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Treatment

Whose

Parental poop talk is perhaps the most affectively loaded of all poop talk, in large part because it relates smearing, eating, and rectal digging in graphically humanizing terms. Someone has to clean it up. Someone has to act, to intervene.

The humanization in autism poop talk, of course, is rarely about the human whose poop has been thrust into the spotlight.

And, especially in the case of parent blogs and other digitally born life writing, poop talk is often divulged without the full and informed consent of the autistic person being depicted.

This isn’t to deny the dangers or stresses associated with a loved one’s ingestion of harmful bacteria, or the distress involved in attending to the spread of literal shit, or the community and support a parent might garner from sharing intimate stories online.

My point, rather, is that these narratives are shittier than the shit they claim to represent. These are shitty narratives – rhetorical commonplaces that author autistic people as victim-captives of a faulty neurology, as rhetorically degraded and rhetorically suspect.

In these constructions, our shit holds more rhetorical power than we do.

Melanie Yergeau

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The idea behind “behavior is communication” is a powerful one

It is the idea that disabled people – even severely disabled people without the ability to reliably communicate through language – have perspectives, thoughts, and desires all their own and have the right to have those around them understand and respect it.

The sentiment is that a person never does anything for “no reason” […] The sentiment is also that there is almost no case where someone has “no way” of communicating distress, discomfort, etc

I want to be perfectly clear: I completely support this sentiment. I agree with it entirely.

But, and here is where my issues with the phrase begin, sometimes behavior is not communication.

What it means is that not everything I do – or any other person with a disability does – centers around you and trying to impart information to you and trying to get you in particular to do something. And this one of my problems with the phrase “behavior is communication”: it is very self-centered.

By re-framing someone’s actions as “trying to communicate something to me,” you are basically writing their entire existence to center on you – your actions, your thoughts, your feelings.

And the fact is, someone else’s life does not center on you. It centers on them […]

ischemgeek

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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 – Streaks (Part 3)

When social communication fails, this does not mean the person we are trying to communicate with, trying to reach intersubjectivity with, trying to extend our own agency with… does not have a mind, does not have agency, is not human. What we think of as the ability to mentalise, to ‘read someone’s mind’ then, is perhaps the rather less impressive coincidence of happening to possess a similar mind, and what we think of as intimacy and a shared-humanity is nothing more than mirror-gazing.

Sophie Vivian

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If we start from the assumption that neurotypicals are ‘normal’, and Autistics are ‘disordered’, then poor connections between neurotypicals and Autistics inevitably get blamed on some ‘defect’ or ‘deficit’ in Autistics. If an Autistic can’t understand a neurotypical, it’s because Autistics have empathy deficits and impaired communication skills; if a neurotypical can’t understand an Autistic, it’s because Autistics have empathy deficits and poor communication skills. All the frictions and failures of connection between the two groups, and all the difficulties Autistics run into in neurotypical society, all get blamed on Autism.

Nick Walker

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But the way that things like this normally go? […] When nonautistic people can’t read autistic people, it’s either because nothing is there to read (we’re just assumed not to be giving off nonverbal cues because the cues we give off aren’t always the same as nonautistic people), or because autistic people have a global social skills deficit […] Even though it’s the exact same problem going in both directions: A difficulty reading people whose experience of the world fundamentally differs from your own, which may be a nearly universal social skills deficit in both autistic and nonautistic people.

Mel Baggs

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No one is born knowing the rules. Everyone has to learn the rules, and everyone has to learn some of the rules explicitly. […]

For neurotypical people, the need to learn social skills [e.g.: in business, in personal relationships, and in the area of disability] is treated as normal, expected, and honorable.

For autistic people, our need to learn social skills is treated as disgusting, defective, and in need of normalizing therapy.

Ruti Regan

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Stop romanticizing neurotypicality

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Learning to be good at social interactions isn’t a matter of Learning the Rules; it’s a matter of learning to develop your judgement.

Ruti Regan

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I don’t think social skills exist. Or, if I do, I think they exist like God exists – in everyone. They just may not always be apparent. […] Social skills are not contained in a person – they require the right other person.

With work, I think a lot of people can learn to develop their mindfulness and modulation skills so that they can have good social skills (i.e., capacity to connect) with more people – or, so that more people can have good social skills with them. It’s the same thing.

Some people – disabled or not – may not be able to learn how to do that, but they will still sometimes meet a person who is exactly like them, or who is very good at mindfulness and modulation, and they will have good social skills when they are with that person.

Other people will just not let other people in. […] Such people may have good social skills when interacting with people who aren’t different. But with people who are different, they [as well as the person who is different from them] will always have no social skills […]

Amanda Forest Vivian

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Categories
Definitions & Characteristics

Atmosphere – Streaks (Part 2)

 

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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