adaptation – Autism: Explorations

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.

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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.

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.

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

Atmosphere – Silhouette (Part 1)

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To claim that something is over-diagnosed implies that there is one true, proper rate of diagnosis. And that ain’t so. […] For a complex, multi-faceted neurological condition such as autism, these issues are compounded much, much more.

Even for many physical conditions, doctors wrangle over how to define the boundaries of a diagnosis.

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[…] I feel like this list [written by autisticality] is too vague and open, perhaps to the point that it’s not useful. (Barnum–Forer effect)

I’m sure nearly everyone meets at least a few of these traits, and in these criteria, there is no threshold given (e.g. a number of criteria you would meet in order to be ‘maybe autistic’ or ‘autistic’) to divide between ‘autistic’ and ‘non-autistic’ people.

Differentiating between ‘autistic’ and ‘not autistic’ is difficult however you divide it, but without a line, and using these criteria, it seems like everyone would fit into being autistic.

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[T]here is an overlap between people who end up with a diagnosis on the autism spectrum and the general population

[Here are the results of] a questionnaire that measures autistic traits in the population: on the left of the graph you see the familiar bell-shaped curve, or normal distribution, in the general population […] so it’s not that you have autism or you don’t, but that almost everyone in the population has some autistic traits and find themselves distributed somewhere on a spectrum.

On the graph you see the solid line where people have a diagnosis […] but there is that middle bracket of overlap – there isn’t a clear cut point where you can say that somebody who has a diagnosis of autism is clearly different from somebody who doesn’t so [it] reinforces the idea of individual differences in the population.

[…] although people with a diagnosis of more autistic traits there’s a substantial overlap and that actually it’s not your score on a diagnostic test that determines that you need a diagnosis, it’s actually your environment.

[T]here are people who score at exactly the same point in that grey zone in the middle and that some will have a diagnosis and some won’t and what determines that is whether you find yourself in an environment in which you can thrive and fulfil your potential – we can call it an autism-friendly environment – or if you find yourself in an environment in which the challenges are too great, and you begin to suffer and end up going to a clinic and seeking a diagnosis.

So it’s not your psychological make-up but the fit between you as an individual and your environment that determines if you end up with a diagnosis opening up the possibility that we can adapt the environment to make it easier or more difficult for people who potentially have autism to fit in.

Some will suffer in certain environments whereas others will manage because of environmental adaptations or simply a good fit between them and their environment.

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“Everyone’s a bit autistic, that’s why it’s called a spectrum.”

This is not what ‘autistic spectrum’ is meant to mean.

In fact only autistic people are on the autistic spectrum. If you’re ‘on the spectrum’ then you are autistic (or ‘have autism’, whichever is your preference), it is a spectrum of the people who are autistic.

Not autistic? Not on the spectrum.

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[A]utism is a collection of related neurological conditions that are so hard to pick apart that psychologists have stopped trying.

All autistic people are affected in one way or another in most or all of these boxes – a rainbow of traits. If you only check one or two boxes, then they don’t call it autism – they call it something else. […]

But if you have all of the above and more, they call it autism.

[…] in order for a person to be considered autistic, they must have difficulty in multiple categories.

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[I]t becomes a scramble to create weighted lists and say, “anyone who scores under 50 points is faking,” rather than trying to figure out why so many people are hurting in such similar ways, and being hurt in such similar ways, and then stopping those things from happening.

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