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 – Streaks (Part 3)

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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

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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

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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

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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

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Stop romanticizing neurotypicality

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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

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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

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Atmosphere – Snowflakes (Part 1)

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Yes, I have social problems, but honestly I feel that the idea that autism is a ‘social disorder’ is putting the cart before the horse, and really missing the point. Autism is primarily a sensory and information processing and filtering difference, and the descriptions of autistics written by allistics are simply descriptions of the differences that allistics can see, and think are important.

Kirsten Lindsmith

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Differences in sensory processing do of course affect what might be called ‘social skills,’ for example many autistic people don’t integrate incoming visual information in a way that allows them to easily notice the tiny subtle differences in body position and facial expression that are used in neurotypical communication […]

Sensory integration also affects motor movements, and so many autistic people may not show the body language that non-autistic people expect for the way they are feeling. […]

Quincy Hansen

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In recent years the narrative has shifted from saying that autistic people feel too little – usually due to a purported empathy deficit – to saying we feel too much.

Perhaps the most worrying thing here regards how this new framing leads to autistic suffering being blamed on autistic oversensitivity.

In this regard it is worth drawing attention to a form of psychological domestic abuse sometimes called ‘gaslighting’. What this refers to is the systematic undermining of the victim’s sense of reality in order to make them think the abuse is their fault rather than the fault of the abuser. Very significantly, one of the core ways to do this is for the abuser to convince the victim that they are just too sensitive, meaning that any hurt they feel is not down to their abusive environment but rather due to their own inability to cope with the world. […]

With this in mind, I am wary of all accounts that frame autistic suffering and disablement stemming from us being hyper-sensitive. Far from reversing it, all this does is make the pathologisation of autism more subtle, more hegemonic.

In fact, the issue is that the sensory world is designed for the neurotypical, and so has by and large failed to accommodate the autistic sensory-style. That is, whilst it is true that we suffer from ‘too much information’, this stems from the neurotypical-centric way in which the world is organised – not due to how we process the world as such.

Robert Chapman

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So I’m sort of bad at figuring out how I feel about things, or just how things are, objectively. This is probably due to growing up with gaslighting although I also think that not being able to identify your feelings is supposed to be normal for people with ASD.

Although maybe it’s normal for people with ASD as a result of gaslighting.

Amanda Forest Vivian

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[…] But it is also a context where many of the things – such as eye contact and physical contact – often used by parents to show affection for their children either panic us or cause us physical pain, and where our ‘emotional growth’ might be measured by others in terms of how much we can deaden our bodies and emotions and allow ourselves to be subjected to terror and pain on a regular basis.

Imagine growing up somewhere where to be hit upside the head and locked in a room with a large predatory animal are the two highest forms of affection, and your emotional development is gauged on how well you learn to put up with those situations.

To people who experience certain kinds of touch as pain and eye contact as a predator-style threat, that is some part of our experience growing up. And that is an experience we can have in the most loving and caring of families, if our families don’t understand what those experiences feel like to us (and not all of us show pain and discomfort by pulling away, either, so it’s not always possible to gauge our reactions by that sort of thing).

Mel Baggs

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Neurotypical kids’ social development is fostered by feedback from their parents, who mirror their behavior and thus model reciprocal interactions from an early age. As Morton Ann Gernsbacher and her colleagues pointed out, autistic babies don’t give the usual cues their parents are expecting, and the parents don’t necessarily mirror them or give them the social feedback that helps neurotypical babies.

So how much of an autistic person’s social disabilities come from their own characteristics, and how much from early differences in their interactions with caretakers?

Emily Morson

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culture, class and disability play such a huge role in how we show emotions

Mel Baggs

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Many autistic traits are a result of being so in tune with other people’s energy that it literally hurts.

Shutting down to others emotions and taking them on without discrimination are two sides of the same coin.

Briannon Lee

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Lines – Amber (Part 1)

Continuation of the series:

Lines – Glass

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As a person with developmental disabilities, I get a lot of autism stereotypes and a lot of intellectual disability stereotypes thrown my way. That means some people expect me to be a heartless mind and other people expect me to be a mindless heart.

And they actually believe those expectations to be honoring my strengths.

But that’s not necessarily how it works. There are autistic people with huge strengths or interests in social areas. There are people with intellectual disabilities whose main strengths or interests are intellectual. We don’t have to have a stereotypical set of strengths. […]

And people will either doubt your disability or doubt whether you really have the strengths and interests you do.

They’re always trying to prove that autistic people’s empathy isn’t real, that the intellectual achievements of people with intellectual disabilities isn’t real, that autistic people can’t be compassionate and people with intellectual disabilities can’t be geeky or nerdy or have cognitive talents.

And they’re always trying to say that different disabled people are allowed to have certain things and not others.

Each type of disabled person is supposed to be missing one thing and have something else: Body, mind, heart, whatever.

So we have bodiless minds, mindless bodies, heartless minds, mindless hearts, and whatnot, and that’s supposed to be a good way of looking at us!

The truth is that however you divide it up, every person really has a mind, a heart, a body, a soul, whatever you want to call these things. I don’t personally divide people up that way, but if you’re gonna, those things are universal. Disability doesn’t mean one of them is missing.

Mel Baggs

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The idea of some shared humanity is just that: an idea. One that is too often used to exclude and dehumanize people. But I do think that it can be a useful idea if it’s deployed just so. When it comes down to it, we are all just animals fumbling around on a rock. That is what it means to be human. We do not always make each other feel at home here on Earth, but none of us is truly an outsider, either. We all belong here. None of us are strange visitors who can only hope to be tolerated and accommodated.

Caroline Narby

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Abnormal is often shorthand for extreme. Ah! they say, you simply fail to understand the spectrum! Yes we all experience a little of this and of that, but until you’ve seen mania full blown, an acute psychotic episode, someone so debilitated by anxiety they cannot leave their house, you simply can’t appreciate what real mental illness looks like. This definition seems to work until you look at other examples of ‘extreme behaviours’, at social activists who put their lives at risk for a cause they are passionate about, at kids moving across the country to have a chance to train in the artform they eat and breathe, all the hope and joy and optimism of a couple in love and about to get married. Extreme can be dangerous, can be horrifying and destructive. But it’s also the place of hope for so many, their centre, their joy.

Sarah K Reece

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I don’t know who invented the idea of a carefree childhood, but such a myth has never been the case for the majority of children in the world.

I never felt cheated out of a childhood, despite experiencing some of the things that a lot of people seem to whine on and on about in that respect. […]

Just as some parents believe they’re entitled to a perfect child (where perfect is defined by some pretty biased standards of perfection, at that), some people believe they’re entitled to perfect (again, pretty biased standards of perfection) relatives in general.

I have to believe that this sense of what the stages of life are supposed to be like, and what people are supposed to be around for others to relate to, that somehow excludes the experiences of probably the vast majority of people on the planet, is relatively recent, and entirely mythical.

Mel Baggs

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‘Normal’ people still get sad.
‘Normal’ people still have self-esteem issues.
‘Normal’ people still wish they were someone else.

There’s this misconception among some people that ‘normal’ is this beautiful land of milk and honey and double rainbows, where nobody has any problems or is ever made to feel inadequate.

Chris Bonnello

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[We’re not only autism, but] an intricate amalgam of our innate character traits, our strengths and weaknesses, our personal histories, our thoughts and desires and fears and embodied experiences of the world.

[Like everyone else, autistics have] many of the common experiences and challenges of growing up that most adolescents and young adults experience. […]

People learn and grow and are affected by their histories as they age. People become competent at dealing with the circumstances of their own lives. […]

Just because we’re new to many non-autistic people’s conception of the world, doesn’t mean we’re actually new to the world.

chavisory

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[…]  I have this niggling suspicion, though, that there are an awful lot of people in the world who have been told that they don’t count, don’t get to be in the stories, things were never quite bad enough, or maybe they were too bad to be real. I have this feeling that there are an awful lot of us, and that if we just stopped keeping ourselves a secret, we might blow that lie out of the water.

Julia Bascom

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In recent years, I’ve noticed that we tend to divide the world up into ‘trauma survivors’ and everybody else. But I’m not sure this distinction is entirely real; I think what we’re actually dealing with is people who know they’ve been traumatized and people who have forgotten. Or maybe the division is between people who are visibly shaken by their trauma and those who look solid; after all, we live in a society that places an extraordinarily high value on appearances, where people get a lot of credit for acting as if everything is fine, and a lot of criticism (or pity) for letting their pain show. […]

Lundy Bancroft

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Isolation from support and reassurance is the essential part of the trauma. I was surprised when I first learned that people who are put thru traumatizing experience, if they immediately get support, comfort, reassurance and love, both during the trauma and afterwards, they mostly don’t develop post traumatic stress disorder, they’re able to process and incorporate it. Basically, a human’s ability to accept and survive trauma largely depends on how supported they are, on having a strong community and knowing things will once again, be okay. […]

Furious Goldfish

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