Atmosphere – Rays (Part 2)

Previous

✧

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.

Gill Loomes

.

❁

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

.

✧

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.

.

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

.

❁

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

.

Next

Atmosphere – Streaks (Part 3)

Previous

❁

When social communication fails, this does not mean the person we are trying to communicate with, trying to reach intersubjectivity with, trying to extend our own agency with… does not have a mind, does not have agency, is not human. What we think of as the ability to mentalise, to ‘read someone’s mind’ then, is perhaps the rather less impressive coincidence of happening to possess a similar mind, and what we think of as intimacy and a shared-humanity is nothing more than mirror-gazing.

Sophie Vivian

.

❁

If we start from the assumption that neurotypicals are ‘normal’, and Autistics are ‘disordered’, then poor connections between neurotypicals and Autistics inevitably get blamed on some ‘defect’ or ‘deficit’ in Autistics. If an Autistic can’t understand a neurotypical, it’s because Autistics have empathy deficits and impaired communication skills; if a neurotypical can’t understand an Autistic, it’s because Autistics have empathy deficits and poor communication skills. All the frictions and failures of connection between the two groups, and all the difficulties Autistics run into in neurotypical society, all get blamed on Autism.

Nick Walker

.

❁

But the way that things like this normally go? […] When nonautistic people can’t read autistic people, it’s either because nothing is there to read (we’re just assumed not to be giving off nonverbal cues because the cues we give off aren’t always the same as nonautistic people), or because autistic people have a global social skills deficit […] Even though it’s the exact same problem going in both directions: A difficulty reading people whose experience of the world fundamentally differs from your own, which may be a nearly universal social skills deficit in both autistic and nonautistic people.

Mel Baggs

.

❁

No one is born knowing the rules. Everyone has to learn the rules, and everyone has to learn some of the rules explicitly. […]

For neurotypical people, the need to learn social skills [e.g.: in business, in personal relationships, and in the area of disability] is treated as normal, expected, and honorable.

For autistic people, our need to learn social skills is treated as disgusting, defective, and in need of normalizing therapy.

Ruti Regan

.

✭

Stop romanticizing neurotypicality

.

❁

Learning to be good at social interactions isn’t a matter of Learning the Rules; it’s a matter of learning to develop your judgement.

Ruti Regan

.

❁

I don’t think social skills exist. Or, if I do, I think they exist like God exists – in everyone. They just may not always be apparent. […] Social skills are not contained in a person – they require the right other person.

With work, I think a lot of people can learn to develop their mindfulness and modulation skills so that they can have good social skills (i.e., capacity to connect) with more people – or, so that more people can have good social skills with them. It’s the same thing.

Some people – disabled or not – may not be able to learn how to do that, but they will still sometimes meet a person who is exactly like them, or who is very good at mindfulness and modulation, and they will have good social skills when they are with that person.

Other people will just not let other people in. […] Such people may have good social skills when interacting with people who aren’t different. But with people who are different, they [as well as the person who is different from them] will always have no social skills […]

Amanda Forest Vivian

.

Atmosphere – Streaks (Part 1)

Previous

❁

When we describe autism in terms of binaries, discourse communities, or circles, we construct a very unreal, [very black and white,] very us/them reality. […]

The typical autism essay, ironically, often proclaims that autism cannot be placed in a box, all the while concurrently placing autistics in boxes – LFA, HFA, mild, severe, verbal, nonverbal, etc.

And, I would also posit that autism should not be (because it cannot be) contained within tidied-up circles, which, despite being round, are themselves boxlike.

Discourse community theories fail to account for how these circles get created, get named, get claimed, get dismantled. In effect, discourse communities largely render their users passive.

In “Hybrid,” Bizzell claims,

These elements [discourse conventions] are so powerful that the discourse could be said to take on a life of its own, independent of individual participants; it could be said, even, to ‘create’ the participants that suit its conventions by allowing individuals no other options if they wish to be counted as participants.

Per this logic, I have been passively constructed into autism – by discourse. I have been passively constructed into aspiedom – by discourse. My other autistic commonplaces – or identity markers – have also been shaped or spawned by discourses: stimdom, speechdom, lack-of-eye-contactdom, patterndom, take-everything-literally-and-then-somedom.

But discourse alone can’t name these things, can’t claim these things. These facets of me, the diverse facets of other autistic individuals, of human individuals – autistic cousins or not – only fit within these circles because someone has squished them there, has proclaimed generalization as the new world order.

Low-functioning autism exists because the people who write the typical autism essay say it does: they make the circles; the circles themselves don’t independently create themselves; the circles aren’t material objects that exist or breathe or birth or contain people, all neatly sorted; the circles have human help. While I like to objectify humans and categorize stuff [very much], circles alone just don’t do the trick.

Melanie Yergeau

.

❁

There are many autistic people whose best method of communication is nonverbal. By which I mean, not speech, not writing. […]

Most people don’t know this because the current theories of autism all involve us being terrible at nonverbal communication. By which people mean, terrible at one specific kind of nonverbal communication that most nonautistic people are good at.

So for many of us – nonverbal communication, and the world of things outside of words, are our best way of communicating. Whether we can also use words or not. […]

It’s true that many people who are thought not to be able to use or understand language, actually are. And it’s terrible that they are overlooked. But in their desire not to overlook such people, many people claim that all disabled people who can’t communicate through speech fall under this umbrella. And that’s simply not true. In order to communicate with people who will never use words, you have to learn their language.

Mel Baggs

.

❁

‘Autism steals their voices.’

The idea of “voicelessness” presents itself as a convenient vehicle to get from autism to (living) death.

Voicelessness, here, does not refer primarily to literal variations of mutism […]

To be a voiceless autistic person does not entail an incapability of using language, but rather, an all-encompassing credibility gap.

Are autistic people, after all, expressing themselves, or merely their symptoms? Are they themselves expressing, or is autism? […]

When autism speaks, autistic people do not.

Voices here are only reserved for native speakers of a particular kind of symbolic language.

This language assumes and creates a normative, human subject, one who both comprehends and is comprehensible to other humans.

The faith […] is put in a shared, normative language, as a tool to fathom oneself and other people […]

This mechanism, while steeped in hyperbolic doubt, is intertwined with an essentialist humanism.

If the symbolic connects all humans to a network of intelligibility, the subjects who fall outside of this network must not be fully human.

Anna N. de Hooge

.

Next

Atmosphere – Snowflakes (Part 2)

Previous

❁

[…] You describe introverts becoming rigid under stress.

Autistics who are under constant, intense pressure (as are many, by well-meaning parents and others who want them to function) become very rigid and black/white in their thinking, this is then taken as an inherent part of autism. If they are given less stress, their thinking ‘magically’ becomes more flexible.

Ettina

.

❁

[…] The closest analogy I can make is that what happens prior to initiation is like standing on the edge of a swimming pool with the intention of jumping in.

You know, that few minutes where you dip a toe in, check the temperature, adjust your suit and goggles, comment on how cold it looks, do a few arm windmills, bounce up and down, take a deep breath, then another. There’s no real point to all of those actions and the jumping in is inevitable. But not quite yet.

Cynthia Kim

.

❁

@neuroemergent_insurgent has an alternative perspective on EF (executive function).

She posits that EF is a set of values, not a set of skills.

Emmeline Tyler

.

❁

Autism parents often hear from the professionals that “kids with autism thrive on routine.” On the surface this appears to be true. Autism kids are drilled to comply with a certain routine and when the routine changes, they react loudly and sometimes physically. Ergo, they must need routine.

In my opinion, professionals like routine because it makes their jobs easier. I am not convinced that encouraging such rigidity is in a child’s best interest.

Amy Yardley

.

✦

To comply with a certain routine and needing to be prepared for something are not necessarily the same thing.

.

❁

is change a problem for autistic people?

They say Autistic people don’t cope well with change and unexpected events, insist on routine, and can be oppositional if they don’t get what they prefer.

It’s just not that simple.

Autistic people do struggle with change and unpredictability. But it’s not just because we don’t like change.

We struggle with change because of what it costs us in terms of increased demand on our sensory system, executive function resources and how it impacts on our energy budget.

If we are well supported during a change or unexpected event we find it much easier to navigate and to manage the increased demands the new situation places on our bodies, our processing and our emotional responses to all that.

Michelle Swan

.

❁

Self harm is complex and full of contradictions. Something I often remind people is that it is common in the animal kingdom. Animals and birds experiencing inescapable pain – loneliness, captivity in an unsuitable cage: too small, too stressful, too close to predator species, overcrowded, or physically ill and suffering, many will head bang, pluck their own feathers, chew or lick off their skin, tear out nails and claws. On one level, self harm is a nearly universal response to certain kinds of suffering. This is the context, the broad picture. We are mammals, part of the world, nervous systems wired this way.

Zooming right in, we get vast diversity in who, how, and why. Some find a single cause and many more a complex web of reasons, needs, struggles. […]

What it is not, and has never been, is the circle I hear so often. They self harm because they are mentally ill: we know they are mentally ill because they self harm.

We self harm because something is wrong, because of pain, because it is the best way we’ve found to meet a need we don’t understand or accept or can’t express.

Sarah K Reece

.

❁

In many instances, the discourse(s) of involuntarity governs autism as a condition. Most obviously, autism is not a voluntary condition – one doesn’t choose autism, per se.

Of course, framing autism as a neurological involuntarity is a false construct. After all, does anyone really choose their neurology? And yet, even though neurotypicality is as much an involuntarity as is mental disability or neurodivergence, the construct of involuntarity is culturally inscribed into autism as a condition. Autistics wrench and scream and rock their bodies, and they have no choice; they have no agency; they project little to no rhetorical or narrativistic purpose.

Within this passivity-centric framework, involuntarity might encompass shit smearing or body rocking; it likewise encompasses any act of communication, or what white-coat types might otherwise reduce to inappropriate behaviors; it encompasses embodiment; it encompasses how one dwells in the world. It signifies a lack of purpose, a lack of audience awareness, a lack of control over one’s own person – and under the banner of person, I’m including how we conceptualize mind, body, being, and self-determination. […]

Melanie Yergeau

.

Next