Categories
Definitions & Characteristics

Atmosphere – Rays (Part 2)

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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1

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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2

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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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 – 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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Categories
Definitions & Characteristics

Atmosphere – Breeze

[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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