Atmosphere – Rays (Part 2)

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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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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.

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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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Atmosphere – Rays (Part 1)

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[…] 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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Atmosphere – Snowflakes (Part 2)

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[…] 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

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[…] 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

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@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

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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

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

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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

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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

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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

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Atmosphere – Silhouette (Part 1)

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Having an {autism}-like syndrome does not give you {autism} […] Having a big belly does not make you pregnant.

Partial quote, David Schnarch

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If the DSM-IV criteria are taken too literally, anybody in the world could qualify for Asperger’s or PDD-NOS.

Catherine Lord

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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.

Lynne Soraya

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[The loss of the autism diagnosis] probably reveals more about the weaknesses of a definition of autism based entirely in deficits rather than in core processing differences.

chavisory

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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.

prayingground

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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.

Simon Baron-Cohen

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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.

Nat

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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.

C.L. Lynch

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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.

Out of context, intersex-ionality

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