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
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.
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.”
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.
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
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