Atmosphere – Rays (Part 2)

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Before, I was me and autism was autism.

After learning that I have autism, I was no longer me and autism was no longer a label applied to others.

Suddenly, I was autism and autism was me.

After, everything I do, say, think, feel, and experience is autisticized. […]

Out of context, Cynthia Kim

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The problem lies not in the pervasiveness of autism in me as an individual, but in the pervasiveness of its use as an ‘explanation’ at the level of specific, observable behaviour – an account for everything that I am and everything that I do.

Gill Loomes

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They were conferring any and all agency to my supposed disembodiment, or my supposed disenmindment. I didn’t want this because I was autistic. I didn’t want that because I was autistic.

This is, to the best of my memory, when their ventriloquism started.

Suddenly, the experts claimed, I wasn’t talking. God, no.

“That’s your depression talking,” they explained. “That’s your autism talking. That’s your anxiety talking.

Really, it’s anything but you talking.”

Regardless of what I said, it was my autism saying it. My body became site for ventriloquist rhetoric, spewings that never were.

What did they write in their charts? I imagined […] that they mapped the ebbs and flows of my echolalia, in echolalia.

“That’s just her autism talking,” the clipboard repeats, like a running toilet. “That’s just her autism talking, talking, talking. That’s just her – autism talking.”

Melanie Yergeau

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Whenever we talk about ourselves we tell stories.

Without these stories, our experiences would sit, unconnected.  They would be like a thousand tiny beads.  Telling our story helps us to weave connections between these beads.  It helps us link them together with different threads, to create a tapestry full of meaning.

This is a fluid and continually evolving process.

Each new experience, interaction or connection reveals new aspects of the picture we are continually creating.  It shifts and changes as we, ourselves, shift and change.

Reflecting our experience of the world, this process can be terrifying and confusing, as well as beautiful and rewarding.

***

In some settings, something profound happens to these stories.

It’s as if someone takes your tapestry, and labels it as defective.  Then, they give you the pattern you need to rectify your mistakes.

Unquestioningly, you unpick your tapestry.  You weave, instead, the beads of your tapestry together to form the pattern they gave you.  You weave their pattern, and you form the picture they showed you.

With each stitch, those around you nod and praise your keen insight.

After a while you forget you ever had a story of your own.

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For a very long time, you had been weaving your story your entire life.

At a point in your journey in life, this story overwhelmed you.

At this point, you were given an alternative – a new pattern to help impose some order on the chaos.  You were offered new, independently created stories that would explain your sometimes difficult, challenging experiences.

You met many kind people who gently reassured you that they knew exactly how to tell your story.

On adopting their perspective you felt relief.  It stripped your experiences of their power; it removed any need to further explore their meaning.

Content that your tapestry was complete, you put down your needle.

You focused on living with the picture you now knew you had.

***

Of all the beliefs that you have had about you experiences, the belief that has replaced your previous tapestry was the most damaging.

In adopting the story that others told about you, and abandoning your own sense-making process, you held on to a belief that rendered your experiences irrelevant.

As a reader, one may feel this was the lesser of two evils.  After all, the story you weaved for yourself overwhelmed you, to great extents.

Still, this belief was woven from the beads of your experience.  It contained truths of things you were unable to face.  It was something that, with the right support, you could work through and understand.

The perspective they gave you, however, led to a dead end.

***

You sometimes reflect on what it was that allowed their story to replace yours.

Every person that spoke to you about the picture of your tapestry only served to reinforce that which you were already primed to accept.  That, among other things, you were flawed, and vulnerable, and that your experience of the world was mistaken.

Their story offered you both condemnation and salvation.

It gave you validating answers and explanations for some of your unsolved beliefs and experiences.  It promised you the gift of living well with your reality, as long as you weaved and stitched your story and your experiences only in the ways they – wisely, unmistakably, reliably – pictured and weaved those (your) experiences.

It’s a powerful and seductive story, and one that has taken you a very long time to untangle.

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Adapted from a post by Rachel Waddingham

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iatrogenic effects […] power imbalances, vulnerability, adaptation, and living to labels.

[R]esearch consistently shows that people live to their labels – children treated as smart do great in tests, those treated as truants act out, those treated as caring are kind.

We know this, and have demonstrated [over and over again] the powerful effects of labels, obedience, authority, and adaptation […]

Sarah K Reece

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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 – Snowflakes (Part 1)

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Yes, I have social problems, but honestly I feel that the idea that autism is a ‘social disorder’ is putting the cart before the horse, and really missing the point. Autism is primarily a sensory and information processing and filtering difference, and the descriptions of autistics written by allistics are simply descriptions of the differences that allistics can see, and think are important.

Kirsten Lindsmith

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Differences in sensory processing do of course affect what might be called ‘social skills,’ for example many autistic people don’t integrate incoming visual information in a way that allows them to easily notice the tiny subtle differences in body position and facial expression that are used in neurotypical communication […]

Sensory integration also affects motor movements, and so many autistic people may not show the body language that non-autistic people expect for the way they are feeling. […]

Quincy Hansen

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In recent years the narrative has shifted from saying that autistic people feel too little – usually due to a purported empathy deficit – to saying we feel too much.

Perhaps the most worrying thing here regards how this new framing leads to autistic suffering being blamed on autistic oversensitivity.

In this regard it is worth drawing attention to a form of psychological domestic abuse sometimes called ‘gaslighting’. What this refers to is the systematic undermining of the victim’s sense of reality in order to make them think the abuse is their fault rather than the fault of the abuser. Very significantly, one of the core ways to do this is for the abuser to convince the victim that they are just too sensitive, meaning that any hurt they feel is not down to their abusive environment but rather due to their own inability to cope with the world. […]

With this in mind, I am wary of all accounts that frame autistic suffering and disablement stemming from us being hyper-sensitive. Far from reversing it, all this does is make the pathologisation of autism more subtle, more hegemonic.

In fact, the issue is that the sensory world is designed for the neurotypical, and so has by and large failed to accommodate the autistic sensory-style. That is, whilst it is true that we suffer from ‘too much information’, this stems from the neurotypical-centric way in which the world is organised – not due to how we process the world as such.

Robert Chapman

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So I’m sort of bad at figuring out how I feel about things, or just how things are, objectively. This is probably due to growing up with gaslighting although I also think that not being able to identify your feelings is supposed to be normal for people with ASD.

Although maybe it’s normal for people with ASD as a result of gaslighting.

Amanda Forest Vivian

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[…] But it is also a context where many of the things – such as eye contact and physical contact – often used by parents to show affection for their children either panic us or cause us physical pain, and where our ‘emotional growth’ might be measured by others in terms of how much we can deaden our bodies and emotions and allow ourselves to be subjected to terror and pain on a regular basis.

Imagine growing up somewhere where to be hit upside the head and locked in a room with a large predatory animal are the two highest forms of affection, and your emotional development is gauged on how well you learn to put up with those situations.

To people who experience certain kinds of touch as pain and eye contact as a predator-style threat, that is some part of our experience growing up. And that is an experience we can have in the most loving and caring of families, if our families don’t understand what those experiences feel like to us (and not all of us show pain and discomfort by pulling away, either, so it’s not always possible to gauge our reactions by that sort of thing).

Mel Baggs

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Neurotypical kids’ social development is fostered by feedback from their parents, who mirror their behavior and thus model reciprocal interactions from an early age. As Morton Ann Gernsbacher and her colleagues pointed out, autistic babies don’t give the usual cues their parents are expecting, and the parents don’t necessarily mirror them or give them the social feedback that helps neurotypical babies.

So how much of an autistic person’s social disabilities come from their own characteristics, and how much from early differences in their interactions with caretakers?

Emily Morson

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culture, class and disability play such a huge role in how we show emotions

Mel Baggs

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Many autistic traits are a result of being so in tune with other people’s energy that it literally hurts.

Shutting down to others emotions and taking them on without discrimination are two sides of the same coin.

Briannon Lee

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Atmosphere – Silhouette (Part 2)

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Each individual who has an autism spectrum diagnosis got that diagnosis based on deficits. That isn’t good or bad, but rather, simply the way diagnosing works […] based on the social and expected norms exhibited by the majority of people.

Judy Endow

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[T]he way information is presented influences our judgement and decision-making: the framing effect. How we ‘frame’ information has an impact on how we treat it, and thus on outcomes. So if your research project is based on the assumption that your subjects have a disorder or a deficit, that presumption will be reflected in both your process and your results.

What we see in research involving autistic subjects is that autism is frequently framed as ‘non-neurotypical’, i.e. autistics are measured against people who are non-autistic and thus end up being defined by what they aren’t.

For a comparison, imagine a linguistic study of a Swedish-speaking community by French academics where the conclusion is “they can’t speak French”.

If ethnocentrism is judging another culture solely by the values and standards of one’s own culture, then what we often see in these papers is a kind of neurocentrism, judging another neurology by the capabilities and standards of one’s own neurology.

In regard to these research biases, it’s revealing to look at how the same academics frame outcomes differently depending on whether their studies involve autistic subjects or not. […]

So, if you’re non-autistic and more rational, it’s because you’re good at regulating your emotions.

But if you’re autistic and more rational, it’s because you’re deficit in recognising your emotions.

Peter

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Our current biomedical approach to autism, which scans, studies, and reports on autistic people in terms of their differences, deficits, and disorders is actually making autistic people’s lives more difficult and their futures bleaker because we’re teaching people that autistic people are not like us.

Karla McLaren

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The underlying attitude [of some professionals] sometimes appears to be: “How dare you continue to attempt to think for yourself when I am here before you with my obviously superior knowledge, status, judgment, and insight?”

Out of context, Lundy Bancroft

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[W]ithin psychiatric theory, it does not matter whether a psychological difference is considered ‘hyper’ or ‘hypo’: either way, it is taken to be a matter of pathologically falling outside the norm.

‘Too much’ may be different to ‘too little’, but it is still considered just as inherently bad.

Robert Chapman

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how do we measure Schizophrenia, Autism, ADD/ADHD, other than in juxtaposition to normal[?]

how does one quantify normal?

Jenna, Elijah, Tamarjay, Derrick

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