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 – Snowflakes (Part 3)

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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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Atmosphere – Snowflakes (Part 2)

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[…] You describe introverts becoming rigid under stress.

Autistics who are under constant, intense pressure (as are many, by well-meaning parents and others who want them to function) become very rigid and black/white in their thinking, this is then taken as an inherent part of autism. If they are given less stress, their thinking ‘magically’ becomes more flexible.

Ettina

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[…] The closest analogy I can make is that what happens prior to initiation is like standing on the edge of a swimming pool with the intention of jumping in.

You know, that few minutes where you dip a toe in, check the temperature, adjust your suit and goggles, comment on how cold it looks, do a few arm windmills, bounce up and down, take a deep breath, then another. There’s no real point to all of those actions and the jumping in is inevitable. But not quite yet.

Cynthia Kim

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@neuroemergent_insurgent has an alternative perspective on EF (executive function).

She posits that EF is a set of values, not a set of skills.

Emmeline Tyler

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Autism parents often hear from the professionals that “kids with autism thrive on routine.” On the surface this appears to be true. Autism kids are drilled to comply with a certain routine and when the routine changes, they react loudly and sometimes physically. Ergo, they must need routine.

In my opinion, professionals like routine because it makes their jobs easier. I am not convinced that encouraging such rigidity is in a child’s best interest.

Amy Yardley

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To comply with a certain routine and needing to be prepared for something are not necessarily the same thing.

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is change a problem for autistic people?

They say Autistic people don’t cope well with change and unexpected events, insist on routine, and can be oppositional if they don’t get what they prefer.

It’s just not that simple.

Autistic people do struggle with change and unpredictability. But it’s not just because we don’t like change.

We struggle with change because of what it costs us in terms of increased demand on our sensory system, executive function resources and how it impacts on our energy budget.

If we are well supported during a change or unexpected event we find it much easier to navigate and to manage the increased demands the new situation places on our bodies, our processing and our emotional responses to all that.

Michelle Swan

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Self harm is complex and full of contradictions. Something I often remind people is that it is common in the animal kingdom. Animals and birds experiencing inescapable pain – loneliness, captivity in an unsuitable cage: too small, too stressful, too close to predator species, overcrowded, or physically ill and suffering, many will head bang, pluck their own feathers, chew or lick off their skin, tear out nails and claws. On one level, self harm is a nearly universal response to certain kinds of suffering. This is the context, the broad picture. We are mammals, part of the world, nervous systems wired this way.

Zooming right in, we get vast diversity in who, how, and why. Some find a single cause and many more a complex web of reasons, needs, struggles. […]

What it is not, and has never been, is the circle I hear so often. They self harm because they are mentally ill: we know they are mentally ill because they self harm.

We self harm because something is wrong, because of pain, because it is the best way we’ve found to meet a need we don’t understand or accept or can’t express.

Sarah K Reece

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In many instances, the discourse(s) of involuntarity governs autism as a condition. Most obviously, autism is not a voluntary condition – one doesn’t choose autism, per se.

Of course, framing autism as a neurological involuntarity is a false construct. After all, does anyone really choose their neurology? And yet, even though neurotypicality is as much an involuntarity as is mental disability or neurodivergence, the construct of involuntarity is culturally inscribed into autism as a condition. Autistics wrench and scream and rock their bodies, and they have no choice; they have no agency; they project little to no rhetorical or narrativistic purpose.

Within this passivity-centric framework, involuntarity might encompass shit smearing or body rocking; it likewise encompasses any act of communication, or what white-coat types might otherwise reduce to inappropriate behaviors; it encompasses embodiment; it encompasses how one dwells in the world. It signifies a lack of purpose, a lack of audience awareness, a lack of control over one’s own person – and under the banner of person, I’m including how we conceptualize mind, body, being, and self-determination. […]

Melanie Yergeau

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Next

Truth Beacon – Experiences

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The scientific literature is accurate, as far it goes. Multiple sclerosis results in progressive disability (there are scales for measuring this) or loss of function (you don’t need scales for this). But science is empirical, confined to the observable sphere. Science doesn’t know what anything feels like, the nature of anything. […]

Out of context, Paraic O’Donnell

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disability is a complex identity {if it even is _{(considered as)} one}, and disabled people are multifaceted non-monolithic human beings

Partial quote, Wendy Lu

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The moment you forget that you can make mistakes, you are able to do great harm to the people you base your ego on understanding. […]

Viewing yourself as Good With an entire category of people opens you up to massively egotistical mistakes that lead you down the road to outright physical and emotional abuse.

The best way to approach learning about cats is with a combination of respect and humility. Know that you’re going to mess up, but don’t focus on it so hard that you don’t even try. […]

Out of context, Mel Baggs

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Some of the better research I’ve been part of has given me space somewhere to share what I think and feel or how my experiences do or don’t fit. It also follows up in some way with the conclusions. There’s a relationship, a sense of reciprocity at least in the process even if we don’t agree at all about anything else. It doesn’t have to be participatory to be collaborative in that sense. Nor does participatory research bypass issues of exploitation or harm in and of itself. The nature of community is the diversity of perspectives and voice – it is rare to be able to accomodate each of them.

The other kinds of research (and I include interview here) feel exploitative. My experiences are collected as evidence of ideas I don’t agree with and contorted to fit arguments that don’t include me. Or they are simply inept, using my time to educate themselves on matters they haven’t bothered to read about.

Sarah K Reece

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It’s perfectly okay to cherry pick ideas and strategies from different – even conflicting – frameworks to create something individual and effective for yourself/selves.

The Dissociative Initiative

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[…] assume they are a person, and remember what you don’t know.

Julia Bascom

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In the same series:

Truth Beacon – Research & Authority

Truth Beacon – Advocacy