A communal definition of autism

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

Members of the autism civil rights movement adopt a position of neurodiversity that encompasses a kaleidoscope of identities that intersects with the LGBTQIA+ kaleidoscope by recognising autistic traits as natural variations of cognition, motivations, and patterns of behaviour within the human species.

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.

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 – which may forever remain elusive, the best way to describe autism is in terms of first hand experience of autistic cognition and autistic motivations. 

The following definition of autism reflects a collective effort of the autistic community.  Focusing on common first hand experiences leads to a relatively compact description that can easily be validated by autistic readers, and it also avoids getting lost in endless lists of externally observable behaviours.  Lists of external diagnostic criteria offer very little insight into underlying autistic sensory experiences and autistic motivations.

The purpose of jointly developing a communal definition:

  1. Full acknowledgement of the relevance of first-hand perspectives and of the internal states and needs of autistic people, offering useful explanations to people who are wondering whether they are autistic
  2. Allowing people to discover their autistic identity in a safe environment that introduces them to autistic peers, rather than to the negative projections of non-autistic people
  3. Enabling the autistic community to push back on behaviourist pseudo-science that is full of invalid assumptions about the internal states and life goals of autistic people, and educating the public about the myths that stand in the way of genuine appreciation of neurodiversity

The current version of the definition has been extracted from this call for action, which in turn reflects observations made by a range autistic people from all corners of the planet in online conversations about the core of autistic experience.

What is autism?

autistic

Version 1.01 (15 October 2019)

All autistic people 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.

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.

Many autistic people 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.

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 in related autistic inertia and perseverance.

Autistic inertia is similar to Newton’s inertia, in that not only do autistic people 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.

Autistic neurology shapes the human experience of the world across multiple social dimensions, including social motivations, social interactions, the way of developing trust, and the way of making friends.

The autistic experience involves the following set of cultural artefacts

  • Language(s), including various idiosyncratic forms of communication, but largely excluding an understanding and appreciation of abstract cultural status symbols
  • Written rules for interaction, in particular in relation to interacting with the physical and biological world, but largely ignoring rules in relation to status symbols
  • Tools of all kinds, especially tools relating to personal areas of deep expertise
  • Knowledge related to the making and use of tools, often to an unusually deep level

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, autistic people are unable to maintain hidden agendas, which makes them vulnerable to exploitation in competitive social environments.

Autistic social interactions

Autistic collaboration involves sharing of knowledge and working towards a shared goal of generating new levels of knowledge and understanding.  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.  The 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

The autistic way of developing trust

Is based on experienced domain-specific competence.  Autistic people:

  • (when young) assume everyone is telling the truth;
  • (when older) can become very cynical;
  • can be fooled by people who appear to be logical but who have no scruples fabricating evidence;
  • are slow in learning the cultural significance of social cues, and can’t reliably read social cues in an environment of sensory overload.

This article on autistic collaboration and the NeurodiVenture operating model provide further details on the ways in which autistic people develop trusted relationships.

The autistic way of making friends

To construct trusted relationships and friendships, autistic people apply an explicit goal oriented approach:

  1. Search for people with shared interests, usually online
  2. Confirm a shared area of interest
  3. Start having fun by openly sharing knowledge, personal experiences, and related gaps of knowledge and questions
  4. Explore what can be achieved with joint capabilities and capacities
  5. Embark on significant joint projects (examples) to have more fun

Social energy management

In all social contexts that 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 autistic people attempt to blend in (by masking) it is to avoid suffering the consequences of non-conformance – and not to gain or maintain social status.

Autistic people 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 autistic people are not expected to continuously conform to the social expectations of the surrounding culture.

This definition is an autistic community project

Autistic readers are encouraged to validate this definition against their own experience and to point out any aspects that

  • don’t seem familiar, and which therefore should perhaps not be considered part of the core of autism,
  • or that seem to be missing from the definition, but refer to experiences made by the majority of autistic people, and therefore should be added to the definition.

You are invited to submit feedback and specific suggestions for improvement below. This definition can also be validated against the growing number of individual experiences that are collected and published as part of the Mosaic of Autistic Lenses project.  Please consider contributing to this important project. 

It would be fantastic if the Mosaic of Autistic Lenses project could over time develop into a repository of several hundred (and possibly many more) autistic lenses.  The Mosaic of Autistic Lenses project has the potential to develop into a rich source of valuable information for the autistic community, in particular for young people who are in the process of finding their way into the adult autistic community, and for researchers interested in developing a deeper understanding.

An autism test by autistic people for autistic people

Mandel_spiral_800

Instead of a diagnosis, the following test tends to deliver very reliable results.  It does not cost any money, it only takes some time.  For anyone who relates to the above description of autism, this investment of time may be the most valuable investment imaginable:

If you are wondering whether you identify as autistic, spend time amongst autistic people, online and offline.  If you notice you relate to these people much better than to others, if they make you feel safe, and if they understand you, you have arrived.

Suggestions for improvement

Please use the following form to submit specific suggestions for replacement, addition, or deletion of text segments within this communal definition of autism. If you would like to discuss ideas for improvement, but don’t yet have specific words in mind, please provide an email address to enable a dialogue, to allow us to jointly arrive at a concrete suggestion for improvement.

On a monthly basis, all suggestions received will be posted for review and endorsement by the Autistic Community Loomio group, which you are invited to join, using a transparent and democratic voting process.

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