Atmosphere – Rays (Part 3)

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When I say things like “I don’t believe in the diagnoses in the DSM,”

that does not mean I think people are faking it, or making their experiences up. […] Their experiences are absolutely, definitely real.

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I agree that we need a language,

but I disagree that the DSM provides a good one. […]

Out of context, Sarah K Reece

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Diagnosis recognizes reality; it doesn’t create it.

The way medical diagnosis works can often make disabled people feel fake. (Any kind of disabled people, including people with mental illness or chronic illness). There’s a widespread culture misperception that real disabled people have a clear professional diagnosis, and that everyone else is just faking it for attention or something. It doesn’t actually work that way. Diagnosis is more complicated than that.

People with disabilities are disabled whether or not anyone has diagnosed their disability. […] But it doesn’t change the reality. Someone diagnosed today was already disabled yesterday. Many people are disabled for years or decades before they get access to accurate diagnosis. […]

In addition, some conditions aren’t currently diagnosable, because they have not yet been identified and named by doctors. If a condition was discovered for the first time today, someone had probably already had it yesterday. And last year. And back and back and back. […]

Ruti Regan

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Words, like the chisel of the carver, can create what never existed before rather than simply describe what already exists.

Martin Heidegger

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Was There an Autism Before the Name?

Were we here before the world called us ‘autistics’?

Was there an ‘us’ or a ‘we’ before we and the world called ourselves so?

How were we, autistic people, autistic, before we actually were autistic?

Adapted from writings by Dallyce Potess

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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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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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