Categories
Treatment

Life

Life, in other words, is being made a condition of nonautism. And while life is always life, the condition of ‘life with’ autism comes to be immediately understood as a life that bears the origin of its own undoing. It is a life under threat and so is no kind of life at all. […] How, in other words, can advocacy live anything other than a (good, neoliberal, and necessarily nonautistic) life of fighting for – and so securing, attaining, recovering – the vital being of nonautism? How, when any alternative to the nonautistic life is so carefully and so thoroughly framed as not life at all?

Anne McGuire

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I interfere because I think you, and people like you, will benefit from hearing the perspective of the receiving end of those therapies and treatments. Because I think you should know red flags of abusive treatments. Because I think that you should be thinking about risks versus benefits, and what kinds of “benefits” are benefits you actually want, and what kinds of risks you’re willing to tolerate for what kinds of benefits.

I don’t want to call all the shots in your parent-child relationship. I want you to listen to those with relevant experiences – to me, to other autistic people, etc – and to think about what you’re doing. I want you to think about the potential consequences, about what’s best for your kid, and what is a true deal-breaker for you.

I want your generation to avoid making the same mistakes with your kids that my parents’ generation made with me. I want you to learn from their mistakes without having to repeat them yourself, and to make the best possible decisions for your kid.

And that’s why I “interfere.”

ischemgeek

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What is problematic in the drive for medical cure is its narrow, simple focus on the gains and benefits that cure may bring, disregarding its associated harms, risks, and disenabling effects.

It also closes off ways to support, in the present, ‘un-treated’ and ‘incurable’ lives, that is, people who have a disability or an illness, as well as people who refuse or cannot afford treatments. When bodies are pronounced ‘incurable,’ they are read as being in a condition of a ‘nonlife’ – without a future and denied meaning in the present. At the same time, cure denies a place for disability and illness as different ways of existing in the present. Cure discourses and imagery operate in political, moral, economic, and emotional realms that go beyond individual medical treatments and personal desires for remedy.

An emphasis on cure as the only path forward is damaging, because it obscures the fact that cure is always a multifaceted negotiation, often enabling and disabling at the same time, and may be accompanied by pain, loss, or death.

For many, cure demands that we suspend our living in the present and instead wait for a future without disabilities and illnesses, urging us to not live in the present.

Alison Kafer calls this temporal framing ‘curative time’:

“In our disabled state, we are not part of the dominant narratives of progress, but once rehabilitated, normalized, and hopefully cured, we play a starring role: the sign of progress, the proof of development, the triumph over the mind or body.”

[…]

Set against the impossibility of inhabiting the present, the promised transformation through cure is enticing enough to make losses and hastened death acceptable, even expected.

Kafer continues,

Within this frame of curative time, then, the only appropriate disabled mind/body is one cured or moving toward cure. Cure, in this context, most obviously signals the elimination of impairment but can also mean normalizing treatments that work to assimilate the disabled mind/body as much as possible.”

The curative drive also demands an approximation of normality through ‘habilitation’ (the acquisition of skills and abilities) and ‘rehabilitation’ (the regaining of skills and abilities that have been lost or impaired).

Eunjung Kim

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Categories
Treatment

Will

People do not only make evil choices when they are abused, in emotional crisis, or lacking resources. And people also live through unimaginably hard things and still actively make choices, in accordance with their beliefs and values, about what they will and won’t do to other people.

chavisory

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You realise […] that your Mom, all those years ago, was wrong.

Even if you leave aside your own experience, your own hunger for a life, and even if you accept that you represent the greatest mistake of her life,

you realise that her mistake

consisted not in failing to embrace your death, but in failing to free you from her insistence that life has to follow a specific path to be worth living, and to set you free to explore the possibility of your life.

She couldn’t have given you everything you needed or much of what you wanted. She didn’t have it to give.

But the insistence that if your life didn’t fit a certain pattern, it was not worth enduring … she could have chosen not to give you that.

Montgomery Cal

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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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