Today’s subject was originally “The Autistic Community”. But I’ve been thinking that maybe some common acronyms and terms used within the community might be helpful, since I use them quite a bit. If you think of any you’d like me to add, let me know in the comments.
Acronyms and common terms:
Ableism: The most common definition of this is that it is a type of discrimination which favours people without a disability, but it goes deeper than that. It is the concept that there is a ‘right’ way to be and that any difference is necessarily negative; that there is such a thing as ‘normal’.
Internalised ableism is holding this belief (of negative worth, of being ‘less than’) while actually being disabled. It is quite common – and devastating – to hear Autistic adults talk about themselves by reciting a list of deficits, as if that’s all that distinguished them.
Although many Autists reject the idea that Autism is a disability in and of itself, this expectation that everyone has a particular (NT) neurology creates disadvantage for those who don’t fit those expectations.
Allistic: quite simply, this means not autistic. From allo- meaning ‘other’, as opposed to auto-, meaning ‘self’, – derived from the perception that autistic people don’t seek others as a reference point or gauge for behaviour, whereas allistic people do. (Allistic people consider this external frame of reference to be a Good Thing, for some reason.) All neurotypical people are allistic, but not all allistic people are neurotypical, since neurodivergent refers to other conditions as well as Autism.
APHID: Autistic Parent (/Professional /Person) Heavily In Denial (with thanks to Stephen Shore for this acronym).
You probably know someone like this. Someone who knows a bit about Autism, who everyone else knows without a doubt is Autistic, but who is really not ready to hear that for themselves.
It’s often that one family member who’s speaking out the most loudly against diagnostic labelling, or possibly pointing out Autistic behaviours in others, while not seeing it in themselves at all. Or that professional who works with Autistic people, who speaks about Autism, writes about it, perhaps has something of a reputation regarding it, but who completely misunderstands or ignores the way they present to others, which strongly hints at their own presence on the Spectrum. Like perseverating for many years on a defunct hypothesis about cerebral gender, or resisting change to outmoded diagnosis labels.
ASC/ASD: Autism spectrum condition / Autism spectrum disorder. While ASD is the term in common diagnostic use currently, many Autists prefer the term ‘condition’ as being more neutral than ‘disorder’.
Asperger’s Syndrome: (pronounced with a hard G, as in egg, not a soft G as in age. Also, there’s no B in Asperger’s.)
Asperger’s Syndrome could probably be considered to be a cluster of specific expressions of Autism, but it is no longer a diagnosis under the most commonly used diagnostic manual (DSM-5). The alternative diagnostic listing, the ICD-10, still includes Asperger’s as a diagnosis under the category “Pervasive Developmental Disorders”, but the pre-release information for ICD-11 suggests that it will also remove the separate diagnosis, and incorporate Asperger’s into a category titled “Autism Spectrum Disorders”.
Although the terminology is out of date now, lots of people still use it, having been diagnosed under DSM-IV or ICD-10. Some people object to its incorporation into the Autism category, and among the most strident of these voices are the so-called “Aspie Supremacists”, who would prefer to be distanced from what they almost invariably call “low functioning Autistics”. Hmmm… We’ll get to functioning labels in a minute.
Auditory processing: In very simple and practical terms, this is the processing of spoken information. It can sometimes be delayed in Autistic people, and for many (not all), speaking on the phone can be very difficult, and written communication is preferred.
Burnout: This is a long-term response to a long-term build up of stress. Most Autistic adults who experience burnout describe trying to act neurotypical for too long, and then one day, the mask is no longer available – it’s not possible to pretend any more. It is usually accompanied by a sudden loss of daily functioning, along with anxiety and depression, and appears to be particularly prevalent among people who either did not know they were Autistic (and therefore didn’t know what they needed to do for self-care), or who have previously been suppressing their Autistic responses in an attempt to be seen as competent in a competitive world.
DSM-IV/DSM-5: These are editions 4 and 5 of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders. DSM-IV was first released in 1994, with a Text Revision edition released in 2000. This changed some of the language used and clarified some sections, but did not change any diagnoses or criteria. Asperger’s Syndrome was first incorporated as an official diagnosis in DSM-IV. (Autism had first been added to the manual in 1980, with the release of DSM-III.)
DSM-5 was released in 2013. (Yes, they do use Roman numerals for earlier editions, and Arabic numbers for the 5th edition onwards.) In this edition, the previously related but separate diagnoses Autism Disorder, Asperger’s Syndrome, PDD-NOS and other ‘pervasive developmental disorders’ had been collapsed into one diagnosis, Autism Spectrum Disorder.
Executive function: This is a term used for the way the brain processes the tasks we have to do. It involves planning the steps of a task, maintaining attention, working memory, (i.e. remembering the information needed for the task – like a temporary folder), and the reasoning and problem-solving processes required to complete the task.
These are the basic processes affected in ADHD (which often co-occurs with ASCs), and can be quite challenging for Autistic people even if ADHD is not present. These processes are easily affected by stress, anxiety, illness, and depression, whether or not you have an underlying executive dysfunction.
Functioning labels: Terms such as “high-functioning” and “low-functioning” are strongly rejected by a very large proportion of the Autistic community (note, this is the actually Autistic people, not necessarily the surrounding parents, carers and professionals). The objection is for several reasons, but one of the most commonly expressed issues is that to give a functioning label creates an impression that the level of functioning ability is fixed and immutable, whereas the experience of Autistic adults is that the capacity to function (as we’re expected to by societal pressures) fluctuates day to day, and based on external and internal circumstances. Burnout, for example, can mean that someone who was previously perceived as highly capable can lose many aspects of their capacity, whereas delays in development that led to the label of ‘low-functioning’ may well be caught up given time, support and techniques (e.g. alternative communication options, assistance dogs).
People labelled “low-functioning” have their strengths ignored. This group of people have traditionally been recommended for institutionalisation; even if this did not happen, they are frequently not given opportunities to use their gifts and strengths. Even today, many parents tell Autistic Adults that their child is “too low functioning ever to be able to make choices for themselves” – dismissing the fact that these Autistic adults may have had similar challenges as a child.
People labelled “high-functioning” instead have their challenges ignored. Many people spend a lot of time and energy masking their difficulties, afraid to be seen as ‘different’ or less capable. People still have a great deal of misinformation about Autism, and stigma and discrimination arising from the label can be a strong motivator for suppressing struggles, hiding Autistic expression, and never asking for accommodations or support for fear of losing jobs (there are surreptitious ways of doing this without laying it on the disability), being advised to drop out of courses, or being subjected to that passing revolted look, and quickly replaced by an infantalising tone. Most of us who disclose either our diagnosis or our specific struggles have experienced this.
Identity Language: Professionals are often taught that they must always use “person first language”, i.e. “a person with Autism”. In so doing, they are told, you place the person first, and separate them from their disability.
However, not everyone considers this to be appropriate. There is a strong acknowledgement among those who know (i.e. Autistic people – nobody else ever really can) that Autism colours every aspect of life, and that Autism is an identity; even a culture, and not a tragedy, and have therefore adopted “Autistic person” (identity-first language) rather than “person with Autism” (person-first language). A recent study found that 61% of Autistic adults prefer this way of identifying, whereas only 28% used person-first language. (The remainder either had no preference, or used a different identifier, such as ‘on the spectrum).
If you are not Autistic, but are telling Autistic people how to identify, you remove their personhood far more effectively than by putting an identity term before the word ‘person’. If you are actually Autistic, you may call yourself Autistic, a person with Autism, on the spectrum, or a purple pickle fairy if you wish, and I will respect your identifiers. Well, OK. I might laugh if you called yourself a purple pickle fairy.
Meltdown: This is not a tantrum.
Tantrums are relatively deliberate, made in order to get one’s own way. The child (or adult) is often able to stop a tantrum if the person it’s directed at gives in or ignores it.
A meltdown is an outward ‘explosion’ in response to a sensory overload. This is not a deliberate action, the Autist usually has very little control over it, and it will happen whether or not there is anyone there to watch it.
For a visual type of analogy, a tantrum is like shaking a bottle of soft drink (soda) and taking the lid off. A meltdown is more like the internal pressure blowing the lid off. (See Shutdown)
Neurodivergent (ND): different (from the typical) in neurology. This includes autism as well as other neurodivergences including ADD/ADHD, dyslexia, acquired brain injuries, OCD, giftedness and other conditions. The term is used as a neutral term to avoid pathologising or stigmatising differences in neurology.
Neurodiversity: the variety and range of different neurologies which are present in the human population.
Neurotypical (NT): having typical or average neurology. Not just not Autistic, although it is often used in that way by members of the Autistic community. Sometimes described as “normal”. Don’t get me started on that word.
PDD-NOS: Pervasive Developmental Disorder, Not Otherwise Specified. A neurological condition, no longer a diagnosis, which was considered akin to Autism, but in which the person being diagnosed doesn’t has sufficient traits to warrant a diagnosis of Autism. It has now been incorporated into the “Autism Spectrum Disorder” category in DSM-5.
Sensory overload: One of the commonalities in Autism is that we have differences in sensory perception and sensory processing. This can seem like the world is turned up too loudly, too brightly, and there is no filter or way to reduce the barrage of input. A sensory overload usually occurs when the sensory input is too much, and there’s nowhere to go to escape from it. Senses – awareness of noise, touch, smell, brightness and movement – keep heightening and soon become too much to bear; it all becomes completely overwhelming. Sensory overload is very likely to end in meltdown or shutdown. Avoiding loud, bright or otherwise stimulating situations that you can’t remove yourself from goes a long way to avoiding these responses.
Shutdown: This is an alternative response to sensory overload, as opposed to a meltdown. A shutdown is like the consciousness removing itself from the outside environment. This may not look like being curled up in foetal position – although it may. It may include becoming immobile and staring off into space, or becoming so absorbed in a special interest or somewhat mindless activity (like Candy Crush) that you become unresponsive to people calling your name.
Stimming: The word ‘stim’ comes from the vaguely uncomfortable term ‘self-stimulating behaviour’. It’s a habit or action that people use to comfort, settle, or relax themselves. Hand-flapping is one example of this, but it can be as diverse as sucking a thumb or finger, fixing makeup frequently, tapping feet or fingers, repeating words or phrases, knitting, fiddling with hair, or spinning in circles.
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