Categories
Definitions & Characteristics

Atmosphere – Rays (Part 3)

When I say things like “I don’t believe in the diagnoses in the DSM,”

that does not mean I think people are faking it, or making their experiences up. […] Their experiences are absolutely, definitely real.

[…]

I agree that we need a language,

but I disagree that the DSM provides a good one. […]

Out of context, Sarah K Reece

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Diagnosis recognizes reality; it doesn’t create it.

The way medical diagnosis works can often make disabled people feel fake. (Any kind of disabled people, including people with mental illness or chronic illness). There’s a widespread culture misperception that real disabled people have a clear professional diagnosis, and that everyone else is just faking it for attention or something. It doesn’t actually work that way. Diagnosis is more complicated than that.

People with disabilities are disabled whether or not anyone has diagnosed their disability. […] But it doesn’t change the reality. Someone diagnosed today was already disabled yesterday. Many people are disabled for years or decades before they get access to accurate diagnosis. […]

In addition, some conditions aren’t currently diagnosable, because they have not yet been identified and named by doctors. If a condition was discovered for the first time today, someone had probably already had it yesterday. And last year. And back and back and back. […]

Ruti Regan

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Words, like the chisel of the carver, can create what never existed before rather than simply describe what already exists.

Martin Heidegger

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Was There an Autism Before the Name?

Were we here before the world called us ‘autistics’?

Was there an ‘us’ or a ‘we’ before we and the world called ourselves so?

How were we, autistic people, autistic, before we actually were autistic?

Adapted from writings by Dallyce Potess

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Categories
Definitions & Characteristics

Atmosphere – Snowflakes (Part 3)

Theory of mind does violence to autistic people.

Autistic people lack a theory of mind (ToM), so it is said. Autistic people can’t know that other people are people. That they have bodies, unique mental states, lives, experiences. That other people know, want, feel, and believe things.

To have a ToM, it is believed, is a very human thing. To know that other people are people, and that you yourself is a person. To know that people are not mindless bags of skin moving through space.

On one hand, are the humans who do have a ToM. On the other hand, are those distant Others who do not.

ToM is always a binary.

ToM is always a dichotomy between the human and the neurologically impaired.

Autistic bodies are violently absent. The absence of a body suggests that violence cannot be done to it. The absence of a body is the erasure of the violence done to it.

ToM is defined by a negative. ToM relies on a circular logic. We know that autistic people lack a ToM because non-autistic people have a ToM; we know that non-autistic people have a ToM because autistic people lack a ToM. This is what we know – what we think of as fact and hold onto as true.

Non-autistics’ failures mean they are simply human, but autistics’ failures show their impaired ToM. Autistics never have natural ToM. Any ability they demonstrate, however, means they are merely hacking, passing, faking.

In the same way that autism is the boundary for the (in)human, ToM is the boundary for the (non)story.

ToM, it is said, is based on absolute, on empirical fact. ToM represent where a story cannot be trusted.

There are plenty of dichotomies. Theories about ToM represent truth; theories about autistic personhood do not.

Autistic people have come to represent the limit of the inhuman, all in the name of facts, in the name of ToM.

The autistic is not trusted, is not reliable, is not accurate. Any claim coming from a ToM-impaired autistic body can be refuted by everyone with a ToM.

Theories about ToM tell stories about the violence against autistic bodies. They enable the violence, explain the violence, defend the violence.

What matters are the feelings and attitudes of the non-autistic. What matters is what the non-autistic thinks of the autistic.

The autistic body is nonexistent; the autistic body’s story is told by the non-autistic.

Based on an article by Melanie Yergeau

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Nevertheless, even if intelligence is only a matter of appearances, appearances matter. […]

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In-group, out-group:
The place of intelligence in anthropology

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1

(status)

Disputes about intelligence are disputes over status.

Status is usually seen as a two-tiered structure:

  • at the upper level, an abstraction of social goals;
  • at the lower, any concrete evidence or collateral one might have for claiming it.

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2

(bidding)

Intelligence is not itself concrete collateral: it brings no offering to the great god Status except the promise offered by the word itself.

That is because it is wholly internal to the game of bidding for status […] It belongs in the realm of appearances and mutual recognition alone.

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3

(self-referential)

[Intelligence] connects status at its higher level, as an abstraction of values and goals, to its lower level, as concrete collateral to be used in support of a bid.

This is why […] people claiming status will talk about their intelligence as if it was self-evident when actually the term is purely self-referential.

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4

(claim to status)

Intelligence, [like honour and grace], fills the round hole of individual human uniqueness with the square peg of abstract hierarchy.

Like them, it creates not just an in-group but an out-group that is definitely disqualified from entering the bidding in the first place.

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5

(sanctity)

Intelligence sanctifies the person. It confirms the legitimacy of an individual’s behaviour by referring it to an external authority.

[The psychologist allocates IQ scores (to the intelligent, as a sign of intelligence). Similarly, it is the king who disburses honourable titles (to the noble, as a marker of honour), and it is God who dispenses grace (to the elect, as a confirmation of grace).]

Although this authority is arbitrary, in receiving its blessings we abnegate our right to question it,

thereby binding ourselves to accept practices which a different generation, in different historical circumstances, might regard as utterly wrong.

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6

(exchange)

Intelligence is a form of apparently equal exchange amongst creatures who are actually inequal. […]

The relationship between the intelligent and the intellectually disabled is one of exchange, inasmuch as the credit of the one could not exist without the debit of the other; it takes place without the awareness of either, or perhaps only with the awareness of the latter.

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7

(randomness)

We have already seen that the procedure for establishing intelligence as a scientific concept consists first in conjuring up the notion of a mean purely as such. Subsequently, and only subsequently, this mean becomes something concrete […]

Intelligence [is] what those with the power say it is, as were honour and grace: a dummy category, a magic hold-all into which they can pack whatever they like according to purpose.

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8

(biological hierarchy)

Nevertheless, [intelligence] does have one constituent that covers all contexts: intelligent means better.

The word can only function as a disguised comparative. True, so do all descriptive terms in the human sciences. None is neutral.

But ‘intelligent’ is not only value laden, it is content free. […]

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9

(merit)

Status by its very definition consists of ranks; and if that is the case, then abilities too must come in ranks, otherwise there would be no way of pegging one to the other. […] But [what] constitutes the merit of one sort of ability against another?

[…] Meritocracy (some abilities are more equal than others) is at one with conservatism (hierarchy is natural). One’s level of intelligence both determines one’s vocation or calling and is that calling, one’s place in a natural social hierarchy […] Meritocracy cannot favour ‘ability’ over bloodline or wealth without passing hierarchical judgements that involve matters intellectual and their concomitant social and political interests.

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10

(consensus)

In […] confusion, the purely nominal classification of certain abilities as intelligent or intellectual is passed off as real.

I may be especially able at maths, for example, or ironic humour, or orienteering, or recognizing another person’s concealed emotions. The only thing they have in common is that I can be judged as being better or worse at them. That judgement may in some cases be real enough.

But to be useless at maths or orienteering is a chosen characteristic of intellectual disability, to be useless at ironic humour or perceiving hidden feelings is not; and in fact some people labelled with severe intellectual disability are better at ironic humour and perceptiveness than some people classed as highly or just normally intelligent.

No distinction between intellectually better or worse can exist unless some temporary, subjective and purely human consensus has been reached as to which particular abilities ‘intellectual’ or ‘intelligent’ covers and which not. Talking about emotional intelligence, which might seem to cover humour and perceptiveness, does not solve the problem, since exactly the same point can be made here too.

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11

(nature)

One might [think that, surely, the intellectual hierarchy] cuts out at some point near the bottom of the scale, where the selection of certain abilities as intellectual becomes no longer merely consensual but is indeed objective, separating off a discrete set of really intellectually disabled people who are therefore exempt from an otherwise historically constructed group. Surely there must be some such creatures.

But the exemption would only work if one were already assuming that they exist separately in nature as some biological subspecies, which is indeed the historically contingent premise on which the modern notion of intellectual disability has been built. They are exempt from egalitarian principle only because that principle, in order to exist at all, has already exempted them.

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C.F. Goodey

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Categories
Definitions & Characteristics

Atmosphere – Silhouette (Part 1)

Having an {autism}-like syndrome does not give you {autism} […] Having a big belly does not make you pregnant.

Partial quote, David Schnarch

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If the DSM-IV criteria are taken too literally, anybody in the world could qualify for Asperger’s or PDD-NOS.

Catherine Lord

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To claim that something is over-diagnosed implies that there is one true, proper rate of diagnosis.  And that ain’t so. […] For a complex, multi-faceted neurological condition such as autism, these issues are compounded much, much more.

Even for many physical conditions, doctors wrangle over how to define the boundaries of a diagnosis.

Lynne Soraya

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[The loss of the autism diagnosis] probably reveals more about the weaknesses of a definition of autism based entirely in deficits rather than in core processing differences.

chavisory

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[…] I feel like this list [written by autisticality] is too vague and open, perhaps to the point that it’s not useful. (Barnum–Forer effect)

I’m sure nearly everyone meets at least a few of these traits, and in these criteria, there is no threshold given (e.g. a number of criteria you would meet in order to be ‘maybe autistic’ or ‘autistic’) to divide between ‘autistic’ and ‘non-autistic’ people.

Differentiating between ‘autistic’ and ‘not autistic’ is difficult however you divide it, but without a line, and using these criteria, it seems like everyone would fit into being autistic.

prayingground

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[T]here is an overlap between people who end up with a diagnosis on the autism spectrum and the general population

[Here are the results of] a questionnaire that measures autistic traits in the population: on the left of the graph you see the familiar bell-shaped curve, or normal distribution, in the general population […] so it’s not that you have autism or you don’t, but that almost everyone in the population has some autistic traits and find themselves distributed somewhere on a spectrum.

On the graph you see the solid line where people have a diagnosis […] but there is that middle bracket of overlap – there isn’t a clear cut point where you can say that somebody who has a diagnosis of autism is clearly different from somebody who doesn’t so [it] reinforces the idea of individual differences in the population.

[…] although people with a diagnosis of more autistic traits there’s a substantial overlap and that actually it’s not your score on a diagnostic test that determines that you need a diagnosis, it’s actually your environment.

[T]here are people who score at exactly the same point in that grey zone in the middle and that some will have a diagnosis and some won’t and what determines that is whether you find yourself in an environment in which you can thrive and fulfil your potential – we can call it an autism-friendly environment – or if you find yourself in an environment in which the challenges are too great, and you begin to suffer and end up going to a clinic and seeking a diagnosis.

So it’s not your psychological make-up but the fit between you as an individual and your environment that determines if you end up with a diagnosis opening up the possibility that we can adapt the environment to make it easier or more difficult for people who potentially have autism to fit in.

Some will suffer in certain environments whereas others will manage because of environmental adaptations or simply a good fit between them and their environment.

Simon Baron-Cohen

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“Everyone’s a bit autistic, that’s why it’s called a spectrum.”

This is not what ‘autistic spectrum’ is meant to mean.

In fact only autistic people are on the autistic spectrum. If you’re ‘on the spectrum’ then you are autistic (or ‘have autism’, whichever is your preference), it is a spectrum of the people who are autistic.

Not autistic? Not on the spectrum.

Nat

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[A]utism is a collection of related neurological conditions that are so hard to pick apart that psychologists have stopped trying.

All autistic people are affected in one way or another in most or all of these boxes – a rainbow of traits. If you only check one or two boxes, then they don’t call it autism – they call it something else. […]

But if you have all of the above and more, they call it autism.

[…] in order for a person to be considered autistic, they must have difficulty in multiple categories.

C.L. Lynch

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[I]t becomes a scramble to create weighted lists and say, “anyone who scores under 50 points is faking,” rather than trying to figure out why so many people are hurting in such similar ways, and being hurt in such similar ways, and then stopping those things from happening.

Out of context, intersex-ionality

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Categories
Spectrum

Lines – Glass (Part 3)

Typically developing babies are reducing their attention to faces and increasing their attention to objects, [and] their social development […] soars. Moreover, rather than distracting babies from social engagement, objects and the hands that manipulate them offer new ways to share attention with others.

Emily Morson

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It is a lot of work to look non-autistic, and yet, looking non-autistic is the ticket to sit at many tables. It is not right, and yet, I choose to expend a great deal of energy inhibiting my autistic ways for the sake of sitting at some of society’s tables. Employment is one such table. […]

Many argue that all people have to do this ‘sucking it up’ to some extent. After all, we cannot just act however we wish when we are in public. I agree.

However, autistics have to do this to such a greater extent that it prohibits many of us from being employed because we simply cannot ‘suck it up’ long enough each day to be gainfully employed.

Judy Endow

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It’s Stressful to be Someone You’re Not

Faking it ‘til you make it may work in the short-term, but trying to sustain it in the long-term is unbelievably stressful. We all have our preferred ways of doing things. And because those ways are normal for us, they require the least amount of energy. We can do them without burning out or disappearing from ourselves in the process.

Faking it is supposed to magically smooth away our feelings of self-doubt and low confidence, but in reality it puts extra stress on the body. People who continuously act a pretense, outside their natural personality preferences, at some point will start to feel anxious, exhausted, angry and plain-old frustrated. It’s a bit like pulling the plug in a bathtub; you won’t notice much difference in the water level at first, but eventually everything will just drain out.  

Jayne Thompson

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We are all, every day, engaged in mind-blindness against people we do not agree with or comprehend. We are all unempathic about some people and some groups, […] toward people who are not like us.

Karla McLaren

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How many ‘normal’ people have enough human feeling to befriend and understand non-normative people? How many ‘normal’ people are trapped in their own ‘normal’ worlds, without any consciousness of what it means to be non-normative? The accusations of lack of caring and lack of engagement adhere to the ones who are different. Those in the majority are simply acting ‘normally’ by doing all the things that, when non-normative people do them, are considered evidence of pathology.

Rachel Cohen-Rottenberg

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What’s it like to be neurotypical? […]

It’s being able to fidget without it being called some specialized term which sounds like a euphemism for fidgeting with one’s own unmentionables, have a passionate interest without it being called a ‘perseveration,’ participate in classes and activities without them being called ‘therapies,’ and appreciate the small beautiful things in life without being accused of being unable to see the big picture. […]

It’s living in your own little world just as much as any autistic does, without people making a big deal out of it.

reform_normal

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Some people get labeled because of their disability.

For example:

  • Sheila does not have a disability. Sheila has a bad day. She yells at her sister. People say, “Sheila was being mean today.”
  • Renee has a disability. Renee has a bad day. She yells at her sister. People say, “Renee is aggressive.”

Autistic Self Advocacy Network

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Both satire and very serious

Managing Challenging Behaviors in Neurotypicals

Many neurotypical adults have behaviors that the rest of us find difficult to handle. These people are generally unaware of the stress their challenging behaviors cause for autistic friends and family members. Even the most patient autistic people whose loved ones have challenging behaviors may become frustrated and find their time and energy greatly taxed by the demands of dealing with these behaviors regularly. […]

Restless Hands

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How do we respond to discomfort? To fear?

Let’s look first to film and literary clichés for examples…

We grit our teeth and bear it. We ball our fists and dig our nails into our palms. We bite our tongues to keep from screaming. We pinch ourselves. […]

What do all these methods have in common? They all involve the distraction of pain as a coping mechanism. […]

There’s a reason pain is the universal distractor. Pain is the only form of stimulation that our nervous systems will not acclimate to.

Kirsten Lindsmith

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Sometimes, all of us have meltdowns. Not slight upsets, or moments of rage. Full blown, life sucks meltdowns. If you don’t carry an autism label and you don’t harm yourself or others while having them, they remain private moments of vented frustration one may or may not be ashamed of.

Kerima Çevik

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We must accept that it is a normal behavioural response to having our needs unacknowledged and unmet to lash out aggressively, to engage in attention seeking, and to do things others find annoying. Any of us would do that (and do) if put under enough pressure and if we feel unvalued and unheard.

Michelle Swan

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[…] The most dangerous assumption, meanwhile, is that they don’t understand. Their eyes are not windows to any sort of soul. They are people in form but not in substance. Their communications are disregarded as meaningless or rudimentary. Imagine if, all along, a person treated this way understood absolutely everything they were told, understood that people underestimated not only their cognitive abilities but their very humanity, understood that they were seen as less than, damaged, or not even there. Imagine the danger to a soul viewed as soulless.

Imagine how you would feel in that person’s place. Would you feel angry? Would you want to scream? Would you lash out sometimes? Can you imagine something like an inner struggle to express rage without hurting other people that might lead you to self-harm?

The desire to be seen is perhaps the strongest craving in a human being. […] I don’t mean seen literally with the eyes, or heard with the ears, but to be beheld by a fellow human by any means available. To know that you have managed to convey something of your unique self to another person both roots you to the world and frees you.

Erin Human

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Followed by the series: