The following definitions and descriptions of autistic experience are from autistic researchers, vloggers/bloggers, self-advocates, and the autistic community. If you want the non-autistic definitions, the outsider-looking-in definitions, see the Diagnostic and Statistical Manual of Mental Disorders V (DSMV) and/or the International Classification of Diseases 11 (ICD11) or the National Autistic Society here – be warned that these theories of autism are pathology-based and can be difficult to read about yourself.
Before moving on to more detailed overviews and descriptions of what it means to be autistic, here is a simple, graphic representation – a fantastic visual way of understanding the spectrum and how it ONLY relates to autistic people (i.e. no, everyone is not a “little bit autistic”, no, not “everyone is on the spectrum somewhere“, by The Aspergian
It’s also important to understand that “Autism” is a concept, an abstract idea, and so we should only be talking about autistic people, and their individual needs.
For some short and long videos on what it means to be autistic, see here and for theories of autistic experience see here.
Longer, detailed definition number 1:
What is autism?
Communal definition of autism by the Autistic Collaboration
“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 extends the LGBTQIA+ kaleidoscope of identities by recognising autistic traits as natural variations of cognition, motivations, and patterns of behaviour within the human species.
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 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 human experience involves the following set of cultural artefacts
- Language(s), including various idiosyncratic forms of communication
- Written rules for interaction, in particular in relation to interacting with the physical and biological world
- Tools of all kinds
- Knowledge related to the making and use of tools
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 don’t have 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. 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
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.
The autistic way of making friends
To construct trusted relationships and friendships, autistic people apply an explicit goal oriented approach:
- Search for people with shared interests, usually online
- Confirm a shared interest
- Start having fun by knowledge sharing
- Explore what can be achieved with joint capabilities and capacities
- Embark on significant joint projects to have more fun
The limits of labels
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.
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.
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.” – Communal definition of autism by the Autistic Collaboration
Longer, more details definition number 2:
WHAT IS AUTISM?
By Nick Walker
“Autism is a genetically-based human neurological variant. 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. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.
Autism is a developmental phenomenon, meaning that it begins in utero and has a pervasive influence on development, on multiple levels, throughout the lifespan. Autism produces distinctive, atypical ways of thinking, moving, interaction, and sensory and cognitive processing. One analogy that has often been made is that autistic individuals have a different neurological “operating system” than non-autistic individuals.
According to current estimates, somewhere between one percent and two percent of the world’s population is autistic [as of 2019 that’s around 146 million of us!]. While the number of individuals diagnosed as autistic has increased continually over the past few decades, evidence suggests that this increase in diagnosis is the result of increased public and professional awareness, rather than an actual increase in the prevalence of autism.
Despite underlying neurological commonalities, autistic individuals are vastly different from one another. Some autistic individuals exhibit exceptional cognitive talents. However, in the context of a society designed around the sensory, cognitive, developmental, and social needs of non-autistic individuals, autistic individuals are almost always disabled to some degree – sometimes quite obviously, and sometimes more subtly.
The realm of social interaction is one context in which autistic individuals tend to consistently be disabled. An autistic child’s sensory experience of the world is more intense and chaotic than that of a non-autistic child, and the ongoing task of navigating and integrating that experience thus occupies more of the autistic child’s attention and energy. This means the autistic child has less attention and energy available to focus on the subtleties of social interaction. Difficulty meeting the social expectations of non-autistics often results in social rejection, which further compounds social difficulties and impedes social development. For this reason, autism has been frequently misconstrued as being essentially a set of “social and communication deficits,” by those who are unaware that the social challenges faced by autistic individuals are merely by-products of the intense and chaotic nature of autistic sensory and cognitive experience.
Autism is still widely regarded as a “disorder,” but this view has been challenged in recent years by proponents of the neurodiversity model, which holds that autism and other neurocognitive variants are simply part of the natural spectrum of human biodiversity, like variations in ethnicity or sexual orientation (which have also been pathologized in the past). Ultimately, to describe autism as a disorder represents a value judgment rather than a scientific fact.” – By Nick Walker
From Chloe and Annette at SYA?
What the clinicians, manuals, and basically the majority of non-autistic people, outsiders looking in, can never articulate or get right:
- Once you realise that the way we process all sensory information is different to non-autistic people it becomes clear why we experience the world the way that we do, and also why non-autistic people often fail to understand us
- Repetitive behaviours (and thoughts) and need for routine and sameness makes sense when you experience the sensory and thus social environment as loud, smelly, bright, painful, and overall chaotic. Controlling as much of our experiences with this sensorially chaotic and often surprising world helps us regulate what would otherwise be a constant sensory onslaught. This also explains a need/preference for e.g. the same foods day after day (year after year) – we can also be highly sensitive to taste and our internal bodies are also sensitive. If we know something does not upset our taste or insides, and we still get enjoyment from the same things, then why upset the apple cart by trying scary, potentially painful foods?
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