Co-creating Autistic / ND communities

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

– Ulku Mazlum

By Jorn Bettin & 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 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.

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2 Responses

  1. Re: “The commercial profit oriented pharmaceutical approach in Western medicine has a lot to answer for.”, now there is an example of truth on the internet.

  2. The ethics on social power games + not hurting each other define out of validity the whole easy-purge militant scene that turns on folks for using the latest in an impractically growing list of forbidden words. They properly define as an abuser anyone evil enough to say that “rejecting one can include many others”, so we will be kept safe from having anyone like that stand for office in the scene like at 2018 Autscape.

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