A communal definition of autism8 min read

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 cognition 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.

Jorn Bettin

Knowledge archaeologist by day and neurodivergent anthropologist by night at S23M
The more we help each other to question in ways we otherwise wouldn’t – and correspondingly discover new insights about the world and ourselves, the more we are able to learn from each other, and the more we start to understand each other. The gift that we all bring to the world is the (re)generative potential of all the trusted relationships that we co-create.

19 Comments

  1. a giant everything-in-the-pot approach that is cumbersome in this form and has zero explanatory power – replacing a concise and faulty description with an oversized but much less faulty description…  is still just description.  there are better, more concise, more encompassing, and more explanatory “definitions” out there and have been for a while.

    1. Author

      The communal definition distils common aspects of the autistic experience of the world from a multitude of autistic perspectives, at a level of abstraction that many autistic people can relate to.  A more compact definition can easily become too abstract to be relatable or runs the risk of leaving out very common experiences.  A more comprehensive definition runs the risk of becoming a long list of concrete individual experiences that only few (if any) people can relate to, potentially leaving people wondering if they are actually autistic if their personal experience does not “tick all the boxes”.

      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 and supportive 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

      Websites like The Aspergian, the Mosaic of Autistic Lenses project referenced above, and many other sources of personal autistic experiences complement and underpin the communal definition.  The definition is an ongoing community project, an example of autistic collaboration.  I would encourage the use of online consensus building tools like Loomio to incorporate proposals to add or remove specific elements from the communal definition, based on a transparent and iterative consensus building process.

  2. FFS yes.
    Thank you for this.
    We all have difficulty in various places so expect a few comments.

  3. This is fantastic.  Thank you so much.  It’s great to see a description of autism from an autistic person’s point of view – our preferences, our experiences etc.  I hope this is used as a basis for research on how to improve mental health for the autistic community.

  4. I’m concerned about the phrasing of this definition’s relationship to the LGBTQIA+ community.  As a queer autistic, I recognize parallel experiences between those, and an overlap of some social traits, but I don’t recognize autism as inherently queer.  That is to say, queerness is an identity spectrum, and many autistics embrace queerness, but being autistic and being queer are not mutually inclusive.  People can be autistic and queer; they can also be autistic and not queer.  Autistics tend to be less invested in social structures that uphold heteronormativity and therefore more willing to express a queer identity, but you aren’t automatically queer because you are autistic.  Your definition seems to be claiming a space in the queer community that does not belong to autistics or to the neurodiversity movement.

    Your list of “autistic cultural artifacts,” is a list of cultural artifacts common across neurotypes and cultures; it’s not specific to autism or autistic people.  There needs to be either more explanation of how these traits are expressed differently for autistics than for allistic people and cultures, or there needs to be an expansion of the list to include material that is actually unique to autistic culture.

    Your list of steps for “how autistics develop trust” doesn’t discuss how trust is developed at all; it discusses ways in which autistics struggle with developing trusting relationships but doesn’t offer any insight into concrete solutions to the issues listed.  Transitioning from that list into “How autistics make friends” is confusing, because again, I feel like your list doesn’t really describe the process of forming a relationship based on trust.  It describes the early stages of seeking and locating individuals who might be friends based on a shared interest.  In my experience, this process is often a loop between steps one and two, because it’s difficult to connect past a superficial level of “shared interest,” which is not what I want in a friendship.  Friendships I value are based on the ability of both parties to share their perspectives and experiences, hold space for one another, and listen when the other party needs support or a sounding board.  Relationships based on “having fun with shared projects” would be in a category of “acquaintance” or “collaborative partner” rather than “friend.”  One may become the other over time, but they’re separate processes that aren’t addressed adequately here.

    1. Author

      Thanks for your feedback. 

      The phrasing of the relationship to the LGBTQIA+ community has been developed in collaboration with input from a few queer people.  There are queer people in my immediate family.  If you have a better way of phrasing the relationship please let me know.  All constructive feedback is appreciated.

      Yes, the listed categories cultural artefacts are common across neurotypes and cultures.  The difference is subtle and made explicit in the original call for action https://autcollab.org/2018/06/30/taking-ownership-of-the-label/.

      “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”

      For more details on the ways in which autistic people develop trusted relationships and friendships, and the differences to typical ways of developing trusted relationships, see this article https://theaspergian.com/2019/10/08/autistic-collaboration-for-life/ and the NeurodiVenture operating model https://autcollab.files.wordpress.com/2019/09/neurodiventures.pdf, which includes references to longer articles with further background.

      1. As far as a different way of phrasing the queerness connection, I don’t understand why you’re asserting that autism is queer at all.  Autism doesn’t need to be queer in order to be a valid neurotype.  You have a clear and helpful definition of neurodiversity without trying to claim autism is queer.  Proximity to queer people in your personal life is irrelevant to the claim autism is queer.  Queerness is a position of rejecting social norms based on gender, sexual, romantic identity or relationship structures built on heteronormativity.  Autism has, at best, a corollary connection to those.  If you’re asserting a direct relationship between autism and the rejection of heteronormativity, you need to explain it, not just state that exists.  The involvement of a handful of queer individuals in shaping your definition is good, but it’s not adequate unless you can explain how autism relates to a rejection of heteronormative social and political structures.

        For the rest, I don’t think it’s realistic to exp
        ect your audience to read three entire supporting articles in order to understand the definition.  A definition should stand on its own, or at least give the links to the supporting materials in the text.

        1. Sorry, there’s a weird line break in my last comment and I’m not able to edit.

        2. Author

          What would you think of “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.”  Feel free to propose specific improvements or an alternative.

          The definition already contains several links to supporting material, including one link I reiterated in the earlier comment and another one pointing to the source of the NeurodiVenture concept from where you’ll find all relevant references.

  5. Author

    I have updated the work-in-progress version of this definition at https://autcollab.org/projects/a-communal-definition-of-autism/ with a number of small changes based on the feedback received so far.  Take a look, and let me know what you think.  The work-in-progress version of the definition now includes a structured form for submitting suggestions of improvements as well as a link to the Autistic Community Loomio group (https://www.loomio.org/g/jMTYZrgp/autistic-community, which you are invited to join).  The Loomio group will be used to publish all suggestions received for review and endorsement by the autistic community, using a transparent and democratic voting process.

  6. I can’t find the link to the test mentioned at the end of the article.

    1. Author

      There is no need to “pass” a test.  If you relate to the above description of autism, the test consists of investing some time engaging with the autistic community.  As suggested above:

      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.

  7. Author

    The definition has been updated based on the feedback received to date.  Many thanks for your constructive input!  The updated definition is now published with a version number (currently v 1.01 – 15 October 2019) to alert people to updates.  Please use the structured “Suggestions for improvements” form above to submit specific suggestions for further improvement.  All future suggestions for improvement will be subject to a democratic consensus building process via the autistic community.

  8. “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.”

    While I think I understand the general gist here, wouldn’t this also unintentionally mean that socially awkward people who would otherwise be neurotypical in every way might come to see themselves as autistic despite the absence of the other elements of the autistic mind?  I would prefer that we not have to deal with people who seek to steal from our culture rather than simply opposing it outright, and it would make me more secure knowing that there would be a way for our community to weed out such fakers.

    1. Author

      By the time readers get to the part you are referring to, they have read the definition, and they have just been reminded of the definition in the preceding sentence: “For anyone who relates to the above description of autism, …”. 

      Given the level of discrimination that autistic people usually face, and given the large number of autistic people who don’t feel safe to openly identify as autistic, the very least we can do is to be welcoming to people who relate to our experience of the world and who would like to learn more about autistic people. 

      Formation of autistic identity is the result of many interactions between a person who is potentially autistic and the autistic community.  Within this context the curious newcomer will undoubtedly receive plenty of feedback from the autistic community that will either draw the person into the community or will ultimately leave the person with the understanding that their experiences are not compatible with the experiences frequently made by autistic people.

      1. Reasonable, but I still feel it leaves the community ripe for exploitation.  I’m all for people learning more about our community, but not for simply letting them in without knowing if they’re not just neurotypicals who think they’re worse off than they really are.  Or worse, people merely pretending so they can infiltrate the community for their own reasons.

        1. Author

          I understand your concerns, since there are so few places that are safe for autistic people.  However think about where exploitation of autistic people takes place systematically and at scale:

          1.  The autism industry : https://autcollab.org/2019/03/15/guidelines-for-future-autism-research/
          2.  Co-opting of neurodiversity by large organisations : https://autcollab.org/2018/09/03/genuine-appreciation-of-neurodiversity/
          3.  Most traditional employment contexts : https://autcollab.org/2019/08/05/people-management-and-bullying/

          The public internet is never entirely safe.  I encourage autistic people to reach out to each other, to incrementally build up mutual trust, and to jointly establish small neurodiversity friendly teams and peer-to-peer support organisations that I refer to as “NeurodiVentures” (https://autcollab.org/community/neurodiventures/).  The path is not necessarily easy, it can take many years, but I have found it to be a worthwhile journey (https://autcollab.org/2019/10/15/pathways-to-good-company/).

          1. I’ve read those too, which is in part why I worry about one of our few safe spaces being invaded as well.  There has to be some kind of way to ensure that does not come to pass.

            Maybe I’m just worrying too much, but I can’t quite convince myself not to be afraid of that sort of betrayal.

          2. Different health services exist in different places.  If a person is unavailable to obtain a diagnosis, for whatever reason, except not being autistic, should we throw them to the wolves as an outcast?
            I agree we need to safeguard our places but if we do it only on a diagnosis only we have let down people.

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