Glossary Of Terms I Won’t Be Using

There are a few autism-related terms that I tend to avoid as they are not good for my health.  That is, they cause me various degrees of inflammation. I understand they’re ‘only’ words, but what I’m ‘lergic to is the cultural laziness (or absence of intelligence) that surrounds these words as they are often used by the ‘general public’ – including many ‘professionals’ who, we are led to believe, are intelligent people and really should ‘know better’. By ‘general public’ I also include the many autistic people who may themselves easily become swept up by and/or fixated on ‘pop’ isms. Of course, everything I write here amounts to nothing more than my own fixations and opinions, and I have always had a somewhat pedantic reaction to cultural jargon and lazy language.

In the last few years (ie since I began noticing these things), a growing number of people have been speaking out against misleading terminology, and there seem to be some efforts towards change. However, the ‘general public’, spoonfed on the usual brainmush of ‘popular culture’ and easily herded, will generally prefer laziness of thought, especially in its current psychic state of skim-reading life.

To alter the entire matrix of language that reinforces public ignorance requires humans to exercise deeper critical thinking, to actively practise compassionate understanding of one another and suchlike. Given our track record as a species, and our incrementally self-destructive trajectory, I will adjust my expectations by not holding my breath.

I’m certainly not the first to suggest that language describes thinking. General professional & public discourse is still habituated to autism as a deficit: syndrome, condition, disorder, dysfunction……something you ‘have’, should ‘fix’ or even ‘cure’.  The challenges of autism are as diverse in expression as any human experience, and we would do better as a species if we approached each individual’s struggles using a language (= thinking) of shared humanity, with intelligent compassion.

I also want to clarify here that I am only writing from within my own experience of Aspergers, and I do not live with the more ‘extreme’ presentations of autism that can be so debilitating for many. My challenges are nonetheless very real for me, but mostly in the domain of psycho-emotional mental health, meaning they are internal and generally ‘invisible’ to others.

Anyway, below are some terms that I either avoid or don’t use in their limiting ‘popular’ sense, and my reasons for said aversion. In some cases, I feel the terms reinforce outdated & unhelpful stereotypes in how people perceive ‘autism’.  I may add other terms to this list as I find more to discard.

‘ASD’ – Autism Spectrum Disorder:  The DSM-5 decision to absorb ‘Aspergers’, as a distinct diagnosable event, into the more generalised (= vague) ‘ASD’ has been especially unhelpful. The term Asperger’s, used diagnostically since the 1980s, defined a particular profile distinct from other expressions of autism, and as such provided important parameters for developing understanding.  This change makes no sense when there is a long-established community, network of advocacy and body of resources specific to the term ‘Asperger’s’.  Also, ‘Autism Spectrum Disorder’ reinforces the public perception of ‘disorder’ as illness, rather than a compassionate definition ie experiencing a state of ‘disorder’ in response to incompatible societal expectations.  ‘ASD’ also homogenises a very complex universe of human experience that, by its own defining features, requires specificity and attention to detail. As for the emotional politics that’s become attached to the name Asperger, I have no interest, and I will continue to use it as a personal reference, interchangeable with the term ‘autism’.

‘High-functioning’ / ‘low-functioning’: Both these terms are inaccurate and misleading for a number of reasons.  Linguistically, ‘high / low” implies a linear scale, measurable in linear units.  This model ignores the fact that ‘ability to function’ is always contextual, and contributing factors will vary at different times, in different settings, and for different reasons.  ‘Inability to function’ is equally contextual, but only because of societal expectations to conform; it is often an invisible struggle, constantly contained and privately internalised, despite outward presentation – eg other people rarely see it.   As with so-called ‘high-functioning’ depression, and numerous debilitating medical conditions, these terms reinforce the mentality that if you can’t see it, it doesn’t exist.  Don’t ever assume you know the extent of a person’s lived experience based on what you see happening on the surface – after all, do you want other people to make those same assumptions of you?

‘Neurotypical / NT’: ‘Neurotypical’ really just reinforces a dominant reality view that assumes a baseline of ‘normal’ (in this case it is referring to brains), and any suggestion of ‘normal’ as a measurable index of anything in this universe, is just silly.  Without performing a thorough investigation of every available human brain, past and present, we really have no idea whether what’s thought of as ‘typical’ is actually a majority population – bearing in mind that there is still an unknown population of undiagnosed ‘atypical’ brains of all descriptions (not only autistic).  Also the term ‘NT’ seems to have further entrenched politically & emotionally charged ‘us & them’ thinking on both sides of the autis / autisn’t fence. As such, I will use the term ‘non-autistic’, only to distinguish in context, not as a divisive generalisation.

‘Aspie’:  While some enjoy the term, I often see it used (especially by partners of Asperger’s men) in an affectionately patronising way (eg “my Aspie”), which, to my mind at least, diminishes the autistic person’s status and reinforces an ‘us and them’ mentality.  It also makes the autistic person sound like a pet.

‘Meltdown’:  Another term I got pretty sick of seeing used in a derisive manner – often by a non-autistic who was obviously impatient with (or embarrassed by) the behaviour, as if it were a child’s tantrum.  The term is attempting to describe what is a very complex and intense experience for an autistic person, and differs for each individual;  I think ‘sensory overload’ is closer to describing what happens.  ‘Sensory’ here is meaning any information in the nervous system – not only the five common physical senses, but emotional and psychological information also. I think of ‘overload’ as meaning any excess of information that makes it too hard for the brain to process and put in order – a tipping point beyond what the nervous system can cope with.  Often the ‘sensory overload’ is not as ‘sudden’ as people assume, and has actually been building internally over an extended period of time, creating a layer of strain that eventually snaps due to some unrelated trigger.  Personally I think this all comes back to the heightened sensitivities at the core of autism.  If you stop to consider how much more intense the modern world has become – constant noise, constant motion and activity, constant stimuli, constant emotional and psychological demands, an environment of attack and defense – then it’s little wonder that anyone with a sensitive nervous system finds it difficult to cope.  And while most publicity is given to overt expressions of ‘overload’ (screaming, banging, disproportionate anger, etc), many autistic people won’t express this heightened state in an obvious display or outburst, but will withdraw into silence while they try desperately to cope with it.  This is definitely an area for non-autistic others to demonstrate a more compassionate response – because after all, any of us can experience too much strain and hit a point of personal crisis.

‘Autism community’ / ‘tribe’: I realise for some autistic people a sense of belonging to a community, of feeling ‘alike’, is an important resource, and I wouldn’t begrudge anyone that. However, as someone who has always existed on the fringes of any human group, and who has a natural inclination to one-on-one interaction, I don’t feel a need for belonging with a group just because it comprises autistic people.  In fact, when I attended a training last year, to apply for a job as facilitator of an autistic adult peer support group, I had the dissonant experience of feeling even more excluded & isolated – even among other autistics. I don’t assume that ‘being autistic’ automatically guarantees compatibility with any kind of ‘community’ or ‘tribe’ – or even compatibility with another autistic person.  My experience in the autistic group training emphasised acutely that being with other autistics does not mean being understood.  I’m sure many other ‘fringedwellers’ (observers of human behaviour from outside ‘the group’) would agree: any collective of humans, no matter how ‘accepting’ or ‘inclusive’ they consider themselves, inevitably creates its own set of agreed conditions, acceptable language & behaviours, its own consensus code – and ultimately what may have been intended as welcome becomes exclusive & divisory.  If I’m going to interact at all, I prefer to connect with individuals – for who they are, on their own merit as a person, rather than any ‘ism’ or identity they might attach themselves to.  And when I see any ‘community’ adopting voices of superiority, dogma, political agenda etc, that’s when I tend to point myself in the opposite direction.

‘Masking’:  I think this term began as a useful descriptor, but I avoid it since it became over-used in popular vernacular, and for the usual reasons, ie once a term becomes diluted through overuse, more thoughtful understanding is often forgotten.  My problem with ‘masking’, as generally described in ‘autistic narratives’, is that (in my view) it’s a more complex sociological question than ‘just’ autism.  ‘Masking’ (ie mirroring behaviour, mimicking the environment) is essentially an adaptive survival strategy in response to cultural conditioning, its parameters will be dictated by whatever the dominant social system might be at any given time.  It seems to me that most human social groups (as with many other social animals) expect conformity to some degree or other, and I tend to think it may be impossible to avoid.  In my 30s I participated in a lot of psychotherapeutic groupwork, radical dynamic processes that forced me to psychologically bust through layers of habituated ‘personas’, in order to access a more authentic sense of ‘being’. This powerful work involved confronting all kinds of survival strategies I had learned as a child, but which were no longer useful to me as an adult.  I was very fortunate to find exemplary teachers, who were adept at recognising inauthenticity, and were skilled at challenging it in ways that forced me to be more self-aware. This is all the domain of ‘masking’, but the deeper questions are really about identity and ‘self’. What remains if one strips back all the learned ‘personas’?  Do we just fill the space with other ideas of ‘self’?  Currently a lot of conversation about eliminating autistic ‘masking’ is accompanied by the promise of ‘being your true self’ – but what exactly is that, if indeed such a thing exists?

‘Special Interest’:  Another term that over-simplifies, and in the domain of public ignorance, is even used as a term of patronising derision.  Currently I prefer to use the term ‘autistic attention’, but I don’t think of it as an exclusively autistic phenomenon.  Personally I think it is a highly-complex neurological event, related to variances in connectivity within the brain.  As a form of hyper-focus, its action is not limited to acquisition of data about a ‘special’ topic;  it can also act as a calming agent in times of distress, or conversely can amplify anxious or distressed thinking. Many autistic people are now reframing language away from ‘special interest’ (and the old connotations of being a ‘social problem’ or ‘eccentricity’), toward recognising this as neurological ability.  Even terms such as ‘passion’ and ‘talent’ (in their common usage) can have a diminishing effect on how we perceive ‘autistic attention’.  I have thunk a fair few thinks on this theme, and have written a series of posts sifting through said thinks, ie observations of my own ‘autistic attention’…

‘Neurodiversity’: ‘Biodiversity’ describes the total complexity of all life on Earth – every living organism is embedded in the matrix of biodiversity. The term ‘neurodiversity’ is a great illustration of how language often becomes distorted and diluted in meaning, even politicised: people should be reminded of this word’s original context in Judy Singer’s work, when it was intended to describe a basic biological fact of our species – with autism as but one neurological expression among the total complexity of all human brains on this planet.  I also won’t be using the term ‘neurodivergent’, for the same reasons – a person cannot be ‘neurodivergent’ as this implies a departure from some kind of ‘norm’, whereas the term ‘neurodiversity’ was created to be inclusive of all neurological complexity.  In this sense, a ‘thing’ can’t diverge from itself.

‘Sensory experience’: At its core, autism describes magnified sensitivities.  Language should encourage thinking of ‘sensitivity’ as describing multiple states of conscious awareness and perception, not only including every subtlety and extreme of the five common senses, but extending beyond them to all states of awareness: emotional, kinaesthetic, intuitive / psychic sensitivities and more.  One particularly intense sensory experience is that of being hyper-aware of one’s thoughts, living with a consciousness that is acutely aware of itself.  Even when outside stimulus is kept to a minimum, the inescapable barrage and complexity of thoughts in a hyper-connected brain can be maddening and exhausting, and contributes to all kinds of chemical responses in a body’s kinaesthetic experience.  So, though I will use the term ‘sensory experience’ as a descriptor, I won’t be limiting its meaning to the five common senses.

‘Identifies as’:  I’m more interested in exploring what remains if you strip away the need for any kind of identity, including ‘autistic’.  I have a few personal harumphs on this subject and will no doubt voice them elsewhere…