Compliance

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People who can’t say no, can’t say yes meaningfully. […] Making the best of a bad situation isn’t consent.

Ruti Regan

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when you’re working for rewards, not getting them is a punishment

Birdmad Girl

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Successfully modifying a behavior is not the same as understanding why someone was doing something, and it is not the same as meeting their needs.

Ruti Regan

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[…] ‘compliance’ as if it were the answer.

Just follow this beautifully laid out plan replete with measurable goals with neat little timeframes and clearly named people assigned to each intervention, and all will be right with the world!

what must someone give up of their own desires, wants and most intimate beliefs in order to give in?

While non-compliance isn’t an easy answer anymore than compliance is […]  Non-compliance saved my life.  And not because I did brilliant things instead of what people were instructing me to do.  I absolutely did quite the opposite of that.

But I got to keep my fire and my sense of self while doing an array of stupid and risky things, and what that meant was that when it came time for me to get a little smarter about living, I had the energy and drive left to do something about it.

Out of context, Sera Davidow

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[…] It relies on continuous extrinsic motivation, which means conditioning the person it’s being done to to comply with a lot of things that they’re actively unwilling to do for several hours a week over and over. It means making them do things that make no sense to them, over and over for many hours a week. That’s dangerous. It’s especially dangerous for people with disabilities who have complex communication needs.

It’s dangerous to make a kid do things that make no sense to them over and over and over while relying on extrinsic reinforcement. That teaches them that people in positions of power can do whatever they want to them, and that they have no right to protest or understand or influence things. It leaves people subject to it very, very vulnerable to abuse. Extreme conditioned obedience is dangerous, and it’s the most persistently reinforced behavior in it. It’s generalized to other environments, and does not go away once therapy ends.

Ruti Regan

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Next (Part B)

Atmosphere – Rays (Part 2)

Previous

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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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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.

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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.

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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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Next

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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Next

Atmosphere – Snowflakes (Part 1)

Previous

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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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