Taking ownership of the label

Autism is a genetically-based human neurological variant that can not be understood without the social model of disability.

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Members of the autism civil rights movement adopt a position of neurodiversity that extends the LGBTQIA+ kaleidoscope of identities by recognising autistic traits as natural variations of cognition, motivations, and patterns of behaviour within the human species. Major goals of the autism rights movement include the following:

  1. Liberation from the socially constructed pathology paradigm
  2. Acceptance of autistic patterns of behaviours
  3. Education that teaches neurotypical individuals about autistic cognition and motivations, including communication skills for interacting with autistic peers; as well as education that teaches autistic individuals about typical cognition and motivations, including communication skills for interacting with neurotypical peers
  4. Creation of social networks, events, and organisations that allow autistic people to collaborate and socialise on their own terms
  5. Recognition of the autistic community as a minority group

In the absence of a comprehensive neurological and genetic description, the best way to describe the essence of autism is in terms of first hand experience of autistic cognition and autistic motivations. The highlighted parts of this article focus on the core of autistic experience rather than on other features that are not unique to autistic experience and are therefore better described separately.

Autistic people must take ownership of the label in the same way that other minorities describe their experience and define their identity. Pathologisation of autism is a social power game that removes agency from autistic people. Our suicide and mental health statistics are the result of discrimination and not a “feature” of autism.

All autists experience the human social world significantly different from typical individuals. The difference in autistic social cognition is best described in terms of a heightened level of conscious processing of raw information signals from the environment, and an absence or a significantly reduced level of subconscious filtering of social information.

The best way for non-autistic people to understand lack of social filtering is by analogy. Before a human child learns to read letters and words, it perceives written text in terms of complex shapes and patterns. A young child may be intrigued by all the commonalities and variabilities between shapes, and may easily perceive the differences between two “i”s in different fonts to be greater than the difference between “i” and “l” in one specific font.

As a child learns the alphabet, it develops subconscious cognitive filters to recognise specific characters and to associate them with corresponding sounds, without having to consciously decode and map from perceived shapes to familiar sounds. As the child then progressively learns to read, the development of subconscious cognitive filters for written language progresses to the point where familiar words and even common sequences of words are mapped onto familiar sounds and corresponding mental representations (“mental models”) without any conscious effort.

Typical children develop similar subconscious filters for decoding non-verbal signals from the social world.

Autistic children tend to take longer to learn how to decode non-verbal signals from the social world, in particular signals related to abstract cultural concepts related to the negotiation of social status.

It is a common misconception that autistic people do not register social signals such as facial gestures. We do see all the movements, but we must consciously process most of the inputs instead of subconsciously mapping them to corresponding meanings.

Autists are easily overwhelmed in social situations, and may need to be explicitly taught the purpose of specific social gestures and rituals. Once specific social signals have been understood, autists can decode them with conscious effort. The cognitive load can be compared to attempting to read a book when holding up the book close to the sun, or to attempting to understand someone over the phone when the sound is so loud it is distorted.

Given the increased cognitive load in social situations, autists have to choose between either focusing on a literal interpretation of the verbal content of a conversation or on attempting to decode the non-verbal social context of the conversation. In many cases attempting to do both at once leads to the worst possible outcome. Focusing on the verbal content is by far the easiest option from the autistic perspective.

Eye contact is experienced as an unneeded and sometimes stressful distraction. Focusing on the mouth of the person speaking tends to be a good compromise, leading to the appearance of maintaining eye contact whilst further assisting the decoding of the verbal content, especially in noisy environments.

Many autists are also hyper- and/or hypo-sensitive to certain sensory inputs from the physical environment. This further complicates social communication in noisy and distracting environments. With respect to autistic sensory sensitivity there are huge differences between autists. Some autists may be bothered or impaired by a broad range of different stimuli, whereas others are only impacted by very specific stimuli.

Some autists remain non-verbal, and others may become selectively mute in specific situations, but this in no way is any indication of the level to which the individual is able to process and understand incoming information, or an indication of intellectual impairment. Self-reflection and thinking is much older than human language.

Individually unique cognitive autistic lenses result in individually unique usage patterns of the human brain, and often in unique levels of expertise and creativity within specific domains of interest and related autistic inertia and perseverance.

Autistic inertia is similar to Newton’s inertia, in that not only do autists have difficulty starting things, but they also have difficulty in stopping things. Inertia can allow autists to hyperfocus for long periods of time, but it also manifests as a feeling of paralysis and a severe loss of energy when needing to switch from one task to the next.

Further related factors are the difficulty autists have devoting attention to tasks that are outside the range of personal interests and getting enough sleep when in hyperfocus mode. It is common for autists to work on ideas that others would consider a waste of time or impossible, and not uncommon for them to succeed.

“The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness.”Nick Walker

“You see things that others don’t; you miss things that others see. Intricate detail and social signals are given different priorities in the autistic brain. I have an insatiable passion for knowledge, understanding and ‘projects’ – I’m not called ‘the Oracle’ for nothing.”Sarah Hendrickx

Differences in the experience of being human

The autistic experience involves the following set of cultural artefacts:

  1. Language(s), including various idiosyncratic forms of communication
  2. Written rules for interaction, in particular in relation to interacting with the physical and biological world
  3. Tools of all kinds
  4. Knowledge related to the making and use of tools

In contrast, the neurotypical experience involves the following set of cultural artefacts:

  1. Language(s), including an understanding and appreciation of abstract cultural status symbols
  2. Written and unwritten rules for social interaction, in particular in relation to status symbols
  3. Tools of all kinds
  4. Knowledge related to the making and use of tools

Differences in social motivation and experience

The autistic mind is motivated by understanding how some aspects of the world work, whereas the neurotypical mind is significantly motivated by compliance with cultural expectations. These differences in motivations exist alongside the universal innate human motivation to assist others regardless of external rewards.

Autistic social motivations:

  • Acceptance – acknowledgement as a living human with basic human needs, in particular love, access to food and shelter, and autonomy over own mind and body, as well as unique needs
  • Truth – as it appears through the lens of our current level of human scientific understanding
  • Recognition – attribution of creative agency

Autistic social motivations are intrinsic and navigate the tension between mutual assistance and the acquisition of new levels of knowledge and understanding, including access to specific objects of study and any required tools.

In summary, autists don’t have hidden agendas, which makes them vulnerable to exploitation in competitive social environments.

Neurotypical social motivations:

  • Acceptance – acknowledgement as a living human with basic human needs and cultural needs
  • Recognition – approval for compliance with cultural expectations
  • Truth – as it appears through the lens of human cultures

Neurotypical social motivations navigate the tension between mutual assistance and culturally motivated behaviour, especially the attainment of extrinsic cultural rewards, including money and other desirable concrete and abstract symbols of status. Star Ford has written an excellent book on this topic.

A lot of the misunderstandings and frustrations in collaboration between autists and neurotypical people can be explained in terms of different conceptions of acceptance, truth, and recognition.

“On the plus side, autism brings me a complete lack of regard for status, possessions, hidden agendas, point scoring and spite along with a deep, emotional, sensory connection to nature, animals and music.”Sarah Hendrickx

“I always used to say: There are two types of people in the world. Those who would never let the pursuit of social acceptance get in the way of the pursuit of Truth. And those who would never let the pursuit of Truth get in the way of the pursuit of social acceptance.”Judy Singer

“The motivational differences are not immediately noticeable from the outside. They become obvious when we think about how we develop trust and how we make friends compared to what is considered normal by the rest of society.”Jorn Bettin

Differences in ways of being social

Autistic collaboration involves sharing of knowledge and working towards a shared goal of generating new levels of knowledge and understanding. The individual innate moral compass mediates the tension between the desire to assist others vs the desire learn about the world.

  • These inclinations are reflected in the cultural transmission of new discoveries from children to parents
  • Education of parents by the children focuses on teaching about the focus and boundaries of individual areas of interest
  • Sharing of knowledge and asking probing questions is seen as a “natural” human behaviour
  • Adolescence is a period of intensive knowledge acquisition, where individual areas of interests are explored in great depth, and where in the absence of autistic peers with compatible interests new knowledge is often shared with parents

In contrast neurotypical collaboration involves competition at all levels of scale according to culturally defined rules, which mediate the tension between the desire to assist others vs the desire to gain or maintain social status symbols.

  • These inclinations are reflected in the cultural transmission of boundaries of acceptable behaviour from parents to children
  • Education of children by the parents focuses on teaching the cultural rules and acceptable boundaries
  • Ego and self-promotion is seen as a “natural” human behaviour
  • Adolescence is a period of socialisation, where the cultural rules transmitted by parents are incrementally replaced by the cultural rules encountered in peer groups

“The goal of understanding must not be to punish or reform the child. It must be to learn to love purely, and to nurture that precious, unique, individual spirit hiding within the autistic person. The person must be allowed to remain autistic. It is born into him, and is lifelong. There are no cures, nor should there be. I believe that is why autism has eluded science and baffled physicians. I believe autism is a marvellous occurrence of nature, not a tragic example of the human mind gone wrong. In many cases, autism also can be a kind of genius undiscovered. Autistic people are worth getting to know They are valuable just as they are. They can display innovative thinking.”Jasmine Lee O’Neill

Differences in the way of developing trust

The autistic way

  1. Based on experienced 
domain-specific competence
  2. When young assumes everyone is telling the truth
  3. When older can become very cynical
  4. Can be fooled by people who appear to be logical but who have no scruples fabricating evidence
  5. Is slow in learning to read social cues, and can’t do so in an environment of sensory overload

The neurotypical way

  1. Based on socially transmitted reputation
  2. Quickly learns that deception is part of the social “game”
  3. Is proficient in the social “game”, and may even enjoy it
  4. Relies on social [non verbal] cues to detect deception
  5. Can be fooled by fake social cues, even if these are in conflict with the evidence at hand

Depending on the personal experiences made with their family and cultural environment, some autists choose to completely withdraw from society, like this island recluse.

Differences in the way of making friends

The autistic way

  1. Search for people with shared interests, usually online
  2. Confirm a shared interest
  3. Start having fun by knowledge sharing
  4. Explore what can be achieved with joint capabilities and capacities
  5. Embark on significant joint projects to have more fun

The neurotypical way

  1. Approach people who look attractive or have a high social reputation, 
often in a group setting
  2. Use smalltalk to start a conversation
  3. If an emotional bond is established, spend more time together and do various things together
  4. Spending time together is more important than what the time is spent on

Evolutionary benefits of autistic cognition

Technically speaking, in the language of evolutionary biology, human traits are the manifestation of multi-level group selection in human societies, resulting in a form of gene-cultural co-evolution where culture plays a very significant role.

Depending on the specific culture an individual grows up in, the competitive aspect of “collaboration” may either be significantly reinforced (capitalism, older money based societies, some religions) or weakened (hunter gatherer societies, some religions).

Autistic human traits are the glue that enables new knowledge acquisition to be scaled to the level of groups and groups of groups, providing cultures with the ability to adapt in times of rapid environmental changes.

During times when the environment is experienced as highly stable, autistic traits are likely to be suppressed by the surrounding culture; whereas when the environment is experienced as highly dynamic, autistic traits will be appreciated as a source of essential new knowledge.

The limits of labels

To be clear, neurotypical and autistic are coarse labels. People can be more or less autistic, LGBTQ, etc. – but the more an individual experiences the world through an autistic cognitive lens, the less that person is going to be influenced by the surrounding culture and related subconscious social filters. And just as many people will clearly identify with one gender identity, many people will clearly identify as either being autistic or not. Depending on how autism friendly the surrounding culture is, an ambivalent individual with neurotypical and autistic traits may ultimately gravitate towards a culturally defined identity or towards a clearly autistic identity.

Those who identify as autistic operate on an internal moral compass that does not place much if any value on social status and related cultural rules, but this in no way means that autistic people do not have empathy or are not interested in interacting with other people.

Furthermore, given the strong influence of culture on typical people, it makes little sense to talk about neurotypical behaviour, and it makes much more sense to think and talk about culturally acceptable behavioural patterns – which vary from context to context.

In all social contexts, which relate to one or more of the group identities of neurotypical people, autistic people will be identifiable by their atypical behavioural patterns, and by the level of exhaustion they suffer by attempting to blend in to the local social context.

When autists attempt to blend in it is to avoid suffering the consequences of non-conformance – and not to gain or maintain social status.

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The social model of disability

What happens if a society forces people to either negate their autistic traits or to identify with a pathologising description of autism? The results are predictable:

  1. People who lack empathy increasingly gain influence and are able to shape the social status symbols and related rules of social interaction, leading to an increasingly competitive culture that overrides the innate human tendency towards mutual aid and cooperation.
  2. As society becomes more influenced by socially engineered wants and competitive games rather than by basic human needs, autistic traits become an obstacle to social acceptance, and the incidence of mental health problems and suicides within the population rises.
  3. As the exclusive pursuit of status symbols becomes normalised, the more competitive and less sympathetic society becomes towards autists and other neuro-minorities, who feel compelled to point out some of the symptoms of the collective social delusion.
  4. More and more people are systematically disabled by hyper-competitive social games, and end up being pushed towards a pathologising autism diagnosis.
  5. Rising autism diagnoses lead to the growth of an autism industry that caters more for the cultural expectations of parents than the needs and well-being of autistic people on the margins of society.

 

In earlier times autism was, and in less competitive cultures autism is, not necessarily pathologised. There is evidence that autists tended to occupy valuable functions in society as expert tool makers, healers, navigators, etc.

How can a society recover from toxic collective delusions?

Cultural factors, the diversity of autistic interests and the atypical ways of friendship and trust development amongst autistic people have immediate implications for optimising collaboration within and between teams.

Autists are the most productive if allowed to self-organise in teams with a clear autistic / neurodivergent majority, such that interactions with typical teams are limited to the mutual exchange of knowledge and tools in accordance with the agreed purpose of the team, and such that autists are not expected to continuously conform to the social expectations of the surrounding culture.

The lack of social competition in predominantly neurodivergent teams affords such teams a distinct collaborative edge, especially when compared against typical teams within a highly competitive socioeconomic context. Neurodivergent teams are uniquely positioned to identify spurious cultural complexity within organisational systems and interaction patterns.

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This creates interesting learning opportunities for organisations that are plagued by counter-productive in-group competition. In many cases the explicit values of an organisation and the implicit social norms within an organisation encourage rather than discourage in-group competition – resulting in economic inefficiency, poor quality of service, low levels of staff engagement, and high levels of bullying. Establishing one or more predominantly neurodivergent teams can act as a catalyst for cultural change in neighbouring teams.

Call for action

Two people deserve special mention as pioneers on the path towards de-pathologising autism: Judy Singer for coining the term neurodiversity in 1998, and Tony Attwood for his suggestion to reframe autistic traits in positive and encouraging terms in 1999. However, the last 20 years have seen the rise of an “autism epidemic” and a profitable “autism industry”. Even Tony Attwood could not resist the business opportunity. Social progress in relation to autistic rights is overdue.

First steps towards ending the implicit and explicit discrimination against autists:

  1. Full recognition of the evolutionary value of autistic cognitive lenses, which can only be achieved if autists take ownership of the label. This article offers a non-pathologising definition from an autistic perspective.
  2. All cultures that claim to be autism friendly must provide adequate physical spaces that constitute a safe environment for autistic activities, including public spaces that provide protection from sensory overload.
  3. Governments must be encouraged to fund autism acceptance campaigns led by the autistic community, to educate the public about the social model of disability, to counteract the ill-informed and dangerous stereotypes that are associated with autism, and to position the autistic community as the primary source of knowledge about autism.
  4. Governments must stop funding research towards “cures” and “therapies” for autism, and must be encouraged to fund:
    • Educational programmes for non-autistic parents of autistic children
    • A  liaison function between parents and the autistic community
  5. Organisations claiming to be supportive of neurodiversity must shift from a pursuit of a competitive edge to the pursuit of a collaborative edge. Recommended steps include:
    • Abolishment of all forms of individual performance reviews as advocated by W E Deming more than 30 years ago, to establish an environment that does not encourage in-group competition
    • Establishment of teams with a clear autistic / neurodivergent majority, to prompt the development of specific collaborative practices that are aligned with the purpose of the organisation

“We probably sound militant and aggressive to a person who has not experienced the lives that we have. I was told the other day that telling neurotypical people what they are doing wrong regarding autistic people is hypocritical. That we should all be loving each other and holding hands for a better life for everyone. My response:

  • Hypocrisy would be autistic people locking neurotypicals up in mental institutions.
  • Hypocrisy would be autistic people looking for a cure for neurotypicalism.
  • Hypocrisy would be autistics neurologically training neurotypicals to change their personalities and physical manifestations to make us feel better.

7 thoughts on “Taking ownership of the label

  1. I would agree entirely with what has been put forward. There may be some blurring of the lines initially while there is a resetting of the framework, so we must all be aware of this and the possible mis-reading or mis-judging of individual actions or motivations until an established set of guidelines is in place. We cannot ever afford to inadvertently alienate a fellow autist by mistake as we are most sensitive to rejection or perceived rejection/accusation, so our first instinct will be to run in the other direction and not risk a second afront, however, we must still move forward positively to encourage greater inter-autist awareness and fund and establish means and methods to attract such creatures as ourselves who mostly move alone though life as it is currently structured. It may be advisable while this transitional period is in motion, that pre-established group practice and flexible “examination” processes be used in order to minimise selection for the “wrong camp” while identifiying autists who are safe, from autists damaged by socio induction processes who may then have developed damaging non autist mimicry habits for survival. It may do well also to be aware that while non competetive internal operations are desired, that a practice of self examination and peer examination should also be carried out to find those whos skill levels or knowledge levels are at prime for tasks to be performed within and on behalf of the collective or collaboration. There has to be a system wherein all are in accord with roles ‘interchanging’ with the progress of establishing a desired outcome and that lead or cohesivness fostering positions are chosen based on task capability. This could be by the group tasked on the day or by an accepted luminary or group of luminaries familiar with the subject overall. I was told by one such luminary that “trying to get Aspergers together on any one task was like herding cats”;he stated this was because on the whole, most single Aspergers or autists are by necessity ‘self sufficient’; but therein lays the easiest way in which to marginalise the individual and diminish to remove those rights of ownership we are striving to re-establish. We lost them from the point we refused to collaborate on what was most valuable to us as an individual. It should be pointed out in this discussion that non autists (Governments in particular) are also consumate procrastinators when it comes to enacting on behalf of lesser social beings such as ourselves, so it must be recognised and accepted now, that we are the only ones who will provide what we need in the most timely manner. It is up to us to fund and build safe autism friendly spaces. We have to stop seeking non autist permission and act on our own behalfs.

    • If I understand correctly, you are pointing to an important difference in the way autists develop trust and relationships. In contrast to the neurotypical desire to join abstract group identities of various kinds (https://ciic.s23m.com/2018/06/03/drop-the-mask-to-create-collaborative-edges/) and to make broad assumptions about trustworthiness based on group identity or “cultural fit”, we develop our social environment in terms of distinct trusted relationships with specific individuals (https://autcollab.org/2018/04/05/what-society-can-learn-from-autistic-culture/).

      Abstract group identities equip the neurotypical world with a tool for othering (discrimination) and for establishing social systems that operate on social status hierarchies. Autistic group identities are groups of size two (relationships between two individuals), and we can only maintain a limited number of these. I care a lot about the specific people who I extend trust to and expect them to do the same in return. This sets us up for disappointments in the neurotypical world.

      The differences in establishing trust and relationships make it very hard for us to come up with unified conception of autism. We are acutely aware of all the individual differences between people, and it is exactly this that I believe points to the core of autistic experience. If we partition humans into (a) those who belong to one or more abstract group identities with more than two people and (b) those who either belong to no group or only to groups of two people (= relationships between two individuals), I would suggest that the first group represents the neurotypical population and that the second group represents the autistic population.

      If autists come together in a “group” of more than two people, it is to work towards a shared goal, and not simply to “hang out” and certainly not to compete with each other as part of some kind of social hierarchy. I would suggest that the resulting collaboration or team does not have a “group identity” that neurotypical people would identify as such. Hence the stereotype that we are bad at teamwork or collaboration [according to typical rules of engagement]. Autistic “group identity” is created via the autistic ways of developing trust and friendship, and this leads to group level behaviour that is quite different from group level behaviour in neurotypical teams.

      The autistic way of creating relationships and collaboration results in non-hierarchical competency networks (https://autcollab.files.wordpress.com/2018/04/competency-networks.pdf). In order to scale autistic collaborations, we need to identify underlying principles for coordinating activities within competency networks, which differ significantly from the principles for coordinating activities within traditional hierarchical organisations. There are many different ways of collaborating in the absence of social hierarchies. The S23M operating model that I am deeply familiar with is just one example (https://autcollab.files.wordpress.com/2018/04/s23m-operating-model-and-backbone5.pdf).

  2. This was very informative and thought provoking, my granddaughter is autistic and I am not. Ok we are all different but we are all human, do human rights only cover NTs like myself. Many autistic advocates and parents of autistic children, are hiding, or perhaps the merry go round of inadequate schooling, and lack of information “by so called professional services ” determine whether our ‘wonderful autistic children’ will ever be able to be catered for. Low lights, quieter surroundings, accepting stimming, and understanding when autistic children are ‘overwhelmed.’ I am not a teacher , but “i understand why these basic principles, should be used in all schools.” This lack of basic care is a disgrace, my granddaughter is autistic and hasn’t been able to attend school in two years. Why are we so willing to let the next generation down again, how long does it take to see the damage. Perhaps more suicidal autistic children “masking who they are.” Mabe then someone will address the ‘negligence.’ I liken it to a junction, on a road. No one killed, no traffic lights needed. Why do autistic children have to suffer suicidal thoughts and many deaths, before the red lights come on.

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