Atmosphere – Rays (Part 3)

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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.

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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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Atmosphere – Streaks (Part 2)

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Language was built mostly by non-autistic people […] and my biggest frustration is this:  the most important things about the way I perceive and interact with the world around me can only be expressed in terms that describe them as the absence of something important.

The absence of speech.  The absence of language.  The absence of thought.  The absence of movement.  The absence of comprehension.  The absence of feeling.  The absence of perception.

Focusing on absence is the easiest way to describe the presence of something much more important to me than what is absent. Many autistic people have even applied these words to themselves. Some of us do this knowing full well that there is so much more that we cannot say. Others are fooled by the language itself into a state of  “Nothing to see here; move along now.”

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giving everything

Jim Sinclair (1987) […] wrote [in an] essay on xyr personal definition of sexuality,

Sexuality is when someone tells me that I’m not whole, that my personhood is incomplete, that a relationship in which I give everything I have is not “full.” It is hearing that because I have no sexual feelings, I have no feelings; that because I do not feel love in my groin, I cannot feel love at all. It is when someone who has not even bothered to look at my world dismisses it as a barren rock. It is being called inferior to “someone who is human.” It is the denigration of my experiences, my feelings, and my self. It is when my unique faculties are thrown back at me as hopeless inadequacies. Sexuality is reproach.

Substitute language for sexuality and you get closer than any other author I have read to how I feel when my deepest and most profound experiences are described purely as the lack of language, the lack of thought, even the lack of a soul.

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nowhere but the sky

[…]

Not all of [my forms of communication] communicate everything that typical languages communicate, but I don’t see any reason they should have to.

They are rich and varied forms of communication in their own right, not inadequate substitutes for the more standard forms of communication,

and like all forms of communication, some parts of them came naturally to me and other parts I had to learn. Having to learn them doesn’t make them any less real or significant than someone’s native language, which they had to learn in childhood.

To me, typical language takes place in the clouds,

and I have to climb or fly up there just to use and understand it. This is exhausting no matter how fluent I sound or how easy I make it look.

The sky will always be a foreign country to me.

Sometimes it feels more like I am throwing words up into the clouds but am too wiped out to fly up or even look up with a telescope to figure out what is going on there.

To use my more natural means of communication, I don’t have to leave the ground at all.

What has come as a surprise to me

is that no matter how consistent I am on the ground, many people measure me by my ability to hurl myself into the sky, whether with respect to language or some other fleeting and insubstantial thing that my body does.

So, if I have a certain level of expressive language, then I am expected to comprehend things even if I don’t,

and if I lack a certain expressive language, then my entire world is supposed to be empty and meaningless.

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about what is

I am telling you these things not to instruct you on the particulars of the mind of an autistic person, but rather to sketch out an image of how I perceive the world, and the richness and worthiness inherent in those ways of perceiving. It is anything but empty,

and it is so much more than a simple lack of something that other people have.

When I do scale the cliffs of language, people react to me strangely. They have lived on a mountain so long that they’ve forgotten the valley I come from even exists. They call

that valley

“not mountain”

and proclaim it dry, barren, and colorless, because that’s how it looks from a distance. The place I come from is envisioned as the world of real, valid people minus something. I know, of course, that the valley I live in is anything but desolate,

anything but a mountain minus the mountain itself. […]

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richness and rhythm

Someone once saw a photograph of me and said that he felt sorry because I would never know the richness of life that he knows. But I wonder if he is capable of looking around and […] understanding my kind of beauty […]

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Amanda Baggs

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Atmosphere – Streaks (Part 1)

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When we describe autism in terms of binaries, discourse communities, or circles, we construct a very unreal, [very black and white,] very us/them reality. […]

The typical autism essay, ironically, often proclaims that autism cannot be placed in a box, all the while concurrently placing autistics in boxes – LFA, HFA, mild, severe, verbal, nonverbal, etc.

And, I would also posit that autism should not be (because it cannot be) contained within tidied-up circles, which, despite being round, are themselves boxlike.

Discourse community theories fail to account for how these circles get created, get named, get claimed, get dismantled. In effect, discourse communities largely render their users passive.

In “Hybrid,” Bizzell claims,

These elements [discourse conventions] are so powerful that the discourse could be said to take on a life of its own, independent of individual participants; it could be said, even, to ‘create’ the participants that suit its conventions by allowing individuals no other options if they wish to be counted as participants.

Per this logic, I have been passively constructed into autism – by discourse. I have been passively constructed into aspiedom – by discourse. My other autistic commonplaces – or identity markers – have also been shaped or spawned by discourses: stimdom, speechdom, lack-of-eye-contactdom, patterndom, take-everything-literally-and-then-somedom.

But discourse alone can’t name these things, can’t claim these things. These facets of me, the diverse facets of other autistic individuals, of human individuals – autistic cousins or not – only fit within these circles because someone has squished them there, has proclaimed generalization as the new world order.

Low-functioning autism exists because the people who write the typical autism essay say it does: they make the circles; the circles themselves don’t independently create themselves; the circles aren’t material objects that exist or breathe or birth or contain people, all neatly sorted; the circles have human help. While I like to objectify humans and categorize stuff [very much], circles alone just don’t do the trick.

Melanie Yergeau

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There are many autistic people whose best method of communication is nonverbal. By which I mean, not speech, not writing. […]

Most people don’t know this because the current theories of autism all involve us being terrible at nonverbal communication. By which people mean, terrible at one specific kind of nonverbal communication that most nonautistic people are good at.

So for many of us – nonverbal communication, and the world of things outside of words, are our best way of communicating. Whether we can also use words or not. […]

It’s true that many people who are thought not to be able to use or understand language, actually are. And it’s terrible that they are overlooked. But in their desire not to overlook such people, many people claim that all disabled people who can’t communicate through speech fall under this umbrella. And that’s simply not true. In order to communicate with people who will never use words, you have to learn their language.

Mel Baggs

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‘Autism steals their voices.’

The idea of “voicelessness” presents itself as a convenient vehicle to get from autism to (living) death.

Voicelessness, here, does not refer primarily to literal variations of mutism […]

To be a voiceless autistic person does not entail an incapability of using language, but rather, an all-encompassing credibility gap.

Are autistic people, after all, expressing themselves, or merely their symptoms? Are they themselves expressing, or is autism? […]

When autism speaks, autistic people do not.

Voices here are only reserved for native speakers of a particular kind of symbolic language.

This language assumes and creates a normative, human subject, one who both comprehends and is comprehensible to other humans.

The faith […] is put in a shared, normative language, as a tool to fathom oneself and other people […]

This mechanism, while steeped in hyperbolic doubt, is intertwined with an essentialist humanism.

If the symbolic connects all humans to a network of intelligibility, the subjects who fall outside of this network must not be fully human.

Anna N. de Hooge

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Atmosphere – Breeze

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[R]ight from the start, from the time someone came up with the word ‘autism’, the condition has been judged from the outside, by its appearances, and not from the inside according to how it is experienced.

Donna Williams

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On how autistic people have to waste so much time trying to explain that our actions and behaviors don’t necessarily mean what other people assume they mean. And how people will actually argue with us about what our behaviors mean, because they erroneously believe body language and psychology are universal and are arrogantly intent on projecting the meaning of their own typical behaviors onto everyone else.

Twilah Hiari

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We say a child has autism if he displays a combination of traits and behaviours that are deemed to be problematic […] Professionals observe these ‘autistic behaviours’ and then assess the people who display them by using a sort of circular reasoning: Why does Rachel flap her hands? Because she has autism. Why has she been diagnosed with autism? Because she flaps.

Barry M. Prizant

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But it’s the research with typically developing babies that truly suggests we should take social attention theories of autism with a large dose of salt.

Too often, researchers assume a specific trait, such as social disability in autism, and then reach backwards looking for something to explain it. Or, they might see two traits – social disability and avoidance of eye contact – and link them together, because intuitively, eye contact seems related to social functioning. This is not good science, and the flaws of this approach become especially obvious when it is done without reference to how the trait [for instance, social (dis)ability] typically develops, as happened here.

Emily Morson

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For seventy years (at least), people have been making assumptions about autistic people based on outward behaviour.  Even the diagnostic criteria for autism is based on what is easily observable by an onlooker. They think that the stranger we act, the ‘more autistic’ we are.

C.L. Lynch

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Autistic being is predicated on un-being. In order to claim an emotion, we need to have it empirically validated.

[…]

An autistic person cannot experience abuse, cannot feel her body being shoved against the cold wall of a hospital psych ward – an autistic person cannot experience systemic violence unless a non-autistic person validates those claims.

Melanie Yergeau

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In my experience, the autism spectrum diagnostic criteria are frustratingly incomplete.  They paint a picture of that which can only be seen on the outside, by an observer who knows nothing about the firsthand experience – I.e., “what it’s like” to actually be on the spectrum.

Laina

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