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 – Rays (Part 1)

[…] an autism diagnosis can be a tool for empowerment. It’s an answer and an explanation, it’s a way out of cycles of self-blame and guilt, it’s a passport to an entire community, and if we’re lucky, it’s a connection to the understanding, supports, and services we need in order to truly thrive, sometimes for the first time in our life.

Julia Bascom

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Looking back over my life through a different lens adds perspective and dimension to my experience.

It explains and validates.

It helps me to accept myself and changes my internal dialogue.

It is a raw process. It is taking this part from here and looking at it in detail, deciding if it helps or hurts, then grafting it where it belongs. It feels more comfortable over all to have things in their new places, but the edges sting where they were pulled at, and sometimes there is an empty space left where it was that I am not sure what to fill with yet.

Michelle Swan

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Speaking about past events using the present’s conception doesn’t necessarily aim to deny the perception that was dominant in the past. Nonetheless, there is often a pervasive subtext that the present speaker considers this past conception to be deeply wrong, and so uses the present’s language to describe the past in an attempt to say it right, according to the present time.

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Access to a collective autistic wisdom, absent for a lifetime, is a powerful force. Through it we can discover the language and concepts we need to ease our passage towards more congruent identities

Sonia Boue

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Having {frameworks} for experiences can be profound, the difference between mute suffering and solidarity and strength in the face of adversity.

Partial quote, Sarah K Reece

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It really helps to have a community who don’t react to my descriptions by saying “that’s weird” or “surely you mean you’re [insert different emotion/reaction]”, and also to have read so many other first-person accounts from other autistic people that chime with my own. Having the language to communicate my feelings with others who can relate is amazingly powerful, and it feels like every new revelation helps me to figure something new out, and describe it better. It makes me think a lot about how important community can be, how much we can learn by having people we can relate to in our lives, and how valuable it is for us to have ever more accurate and authentic representations of different ways of seeing and experiencing the world.

Sonny Hallett

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[…] Remind yourself that seeing your limits just means you’re seeing more of the parameters in the equation. Remind yourself that most people don’t know their own limits that well, and they can’t plan for it. They’ll hit the wall at full speed. So knowing this is a power that you have.

Kate

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[Diagnoses and/or labels] can often be adopted by people […] in order to structure and explain their experiences.

Some people find that having names for their [experiences] provides them with a sense of order and a way to reconstruct their lives.

Finding ways and new meaning in which they can participate in community and re-write their own personal and collective histories, enables a reclamation of voice; a re-naming that encourages re-positioning and the gaining of power and agency.

Monika Dos Santos, Jean-François Pelletier

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Even without an official diagnosis, many people [can] benefit from learning coping techniques with people who have similar life experiences.

Worst case scenario, someone who isn’t autistic learns how to function more easily from people who are autistic. [It’s] the curb cut effect: Disability accommodations can improve the lives of more than just their target audience.

Sara Luterman

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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
Spotlight

Reverberations (Part 2)

The recent spike in diagnoses of autism […] has prompted some to suggest that it is an excuse for bad behavior or the latest clinical fad.

Amy Harmon

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[…] the stamp of medical authority.

Increasing numbers of children are given increasingly specific labels, ranging from psychiatric and neurological diagnoses such as Asperger’s and attention-deficit disorder to educational descriptors including ‘gifted’ and ‘learning disabled.’

Maia Szalavitz

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Today, autism has broadened into an almost catch-all social category. Anyone who is withdrawn or rigid or awkward might be suspected of being ‘on the spectrum.’

Caroline Narby

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Remotely diagnosing famous geeks has become a kind of hipster parlour game.

Steve Silberman

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Every generation has its defining psychiatric malady, confidently diagnosed from afar by armchair non-psychiatrists. In the fifties, all those gray-suited organization men were married to ‘frigid’ women. Until a few years ago, the country of self-obsessed boomers and reality-TV fame-seekers and vain politicians and bubble-riding Ponzi schemers made narcissistic personality disorder – diagnosis code 301.81 in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, fourth edition – the craziness of the moment. And who among us has not proudly copped to our own ‘OCD’ or ‘ADD,’ deemed a mercurial sibling ‘seriously bipolar,’ written off an erratic ex as ‘obviously borderline,’ or nodded as a laid-off friend pronounced his former boss a ‘textbook sociopath’? Lately, a new kind of head case stalks the land – staring past us, blurting gaucheries, droning on about the technical minutiae of his boring hobby. And we are ready with our DSM codes: 299.00 (autistic disorder) and 299.80 (Asperger’s disorder).

[…] Such elasticity is nowhere so relevant as at the fuzzy, ever-shifting threshold where clinical disorder shades into everyday eccentricity. The upper end of the spectrum is the liminal zone where Aspies, as people with Asperger’s call themselves, reside.

But this is not a story about Asperger’s, autism, or the spectrum […]

It is, instead, a story about ‘Asperger’s,’ ‘autism,’ and ‘the spectrum’ – our one-stop-shopping shorthand for the jerky husband, the socially inept plutocrat, the tactless boss, the child prodigy with no friends, the remorseless criminal. It’s about the words we deploy to describe some murky hybrid of egghead and aloof.

Benjamin Wallace

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While delving into discussions on neurodiversity, I came across fanciful lists of fictional characters headcanoned as autistic. Character X strives for justice: they are autistic. Character Y likes reading alone: they are autistic. Character Z is passionate and talkative: they are autistic. In fact, any character even slightly atypical/loner/enthusiastic is likely to be promptly declared as having autism. This is how I found out that the main characters in My Little Pony were autistic, because they all had significant interests and plenty to learn about friendship and social relationships. My god. Is autism supposed to be the sole reason people have any depth at all?

La Chouette

(translated by Axelle Ezhr)

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[I]t has become fashionable in some circles to describe the spectrum as the very womb of modernity.

[…]

The same rose-colored impulse has driven an Aspie wave of revisionist psychopathography, in which such diverse historical figures as Thomas Jefferson, Orson Welles, Charles Darwin, Albert Einstein, Isaac Newton, Andy Warhol, and Wolfgang Amadeus Mozart are supposed to have been residents of the spectrum.

The time-traveling diagnoses often feel like cloud-reading – the case for Darwin as Aspie, as set forth in Genius Genes: How Asperger Talents Changed the World, relies on diagnostic bullet points: his childhood as ‘something of a loner,’ his ‘obsession’ with nature, his routine of counting the laps of his nightly walks in later life.

Benjamin Wallace

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People write characters based on personal experience, stereotypes, and personal ideas of what seems interesting. Unless you are a hermit, you’ve met multiple autistic people. (You may have thought they were ‘quirky’ or ‘very introverted’ or ‘stereotypical engineers.’)

You’ve read or watched media with characters based off of autism stereotypes. They’re ‘geeky,’ ‘awkward,’ or ‘free-spirited.’ […]

Some of these characters are stated to be autistic. Other times the authors dodge the question to avoid needing to write a well-researched and responsible portrayal. Other times the writers wanted to write someone ‘quirky’ and didn’t realize that their idea of ‘quirky’ looks very autistic.

You can read or watch media with autistic or autistic-coded characters. You can meet autistic people whether you know they’re autistic or not. And when you write about interesting people, you’ll probably aim for writing people who are a little unusual. […]

Luna Rose

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Autistic Representation and Real-Life Consequences: An In-Depth Look

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When you are an unusual person, especially if you are disabled, people will often tell you that they “want to hear your story”.   

Often, it’s not really your story that they want to hear. Often they have a story in mind that they want, and they want it to come out of your mouth in order to validate their theories about people like you. […]

Ruti Regan

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Telling your story without being a self-narrating zoo exhibit

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