part of the “problem to be solved” suffer a lot. It hurts to be seen this way; and it hurts to have something to offer that isn’t accepted.

    As someone just starting to learn about his autism later in life (thanks, Jorn, to your recent post on LocalFutures.org), it’s great to find that there’s a strong neurodiverse community offering a clear alternative to the anti-diversity factory mindset.

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